tag:blogger.com,1999:blog-21423496624799088322024-03-05T14:50:36.906-06:00Major Dad - Family Life with Autism, twins, and the MilitaryFollow the ongoing adventures of this family of five as they work their way through Military life, and raising a little boy and the spectrum and boy/girl twins!Anonymoushttp://www.blogger.com/profile/08674636458942848224noreply@blogger.comBlogger19125tag:blogger.com,1999:blog-2142349662479908832.post-54704407528552645542014-09-08T18:29:00.000-05:002014-09-09T17:38:10.931-05:00A Funny Little Thing Called LifeIt has been an incredibly long time since I have posted here. I had every intention of posting sooner, but life just seemed to keep getting in the way. The last post was almost 15 months ago. Since that time, many things have happened in our household. The easiest thing is to start with a quick update, although for those of you who read Lily's blog, you are already up to date.<br />
<br />
As you can imagine, summer 13 was challenging. Jake was home every day with Lily, and try as we might to get him involved in programs so that he could have a structured day like his school year....well, that wasn't meant to be. I am sure many of you experience similar summers. School is out, and with it, a large chunk of the structured day goes with it. This has been an issue for us every year since Jake was diagnosed, and Summer 13 was no exception. I addition to that, things were very busy for me professionally at the time. It was all I could do to keep moving forward. The next thing I knew, it was already the holidays, and I hadn't written. By that time, I found out we would be moving in the summer of 2014 - and we have - to Patrick AFB, which is near Melbourne, FL. We were very excited about the move.<br />
<br />
You can also see that the title of the Blog has changed, from Captain Dad to Major Dad - I promoted to the rank of Major effective 1 March 2014. That was a very happy day for the family....Jake, Max, Miriam and Lily all were involved in the ceremony as well as my parents. For a JAG, Captain comes very quickly, Major feels like it takes forever, so it was nice to finally reach that career milestone.<br />
<br />
We also had some other fun activities this year. Growing up, I was an avid skier, and annual family ski trips were something my brother and I always looked forward to. With Jake's diagnosis, I wondered if I would ever get to experience that again. My brother had also been trying to get me to come ski with him at Mammoth in California for several years. I always begged off, because it wouldn't be fair to leave Lily with all three kids so I could go ski. This past year, my brother finally wised up. When he approached me with a ski trip idea, he pitched a different deal. He had done his homework and found out that Mammoth has an adaptive program (Disabled Sports Eastern Sierra), which works well with kids on the spectrum. He then went to my Dad and got my father to agree to pay for Jake's lessons and the condo. Basically, I was on the hook for flights, and the rest would be taken care of. So Jake and I went, and it was a marvelous experience. I cannot say enough positive things about DSES. They had 2-3 instructors with Jake at all time, and he took right to being on the slopes. After that trip, we talked about taking our own family trip next year. More on this in subsequent posts.<br />
<br />
By the time I had gotten back and promoted, we were knee deep in trying to get through EFMP clearance. I tried to follow my own advice and get ahead of the curve, but as anyone who has gone through it knows, EFMP clearance is a pain. The next thing you know, we were en route to FL, arriving at the end of June. Then the challenge was getting Jake into therapy as soon as possible. I found a day camp for the twins for July, so at least they had some activity. It was at that point that I made an error. I had already gotten Jake on the waiting list at the elite clinic in the area, and instead of getting him into a stop gap therapy while we waited on this waitlist, we sat back hoping the phone would ring (he was at the top of the list). Well the phone didn't ring all summer, and this presented an additional challenge for Lily. I've previously written that you hope for the best and prepare for the worst, and in this case, I failed to follow my own advice. In the meantime, I was adjusting to a new job with new responsibilities. It was a lot for the family to deal with. I think we are through the worst of it, with Jake being back in school, the twins having started kindergarten, the house being unpacked, we finally have a routine....for now.<br />
<br />
I know this is a helter skelter post, but that is the thumbnail version of the last year. Now that I am writing again, there will be more regular posts (maybe not every week, but more regular). I've tried to always convey a message of hope, and as I watch my son on the couch as I type, I still have that hope, but have had some doubt too. I look forward raising awareness to the issues that we as parents of a child on the spectrum face.Anonymoushttp://www.blogger.com/profile/08674636458942848224noreply@blogger.com1tag:blogger.com,1999:blog-2142349662479908832.post-17192813840106671982013-06-15T07:34:00.004-05:002013-06-15T07:34:55.142-05:00Happy Father's DayI know it has been a long time since my last post, a hiatus if you will. Things have been busy in our household - Lily and I had a much needed trip which we tacked on to a business trip that I had to Europe. Since then, it has been settling in and trying to get back into a routine. As is typically the case when we go away, Jake has had the hardest time adjusting back. He has become very clingy to Lily, and, as Lily referenced in her most recent blog post, has been hitting.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdZIM_MjIuT5ERc3TiZcX_v_lZgwxR089L8eSlYr0lHbFa8LJ_11dRZp3ugSJYIYtd7rzs-YiyhyInTH4wMM-b-2okzZWdqiBSkndqGSmnxazx-Rav6-4PPGFwhwKU8WLMF-va1TBpTfc/s1600/0137+ROB_0205rm.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdZIM_MjIuT5ERc3TiZcX_v_lZgwxR089L8eSlYr0lHbFa8LJ_11dRZp3ugSJYIYtd7rzs-YiyhyInTH4wMM-b-2okzZWdqiBSkndqGSmnxazx-Rav6-4PPGFwhwKU8WLMF-va1TBpTfc/s320/0137+ROB_0205rm.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Me and Jake (age 3) at the Beach</td></tr>
</tbody></table>
The adjusting is tougher because of the added issue of what to do over the summer time. I am sure many of you who have kids on the spectrum will agree, the summer is often the most difficult time raising a child with Autism. During the school year, Jake is in a very structured school program, and then has therapies scheduled every weekday at home. There is some free time (not too much), and he knows what is expected. In the summer, it is hard to find similar programs. We have Jake enrolled in a couple of Special Camps, one in July and one in August, but those are only 5 days each. What do you do with the rest of the time? <br />
<br />
Last summer we didn't really have a good answer for that, and Jake, for the most part was at home with Lily. That simply was not a workable solution for either of them. I would often come home from work last summer, and it was clear they each needed a break. This year, we tried to enroll Jake in a local day program that has worked with Special Needs Kids in the past. Jake has had a hard time adjusting so far. The opening few days of the program were very unstructured, and Jake had a hard time getting into a groove. By the time they tried to implement some structure, it was too late for a seamless transition. I find with Jake, if the structure is set from the outset, things go much smoother, but if you try to add it in later, he doesn't understand why things are changing. It was touch and go for Jake at the beginning, but I think ultimately the program will work out for him. It isn't an ideal solution, but it is a workable one.<br />
<br />
How does Father's day fit into all of this? Father's day comes during the summer, which for us, is a very chaotic time. Add this to the fact, that at 6 and a half, Jake still doesn't really appreciate, or acknowledge what is going on around him, particularly with regards to holidays, which makes things tough. They get even tougher when the 4 year old twins do know what is going on and wish me Happy Birthday (which was last week) and Father's day. It highlights even more where Jake is and the fact that while there is progress, he isn't closing the gap with his peers.<br />
<br />
It is easy to focus on the negative, but I think it is important to step back and focus on the positives. So what am I thankful for as a Father this year? Well, even though Jake hasn't closed that gap as much as Lily or I would like, he has made progress. His speech has improved, he is coming up to Lily (and less often me) and kissing us. He has started (very intermittently, but it is a start) to answer questions. He has even started to try to interact with the twins, and to a lesser extent his peers. These are all very big things for him and for that I am thrilled. <br />
<br />
The twins also had a great year. They are both potty trained, their speech is improving, and they are really becoming their own people. They also love each other and their brother very much. Max is very protective of Miriam and Jake, and that really makes me happy, because I know Jake in particular will need that as he gets older.<br />
<br />
On a Saturday morning, with all the chaos that 3 kids can bring, I can look out and appreciate how lucky I am to be a father to this brood. Dads - we all need to take a chance this weekend to focus on what we have and where we are as a family, not necessarily where we want to be. Being a father to children, special or typical is a serious responsibility. It has serious rewards too, enjoy those rewards this weekend. Happy Father's day to all the dad's out there!Anonymoushttp://www.blogger.com/profile/08674636458942848224noreply@blogger.com1tag:blogger.com,1999:blog-2142349662479908832.post-56692300470516142562013-04-06T09:48:00.001-05:002013-04-06T09:48:43.198-05:00Going on a Mission - and Skittles!As I've mentioned on previous posts, one of things that Jake and I do is go on missions. This comes from Little Einsteins, when they have an activity to do, they all shout "We've got a mission!" After the twins were born, even before Jake was diagnosed with Autism, I knew it would be important for he and I to have activities for just the two of us. At the time, his favorite show was Little Einsteins, so I would say to him "We've got a mission!" and he would be very excited to come with me. These didn't have to be huge endeavors, heck a lot of times, we just went grocery shopping. It was just a nice time for he and I to have some time together.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgo53PxbxeXEJr3WjTpATzC_EsYuDKB21IHSpxGZtmShLFMsAUSXEKAoa1r2bHIGpGqRDbhM7ggS5iKivPb6wnZ9aJPoHmWaKK5amD3UQtK3ceYP3tPDBYehgzh3tTW5X7z9aNuvH-sqow/s1600/0009+ROS_0249rm-2.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgo53PxbxeXEJr3WjTpATzC_EsYuDKB21IHSpxGZtmShLFMsAUSXEKAoa1r2bHIGpGqRDbhM7ggS5iKivPb6wnZ9aJPoHmWaKK5amD3UQtK3ceYP3tPDBYehgzh3tTW5X7z9aNuvH-sqow/s320/0009+ROS_0249rm-2.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jake at 3 and the twins at 6 months</td></tr>
</tbody></table>
<br />
I could tell right away that Jake was not a huge fan of the twins. When my mother-in-law brought Jake to Wilford Hall the morning after the twins were born, Jake was so excited. He came running into the room smiling. He was very happy to see Mom and Dad. I had recently returned from my deployment, and Jake was always more than a little nervous if I had to leave after that. He jumped into bed with Lily as I was holding baby Miriam. And then, the strangest thing happened - he heard me talk to his sister like we talked to him - using terms of loving endearment. It was like a light bulb went on. You could almost see the thought bubble - "wait just a gosh darn minute, why is he talking to that little blob like he talks to me....that isn't right." He ran from the room and would bodily refuse to come into the hospital room after that. If I don't go in, maybe those little babies can't come out. Just maybe these little flesh blobs that mom and dad seem so enamored with will go away. It was in this light that Jake and I began going on missions. Oh, Jake did ultimately warm up to the twins, but we still do our missions!<br />
<br />
So, a couple of weeks ago, I took Jake out to go on a mission. I had to get a tennis racket restrung, and was going to by him new shoes at a sporting goods store. A few things you should know about Jake. He loves candy, specifically skittles. Why skittles? Not really for the candy itself, Jake loves colors and rainbows, and there is a huge rainbow on a package of skittles, so he likes to hold the package. When we got to the pro shop to restring my racket, Jake immediately gravitated to the candy aisle. I didn't want to buy him candy there because I wasn't going to pay for my racket until I got it back restrung. So I told him I would buy him skittles at the sporting good store. That didn't mollify him much, but just enough for me to get him out. Jake has been having more tantrums lately, and as soon as we left the tennis shop, he started squealing and jumping up and down.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0oCttP4q7rW_WcKaNva3D0KiukXjJ_g57n_saYDH5_JTNXOAI3jMPTfKhIQjsR28RsWb1JXdeoGAArYJhlvRp723xKn32Y2X7WTPga7NpVKnU05YrOggWcqIf2IcdOs65Itn31ik0xG4/s1600/IMG_5001.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0oCttP4q7rW_WcKaNva3D0KiukXjJ_g57n_saYDH5_JTNXOAI3jMPTfKhIQjsR28RsWb1JXdeoGAArYJhlvRp723xKn32Y2X7WTPga7NpVKnU05YrOggWcqIf2IcdOs65Itn31ik0xG4/s320/IMG_5001.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jake - Age 6</td></tr>
</tbody></table>
I managed to get him in the car and we got to the sporting goods store. He was very well behaved while we tried on shoes, and we got to the checkout, they only had a HUGE size of skittles. Now, I know I promised my special guy skittles, but there was no way I was going to let him have such a big container. He's already lost teeth to do abscess, and a big thing of skittles was not a good idea. So....I told him I'd get him the skittle when we got back to the racket shop.<br />
<br />
I can only imagine what Jake was thinking at this point, probably something similar to that day he saw Miriam the first time. Wait a minute, what the heck dad, you told me I could get it here, and now you're telling me I have to wait to go back to the place you already told me I can't have them! Somehow I managed to stave off the tantrum and we went back to the tennis shop. Jake made a bee line for the skittles, and I let him....<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLa-vPCdDdzAz2XHm2zO4gEgbFNi-i6i2GvEpI8kiRXfRz_pGNfIvWMJ6Aa0K1BZrhRDjaDabbAW8V4vFo0T8kuEyLcalWabBooiwUizU0LrQz5SGfNLzW__eH-HfHLxlItZT2eN0nv0Q/s1600/IMG_1528.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLa-vPCdDdzAz2XHm2zO4gEgbFNi-i6i2GvEpI8kiRXfRz_pGNfIvWMJ6Aa0K1BZrhRDjaDabbAW8V4vFo0T8kuEyLcalWabBooiwUizU0LrQz5SGfNLzW__eH-HfHLxlItZT2eN0nv0Q/s320/IMG_1528.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jake and I on a mission</td></tr>
</tbody></table>
Not our best mission ever, but at the end of the day, Jake got what he wanted, and I got the stuff we needed as a family. I felt really bad for him though, because I probably should have just bought the skittles the first time around! Oh well, that is a lesson for me, but in the end it all turned out all right. I guess the takeaway here is you don't have to be perfect, but you have to be there for your special guy and you need to make sure he has some special time just you and him, even if he is pissed you jerked him around about skittles for 90 minutes! I hope all your missions go better than this one did.Anonymoushttp://www.blogger.com/profile/08674636458942848224noreply@blogger.com0tag:blogger.com,1999:blog-2142349662479908832.post-49432037628785574602013-03-16T09:38:00.000-05:002013-03-16T09:38:15.953-05:00March MadnessFor those of you who read the title and automatically (as in automatic bid) thought this would be a college basketball post, well, you are mostly wrong. Yes, as we enter mid-March, it becomes that time of year when the annual NCAA basketball tournament happens, it is also can be a time of madness at home too! Think about it - it is the tale end of winter, wild temperature changes are happening which results in the kids (and maybe Mom and Dad too!) being sick, everyone is excited to be outside again, Spring Break for the kids is coming up, Spring cleaning is happening, Passover, Easter, a time of general change, and well, madness! I have the added complication of being in the middle of a very busy time at work, and more than a little upheaval and uncertainty in what the rest of my year will look like due to sequester.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5peCPf0_iMH6VlmZh8hb5Suco6w2M6Uk9FxsgHUxRqbomJYSvDLWlfMPRijyAMUKJHHqO8j_StjCvpVdCOJrGmnb3FaXiBHLl8tZyr7uXXzBPha_5F6-QzymTTgw276atYlgLJJKNBxY/s1600/IMG_0762.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5peCPf0_iMH6VlmZh8hb5Suco6w2M6Uk9FxsgHUxRqbomJYSvDLWlfMPRijyAMUKJHHqO8j_StjCvpVdCOJrGmnb3FaXiBHLl8tZyr7uXXzBPha_5F6-QzymTTgw276atYlgLJJKNBxY/s320/IMG_0762.JPG" width="216" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Me and Jake at the Auburn/Florida game</td></tr>
</tbody></table>
So how do you deal with the madness in general? I think it is important, now, more than ever to take a little time for yourself, and time to be with your spouse in order to not lose track of the big picture and things that are important to you. Now is the time for date nights, a short weekend away if you can afford it, or even 30 minutes doing something just for you.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnKATslc9qI-_Jwmah5x_0oYj04W_RMA5LOTq6NXi9_rv4rPKlDJN5mqocZDCKpCanWJNP__Kno9Twpe9DQjlQib-O23SxLj8e4NYsFk_f-C6GHq5CIfpnLJXbQ9vGEzt2Bl6BSXRPhg4/s1600/IMG_0418.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnKATslc9qI-_Jwmah5x_0oYj04W_RMA5LOTq6NXi9_rv4rPKlDJN5mqocZDCKpCanWJNP__Kno9Twpe9DQjlQib-O23SxLj8e4NYsFk_f-C6GHq5CIfpnLJXbQ9vGEzt2Bl6BSXRPhg4/s320/IMG_0418.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Grandpa, me and Jake - 3 generations of sports nuts at Grandpa's birthday</td></tr>
</tbody></table>
In the last couple of weeks alone, we have experienced some very significant change. For starters, everyone in the family had been sick. Max was so ill earlier this week he missed 3 days of his school program with a fever/ear infection. As I mentioned above, I have hit a busy 4-5 week stretch at work. On top of being busy at work, I got the very good news that I have been selected for promotion to the rank of Major. Being selected is a very nice moment for me, and something that happens only an handful of times over a 20 year career. Of course, mere selection doesn't mean I get promoted immediately. In fact, it probably won't happen until early 2014. However, I am now able to start working on my next level of Developmental Education. Based on where I want to go and what I want to do next with my career, decisions that balance (precariously sometimes!) the Air Force's needs, the family's needs, my professional needs and my personal needs, I am having to undertake that new challenge immediately and with some urgency. While this is a worthwhile endeavor, and enjoyable, it adds to the madness.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihRjvPc3XioIapUixvqPQ0Z1lOspJ1G4Pt8j1-pkDMZQ_N7uttLxGIACVrtb3KIqtx6RlCBhBhdfZQqXi2bEGm6OV_xOPEGf_nrXW6wpWPmUG3auAVb1_dXSOdxa2fjvOR2HAsV3nTSVE/s1600/IMG_3354.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihRjvPc3XioIapUixvqPQ0Z1lOspJ1G4Pt8j1-pkDMZQ_N7uttLxGIACVrtb3KIqtx6RlCBhBhdfZQqXi2bEGm6OV_xOPEGf_nrXW6wpWPmUG3auAVb1_dXSOdxa2fjvOR2HAsV3nTSVE/s320/IMG_3354.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Me and Jake at a Seattle Sounders Game</td></tr>
</tbody></table>
And here is where sports come in. As it turns out, I am a bit of a rabid sports fan (much to Lily's chagrin). While it is very hard to get Jake to understand the nuances and in's and out's of a sport, he actually does like to attend live events. I was actually very surprised by this, because I thought he would be overwhelmed with sensory inputs, and well, would melt down as a result. If anything, the exact opposite has occurred. With so many people around making, essentially, white noise for him, he blends. No one really notices if he vocally stims or makes noise. Being a big fan of music, he enjoys the pageantry, the cheers and the band. I can take Jake to a college or pro basketball game, and with a popcorn and soda, he will sit quietly in his seat for the entire game! The twins, on the other hand, actually are taking an interest in sports. Probably the funniest thing of watching sports with them is that they like to imitate me. I say funniest, I mean for me, Lily and Jake are not big fans of my yelling. Being a rabid fan like I am, I have a penchant to occasionally yell at the TV. Those of you who are sports nuts understand, if you aren't, well, adults can have idiosyncrasies as well. The twins will yell right along with me, which makes it even more fun for me!<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5YusHowt0Mws7CbTDGdZpzn-gOkEqQAYNBg-i7McespmPBxRVUvsrvXc8t4DO58uZaDHdAh1wKqVUulE1agXfk3KSr9EuBbZa7xETcK-_ltxNmQX6TqB5mhotUFH6CcwYuqvT8jwYEQk/s1600/IMG_2231.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5YusHowt0Mws7CbTDGdZpzn-gOkEqQAYNBg-i7McespmPBxRVUvsrvXc8t4DO58uZaDHdAh1wKqVUulE1agXfk3KSr9EuBbZa7xETcK-_ltxNmQX6TqB5mhotUFH6CcwYuqvT8jwYEQk/s320/IMG_2231.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Miriam - My Gator super fan in the making!</td></tr>
</tbody></table>
With March Madness approaching in the literal sense, I have a chance to unplug a bit, and enjoy, along with millions of other Americans, basketball. My Florida Gators will be playing, and the key will be to see if they peak at the right time. Plus, many of my friends and colleagues are fans as well, so it gives us all something non-work related to discuss and focus on. In short, just the kind of break we could all use in an otherwise mad mad March! I wish everyone a break from their personal March madness, to enjoy, follow (and yell if that is your thing) for your team in the approaching NCAA tournament, and Go Gators!Anonymoushttp://www.blogger.com/profile/08674636458942848224noreply@blogger.com0tag:blogger.com,1999:blog-2142349662479908832.post-290321709767521322013-03-02T09:58:00.001-06:002013-03-02T10:09:22.804-06:00Reading Tea LeavesSometimes diagnosing an illness for a child with Autism, particularly one who is only partially verbal is like reading tea leaves to find out our fortunes. We have had to experience this with Jake on several occasions. This is particularly tough as a parent, because more than anything, I want to make sure that my little guy isn't suffering unnecessarily. Couple this with the fact that Jake, like many other children on the spectrum, has a higher than normal pain tolerance, and it makes for an interesting time.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-nwLyP9XfpB6DKP0165E5oLS55soniJFUE93KETii4OPA7v3rOyg99AzKgjI610r1hKzgSScnYpFEjhnGvzKzOtjfpQtHdQmhkCBuEak-SABhxNj8axupe0M6-nfgFW73xaOZ0ZbOYko/s1600/DSC_0168.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-nwLyP9XfpB6DKP0165E5oLS55soniJFUE93KETii4OPA7v3rOyg99AzKgjI610r1hKzgSScnYpFEjhnGvzKzOtjfpQtHdQmhkCBuEak-SABhxNj8axupe0M6-nfgFW73xaOZ0ZbOYko/s320/DSC_0168.jpg" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jake and Puppy in San Antonio</td></tr>
</tbody></table>
Jake has always had a higher than normal pain tolerance. I remember when he was still a baby, 8-9 months old, the only time we would know that he had an ear infection was when he finally spiked a fever. He never pulled or tugged his ear, or expressed any discomfort at all, right up until he spiked a 102-103 degree fever. This was alarming at the time because it was very hard for us to pick up the signs that something was causing him distress. At the time, we assumed this would improve as Jake became verbal. Alas, this has not been the case.<br />
<br />
Over the last few years this has been a recurring theme for Jake. Sometimes we won't know how out of sorts he does something really out of character for him, like falling asleep on the couch in the middle of the afternoon, or throwing up. Lily and I, over the years, have gotten pretty vigilant with Jake about trying to figure out if he is off, and then why....reading tea leaves if you will. It certainly makes the visits to the Doctor interesting....<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIy3bucyIYs5KLPyyVyS_6fy4nh5_j7nc41LDAaXfUsnGivMhBbjg57sEv0-1lppVmS-Aj9CB5z5bZWk0TFitr0xxnY4FEufjo-MhBV8nj1AiHhTodB1JKuIRlE7jBeGSOGfQCmUVXCBI/s1600/IMG_0241.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIy3bucyIYs5KLPyyVyS_6fy4nh5_j7nc41LDAaXfUsnGivMhBbjg57sEv0-1lppVmS-Aj9CB5z5bZWk0TFitr0xxnY4FEufjo-MhBV8nj1AiHhTodB1JKuIRlE7jBeGSOGfQCmUVXCBI/s320/IMG_0241.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jake on our front Porch in San Antonio</td></tr>
</tbody></table>
Take for example, the time, Jake rubbed his eye, and scratched it. It got to the point where he couldn't open his eye but kept rubbing it with his fingers (sometimes right after they had been in his mouth). That leads to an interesting discussion with the eye doctor. "How did he hurt his eye?" I don't know Doc, I guess he was rubbing it until he scratched it or something. "Little boy, where does it hurt?" - No response (other than a high pitched squeal). So how do we treat something like that? It usually requires me bodily restraining Jake and then having a nurse hold his head so the Dr. can pry his eye open and get a look. As you can imagine, the next 10 days of applying ointment or drops to his eye are an adventure, usually involving some version of me sneaking up on Jake or bodily restraining him and getting the ointment in.<br />
<br />
Why is this fresh on my mind this week? Well, this week, it appears that Jake has either really bad allergies or a cold. It's hard to say which, I mean, he isn't going to tell me all the things that are wrong, so Lily and I have to read the tea leaves and figure things out. What do we know? Well, Lily had a sinus infection last week, Max has been sniffly (as have a lot of kids in school) and starting about Monday, Jake had a healthy amount of congestion come on. By Thursday, you could see that his face was irritated from all the times he had wiped it. I'd like to say on a kleenex, but more than likely it was his sleeve.<br />
<br />
That brings up a funny interaction he had yesterday - in Applied Behavioral Analysis (ABA) therapy, he asked his therapist for a tissue. This is a HUGE deal, he appropriately, spontaneously, requested something that he needed. His therapist was THRILLED. As she turned to grab him a tissue, he leaned down and wiped his nose on her sleeve. So close! Through all of this, he has maintained a wonderfully sweet attitude (mostly). I love watching Jake when he is engaged in some activity, he gets such a sweet look on his face when he does something right. I accept and love Jake for who he is, but I still can't help sometimes watching him sleep, and thinking, even for a second, that he might wake up one day, give me a big hug on his own, and say good morning Dad. The thought passes and I prepare for another day of working my way into his world, so I can bring a little more of him back into ours.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqjWamFid6Schh7oGLR2w3YaK7vYRZNzDzHiqs5D3u2ZXtHEorSEGdZ6qGwZXrEj-86olrEBBfOOwM4dE_pyk8LzWRua1gOaBhow70KgTYHxR43yyCfSbCYzp4JwaLVep1_dR74oNlrxY/s1600/IMG_4997(1).jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqjWamFid6Schh7oGLR2w3YaK7vYRZNzDzHiqs5D3u2ZXtHEorSEGdZ6qGwZXrEj-86olrEBBfOOwM4dE_pyk8LzWRua1gOaBhow70KgTYHxR43yyCfSbCYzp4JwaLVep1_dR74oNlrxY/s320/IMG_4997(1).jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jake and me in Montgomery</td></tr>
</tbody></table>
By this morning, Jake's sinuses appear infected, due to the yellow discharge. We are trying to help him out with over the counter medications, but aren't getting any feedback from him as to whether it is working. Max has taken a real interest and has been asking Jake if he is ok (no response), and generally trying to comfort him. We plan on having Jake taking it easy and getting some rest so he can get better. Maybe some day he can tell us exactly what is going on with him, until then, we'll keep reading the tea leaves.Anonymoushttp://www.blogger.com/profile/08674636458942848224noreply@blogger.com0tag:blogger.com,1999:blog-2142349662479908832.post-89786977058337430442013-02-23T09:52:00.000-06:002013-02-23T11:33:38.742-06:00Moving/PCS'ing - Now what?In talking to many of my Air Force friends over the last couple of weeks, it sounds like everyone is starting to find our their assignments for next year. This can be a very exciting time for some, as we anxiously await the chance for a change of scenery. For those of us with a special needs child, there is an added layer of difficulty of having to clear EFMP before you can go. Back in December, I wrote a post about Assignments and the EFMP process (<a href="http://alexjrose.blogspot.com/2012/12/assignments-and-exceptional-family.html">http://alexjrose.blogspot.com/2012/12/assignments-and-exceptional-family.html</a>), this is the second of a three part post on PCS'ing (Permanent Change of Station, or moving for the non-military types out there ;) ). There will be a third post on the actual EFMP process later in the Spring. For now, I want to focus on the things you can do once the assignment comes down to smooth the overall process over.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbLtddv-ktWSagoN_XlpXyGHrPEp88TaV_NTuyOKBrXwoiIRDIHJNcM4GSbzR5RwghMlFd4hAeGeX2tCzrzw00aXMJjdrG5bvBEvkU-lBQJmr6hV8Xc5agyxo5pT9T9NoTWXHEFOUKMus/s1600/IMG_0328.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbLtddv-ktWSagoN_XlpXyGHrPEp88TaV_NTuyOKBrXwoiIRDIHJNcM4GSbzR5RwghMlFd4hAeGeX2tCzrzw00aXMJjdrG5bvBEvkU-lBQJmr6hV8Xc5agyxo5pT9T9NoTWXHEFOUKMus/s320/IMG_0328.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">On our way to our new home in 2011</td></tr>
</tbody></table>
Hopefully you did your homework before submitting your Dream Sheet of assignments to personnel. If you have done so, then anything that was on your list should be a place you had vetted for adequate services. Now that the actual assignment has come down, it is time to finding specific therapists at your new location. I know, some of you are thinking, it's 4-5 months before the move, can't this wait? The simple answer is no. When we moved from San Antonio, TX (an area with a great variety of resources) to Montgomery, AL (an area with more limited resources), I began the process early, and I am glad we did.<br />
<br />
The first thing I did was contact my ECHO (Extended Care Health Options - the supplemental military insurance which covers the all important Applied Behavioral Analysis Therapy) case manager. We then had a conversation about who the case manager for the gaining base would be. Once I had that information, I called the case manager for the new area and obtained a list of ECHO approved ABA therapists and TRICARE authorized Speech therapists and OT's. This is a good start, but it is by no means the end of the discussion. How do you pick a therapist from a sheet of paper when you are trying to do right by your special needs child? A great starting point is your current ABA therapist. Board Certified Behavioral Analysts, or BCBA's (the ABA therapists) are a fairly tight knit community. They may very well know some of the people on the list and can help point you in the right direction. The EFMP office at your gaining location will also have some information about therapists, and schools in the area and they are another good resource to tap. Finally, web based organizations like AMFAS (American Military Family Autism Support) or the Military Special Needs Network are good places to get useful information from other people in similar situations to you. The key is finding a therapist team at the new location who will work well with your special child.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZ6ON9GbMWDPqQBR2sWHuKnJ0FJU4nUu-iRg7Dclw8Xvs6pr4_1u9PXP5tUxS71S8BnqKsuYNr3dF8r3IY7mvtnGT2S6A0M5b9UP14afaEh48grHZGokh6scc4_dRk4PEttozuQDId5Pg/s1600/IMG_0367.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZ6ON9GbMWDPqQBR2sWHuKnJ0FJU4nUu-iRg7Dclw8Xvs6pr4_1u9PXP5tUxS71S8BnqKsuYNr3dF8r3IY7mvtnGT2S6A0M5b9UP14afaEh48grHZGokh6scc4_dRk4PEttozuQDId5Pg/s320/IMG_0367.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jake in our neighborhood park in Montgomery</td></tr>
</tbody></table>
Once you have a general idea of who you want to go with, start making phone calls. The therapy won't be able to start until you in-process at your new location, but you can make sure the therapist has availability, and fill out the lengthy in house paperwork they all require, that way all you are waiting for is the final referral. It can cut the start time for the therapy from 6 weeks to as little as 10 days at a new location. This is critical. In Montgomery, this was all the more important when it came to Speech and OT, because there were so few therapists in town that there was a pretty serious wait list for both therapies. If we hadn't filled out the paperwork and gotten on the wait list months before the move, EFMP might have cancelled the assignment. Taking these pro-active steps now will make that EFMP outprocessing so much easier.<br />
<br />
I know this is a lot of stuff to be thinking about five months out, when most people are thinking about less complicated issues. My colleagues often laugh at the state of my desk and the fact that while I can find whatever I need on it, it usually looks like a tornado has hit it. They knew I was super serious about this when they saw how organized I was from the get go on this. That isn't to say I'm not organized about my day to day work, I am. That said, the information about Jake's therapies along with the corresponding paperwork needed to be something I, or Lily could immediately put our hands on, even in a car full of stuff as we drove 1,000 miles. That was why I took the time to build a tabbed binder for Jake, and it is a template I'll reuse the next time we PCS.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhj6pxfnFnNyiE5KzzX2fdHU4CcULkNIctJoOCO8PAsvO9CRjaiXnbk62e6BpYBiM7ID-6zZbvqTFBvIYEmusDAxovDEQr7JLsQjuooc4uE8bM-Ev4HocFjzxAPMyl4WzH5MNKSBcklDRo/s1600/IMG_0764.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhj6pxfnFnNyiE5KzzX2fdHU4CcULkNIctJoOCO8PAsvO9CRjaiXnbk62e6BpYBiM7ID-6zZbvqTFBvIYEmusDAxovDEQr7JLsQjuooc4uE8bM-Ev4HocFjzxAPMyl4WzH5MNKSBcklDRo/s320/IMG_0764.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jake and I at the UF/Auburn Football game, Fall '11</td></tr>
</tbody></table>
So, to wrap things up - congratulations on your new assignment - now, let's make sure the actual EFMP clearance and moving process go smoothly! Now is the perfect time to start thinking about and building your new therapy team at the new location. Start making calls now and filling out paperwork. This will make for a much smoother process 4-6 weeks before the move when we have to deal with wrapping up our current therapies and packing up a house. Good luck to all of you in your approaching moves!Anonymoushttp://www.blogger.com/profile/08674636458942848224noreply@blogger.com0tag:blogger.com,1999:blog-2142349662479908832.post-2565531858719305732013-02-16T08:58:00.000-06:002013-02-16T09:00:16.409-06:00Returning to "Normal"For those of you with kids on the spectrum, you know that an established routine is very important. The closer everyone can stay to a consistent schedule, generally speaking, the better off things will be for your little one on the spectrum. Now, Jake is actually pretty good overall with change. We didn't have any real adjustment issues when we moved here from San Antonio, and for the most part, Jake adjusted really well when we went on our 8 day road trip in December to Pittsburgh. That said, even he really likes his routine. An example of that was yesterday, his elementary school program had an early release on Friday. Since he would be home earlier, Lily wanted to push his ABA (Applied Behavioral Analysis) therapy up so that he wouldn't be in therapy so late into the evening. Even though this was a relatively minor change, Jake was a little confused and out of sorts at the beginning of his ABA session, so much so that Lily had to go and comfort him for a few minutes. After that brief adjustment period, he actually went on to have a very productive session. It just goes to show how even a minor schedule change can have real consequences.<br />
<br />
I realize it is now mid-February, but it feels like we are just getting back to normal after the holidays. About five days after we came back from Pittsburgh, Lily's parents arrived for a 2 week stay. They left, and about 8 days later, I went on a business trip to Virginia. I say we are returning to normal, but as I write this, my Dad is driving up from Jacksonville for the weekend, and Lily is fighting off a cold. That said, it still finally feels like we have some normalcy returning. This is definitely helped by the fact that my trip to California for next week was cancelled.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3DPD7dXmbqD9gHxTcjRY9RQLHj0czcty3MFk8R4XQyuAQweBszasDt-1e96VobYd42kj9zgrBOLSrqjaYP4QQBrlcoFp0YaT2k6DTj4CdHEl0AqFgXKP4z5Y9uUtIGEVIYjaWB1OXcFY/s1600/IMG_2252.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3DPD7dXmbqD9gHxTcjRY9RQLHj0czcty3MFk8R4XQyuAQweBszasDt-1e96VobYd42kj9zgrBOLSrqjaYP4QQBrlcoFp0YaT2k6DTj4CdHEl0AqFgXKP4z5Y9uUtIGEVIYjaWB1OXcFY/s320/IMG_2252.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Max & Miriam at Creative Play</td></tr>
</tbody></table>
So what exactly is "Normal" for us? Generally, it is a full week of therapy and activities for Jake and the twins, followed by one of us sleeping in each day on the weekend. By no means are weekends easy. When I was a carefree guy in my 20's, you longed for a weekend, particularly, a long weekend. Now, the weekends often leave me more tired than the week! If it is nice, we try and get outside to a park or something like that, if not, well, we are often cooped up in the house. In the middle of all of this, is the typical work around the house stuff that we all do. We definitely have our hands full.<br />
<br />
With all of that, I am sitting here watching the twins at their goofy play, and Jake is watching a favorite episode of the Backyardigans. In the midst of it all, Jake decides he wants Gummi Bears so he can line them up (coping mechanism for him), and the twins roughhousing ends up with one of them crying. Fairly typical. I redirect Jake with some tickling, and simultaneously comfort Max who fell. All in a "Normal" morning on the weekend.<br />
<br />
"Normal" is critical, not just for the parents, but especially for Jake. In the last week since I returned home, Jake has started on a forward momentum kick again in therapy and school, making strides in all of his programs. "Normal" is so important for him, because when he knows he can rely on a consistent schedule, he doesn't stress about all of those little things, keeping him calm so he can focus on his therapy. <br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVM3Eoy78IUN_atwFmB4KwNfZcdjYLKCmy1BvcU69WqyQgF64LvA08qhYaanhtpBNO3MRA8Qgaq2inYU-TyJoMO7wAujrLjjasuDUF3RIRodhzainayXLyz3BmQQPHRVlHbzW67YjvohQ/s1600/IMG_0288.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVM3Eoy78IUN_atwFmB4KwNfZcdjYLKCmy1BvcU69WqyQgF64LvA08qhYaanhtpBNO3MRA8Qgaq2inYU-TyJoMO7wAujrLjjasuDUF3RIRodhzainayXLyz3BmQQPHRVlHbzW67YjvohQ/s320/IMG_0288.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jake riding at Equine Therapy</td></tr>
</tbody></table>
I've talked about keeping hope, and working hard to give Jake the best he can get out of therapies and life. I've also seen first hand that he knows a lot more of what is going on around him than he lets on. I try to talk to him as we lay down, talking about the things he did and the day ahead. I actually find that it helps him the following day. He is a loving sweet child who, like any other kid, wants the love and approval of his parents. He is really such a sweet child, and nothing gives me a bigger thrill than seeing him hit a new milestone, or for him to smile and laugh. The key now for Jake and the rest of us, is to build some momentum. I hope everyone else has a chance to return to "Normal" now too!Anonymoushttp://www.blogger.com/profile/08674636458942848224noreply@blogger.com0tag:blogger.com,1999:blog-2142349662479908832.post-25880239817784552092013-02-09T09:57:00.004-06:002013-02-09T09:57:54.542-06:00What the Heart WantsOver the last couple of weeks, I have a lot of time to reflect on things. Autism has been in the news a lot with the young boy, Ethan, being held hostage in Alabama. I'm so pleased that he was safe, and can only imagine how scary the whole thing was for him. I wondered as I watched the whole thing unfold, just how much of what was happening to him that Ethan perceived. Without question, he was probably exceptionally out of sorts to have his routine upended like it was. <br />
<br />
This got me to thinking about Jake and how much he truly processes the things that go on around him. I love Jake with all my heart, and it is a little heart wrenching for me to see the twins move further and further past him as they develop. I am thinking about this more and more as Valentine's Day approaches. You are probably wondering why Valentine's Day would trigger this - let me explain.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8KHCo9gdw9ZzKAe64Poy_xVV8c8sEcvH1vS_w1nWCZjueRJKNJk-hWXt3UtK371QqajLiudWL6-YsLsu56ssFZBxhtoBykFxOXYCScDe3xRrteTZ18cLbLDgvJVoYpmv1sXceV6aoVnY/s1600/IMG_0818.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8KHCo9gdw9ZzKAe64Poy_xVV8c8sEcvH1vS_w1nWCZjueRJKNJk-hWXt3UtK371QqajLiudWL6-YsLsu56ssFZBxhtoBykFxOXYCScDe3xRrteTZ18cLbLDgvJVoYpmv1sXceV6aoVnY/s320/IMG_0818.jpg" width="221" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jake on a Carousel</td></tr>
</tbody></table>
I have vivid memories as a kid of Valentines Day. Everyone would set their little bag out at the end of their desk, and the teacher would instruct us all to bring a little Valentine for each kid in the class. It was wonderful as a kid to get little cards from all of your friends. Sometimes you would get some of the heart candy with the words written on it too! The twins are getting to the age where they are beginning to appreciate these things and it is very heartwarming. Two weeks ago, the Child Development Center took Max and Miriam on a trip to the post office where they mailed letters to themselves in envelopes I had previously made out for them. When the envelopes arrived, I made a big deal about how they had mail. The response was touching and hilarious at the same time. Miriam was thrilled and was saying Yeah! She couldn't wait to open her letter. Max on the other hand had genuine surprise. He walked over to me and looked at me with this precious look on his face and said "gosh!" I didn't even know he knew the word. It literally melted my heart to see his excitement. I think it is pretty clear that when Valentine's rolls around later this week, the twins are going to lay down those same kind of early memories that I reflected on earlier. It is going to be wonderful. I am so happy that they will have that kind of positive experience.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaSon-dMTyvuON87KdaLg74OxjVOr953GbfE1qUcGOKX7Q606QogOfnkooxojRjWxbQ9nez0zOmm-LiaKe8Qtf4RQacQLjsaDrvrJ86KQP68mOee176_phQBTcfmcYCDVXN1CfJ4dHZ8w/s1600/DPP_152.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhaSon-dMTyvuON87KdaLg74OxjVOr953GbfE1qUcGOKX7Q606QogOfnkooxojRjWxbQ9nez0zOmm-LiaKe8Qtf4RQacQLjsaDrvrJ86KQP68mOee176_phQBTcfmcYCDVXN1CfJ4dHZ8w/s320/DPP_152.JPG" width="279" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Max and Miriam School Picture</td></tr>
</tbody></table>
While I was thrilled for the twins, my heart breaks a little that Jake will not have a similar experience. I could bring Jake a letter every day for the next year, and if we did hand over hand to open it, after some time he might open it on his own, but at this point, I don't think he would be aware that the letter was for him, or have anywhere near the moment Max had when I gave him his letter. I'm sure Jake's class will do the Valentine's cards, just like all the other classes do, but it saddens me that for the most part, the experience will have little meaning for him now.<br />
<br />
So that is the dilemma. I am thrilled that Max and Miriam are starting to have meaningful feelings about events, but it hurts to see that Jake isn't. Bear with me here, I know I am usually a very positive, glass half full kind of guy, but it ISN'T FAIR that Jake has to miss out on these experiences that typically developed kids take for granted. <br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrqo9IEUNhnVubbNTCe8Omdf86VDE6_KT8sh-CJ3LGE6u6R3fd4jU4ppOC06uU__XAYCC7lPdJ_NBIgzE3xv-J68ipjcNLly3hsimPnyvGCtcye93JBnRiOdYkjJh9fyIu1aamD4VR_bg/s1600/IMG_0207.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrqo9IEUNhnVubbNTCe8Omdf86VDE6_KT8sh-CJ3LGE6u6R3fd4jU4ppOC06uU__XAYCC7lPdJ_NBIgzE3xv-J68ipjcNLly3hsimPnyvGCtcye93JBnRiOdYkjJh9fyIu1aamD4VR_bg/s320/IMG_0207.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jake at Halloween - My Superman!</td></tr>
</tbody></table>
<br />
I read a very moving article by Rick Reilly yesterday about a father who, out of pure love for his son, began to run marathons and triathlons with his son (who is severely disabled and confined to a wheelchair). He did this all because his son didn't feel disabled when they raced. I was incredibly moved, and inspired at the same time. I've talked previously about the things that just Jake and I do together to try and connect more - to give him a special experience. This article has inspired me to find something Jake and I can do where Jake will feel special, where he can have those moments that the twins are starting to experience naturally. With Valentine's Day coming, this is what MY heart wants. I love my wife dearly, and Max and Miriam will always be Daddy's little boy and girl....but Jake, he will ALWAYS be my special Valentine, and I promise all of you and him, that I will do whatever I can to give his sweet precious heart the life and love he deserves. Happy Valentine's day to all of you, and I hope you get what your heart wants too.Anonymoushttp://www.blogger.com/profile/08674636458942848224noreply@blogger.com1tag:blogger.com,1999:blog-2142349662479908832.post-85362503257055412512013-01-26T10:12:00.004-06:002013-01-26T10:12:43.508-06:00Strengthening Partnerships<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
I read all too often how families raising a child with autism have higher divorce rates. I can't speak for the strength of those other relationships or what ultimately led to the failure of them. I can say that even in the best of times, marriage or any partnership for that matter needs work. I think we all have this halcyon image of romantic love (embodied by the fairy tales we all hear as children - they all lived happily ever after) that is counter productive to the reality of raising a family in these times. It's very easy for young untested couples to stand before family and friends and say "for better and worse," and quite another to prove it when the chips are on the table. I think the key is that you have to work hard to ensure not only that you do the right thing by your kids, but by your partner too. Let me be clear - I am by no means the perfect spouse, and I don't have the perfect partnership, but I know that Lily and I are both committed to strengthening our partnership as we move through life with autism, the military and twins, and to me, that makes all the difference.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuDjvsdKzTX5Qzr0at2jWwhI8SMkdd9KcLlt4cF1zfywzw_TdXWe6fwLQipeJiXWAJOrCx7GR2rpYJwrjfYzvyGQBIqi_dYlBotqfhRJhMk4xBxYU3v794h3r4otNe7wCtsTEdQ8MHmwk/s1600/Alex+%2526+Lily%2527s+Pictures+049.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuDjvsdKzTX5Qzr0at2jWwhI8SMkdd9KcLlt4cF1zfywzw_TdXWe6fwLQipeJiXWAJOrCx7GR2rpYJwrjfYzvyGQBIqi_dYlBotqfhRJhMk4xBxYU3v794h3r4otNe7wCtsTEdQ8MHmwk/s320/Alex+%2526+Lily%2527s+Pictures+049.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Me and Lily in Sydney, on our honeymoon</td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
Like any couple, we've had our ups and our downs. Some of the keys are, we make an active effort to ensure that we have time to ourselves. This isn't always easy. Raising a family of 5, with student loans on a military budget, isn't always easy. We've been really lucky to have friends who come over and watch our kids on occasion so that Lily and I can have a night out. Sometimes, we won't have them come over until after the kids are asleep, because, lets be honest, the nighttime routine is often the toughest in homes. We are always thankful for the opportunity to get out. I'll tell you, when we first started doing this in earnest (shortly after the twins were born and Jake was diagnosed), it was really hard to unplug. We would often spend the entire time talking about the kids and what we had coming up. Fight this urge, that isn't the point of being out. When you were romancing your spouse, did you spend your dinners discussing the future day to day complications of your family? Of course not, so don't do it on a date with your spouse now. At a minimum, we try to have one date night a month. If we have family visiting, we usually try and take advantage of the free babysitting for an additional date night. The key is actually committing to doing it. <br />
<br />
When I say committing, I literally mean taking out the family calendar up to 6 weeks out and specifying that hey, we want to do something on "this" weekend, and then lining up the childcare to make it happen. The days of cavalierly waiting until Thursday or Friday to decide what you will do on a Saturday are gone. You may think this takes some of the spontaneity out of things, and you may be right. The reality is, if you don't do at least the step of agreeing on a weekend and locking in childcare, well then it isn't going to happen at all. Bring the spontaneity back when you decide what to do, not in the planning for the date and time of doing it.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirVz995F1agKpOVl7g3e6SgwSuB1ZmRbyr_lUaiiA1WiRLeWOchvdKDn7fPH18vryfhfEntYdkuuutwcG6d9dUyk_LXq-fiT7W1QFs717SyCiOMg12X3brmCkzi91j8QGKCQvdjC7pT38/s1600/IMG_0207.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirVz995F1agKpOVl7g3e6SgwSuB1ZmRbyr_lUaiiA1WiRLeWOchvdKDn7fPH18vryfhfEntYdkuuutwcG6d9dUyk_LXq-fiT7W1QFs717SyCiOMg12X3brmCkzi91j8QGKCQvdjC7pT38/s320/IMG_0207.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jake as Superman for Halloween</td></tr>
</tbody></table>
Strengthening your partnership isn't just about staying strong as a couple, it is about staying strong as an individual too. One of the best things you can do is to give your spouse a night out with his or her friends. We are lucky enough in Montgomery to have some nice friends, and there are spouses groups who often have outings. You have to encourage your spouse to take advantage of those things, even if they don't want to. I promise you, they will be happy they did. Just this past week, I was fortunate enough to get a night out with the guys to have drinks and see a "guy" movie. This is the first time in a long time I can remember doing it, and it was a lot of fun. It just so happens, that two days later, Lily had a chance to go out and have a girls night out. She had a cooking class and formal dinner in downtown. I know she had a great time too. These kinds of things help remind you of the person you were before the whirlwind nature of children, particularly a child on the spectrum, and helps renew your strength to face the challenges ahead. We all want to be "Superman" for our families and children, but you have to remember, even Superman had his fortress of solitude where he could go and reflect to reinvigorate himself for the challenges ahead.<br />
<br />
The last thing we have done, which has been key for us, is that we make a point of taking one trip a year just for us. I know that vacation time for everyone is a precious commodity, and that we often use that time to take family trips. Trips with the family are wonderful, it is a great chance to create memories that your children will cherish forever, at the same token, they are crazy stressful. Its been a month since our eight day road trip with the kids and we are only just now starting to feel back to normal here. Again, after the twins were born, we made a point of getting away just for us. Getting these days away were what really gave us a chance to reconnect as Alex and Lily, not Dad and Mom. We've been exceptionally lucky to have family who will come watch our kids. We've also been very lucky with our trips. Lily has mentioned our trip to Japan last year in her Creationlily blog, which was an AMAZING trip. Of course, we only get to do that because I was there for business, had frequent flyer miles to get her a free ticket and got some pretty amazing off season hotel deals. The point is, look for ways to make this work. I have another overseas trip for work and we are planning a trip around it. For awhile we thought it might be cancelled, so we began looking at alternatives closer to home, short road trips. Location is nice, but isn't the key, the key is having the time to reconnect.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1eCkbvLfQroV6U5J3t6Oit6lQ5_Kf1avc_5YJQ31Ws9_U1v0rS_SNExq2x9Yb3ht2HKTso-u45DZE2TlVUtgDQGcMSa4w4fIN-a7uQH0GvjyKRZSsWqCJxqz0kJM-EMIGzFYLa6HO4Pg/s1600/DSCN1341.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="251" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1eCkbvLfQroV6U5J3t6Oit6lQ5_Kf1avc_5YJQ31Ws9_U1v0rS_SNExq2x9Yb3ht2HKTso-u45DZE2TlVUtgDQGcMSa4w4fIN-a7uQH0GvjyKRZSsWqCJxqz0kJM-EMIGzFYLa6HO4Pg/s320/DSCN1341.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lily with a Geisha in Kyoto, Japan</td></tr>
</tbody></table>
These are the things that we have done to help strengthen the partnership. Even with all this, it often feels like we are pushing through one day at a time. I take a lot of solace in the fact that I know I have a spouse who loves me and is as committed as I am to keeping our relationship strong, for us and the kids. Being married to me isn't always easy - I've deployed, I travel for work, I can be a wise ass, and am temper-mental when I am tired - but we manage to work through things because we work on our relationship together, and I think that makes us better parents for our kids at the end of the day too. I don't have all the answers, I don't know that any of us do, but that is why a commitment to building a strong partnership with your spouse is so important.Anonymoushttp://www.blogger.com/profile/08674636458942848224noreply@blogger.com2tag:blogger.com,1999:blog-2142349662479908832.post-26126885621785038432013-01-12T12:07:00.001-06:002013-01-12T16:15:47.526-06:00The Early Days - One day at a TimeThis week has reminded me of some earlier times, in fact, it reminds me of the time shortly after the twins were born. Jake's diagnosis came a couple of months after the twins were born. To say that was a difficult time is putting it mildly. Jake didn't exactly deal with the birth of the twins well. We had tried to explain to him that he had a brother and sister on the way, but I think it is clear after the fact, we weren't very successful.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirW_7KxkadfnjUf036fIJEID0FP0SSAQU5Zary89wEe4sCTxn7Jkxf_vV-MZMbLU76sMAFXkBBD_qiPDiXnCrrAyJaKF3fez-Fno5U2Yg-B14kjIpn3T5o9HIAHAAVeJGdvH9JVXcw3SA/s1600/0009+ROS_0249rm-2.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirW_7KxkadfnjUf036fIJEID0FP0SSAQU5Zary89wEe4sCTxn7Jkxf_vV-MZMbLU76sMAFXkBBD_qiPDiXnCrrAyJaKF3fez-Fno5U2Yg-B14kjIpn3T5o9HIAHAAVeJGdvH9JVXcw3SA/s1600/0009+ROS_0249rm-2.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jake (age 3), Max and Miriam (6 months)</td></tr>
</tbody></table>
Lily's birth of the twins was not overly complicated, but not without stress either. Because Jake had been a C-section birth, and Lily was carrying twins, we had scheduled C-section delivery for the second day of the 37th week. We had Lily's mother flying in from Seattle to take care of Jake so that I could be at the hospital with the twins. Up to that point, Jake had been pretty happy since I had been home from my deployment, although it was clear he had no idea what was coming next.<br />
<br />
My mother in law came into San Antonio two days before the twins were set to be delivered. The day before the scheduled delivery, Lily went in for a routine appointment, and I drove over from the base legal office to meet her. Shortly after arriving, Lily's blood pressure starting getting a little wonky. To make a long story short, we weren't leaving the hospital that night because the twins would be born that day in May, and not the following day as scheduled. Of course, both of our hospital bags were at home, and we had the wrong car at the base (Lily had been dropped off by her Mom, I was going to take her home after the appointment). I left Lily at the hospital, called the office to let them know I'd be out, and raced home to get the minivan and the hospital bags.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcrE2mblDYwNxJdy3-tc437YTUP_wBoIOyGlCdb3fItiOuh3bxcTrzL-mOmx44Tp-JWrk5jiYsNIUNvED-Vv0SbHbNVXupCpVj1wOzHBkE0WmRMBHc1EW8DvXRe_2HUHqPRmfqlnE9dY0/s1600/IMG_5098.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcrE2mblDYwNxJdy3-tc437YTUP_wBoIOyGlCdb3fItiOuh3bxcTrzL-mOmx44Tp-JWrk5jiYsNIUNvED-Vv0SbHbNVXupCpVj1wOzHBkE0WmRMBHc1EW8DvXRe_2HUHqPRmfqlnE9dY0/s1600/IMG_5098.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Miriam at home in Montgomery</td></tr>
</tbody></table>
The twins were born later that evening of May 2009, the first day of Lily's 37th week of pregnancy. Lily's mom and Jake came to see us at the hospital the next morning. Miriam was in the room with us, and Max was down in the NICU (nothing serious, but something that needed monitoring). I remember when Lily's mother brought Jake to the room. He was so excited to see his Mom and Dad. We tried to introduce him to his sister, but he wasn't really into it. I saw it all click for him when he heard us talking to Miriam like we talk to him. You could actually see the startling realization as it took place - what the heck is going on, why are they talking to that little tiny thing like they talk to me? It was almost impossible to get Jake back into the hospital room over the next 2 days we were there, he wanted nothing to do with those tiny, noisy little things - his brother and sister.<br />
<br />
Jake also began acting out more at home. He began waking up more in the middle of the night, in an effort to get more one and one on time. He also began having some sensory issues when left alone in his room. Those isssues that took almost 2 years to break. Meanwhile, raising twins was turning out to be every bit as difficult as we thought it might be and then some. We were lucky to be sleeping 4-5 hours a night in those days, and that didn't stop for the first 3-4 months.<br />
<br />
When Jake's diagnosis came a few short weeks later, it was everything we could do to just get through one day at a time. On the nights that Jake would wake up that summer and early fall, I would be lucky to get 2-3 hours of sleep. What else is there to do in that time but bear down and get through it? This ultimately is what we did. And things, slowly, but surely got easier. That isn't to say it's easy, it isn't. Rather, we moved from those challenges to new ones.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7-4nrHJrFDeB_jQTD2CPhMR_fL_qCD3sUn2lV3ODt1BwVe6cwcgDcI9SmC7ivfqZt_z6GHCISEdPCmGhIRsQRka5aDOgCXmmo1yOncU3pK5TsMQlje0ZI9T07TEif89he4XMlN8T4vM8/s1600/IMG_1511.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7-4nrHJrFDeB_jQTD2CPhMR_fL_qCD3sUn2lV3ODt1BwVe6cwcgDcI9SmC7ivfqZt_z6GHCISEdPCmGhIRsQRka5aDOgCXmmo1yOncU3pK5TsMQlje0ZI9T07TEif89he4XMlN8T4vM8/s1600/IMG_1511.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sleep, blessed sleep</td></tr>
</tbody></table>
Why am I reminded of those challenges this week? As you may have surmised after last week's post, we recently returned from a road trip. Since we have come home, Miriam has had a hard time adjusting to being back in her bed. Eight straight days of being in the same room with Mom and Dad, has made her want to be in our room. From talking to many of my peers, this is not at all unusual for typically developed kids between the ages of 3-5. Of course, if I give in to this, Max will want to come too, which we can't really do (4 people in the bed is WAY too many). Sleep is a precious enough commodity as is in this house. As a result, this has led to a lot of interrupted sleep over the last week and a half....reminding me of those early days right after the twins were born. I do want to emphasize that overall we are very lucky. Some families living with autism have to deal with sleep issues almost nightly. We don't have nearly as many sleep issues to deal with as those families. I don't even know how those families begin to push through,. The key for us then, as it is now, is to know that things will ultimately get better, we will ultimately be able to work through it. <br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpq265mnGYCJ3emss3nzg4ipzxj5bX9Ywy3o9U_gI2WzX2iV2i0hIbbyNP-Fx4SJ1ofcytl2PnMDN5FmDCEz4zf8v1QSZyQPiykZxoNSZuEJ72PA5Z16SbNKRaJBbPIAZJ6F5vNKpLWzA/s1600/0139+ROS_0352rm.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpq265mnGYCJ3emss3nzg4ipzxj5bX9Ywy3o9U_gI2WzX2iV2i0hIbbyNP-Fx4SJ1ofcytl2PnMDN5FmDCEz4zf8v1QSZyQPiykZxoNSZuEJ72PA5Z16SbNKRaJBbPIAZJ6F5vNKpLWzA/s1600/0139+ROS_0352rm.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jake & Dad - meeting challenges together</td></tr>
</tbody></table>
I'll keep reflecting on those early days as I push through the recent spate of challenges. At the end of the day, I know how lucky I am to have the best teammate you could have in Lily. We'll push on through these, and deal with the next challenges as they come. Until then, we'll continue to take things one day at a time.Anonymoushttp://www.blogger.com/profile/08674636458942848224noreply@blogger.com0tag:blogger.com,1999:blog-2142349662479908832.post-14149561375461720832013-01-05T09:17:00.000-06:002013-01-12T12:12:21.461-06:00Road Trip - Lessons LearnedI hope that everyone had an outstanding holiday season. Many of you likely traveled to see family. The Rose family was no exception. We had a wedding to attend in Pittsburgh, which is over 800 miles from Montgomery. Flying was ruled out immediately, for two reasons - 1) cost (over $1500 for a family of five) and 2) The difficulties of traveling. Let me expand on the second reason. Contrary to what most of you are thinking, the difficulty with flying does not arise with Jake, our child who lives with autism. Surprisingly, Jake flies like a champ. I think a lot of that stems from the fact that we took Jake on a multitude of airplane trips when he was young, even before his diagnosis (I had a lot of Frequent Flyer miles in those days!). As a result, I think there is some familiarity for him. Max, our three and a half year old boy, on the other hand, is a holy terror. On a plane trip to Seattle this summer to visit Lily's family, I was convinced Max had us within a hairs breath of being thrown off the flight. Essentially he very loudly refused to buckle up on the tarmac. I physically had to wrestle him into his seat and seatbelt, which is not a pleasant experience. <br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0Mx7bwt6-YPX9Wuc1DNVrriQpVylQX91_oix_3hgeE7Pm-8iHcfsSJUYVg2GIdi3AKSsz_PuYLPmT_aO0MC78GzDBLmcBu8eNTSff-PSU6yi0mPUEr3cjD1ReW1Q6A-klOorkX1CeLuc/s1600/IMG_0993.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi0Mx7bwt6-YPX9Wuc1DNVrriQpVylQX91_oix_3hgeE7Pm-8iHcfsSJUYVg2GIdi3AKSsz_PuYLPmT_aO0MC78GzDBLmcBu8eNTSff-PSU6yi0mPUEr3cjD1ReW1Q6A-klOorkX1CeLuc/s320/IMG_0993.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jake on the ride to Pittsburgh</td></tr>
</tbody></table>
Based on these difficulties, we weighed a variety of options on how to go to the wedding. We considered me flying up by myself. We also considered me taking Jake on my own (via airplane). Ultimately, Lily really wanted to go, so we made the decision to take a family style road trip. The first thing we did was determine that we couldn't make an 850 mile drive in one day, so we had to break up the trip. We decided to spend 2 nights in Chattanooga, TN, 245 miles from Montgomery, and 600 miles from Pittsburgh. My mom, who lives in Atlanta, drove up and met us for the 2 days in Chattanooga.<br />
<br />
We stayed at the Staybridge Suites downtown. I highly recommend it, Trip Advisor had rated it No. 2 in Chattanooga. We are able to fit fairly comfortably in a double bed suite and a hot breakfast was provided both days. Pretty affordable all things considered and they had a military rate as well! It was also right in the heart of the old part of the city and was very convenient to the various sites.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3hgIeBBkid0IU9CTZBdPOlvwqD4N-YZfnmpGaP1zMKO1-8mJ5mb5R46v-nht8yE8-y2NaAEbYsSNhRZR5P4V4r2JYnNkzI6DUo4pAlDEvdzw9nG0SK1VMM44LEs6n0Dm9Dnq_rFIX_WI/s1600/IMG_0855.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3hgIeBBkid0IU9CTZBdPOlvwqD4N-YZfnmpGaP1zMKO1-8mJ5mb5R46v-nht8yE8-y2NaAEbYsSNhRZR5P4V4r2JYnNkzI6DUo4pAlDEvdzw9nG0SK1VMM44LEs6n0Dm9Dnq_rFIX_WI/s320/IMG_0855.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Max in front of the Chattanooga Choo Choo</td></tr>
</tbody></table>
We had a nice time over the next 2 days seeing some of the local sites, like the Chattanooga Choo Choo (above), Ruby Falls and the Incline up Lookout Mountain. We limited ourselves to two activities a day, and made sure that the twins napped. This turned out to be the right mix of activities to rest ratio for our crew. I had been to Chattanooga myself as a child and seen many of these sights with my father and Grandmother, so it was special to be able to give my children a similar experience. I will say that Chattanooga has changed a lot in the last 30 years. There is more of a modern, artsy feel, while at the same time embracing the history of the region. We didn't hit the aquarium this trip (which is considered world class), but do plan on going back soon. <br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIZLTeG7zD7CDnCsLfxcZIUyzdG4UoCMRN-AeRFVnhDGsiXn8fuZYMmGsBsOEY3vLDZclpxtw7SAAhxEYHy7Fprc0DVA11i7x3wN1456nAT-N6rE390ANDZEpXKd1TUE2RrWjtvXFE0Ec/s1600/IMG_0905.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIZLTeG7zD7CDnCsLfxcZIUyzdG4UoCMRN-AeRFVnhDGsiXn8fuZYMmGsBsOEY3vLDZclpxtw7SAAhxEYHy7Fprc0DVA11i7x3wN1456nAT-N6rE390ANDZEpXKd1TUE2RrWjtvXFE0Ec/s320/IMG_0905.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ruby Falls</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
Chattanooga was largely incident free, I say largely, not totally. We did have one incident in the middle of the night before leaving for Pittsburgh. I'm not going to go into excruciating detail, but suffice it to say, it was not pleasant to deal with, and really, was no ones fault (involved an upset stomach of one of the children). Staybridge Suites was very understanding throughout the process. I mention this because many of us with children on the spectrum have to deal with some unpleasant issues from time to time. It was refreshing for the night receptionist to go out of her way to help us deal with this.<br />
<br />
This did have the negative effect of getting us on the road about 2 hours later than we had planned for Pittsburgh. We learned some additional lessons on this drive - as I mentioned in a previous post, "Hope for the Best, Prepare for the Worst," you have to expect the unexpected. In this case, it was Jake and/or Max, demanding a potty break every 75 miles. 8 breaks over a 600 mile drive. It had the effect of turning a 10 hour drive into an 11 hour and 45 minute drive. Those of you with young children know, there are no quick breaks. The other lesson learned was that it is important, where at all possible, to find a bathroom with no hand dryer. The second stop on the way up was at McDonalds, which apparently has a national policy of only having hand dryers. As I took Jake in, a couple of people hit the dryer to dry their hands. The noise caused Jake to freak out. Now, he had shown sensitivity to this kind of noise when he was younger, but in the last year or so, seemed to be able to deal with it. Not so on this trip. From that point on, even though he was asking to use the potty, it was a struggle to actually convince him it was ok to go. This continued on the drive back as well. For those of you looking for bathrooms without hand dryers - Love Truck Stops have only paper towels and clean bathrooms, so that is a good choice.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCa94A8H7wco0qhltU6ZdbwaQu4a2Q9GXKK_O5vfIkWrWhowsiKNPU9CZcy7a8hBDaobiV11SsNrwi6I8i6Fsr-Wb3g1om_EVLbb73TMPkdGQIlQTGaOUbTz9_xgn-4IFObWdWcn2db3A/s1600/IMG_1073.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCa94A8H7wco0qhltU6ZdbwaQu4a2Q9GXKK_O5vfIkWrWhowsiKNPU9CZcy7a8hBDaobiV11SsNrwi6I8i6Fsr-Wb3g1om_EVLbb73TMPkdGQIlQTGaOUbTz9_xgn-4IFObWdWcn2db3A/s320/IMG_1073.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jake at the Pittsburgh Children's Museum</td></tr>
</tbody></table>
Pittsburgh itself was a great city and a lot of fun. We took the kids to the Children's Museum, which was without a doubt the best Children's Museum I have ever seen. We spent several hours there and all of the kids has a great time. The family events were good too, although it was definitely a challenge to herd all three kids and try to have an adult conversation as well. Even though the kids presented challenges at a formal event, they were definitely a hit at the wedding. It was also nice to introduce them to their extended family of cousins.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxPFfgcltbLkB4F-b2rYHQ6ik8-fLV8OjQ-0OZNSUGNc_TEiPldGPXjRGBuGSUUZgRU6T9ewKvm3wzRSUwfXQI9f4HiQBumojU45tu3xX_8SGVYQ74aq8B34HWWGosgq9h6hKP8sRyZP4/s1600/IMG_1328.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxPFfgcltbLkB4F-b2rYHQ6ik8-fLV8OjQ-0OZNSUGNc_TEiPldGPXjRGBuGSUUZgRU6T9ewKvm3wzRSUwfXQI9f4HiQBumojU45tu3xX_8SGVYQ74aq8B34HWWGosgq9h6hKP8sRyZP4/s320/IMG_1328.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jake dressed to kill for the wedding</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbMK6G75ESXb0mccljWJNgkwbrrJ9xp-NXyJyjoofH9bYFzAnl7M9u2yYljcMuLIzeRYxZ6UXmrQiZWcYUR7T2T5pBywTD37s5PWJhVfn5Wd0duLP6j3vf_jfpOjJqhG_CCFAYGKKTXTo/s1600/IMG_1314.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbMK6G75ESXb0mccljWJNgkwbrrJ9xp-NXyJyjoofH9bYFzAnl7M9u2yYljcMuLIzeRYxZ6UXmrQiZWcYUR7T2T5pBywTD37s5PWJhVfn5Wd0duLP6j3vf_jfpOjJqhG_CCFAYGKKTXTo/s320/IMG_1314.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Miriam at the wedding</td></tr>
</tbody></table>
That isn't to say this wasn't an exhausting trip - it was. After the wedding, we drove to Atlanta to spend a couple of days with my Mom, before returning to Montgomery, again, in a attempt to break the drive up. All in all, it was an 8 day trip, almost 1800 miles of driving (including intra-city), through 8 states. No one got lost (for more than a few seconds anyway ;) ), no one got injured, and we were able to make it to a family event we would have missed otherwise. That isn't to say this trip was easy. It was exhausting. I'm sure we'll spend the greater part of the next 10 days recovering from it. It was a real testament to our preparation as a family that we were able to do this at all. The key though is, we were able to do it. Sure, there were lots of little difficulties, and frayed nerves along the way, but at the end of the day, it was mission accomplished. Hopefully we learned from the issues we experienced this time and we can avoid those the next time around. I'm proud that we were able to do this as a family, and I hope if you are reading this and you have your own special guy or lady, that this helps give you the confidence that you can make this kind of thing happen. I remain firmly convinced that Jake only benefits from being exposed to the world and the world benefits from being exposed to him. I'm glad we didn't let our fear of all the unknowns prevent us from making this journey as a family, and I hope our lessons help you in some way. Happy New Year from Capt Dad and the Rose family!<br />
<br />
<br />Anonymoushttp://www.blogger.com/profile/08674636458942848224noreply@blogger.com0tag:blogger.com,1999:blog-2142349662479908832.post-79134703137615454802012-12-22T10:41:00.000-06:002012-12-22T10:41:03.661-06:00Assignments and the Exceptional Family Member ProgramI know it's still the holidays and this may be the furthest thing from everyone's minds, but for those of us in the military, assignments season will fast be upon us. I need to start out with a couple of caveats, I am a JAG (Judge Advocate General) in the Air Force, and our assignment process is unique from both the other services and from the remainder of the Air Force as well. We have our own assignments bureau in D.C. (JAX) who handles all JAG assignments separately from the Air Force Personnel Center (AFPC) which everyone else uses. In fact, our assignments process has already run, and we expect the official forecast of assignments for Lt Col and below to be released any day. That said, based on my experiences and the conversations that I have had with people who deal with AFPC, there are still parallels and the bulk of this post can still apply to you.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIm7lA1aPn0cobHKMeVwpeXgJ9PnlkX10OzDELC77jLZQzQOiGQbv_dnLI6bsu7vNM1iknOyA7PxemLx9P1jBj8EneGAH6tzzwPP9NI5TiMAb7QA1kACdsUWa7Uy-FSnNBWd8fVnTvy-k/s1600/CIMG0551.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="297" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIm7lA1aPn0cobHKMeVwpeXgJ9PnlkX10OzDELC77jLZQzQOiGQbv_dnLI6bsu7vNM1iknOyA7PxemLx9P1jBj8EneGAH6tzzwPP9NI5TiMAb7QA1kACdsUWa7Uy-FSnNBWd8fVnTvy-k/s1600/CIMG0551.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Capt Dad as a Lt with Jake at 5 months</td></tr>
</tbody></table>
<br />
So, as a starting point, what is the Exceptional Family Member Program (EFMP) and how does it play in to assignments. EFMP is a program that runs through the entire Department of Defense. It is designed to ensure that if you have a special family member, you will be sent to an area where there are <i>adequate</i> services for your family. An Autism diagnosis (or PDD/NOS, Aspergers, or any ASD diagnosis) <b>requires</b> your family to register for the EFMP. For those of us on Active Duty getting Applied Behavioral Analysis (ABA) therapy, at least for the time being, you have to be registered in EFMP before you can use ECHO services to pay for your therapy (Extended Health Care Option). EFMP membership is supposed to attach a "Q" code to your personnel file so that you can only be sent places with sufficient services. This is usually accomplished as you prepare to make your Permanent Change of Station (PCS), and will be saved for a different post in the Spring.<br />
<br />
In practice, I find that the system works a little differently. First off, you, better than anyone, know the types of services your child is going to need. Someone at AFPC (or JAX for that matter) will probably not understand to the level of detail you do, what is required for your special child. I've had conversations with plenty of people where they tell me "there is a big hospital at that assignment, so you should be covered." Those of us with children on the spectrum know that the presence of a hospital has almost nothing to do with adequate ABA therapy. It is an indicator that there is probably Speech and Occupational Therapy, but I find that ABA is often the sticky wicket.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgp9ebbhI0yt5WEOEuZGgC14E5ZKw5ZIKbgmRFSnToeUjrHrTiD6hcY3mxcQDvRh6ZSicwK48eukKUfNdCK0cyonbdSR5P3QTnPOTkr-bUd8eor5b8pASd_UC-b20VTe5RerdKDdJDOcbE/s1600/IMG_0288.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgp9ebbhI0yt5WEOEuZGgC14E5ZKw5ZIKbgmRFSnToeUjrHrTiD6hcY3mxcQDvRh6ZSicwK48eukKUfNdCK0cyonbdSR5P3QTnPOTkr-bUd8eor5b8pASd_UC-b20VTe5RerdKDdJDOcbE/s1600/IMG_0288.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jake at Equine therapy, age 6</td></tr>
</tbody></table>
<br />
All that said, there are things you can do to help the process along. The last time I dealt with this, was when we moved from San Antonio (where there are great services) to Montgomery (where there are ok services). The key is to start early and do your homework. We all have a general idea of what jobs will be open in what location. This is how we compile a "dream sheet" of assignments. Living with a child on the spectrum takes this to a new level. In the JAG corps, we get an assignment vacancy list in the summer which anticipates what jobs will be open the following summer. It is from that that most of us create our job lists.<br />
<br />
When that list comes out, take a long hard look at it. First off, see if you know of anyone with a Special Needs child at one of the locations. Call them and talk about the services there. That is an excellent way to get an idea of what is available. Additionally, compile your dream sheet of the jobs you want, and then get in contact with your ECHO coordinator to find out about ABA therapy and Speech/OT in the area. You can get a very good idea of how hard it will be to find a therapist from simply getting that list and calling a few therapists. I would then suggest you call the EFMP office (usually in Family Services on most Air Force Bases) at those bases to find out about local schools, and therapies. That is a good way to find out how long wait lists are. Extended wait list time is something that can lead to an EFMP package being denied, so it is important to know. Based on this homework, you can find out whether you have a reasonable chance of having your assignment EFMP cleared.<br />
<br />
Some of you might be thinking....doesn't the military already do this? The answer is, sort of. Usually you don't get to the EFMP clearance part until shortly before you are slated to move. If you fail to get clearance at that point, your assignment is turned off and you start from scratch looking for a new assignment. This is not always a great thing, because many of the assignments in locations you would want are already taken at that point. This is why it is so important to be proactive.<br />
<br />
Once you have taken these proactive steps, in the comments section of your official dream sheet, make sure you state clearly that you have a child on the spectrum, and that you have verified that the assignments on your list have adequate services for your child. Essentially you are telling your personnel-ist that if they pick an assignment from your list, you <i>should</i> be good to go. Assignments people are usually pretty appreciative of the fact that you are working with them to ultimately make their job easier. To the extent you develop a reasonable and realistic list (i.e., choosing jobs and locations that are right for you and not pie in the sky asks), it makes it that much easier for them to pick something on your list.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4kStYdS2tXQwyvsNpttZjROzd-Cq7xPbLVN5oakngycYcxvYfRk5KLPOdQQjApDLlZZioOPro8384QAZfDRx_SDta_WSiZ4PwVeNPBFpPgoVgJmbT9G67PW5uE5BhtkHlrnVgQ1k38Sc/s1600/IMG_0078.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4kStYdS2tXQwyvsNpttZjROzd-Cq7xPbLVN5oakngycYcxvYfRk5KLPOdQQjApDLlZZioOPro8384QAZfDRx_SDta_WSiZ4PwVeNPBFpPgoVgJmbT9G67PW5uE5BhtkHlrnVgQ1k38Sc/s320/IMG_0078.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jake at 6</td></tr>
</tbody></table>
<br />
There are no guarantees and the military is often going to send us where they need us to be, but this helps get you some say in the assignment process, more than you might otherwise have. I also find that by doing all of this leg work at the outset, when you get a call for an assignment which you haven't vetted, the assignment people tend to be fairly understanding when you say you have to check on resources before you agree to the offered assignment.<br />
<br />
<br />We'll talk about the second step to EFMP clearance in the Spring. For now, I hope this helps everyone a little bit as we all make our way into assignments season. This will be the last post of 2012, so I hope everyone has a Happy Holidays, Merry Christmas and a Happy New Year. All the best from Capt Dad and the Rose family to you and yours.<br />
<span id="goog_1335015203"></span><span id="goog_1335015204"></span>Anonymoushttp://www.blogger.com/profile/08674636458942848224noreply@blogger.com0tag:blogger.com,1999:blog-2142349662479908832.post-89268037976731055192012-12-15T09:50:00.001-06:002012-12-20T15:46:42.864-06:00Happy HolidaysIt's that time of year again. It seems like once Halloween arrives, we go back to back with the holidays, each a little more stressful than the next. I already have spoken about Thanksgiving, but with Hanukkah wrapping up tonight, and Christmas and New Year's around the corner, this feels like the right time. On top of all this, I was doing business travel over the last couple of weeks and could already see the crush of holiday travel beginning. It is critical at this time to be thankful and appreciative for all we have, and to try and manage/avoid some of the holiday stress, whether you are a typical family or a special one.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" height="278" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgH8-aVDfW5zQqLADuCEXU4_g5DD2AnIbjGdkKTwOX7DWZdfpCVB8yrnfnMeN3JAXqIBb_g9GdKZ34pT9xcGu-36yojy4S1SG9lg5wr27efQGKhQzYg1GyFOdZY8tS-FCMkf1pfUke-DPE/s1600/IMG_0344.JPG" width="320" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Miriam at Amelia Island</td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
Hanukkah, the Jewish Festival of Lights, has some real lessons for someone raising a family with Autism. It is the story of the Maccabees triumphant defeat of the Syrians in Israel in biblical times, even though they were outmanned. Even after winning the battles, the Israelites found their sacred temple ransacked. Most importantly, there was only enough oil to keep the menorah (a 7 candle one, not the Hanukkiah, which is pictured above and has 9) lit for one day. The great temple was to keep this flame burning perpetually. It would take 8 days to get additional oil. Against all odds, the oil which should only have been enough to last one day, lasted for eight - the miracle of Hanukkah.<br />
<br />
So what does this have to do with Autism? I see two significant parallels. First, you have to stay in the fight, even when the odds don't look good, and you are outnumbered. Sometimes, like the Maccabees, you can beat the odds. That doesn't mean you don't work hard - it means you go in with a plan of action and you meet this thing head on. This is a real lesson, because it is easy to lose hope, to have those down moments - to ask yourself late at night, why did this happen to my beautiful child?<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqz6b3cccYQ5cKVvBlOhTBT3djOpVx_6QbPqdOeOJbY4td7QYR1jKzJDUb896fPiqxM9FJztBrTfkZ4q5H1iBaXLRdUFrFEH-fqL_dKm3GOAjSgSSPJ7-xBqcv-hDVClFP2UXtzXslfQs/s1600/IMG_0364.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqz6b3cccYQ5cKVvBlOhTBT3djOpVx_6QbPqdOeOJbY4td7QYR1jKzJDUb896fPiqxM9FJztBrTfkZ4q5H1iBaXLRdUFrFEH-fqL_dKm3GOAjSgSSPJ7-xBqcv-hDVClFP2UXtzXslfQs/s320/IMG_0364.JPG" width="320" /></a></div>
<br />
The second parallel is to keep faith. The Israelites thought the oil would only last one day, but they hoped, and prayed (and sent for more oil!), and against all odds, the oil lasted eight days. You never know when or how a miracle can occur, and you never know when or how your child might make a significant breakthrough. Don't give up hope or lose the faith in your little guy or girl. Like the oil, they may surprise you with what they can do.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinPFsDoA9uZsTflYzdTCK0jdY5jZ6H7V8H5wRYcnT9nzISSueOoe-sdegKpbgJ2wBd5vUOnAvA3FP58DPLIcp2da-GNLCRqMLbHdRk7SW6fabj47pZggxDDr-kQ5X94xQP3EA-w0Ax2S8/s1600/IMG_0493.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinPFsDoA9uZsTflYzdTCK0jdY5jZ6H7V8H5wRYcnT9nzISSueOoe-sdegKpbgJ2wBd5vUOnAvA3FP58DPLIcp2da-GNLCRqMLbHdRk7SW6fabj47pZggxDDr-kQ5X94xQP3EA-w0Ax2S8/s320/IMG_0493.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Max and Miriam at Sunday School</td></tr>
</tbody></table>
The holidays are about family. When you get a lot of family around, with all their different expectations, there are additional stresses. Try not to let this get to you. Don't let a family member's artificial expectation of how things need to go control what is right for you and your family. The most important thing is to keep your special guy or girl calm and happy, in what for them, will be a very difficult and chaotic time. If you do that, on the whole, everyone will be happier. I find, that for Jake, a lot of times, that means getting him out away from everyone else for some quiet time.<br />
<br />
We are no strangers to this. We have a trip planned this holiday season as well to go to a family event. While I know the travel and the circumstances of being some place new will be tough, I am confident that Lily and I will get through it with most of our wits intact. We won't be afraid of travel or exposing our unique family situation to the rest of our extended family, but, as always we will take steps to keep Jake and everyone else in good spirits.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8K74wsnz22lMhm-ygzJMk7UFB-SMpk-4b5VDkOIXbXETm3ts9lELIXXsqsvpXlW40TlSVo8PwFKLxFKvxUbfW8PialrBLHWEzR4XCERb7ktw_QtKSldXrGtw7LnW03zYELXjGWEd4tBM/s1600/IMG_0502.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8K74wsnz22lMhm-ygzJMk7UFB-SMpk-4b5VDkOIXbXETm3ts9lELIXXsqsvpXlW40TlSVo8PwFKLxFKvxUbfW8PialrBLHWEzR4XCERb7ktw_QtKSldXrGtw7LnW03zYELXjGWEd4tBM/s1600/IMG_0502.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Traditional Menorah</td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
At the end of the day, whether you are Jewish, Christian, or something else, the holidays are a message of hope and giving. What better message to convey to your children? So long as your remember the true spirit of the holidays and impart that to your kids, while tough, they can remain enjoyable too.<br />
<br />
So, from the Rose family - Happy Holidays. I wish all of you a joyous Hanukkah, Christmas, and New Years. I fervently hope that all of you enjoy yourselves, and your families. And to those military families - if you have someone away for the holidays - know that they love and miss you as much as you miss them (speaking from experience!). Enjoy the season!<br />
<br />Anonymoushttp://www.blogger.com/profile/08674636458942848224noreply@blogger.com1tag:blogger.com,1999:blog-2142349662479908832.post-40050102694721924592012-12-08T14:04:00.005-06:002012-12-08T14:04:40.576-06:00Hope for the Best, Prepare for the WorstAutism is a fickle disorder. It's always two steps forward and one step back. Just when you think you are starting to make progress, there is a setback. Just when you think you have finally extinguished a behavior, it returns in full force and it is back to the drawing board. As a father, I often worry that Jake is not going to progress far enough to be self sufficient when he is older. At the same token, I hear far too many tales about kids on the spectrum who don't utter a word until they are 9 or older, and then miraculously come out of their shells and are able to go off to college. Don't get me wrong, these little heroes still have social issues, the autism hasn't gone away, but they can function and survive in a self sufficient way in society. I recognize that autism is something Jake will likely have to live his whole life with, but I still want him to have the best life possible. This leads me to the title of this weeks blog - as a parent, I always hope for the best. That said, I am human too, and have very real fears that the best may not be reached, as a result of that, I try to make sure we are prepared for the worst as well.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKF_Dda3nQkhnRnR938LvgW6KDSWev6q7KMdFUKSME2uCETF6m051AXV7eVFLERfub0sEVn-hFSl_N1zSEjSR-b29oFNPIrdw1pTbrjuwApI4bYY-8MUAnXk_5Nbbbqtzgg5GuReHu6G4/s1600/IMG_0206.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKF_Dda3nQkhnRnR938LvgW6KDSWev6q7KMdFUKSME2uCETF6m051AXV7eVFLERfub0sEVn-hFSl_N1zSEjSR-b29oFNPIrdw1pTbrjuwApI4bYY-8MUAnXk_5Nbbbqtzgg5GuReHu6G4/s320/IMG_0206.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jake Ziplining at Camp ASCCA this summer</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<u><b>Hope</b></u><br />
The power of positive thinking is not something to underestimate. It is important to set goals for your child, even if we don't always think they are in reach. I learned this lesson shortly after Jake was diagnosed. I remember sitting in the first IEP (Individual Education Plan) meeting with the public schools in San Antonio and hearing some of the expectations that the teacher of his PPCD (Public Preschool for Children with Disabilities) program had for him. I literally scoffed in the meeting and said "good luck, I can't see Jake ever doing that." It was the simple task of working his way through a lunch line, taking his tray to a table and then disposing of his food and tray when he was done. At home, we were still strapping Jake into a booster seat to make sure he didn't get up during his meal. This seemed like asking my three year old kid to land on the moon. I remember meeting Jake at school to have lunch with him a few months later and watching him do just what his teacher said he would do. She looked at me and smiled. It may seem like a small thing, and it may seem like I underestimated my child, but for those of you who have a child on the spectrum, this kind of thing was a big deal. It really taught me that I have to have hope and faith in my child and the programs he is in. That teacher taught me a valuable lesson, and we are very thankful she was in Jake's life.<br />
<br />
You have to have hope. You have to believe, even if it seems impossible today, that your child can ultimately get to those goals. If we don't challenge our children with difficult expectations and even allow them to fail, we make it harder for them to grow and progress. On top of that, our children feed off our positive energy. It is a great reinforcer for Jake when we tell him how proud we are of him, and show him our enthusiasm. He thrives on that positive feedback. To borrow back a phrase from my wife, you have to look at the glass half full.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuJlaTNKicwRfi4bb3NstduLsSytbOvCf9lDGLyITJg95hyphenhyphenlQnAzZVI3YZq4Wc7XcOxTTbWn7zAtRzm8Pa3o3QSVpFn0w9l4THl4KHgvlx0XYIJwK9BIwmrdbzLx-akNKiBIEZoVMsXnw/s1600/IMG_0149.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuJlaTNKicwRfi4bb3NstduLsSytbOvCf9lDGLyITJg95hyphenhyphenlQnAzZVI3YZq4Wc7XcOxTTbWn7zAtRzm8Pa3o3QSVpFn0w9l4THl4KHgvlx0XYIJwK9BIwmrdbzLx-akNKiBIEZoVMsXnw/s320/IMG_0149.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jake on the cargo net at Camp ASCCA</td></tr>
</tbody></table>
<u><b>Prepare</b></u><br />
While it is always important to keep hope in your heart, you have to prepare for life in case things don't work out as you hope. Jake is a heck of a climber, and I'm not worried that he would fall very often, but that doesn't mean I'm going to let him climb the 50 foot cargo net pictured above without wearing a safety harness and a helmet! I cheered Jake the entire time he climbed that net, but I was glad he had a safety in place in case something bad happened.<br />
<br />
Life is no different. What if Jake doesn't get to the place where he can take care of himself in life? What if the progress I hope for doesn't happen. I live with these fears every day, as I am sure many of you. In some respects, this has been a tough year, because developmentally, the twins (age three and a half) are starting to pass Jake. I'd <i>hoped</i> Jake would be further along at this point. I lie awake at night, or early in the morning on many days fearful that Jake won't improve like we have all hoped. I'm not going to sugarcoat it, this is very scary to me as a parent.<br />
<br />
What can you do to help prepare for this? That's a great question. I think the answer changes a little bit every day. It's important to always assess the therapy programs you have your child in to make sure things are going well, and if they aren't, what tweaks might help get the forward momentum going again. I also spend a great deal of time staying up to date on the latest legal developments (I am a lawyer after all!) regarding autism. Remember, you are your child's greatest advocate. I try and keep an eye out for programs for older children and young adults with autism. With the burgeoning numbers of people living with autism (1 in 88 overall at last report), there are scant resources available for young adults. I think that is slowly starting to change, and it is important to stay current on that for your child's sake.<br />
<br />
Another thing you can do is prepare for the unlikely event that something may happen to you. Lily and I routinely discuss care issues for Jake if something were to happen to us. Jake is only six, and we are already on our second Will since he was born. As Jake and the twins change developmentally, who is best able to care for them if we were to go also changes. It is important to document who that right person is. If you are in the military, Legal Assistance will provide you with a free Will. Take advantage of that, you need to make sure your children are looked after properly. Just because I might not be here, doesn't mean I don't want Jake to have the best life possible.<br />
<br />
On a related note, many of us (particularly in the military with your SGLI) have healthy life insurance policies to care for our loved ones if something should happen to us. You should be aware that if your special needs child inherits a relatively minimal amount of money (less than $10,000), they can become ineligible for many public programs. That money you have for their care can go very quickly in that case. We all know how much ABA, speech and OT can run over a year, imagine if you didn't have insurance or supplemental state programs to cover that? There is a solution - it's called an SNT, commonly called a "Special Needs Trust", the technical name is a "Supplemental Needs Trust." What this does, is allow a trust to hold the money for the child's benefit, and allows the child to remain eligible for public programs. I HIGHLY encourage you to look into this if you haven't already. I know that the Air Force and the other services are training their JAG's to be able to create these documents. Personally, I had an attorney friend who is a subject matter expert in estate planning do Jake's. If you don't feel comfortable with a military attorney creating this, you can go through the American Bar Association's (different ABA), LAMP (Legal Assistance for Military Personnel) program to find a local expert who should be able to help you inexpensively. If you aren't eligible for this, there are legal clinics in most major areas which can help you at a fraction of the cost. No one wants to think about this stuff until it is too late, but you have to have a plan in place in case something should happen to you. I'm not saying you have to do this, I am saying you should have a plan in place for your child that maximizes the resources you will leaver for him/her when you are gone.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxl5P8aiKDVtkFWogIEI-IYvSUmFQggdwtHO2f6YJgg5eMsC2F5RpddZ2dD5AwAqMA2oGwaB5es3TFm4cg7_3dqzO-ypsHLUToE52Gqg2IJtqs-oPc8xNa4D8-pME8mOP4fBv0gwtZi_Q/s1600/IMG_0088.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxl5P8aiKDVtkFWogIEI-IYvSUmFQggdwtHO2f6YJgg5eMsC2F5RpddZ2dD5AwAqMA2oGwaB5es3TFm4cg7_3dqzO-ypsHLUToE52Gqg2IJtqs-oPc8xNa4D8-pME8mOP4fBv0gwtZi_Q/s320/IMG_0088.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jake at a Seattle Sounders game - summer 2012</td></tr>
</tbody></table>
Hope for the best, prepare for the worst. Words to live by. We always want what's best for our children. I hope that Jake never needs to take advantage of a lot of the safeties we put in place for him. But if he does, I rest a little easier knowing that we've made some plans in the event things don't turn out like we hope. I hope everyone stays safe this holiday season and has a safe and healthy New Year!<br /><br />
<br />Anonymoushttp://www.blogger.com/profile/08674636458942848224noreply@blogger.com1tag:blogger.com,1999:blog-2142349662479908832.post-42877548300267801372012-12-01T11:12:00.000-06:002012-12-01T11:12:40.544-06:00Taking Care of BusinessToday's post is about business travel. Even in today's world, with all of the technology and open communication we have (this blog for example), there are still some things that require we be there in person. In the 13 years I have been practicing as a lawyer, I have made business trips in some form almost every year. This isn't an issue for me personally, I love travel after all, but as we have had children, and a special needs child in particular, this has consequences. At the end of the day, you have to take care of business to take care of everyone else. I'll share some experiences and coping strategies we have worked towards over the last few years, and if any of you have helpful advice or hints in dealing with this, by all means, comment!<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidK1WC4jMFMESUvVvhLWklPZw6ZoCHyM1DOG1_wuauMmsYoGltFibiAQiQHPGPC_XxD3C6DTN5_L0xBllgbjFbnaMTozn47NW4U3IgmvOC2yHQ1HLPOgGTqO61D4NW1gm71Eiqc6HBzqU/s1600/0018+ROB_0088rm.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidK1WC4jMFMESUvVvhLWklPZw6ZoCHyM1DOG1_wuauMmsYoGltFibiAQiQHPGPC_XxD3C6DTN5_L0xBllgbjFbnaMTozn47NW4U3IgmvOC2yHQ1HLPOgGTqO61D4NW1gm71Eiqc6HBzqU/s320/0018+ROB_0088rm.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jake at 3 and a half</td></tr>
</tbody></table>
I realized shortly after Jake was born that business travel would be different. I'd had all kinds of travel since Lily and I had become a couple, and while I always looked forward to being home, It didn't tear at my heartstrings to go away for a few days. Three months after Jake was born, I reported to Maxwell AFB, AL for Commissioned Officer Training. This isn't the kind of thing you can bring your family to. You are living in a dorm room with someone else training upwards for 14 hours a day on occasion. It was when I was there that I realized how much being away from Jake hurt. How many firsts was I going to miss? Would he forget about me? Lily was fantastic....sending me several pictures every day during the time I was gone. When they arrived in Montgomery to join me during my last week of training, I was so happy to see them. I knew from that point forward that if I had to leave for any real period of time that it was going to be tough.<br />
<br />
After that first stretch, I was never really gone for more than a week or two leading up to my deployment in September 2008. We settled into a routine in San Antonio. To the extent we could have a grandparent help out when I was away that was helpful. At the same token, it was, in perspective, pretty manageable to deal with just Jake in those years - he napped, he was fun loving, he slept a lot. We even took Jake on several business trips, one to San Francisco and one to Charlottesville, VA.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh53rEO4qUbEiTxAB83JMbk-KPlU78iwYk5LJVaEsy6ePNvcA3WKRehhG9d2xRylwb9ktln-3yo2w6LeSuOqoHPvzo4NskoTOUa8fSrXoOGQOi86mGBuRPM13tPlBpuTUWYSutZEPGItrc/s1600/Travel+pics+004.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh53rEO4qUbEiTxAB83JMbk-KPlU78iwYk5LJVaEsy6ePNvcA3WKRehhG9d2xRylwb9ktln-3yo2w6LeSuOqoHPvzo4NskoTOUa8fSrXoOGQOi86mGBuRPM13tPlBpuTUWYSutZEPGItrc/s320/Travel+pics+004.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lily and Jake at San Francisco Ferry Terminal</td></tr>
</tbody></table>
<br />
In the summer 2008, I had to go to Ft Dix, NJ to train for my deployment to Iraq. I was gone for about a month. Lily and Jake spent that time in Seattle with her parents. It was like Officer Training all over again, and a mere taste of the six months to come when I would be in Iraq. At this point some early warning signs were starting to present themselves with Jake, we just didn't see them. I remember getting out to Seattle right after my training (I had taken some leave before my deployment) arriving at 1am Seattle time. Jake was sleeping in the bed with Lily, I crawled in with them and we crashed. When Jake woke up at around 7am and realized I was there with him, he was so happy and smiling. It melted my heart. I knew how tough it was going to be when I was gone.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXtdXZOVDllGUr5NFlhC6qi0U2a9t_cj1Rrecivsn0-zBV7SDRIThJ0HrZPVqk5E-v7oYms6FVKVXfMEpQHUa_dP9mdCXWZGFKycTJGnwMc7tYdFd2fOj4dp0mW5K9S3DLFmm-M_fEhP8/s1600/Picture+153_2.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXtdXZOVDllGUr5NFlhC6qi0U2a9t_cj1Rrecivsn0-zBV7SDRIThJ0HrZPVqk5E-v7oYms6FVKVXfMEpQHUa_dP9mdCXWZGFKycTJGnwMc7tYdFd2fOj4dp0mW5K9S3DLFmm-M_fEhP8/s320/Picture+153_2.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jake and Me right before my deployment</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
I left for Iraq in mid September 2008. This was the beginning of the skype era. I had bought a new laptop before I left, and set up a webcam on our computer at home, so that I could video chat with Lily and Jake. Lily was pregnant with the twins at that time. I knew it was going to be tough, but I was excited to be able to see and talk to Lily and Jake while I was gone. A lot of guys I was deployed with had young children Jake's age as well. They told me all kinds of heartwarming stories about their kids talking to them, telling them that they loved and missed them, basically having a conversation with them. I never got the chance to have that experience.<br />
<br />
When I first got to Iraq, we tried to skype every day. We quickly realized that I didn't have the bandwidth on my end to do that. We made a point to do it twice a week, which became once a week. Don't get me wrong, I called almost every day if I could, but video, was limited. Part of this was because Jake had no interest in seeing me. The computer at home was in a home office, a room that Jake was not typically allowed in. When he came into the room with Lily he was MUCH more interested in playing with things in the room. I could see him tooling around on the camera in the back of the room. It was great to be able to see him, no matter how briefly, but brutal that I couldn't get him to be interested in me. Even when Lily was able to corral him and get him in her lap at the computer, he was more interested in his own picture in the corner or slapping the keyboard. This should have been another warning sign to us, but again we didn't see it.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiB8Q2YuB0qf-RTvsGwK3iCL2ynoY-kP7y63Hf5bDyAK1WXxxcVzd3tPPjbdFYqMLBUL5uyYYQd4bfc_zDIg17sNj4Oc6jgDstSD_yuZaWJSKHMK7rbz_RRAkFOT31xTT3vQeqNwEhLJpk/s1600/DSCN1513.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiB8Q2YuB0qf-RTvsGwK3iCL2ynoY-kP7y63Hf5bDyAK1WXxxcVzd3tPPjbdFYqMLBUL5uyYYQd4bfc_zDIg17sNj4Oc6jgDstSD_yuZaWJSKHMK7rbz_RRAkFOT31xTT3vQeqNwEhLJpk/s320/DSCN1513.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Family pictures on my Trailer wall in Iraq</td></tr>
</tbody></table>
Meanwhile, at home, Jake was experiencing serious separation anxiety. If Lily was out of his sight, Jake got very upset. It was if one parent had abandoned him and now he might lose the other. It was tough on Lily, because it gave her virtually no down time when she was already exhausted from the twins pregnancy. It was heartbreaking for me because I had done this to my son. Lily was fantastic when I was gone. She sent me a lot of care packages, which always had pictures of her and Jake in them. I had the pictures taped all over the wall over my bed in the CHU (Containerized Housing Unit) I lived in in Baghdad. These are glorified trailers. I couldn't wait to see both of them when I got home.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRE4TGjh1sx8DItikUZbZsvQDzdVKlPpeqwlw7sArv8J3lzdnl50v06yUI1QvkbU42WJHGCNsl4kW2Oj8EnyiDioj_V1CKilxK8-lPOFXNnX9l90LwrE5C9y5zJD1G8ua-iP0mMWUPn7w/s1600/DSCN0636.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRE4TGjh1sx8DItikUZbZsvQDzdVKlPpeqwlw7sArv8J3lzdnl50v06yUI1QvkbU42WJHGCNsl4kW2Oj8EnyiDioj_V1CKilxK8-lPOFXNnX9l90LwrE5C9y5zJD1G8ua-iP0mMWUPn7w/s320/DSCN0636.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jake and me at the airport when I returned</td></tr>
</tbody></table>
<br />
<br />
I was so happy to be home with Jake and Lily. There were some typical readjustment pains as we learned to live together again, but it was great to be home. Within months the twins had joined us, and then came Jake's diagnosis. I had also changed jobs to become the Area Defense Counsel (ADC's) at Lackland AFB, in San Antonio. Most ADC's travel a lot, but I was lucky. Lackland was such a busy base (we had 3 ADC's, the most in the Air Force, most bases have 1), that I hardly had any business travel, which was great for Jake. I say hardly any, but I still had some....<br />
<br />
That first trip was in October 2009, about 6 months after I had gotten home from Iraq. Up until that time I hadn't left the kids for more than a business day since I'd been home. It was that trip which drove home the point of how much trauma I had caused Jake when I was in Iraq. I had packed my suitcase and left it by the door for when I took my cab to the airport. Jake came downstairs to start his day and saw the bag, and literally started melting down. In his mind, Dad was leaving again for six months. I spend awhile comforting him and explaining that this was a small bag, small bags mean Daddy is only leaving for a short trip. I think that made sense to him as a 3 year old, because he calmed down.<br />
<br />
Since then, I've had several trips, ranging from 3 days to 3 weeks (when Lily joined me in Japan last year). Jake will even get on the phone, and if prompted say hi dad, I love you dad. When he does it unprompted....now that melts your heart. He has started to get used to it, but there is always a consequence when I get home. Jake, for the most part is a good sleeper. For those of you without children with Autism - children with autism sometimes have sleeping issue. Some will be up every night for 2-3 hours in the middle of the night. This happens for Jake, but usually no more than 1-2 a month, as opposed to every day for some kids. That said, virtually every time I come home from a trip, for the first night or two I get back, Jake wakes up, even if he slept great the entire time I was gone. You see, I am the one who is up with Jake when he gets up. He knows he'll see me if he wakes up. Usually, if I snuggle with him, he goes back to sleep pretty quick (not always though). When I get home, it's as if he wants Dad to come over and have some special time with him.<br />
<br />
This is on my mind, because I have a 10 day business trip coming up to go try a case in Alaska. We've done what we can to set Lily up with support - my Mom is coming in over the weekend I'll be away, but it will still be tough. I feel better these days leaving the kids for a few weeks. I know Lily can handle it (even though it is tough). We can facetime, or skype, and the twins and Jake will at least look in the camera and say hi. Every family has to find their own way to deal with business travel, it is a reality for most families. And after I have taken care of business, I can look forward to a couple of extra hours of snuggling with Jake during the night. Anonymoushttp://www.blogger.com/profile/08674636458942848224noreply@blogger.com1tag:blogger.com,1999:blog-2142349662479908832.post-19697247410463706312012-11-25T19:44:00.002-06:002012-11-25T19:52:07.819-06:00TeamingTeaming can mean a lot of different things to a lot of different people. In my day job as a JAG in the Air Force, teaming refers to the interplay between JAG corps Officers and paralegals (enlisted) in order to enhance productivity, or in the military term of art, to be a force multiplier. My wife Lily, (lilybrose1948.blogspot.com) recently wrote a post entitled the "Giving Thanks to the A-Team" referring to the entire group of people who work with our son, Jacob. I am using this to refer more specifically to how I work with my wife to ensure that she can be the best she can be with Jake. I talked earlier (in my Curveball post) about how critical it is to be there as a father for your special needs child, to do whatever it takes to make sure you get into their world. Today is about what we can do as fathers for the mothers of special needs children, although I think this is just as applicable to families with typically developed children.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnO1cmSnOtTy38Rr84Oa1egUQz_4ZKg0wxOahX-A5M7hE66Rk3E_BWYDVqULZluRdRqqDcp48D2XAyoy0cpRyYg252P5VCrn4CTfUar1BNoJ76bfhuAWjqKnSZAzIMaZh3guXqNdui2Js/s1600/DSCN0042_2.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnO1cmSnOtTy38Rr84Oa1egUQz_4ZKg0wxOahX-A5M7hE66Rk3E_BWYDVqULZluRdRqqDcp48D2XAyoy0cpRyYg252P5VCrn4CTfUar1BNoJ76bfhuAWjqKnSZAzIMaZh3guXqNdui2Js/s320/DSCN0042_2.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lily and I in Mendoza, Argentina, 2008</td></tr>
</tbody></table>
In order to be as effective as possible with your children, it is important that everyone be working together as a finely oiled team. I mentioned in "Curveball" how shocked I was to see that divorce statistics (already pretty bad in society) were worse when parenting special needs kids. Having been in this ongoing struggle for a little over three years, I can see how problems arise. As hard as I work to make sure I am there for Jake (and I have been exceptionally lucky to have such understanding bosses who allow me to be there for him), I know that it is Lily who spends the lions share of time working with him and the therapists. <br />
<br />
This is particularly grueling. Not that Jake isn't a loving sweet child - he is, but it can be incredibly difficult to want to see your child make progress only to have a setback. This has become even more real for us in the last year as our three year old twins start to move past Jake in many developmental areas. There is very much a sensation that we are beginning to lose the battle of time. Of course, every time that happens, we make a big leap ahead and it keeps giving us hope. <br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghSk566gwIfxLMoCpBhlWGL7gWHgQ0XwwGXcGfs1Q-dapdPR5ok9dh1VX_hNwwHPmBgb8Pjzq8AkOrh8h9rAX9jx9IzTfezjbINXhE0HhE2FWJFjAFHLdtuSP6_m2V3wtLP7GDGJHyZ2U/s1600/DPP_152.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghSk566gwIfxLMoCpBhlWGL7gWHgQ0XwwGXcGfs1Q-dapdPR5ok9dh1VX_hNwwHPmBgb8Pjzq8AkOrh8h9rAX9jx9IzTfezjbINXhE0HhE2FWJFjAFHLdtuSP6_m2V3wtLP7GDGJHyZ2U/s320/DPP_152.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Max and Miriam at 3 and a half</td></tr>
</tbody></table>
I mention the twins because this summer was particularly difficulty for Lily. There was no day to day summer program for Jake. We were already financially extended by having the twins at the base Child Development Center, there wasn't a surplus of money to give Lily a lot of help with Jake. Plus, without a day program, he was basically down to three hours a day of ABA therapy. That left a lot of hours for Lily to work with Jake on her own. I should mention that Jake has a particular ability to push Lily's buttons. He knows exactly how to lean on her to wear her willpower down. I could tell that these were very rough days for Lily and that when I came home from work she needed a break. No matter how tired I was, I was going to have to be high energy and try take the lead with Jake and the twins.<br />
<br />
As a husband, I know that for Lily to be her best with the kids, she has to have some time to unplug as well. Since school has started for Jake, this has been much easier for her, but during the summer....it was critical that I do what I could to help her out as much as I can. I'm not trying to paint a Rosy (ha ha!) picture here and make it out like we are perfect. Far from it. We have our difficult moments like anyone else, and I am no saint, I know that. That said, I have thrown myself into being there for my wife just as I have with Jake. I haven't done exhaustive research, but I suspect that a lot of couples become bitter, because no one feels like they have down time and no one is feeling appreciated. I find that a little appreciation can go a long way....simply saying thank you, or I appreciate what you are doing goes a long way.<br />
<br />
Of course, thank you's and appreciation only goes so far. It has been imperative for us to get time away from the kids. Don't get us wrong, we love our children dearly, but we have to have time to reconnect as a couple away from them. We make a point of having at least one date night a month, which is actually no small thing! Sometimes we have been lucky and have a colleague come over and watch the kids after they go to sleep. If we have to get a sitter, it makes for a very pricy night. More than once a month starts to cut into other things that we do. These nights, even though we are beat from taking care of the kids or a long week at work, are very nice, just for the chance to be away for a few hours.<br />
<br />
We also make a point of taking a trip without the kids at least once a year. I like to think of it as vacationing on a budget. We have found it takes about an entire week to actually decompress from our daily stress. I cannot emphasize enough how important this is. I am always surprised when I talk with friends who have kids and find out that they almost never go on trips themselves. This is just one more way I can be there for my wife. I also need to thank my parents and in laws, because this has been a major way for them to be there for us.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikhYgxWwA4lRD7acf1MQ4uafMqIq0LIX-DMUNAdUh1ynEhS2SXKF2AOD8nvVKJcDg7fMZgLNQnm0ZfB61FIpHuosfFzCcEgdMyDvAWJGzILSgBaTcQrfTuofKEh-35M7M_GZLsLkACSAU/s1600/0139+ROS_0352rm.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikhYgxWwA4lRD7acf1MQ4uafMqIq0LIX-DMUNAdUh1ynEhS2SXKF2AOD8nvVKJcDg7fMZgLNQnm0ZfB61FIpHuosfFzCcEgdMyDvAWJGzILSgBaTcQrfTuofKEh-35M7M_GZLsLkACSAU/s320/0139+ROS_0352rm.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jake (3 and a half) and Dad, December 2009</td></tr>
</tbody></table>
I wish I had a magic formula for this, I could use it myself. At the end of the day it is incredibly hard work, and I think that goes for almost everyone. The key is, you really do get out what you put into it. Teaming with your spouse is no different, you have to be there for your significant other, so they can be there for your children. This is a universal truism... I remember a conversation I had several years ago where someone described their family as something other than the typical American family....and I responded (years before Jake), that who has a typical American family these days? I truly believe that, what we have historically thought of as typical family is so rare at this point it is almost extinct. With that in mind, it is imperative to always be working to make sure your team truly is a force multiplier when it comes to your children.<br />
<br />
In this time after Thanksgiving, I am so thankful for my wife and only hope that I can continue to be there and be a rock for her in times good and bad. I have been blessed with her in so many ways and will continue to be there for her and our family. She truly is an amazing wife and mother who does too many things to individually recount here. I hope everyone else had a wonderful Thanksgiving break!Anonymoushttp://www.blogger.com/profile/08674636458942848224noreply@blogger.com1tag:blogger.com,1999:blog-2142349662479908832.post-47960702191721346212012-11-17T10:09:00.000-06:002012-11-26T19:45:19.204-06:00ThanksgivingWith the holidays approaching, I thought it might be good to discuss them a bit. I'd like to start off before getting to the substance of the post by saying I am incredibly thankful for what I have in life. I have a wonderful, beautiful wife, and three precious children. We're not perfect, and our life isn't always easy, but I am thankful for it nonetheless. This is going to be a little bit of a more serious post, a hybrid of lessons learned and shared experiences. The question for today's post is, how best to prepare yourself to deal with the holidays.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPakeicGvfCxvhXdraaKIzxO_RUgXBz1hGBO2Cocm8r3mXrBVFjZVkOzym6eXCV1QU47dxDkVZZgTb2A6g2Rzrg2XayLMSgA6J_Zqw-KYDzLCZPZ5evZmVs07yghcxKGP_DscKVEwtSNA/s1600/0087+ROS_0322rm.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPakeicGvfCxvhXdraaKIzxO_RUgXBz1hGBO2Cocm8r3mXrBVFjZVkOzym6eXCV1QU47dxDkVZZgTb2A6g2Rzrg2XayLMSgA6J_Zqw-KYDzLCZPZ5evZmVs07yghcxKGP_DscKVEwtSNA/s400/0087+ROS_0322rm.JPG" width="265" /></a></div>
<br />
The holidays can be a stressful time for any family. There are at least a dozen made for TV movies that are shown every year detailing the difficulties "Typical" families deal with at this time, from friction between parents, kids, in laws, etc. This isn't unexpected. People are traveling great distances, they are staying in different places, people get taken out of routines, everyone is tired from trying to make a huge meal, and as you can only imagine, tensions mount.<br />
<br />
Now, add to this, a child with autism. This is a child who is a creature of routine and his surroundings. For example, at home Jake has a very nice set up. We have gated off the areas of our house where our more valuable, i.e. breakable, items are, and give Jake almost free reign over the rest of the house. He has a very full day 5 days a week. M-F he is at a special program at the elementary school from 7:20 am - 3:30 pm. On Wednesday's, he has equine therapy (the subject of Lily's most recent post, found at lilybrose1948.blogspot.com). On Thursday, he has speech and and occupational therapy at a local medical facility. And finally, on M-W and F, he has ABA therapy in the home. On some of those days, he goes until 8:00 pm, which is his bedtime. So as you can see, he has limited downtime (mostly the weekends), he knows what to expect, and within that schedule, he transitions very well.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCW3bO_gxl2k1PTuXOOwBz2KgPkAQyVgf44xGN-3DSP6ahNOmRM-FgGlLDWGwBhMUjS3TJFJMsrEqXKU4PO9y2YFrUgAvCt6rC2ZqdvXuEHAQZeDMHy_3yLtEnc-Y5aq7R7u6xqQrRaNk/s1600/IMG_0205.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCW3bO_gxl2k1PTuXOOwBz2KgPkAQyVgf44xGN-3DSP6ahNOmRM-FgGlLDWGwBhMUjS3TJFJMsrEqXKU4PO9y2YFrUgAvCt6rC2ZqdvXuEHAQZeDMHy_3yLtEnc-Y5aq7R7u6xqQrRaNk/s320/IMG_0205.jpg" width="240" /></a></div>
<br />
Now, imagine that I am not only going to take him out of that routine, but put him in a car (or plane) and travel for many hours and when we get to where we are going, it will be a new place, with new things for him to get into (and to get into trouble with), not his bed, or his toys. If you think chaos <i>can</i> ensue, you are absolutely correct. I told all of you last week you have to have the courage to get out there and do things, and traveling for the holidays is no exception. The key here is preparation, both before and after.<br />
<br />
<u><b>Before</b></u><br />
<br />
Before you go it is critical that you make sure you have the things you will need. Things like the right kinds of changes of clothes, the toys that he is just going to have to HAVE, stuffed animals, pullups, wipes, etc. You get my drift. This is no small task. Lily usually fills an entire legal pad page with packing items for the kids before we go on a trip and meticulously checks them off as she sets them aside for packing. I go through and make sure we aren't forgetting anything. Mercifully, you can get most replacement items anywhere you go, but not all, so it is important to do this right.<br />
<br />
As we load up the car, we have to make sure we have snacks, juices, and travel diaper bags handy for the actual drive. Everything has to be loaded so that certain things are left accessible. On the drive itself, be prepared to make several stops for pee breaks. We are doing well if we can go 2-3 hours before stopping. Oh, and keep a vigilant watch in the mirror, because every once in awhile, Jake gets bored and has some kind of sensory issue pop up. If it isn't caught immediately, it can be a real disaster. We got to experience that one when we moved from San Antonio to Montgomery, as we were caught in Houston traffic.<br />
<br />
If you can coordinate with family at the destination that can help too. My father, for example, has a couple of gates he can set up when we come in to town. It pens the kids into about half of his large house, and protects the major valuables. That doesn't take care of everything, but it is a big help. I'm also able to let him know certain foods that I know our crew will eat, so that we have some stuff on hand for the first day when we get there. This is important, because everyone is usually exhausted by the time we get there and it is often late in the evening when we arrive.<br />
<br />
<u><b>At Your Destination</b></u><br />
<br />
The important thing here is to get your special needs child settled first. Even though we have three children, and my three year old twins can be plenty demanding, Jake still is the priority when we get to a new location. We get his important stuffed animals out, get him changed and ready for bed, and if possible, get him down. The first time at a new place will always be the toughest, because Jake will want to explore. For him, a lot of things that we wouldn't necessarily think of as a big deal become toys - little hotel garbage cans, plungers, toilet wands, anything with a rainbow on it. We can guess some, but we never know until we get there.<br />
<br />
After we get Jake down, we usually police the area to make sure there aren't valuables/breakables that he will be drawn to. We learned that the hard way after visiting my fathers and my in-laws on a couple of different occasions. You become vigilant through experience. If this post can help you avoid some headaches, I hope it helps.<br />
<br />
Once there, even though everyone is excited to have us, we do add stress. If a regular, typical developed visiting family adds stress through their needs, imagine how much stress we add. We do our best to minimize any issues, but we still have to parent Jake in a way that works for him, which means consistency. This is often tough because, lets face it, grandparents want to be grandparents. They want to spoil their kid. Doing so with Jake has some real consequences that can take weeks to bleed out. You may be thinking, so what? We all deal with that. You're right, you do, but in this case, if we have to devote 2-3 weeks of therapy time to break him of behaviors he picks up, that is 2-3 weeks that he isn't able to make other progress in other area where he really needs it. This is a struggle.<br />
<br />On top of all of this, there is the real potential that Jake can become overloaded being in a new place, with so many new people around. I find it helps a lot to get Jake out on his own and take him on "Missions" as we discussed last week in my Patience, Love & Courage post. That really seems to calm him down too. The key is to avoid meltdowns and for the most part we are pretty good at this.<br />
<br />
<u><b>The Meal</b></u><br />
<br />
What kind of holiday would it be without a holiday meal? Personally, for me, Thanksgiving dinner is my favorite meal. When I was a young bachelor and my mother came in for visits, she would always cook me Thanksgiving dinner (Turkey, mashed potatoes, and green bean casserole, my favs) even if it was July. Jake, on the other, hand, like many other children with autism, tends to be a pretty picky eater. While he can remember exactly where I put a piece of paper he wants from weeks ago, he seems to "forget" that he likes certain foods, and if it is something new....good luck getting him to try it. In fact, we are working on this again now. At school he is supposed to try 1-2 bites of anything at his meal. This has actually led to him eating a lot of new things, but it is often a struggle to get him to do so.<br />
<br />
You are at Thanksgiving, and your special child has NO interest in eating the meal that took all day to prepare. What do you do? I'll tell you what not to do....don't have the inevitable battle of wills in front of the family. Take it from experience, this will make your wife unhappy, your parents unhappy and her parents unhappy too. One of the reasons I seem to ultimately get Jake to try things is because I tend to win the battle of wills. I tend to win these battles, because as my wife can tell you, I can be pretty darn stubborn. That said, when Jake starts vocalizing loudly to make his dissent known, it is not fun to watch. So, what do you do? I think you have to make a choice. Either you are going to just prepare something he likes in lieu of the Thanksgiving meal, or take him to another room and have the battle of wills there. I haven't decided which we will do this year, but I know I won't be having a battle of wills in front of the family.<br />
<br />
<u><b>Back Home</b></u><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7Hn0611foA3BTxRYUawyVTAjLcyGVKOAwRwDYhZw1vJEmMPzBCKi5NivzHYfP_1CJevCF9yGcZrpOkOzZGhC_P0mNIi905_ZmtFU9ug8L56YxIF951psa-cnc322oqtS4B8nx-yEE3Iw/s1600/IMG_5001.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7Hn0611foA3BTxRYUawyVTAjLcyGVKOAwRwDYhZw1vJEmMPzBCKi5NivzHYfP_1CJevCF9yGcZrpOkOzZGhC_P0mNIi905_ZmtFU9ug8L56YxIF951psa-cnc322oqtS4B8nx-yEE3Iw/s320/IMG_5001.JPG" width="320" /></a></div>
<br />
<br />
The trip home actually tends to be easier than the trip down. Everyone is tired and ready to get home. Once back, you are immediately in your normal surroundings. The key is reestablishing order as soon as possible. The sooner you can reestablish the normal routine, the easier it will be for everyone. <br />
<br />
Don't be afraid to get out there and see family. Hopefully your families will be understanding about the stresses your family has. It is a learning process for them too. We have been very fortunate that our families are so understanding about our unique family situation and requirements. For that I am very Thankful.<br />
<br />
As I mentioned at the top, I am very thankful for a lot of things this year, as I am every year. I hope you all have a wonderful Thanksgiving and that your holidays go smoothly. To the extent that issues arise for you, make sure you are able to look back on it and learn lessons to avoid similar issues in the future. The answer isn't to go into a bunker mentality, it is to continue to figure out the best way to do things as a family, special or otherwise. Safe holiday travels to all of you!<br />
<br />Anonymoushttp://www.blogger.com/profile/08674636458942848224noreply@blogger.com0tag:blogger.com,1999:blog-2142349662479908832.post-23070038373462737952012-11-11T10:47:00.000-06:002012-11-17T10:28:52.425-06:00Patience, Love and CourageAs a father, I know it is exceptionally tough to raise a child with Autism. Shortly after Jake was diagnosed, Lily and I bought several books about Autism. I remember buying one written by a father. What was astounding to me over the course of the book was how high the divorce rate was amongst couples raising a child on the spectrum. What was more startling was that in several cases it appeared to be the father leaving because of a perceived lack of a relationship with his spouse and his child, essentially, the dad checked out. In response to that, I have to say, this is HARD work, and you do have to WORK at it, but if you do, it can be very very rewarding. I know it takes a lot to make this work, I like to focus on three things, which helps me keep perspective - Patience, Love, & Courage.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrdX2N6sG2ulUepB3ezsWmwiQJGmaer1jNa6y2QLCO8u50btzBJAzcY2iuLg4n_tLXm_AESw4q4dbvzM7R86CFk2AdAHdiEgLain3rLeSA21sLituBCjuUogNU2yiS5UpPxddZQvcQan4/s1600/IMG_4997(1).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrdX2N6sG2ulUepB3ezsWmwiQJGmaer1jNa6y2QLCO8u50btzBJAzcY2iuLg4n_tLXm_AESw4q4dbvzM7R86CFk2AdAHdiEgLain3rLeSA21sLituBCjuUogNU2yiS5UpPxddZQvcQan4/s320/IMG_4997(1).jpg" width="320" /></a></div>
<br />
PATIENCE<br />
Patience is a wonderful word. It is something we can all work towards, and something that usually we don't possess enough of. Raising Jake has been a real test of this at various times. Shortly after he was first diagnosed, we began to deal with some sensory issues. I am not going to delve into the details here, but the long and short of this was, he couldn't be left alone in his room, or we might not like the results when we got back. Every time we made an adjustment, Jake figured out a solution to get at what he wanted to get at. Having just gotten back from a deployment to Iraq, I took to comparing my children to rival terrorist factions....all with different tactics to get what they wanted. Every time we adjusted, the kids adjusted. While this was exceptionally frustrating, and a real test of patience, when I took a second to reflect, I was very pleased with how smart my children were, even if Jake in particular wasn't able to traditionally reflect it.<br />
<br />
I think it is important to pull back a little bit. Parenting a child with Autism is a long haul commitment. There is no short term solution. Patience along with consistency is important. If the child knows consistently how we will respond, it helps control some of their behaviors as well. I'll give you an example - Jake knows that when he deals with me, if I make a specific request, I expect him to comply, even if it is hand over hand (me physically walking him through the task). The translation long term is, that I can call him from another room, and he responds and complies, because he knows I expect it and that if he doesn't, I'm going to be there to "help" him. It isn't uncommon when dealing with children with Autism to have a hard time in getting the child to listen and follow direction, particularly where you are not this strict in enforcing expectations with ABA principles. The child can be 3 feet away from them, and if the child doesn't believe he will get a specific reward, he won't do what is asked. A lot of the success with Jake came from patiently staying with core ABA training, even though it was tough at the beginning, and even though at the outset, it took a long time before any real progress could be seen.<br />
<br />
The more I patient I am with implementing the program with Jake, the more he knows that I am there for him. He can count on continuity at home. This patience in the home makes things like travel, and even moving with Jake easier than I would have anticipated. I'm not saying it is easy, just easier than some of the horror stories I've heard.<br />
<br />
And just so you don't think you are dealing with Ghandi here, I've had my moments, like any parent, where I lose my patience with Jake. I'm not proud of those moments, and I work hard not to have too many of them. Even in those moments though, there is a silver lining. I have heard from several different therapists that children with Autism will often push their parents because they think the faces parents make when they are angry are funny. I can see how much Jake really is connected, because when I am angry, he doesn't think it is funny. He reacts much like you'd expect a neuro-typical child too - he gets upset and his feelings are hurt. No parent wants to make their kid cry, so of course, this hurts me terribly when it happens, but the silver lining remains, at some level my child is upset to have disappointed his father...I'd like to think that is the product of the second topic I mentioned above...<br />
<br />
LOVE<br />
I cannot emphasize this enough - a special child needs all of your love. That doesn't mean you have to shower him with hugs and kisses (although if they let you, why not, right?). It means you have to let them know you are there for them, and find a way, any way, to get yourself into their world. Shortly after Jake was diagnosed, I was able to do this in a few ways. Jake actually LOVES to be tickled. So several nights a week, I made a point of just tickling Jake. You'd be surprised by the eye contact and communication you can get from your child in these moments.<br />
<br />
Jake also loves riding on my shoulders. More than that, he likes when I fall back on our bed with him on my shoulders. We call this "Timber," as in - 3, 2, 1, Tiiiimmmmmberrrrrrrrr! He would laugh and squeal and just have a good time. In those moments Jake and I were able to really connect. I knew I was in his world. I wasn't just adjacent to him. This was huge for me. I didn't just stumble into it either. I knew that I had to find a way into his world, and I was going to keep trying until I found a way to connect. Parents, you just can't give up on this. Be persistent, find what interests your child, and work your way in, you'll be glad you did.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpP6rWaObAoF_kXKPP0yVnGuKxP1Mn3LTidBcF0eG5h-qe9-dALrTBB6yIHrWdtKeSnxZC4Aqc9OVkMZg9Bk_sZsvdRJCNDTBvtjUWm2qXhdo62D1ZFKY4U_IrvqvfgazYg54aW_iYOTU/s1600/IMG_0501.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpP6rWaObAoF_kXKPP0yVnGuKxP1Mn3LTidBcF0eG5h-qe9-dALrTBB6yIHrWdtKeSnxZC4Aqc9OVkMZg9Bk_sZsvdRJCNDTBvtjUWm2qXhdo62D1ZFKY4U_IrvqvfgazYg54aW_iYOTU/s320/IMG_0501.JPG" width="320" /></a></div>
<br />
<br />
The other thing I was able to do was simply get Jake out and alone with me. Jake was a huge Little Einsteins fan. So when I was going to take him out alone, I would tell him "We've got a mission," which is what the characters say as they are about to go on an adventure. Jake would get excited, he knew it was just him and Dad. Today, he still asks me to go on a mission when he wants to go out with me. It didn't have to be anything special. Heck, a lot of the time I just took him grocery shopping. That gave me a chance to talk to him, point things out and get him to use language, like when I would ask him to identify certain fruits and vegetables. He particularly enjoyed the organization of the grocery store. Plus I could tickle him for a reinforcer. These were some additional things I could do with him just to connect, and the fact that I could make it a learning experience for him was a bonus. On top of all of this, if I took him out during the twin's nap, that gave Lily a break to boot!<br />
<br />
COURAGE<br />
<span class="huge bqQuoteLink">"I
learned that courage was not the absence of fear, but the triumph over
it. The brave man is not he who does not feel afraid, but he who
conquers that fear." - Nelson Mandela</span><br />
<br />
<span class="huge bqQuoteLink">That quote speaks to me on a lot of levels, but truly resonates with me as a parent of a child with Autism. You cannot live afraid. You have to get out and get your child out into the world. That isn't to say I haven't had to deal with very public meltdowns, or that we haven't gotten looks, or even that we haven't taken precautions to avoid the above, but we still get Jake out and about. Before Jake's diagnosis, we took him everywhere with us. We didn't know any better. He came on a trip to San Francisco, DC, Charlottesville, VA (I had training there), Las Vegas, Seattle and a big vacation to South America. I've taken him to NBA games, college football and basketball games and soccer games (usually just me and him). I think that all of this really helped Jake be out in public. Today, he isn't the tough kid to fly with. The tough one is actually Max, my 3 year old son. You'd be surprised, Jake is usually pretty easy to deal with on these outings all things considered, and I think he enjoys the time alone and away from his siblings, even in a very crowded environment. Jake is a little different, in that he doesn't actually mind crowds, because he can be anonymous. He actually has a harder time in one on one time scenarios, as I learned the hard way getting him a hair cut on a certain occasion (best saved for another post). The key is to get over the fear of getting him out.</span><br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkRZCLPTAwSrpcShyHH5Xi2yRsik_x-4oNGKg15pWbwVtSx1xOGlrGqOuTTnDyCb28zLBtv1aafoT6RfggVgDjvxV1dzs5Nm1sGJ5-rLXvoZjp_Lo9xevM2xPpeEELat3YtjYi4OYdXA4/s1600/IMG_3354.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkRZCLPTAwSrpcShyHH5Xi2yRsik_x-4oNGKg15pWbwVtSx1xOGlrGqOuTTnDyCb28zLBtv1aafoT6RfggVgDjvxV1dzs5Nm1sGJ5-rLXvoZjp_Lo9xevM2xPpeEELat3YtjYi4OYdXA4/s320/IMG_3354.JPG" width="320" /></a></div>
<span class="huge bqQuoteLink"> </span><br />
<span class="huge bqQuoteLink">You certainly have to take precautions when you are out, but you can't be afraid to do so. In the picture above, you can see I have on a backpack, which contained extra clothes, underwear, wipes, pullups and juice. I truly believe that I am better preparing Jake in life by exposing him to the world. I also would like to believe that I am helping raise awareness by exposing the world to him. Parents - I know it is tough, and you have to start small, but it is worth it.</span><br />
<br />
<span class="huge bqQuoteLink">The last part of courage is the courage to take time for yourselves. I know how scared parents are to leave their kids to go out, but you have to make a commitment to work on your relationship with your spouse or you will have issues. Lily and I make a point of having at least 1 date night per month. Respite programs, to the extent they are available can help. More importantly, we make a point of taking a real vacation away from the children. I have been exceptionally lucky that my parents and in-laws have been able to come visit and take on our crew to allow Lily and I to have the once a year trip; I know not everyone is so lucky. All I can tell you is that the time away from the kids really helps us reconnect as a couple.</span><br />
<br />
<span class="huge bqQuoteLink">These are some of the thoughts I am having on a Sunday morning with the kids while I let my spouse have a much needed morning off. Teamwork is important, but I find a little patience, love and courage goes a long way. </span>
Anonymoushttp://www.blogger.com/profile/08674636458942848224noreply@blogger.com0tag:blogger.com,1999:blog-2142349662479908832.post-53600065108497861852012-11-03T16:01:00.000-05:002012-11-17T10:27:52.375-06:00The CurveballI'd like to start out by introducing myself, my name is Alex Rose, I have a lovely wife and three beautiful children. Life hasn't been easy, but could certainly be much more difficult. We are not your typical family, although, in fairness who is these days. To start off, my wife and I made the decision 6 years ago to join the Air Force. I am a JAG officer (a lawyer for the military), and we currently reside in Montgomery, AL. That alone doesn't make us atypical. I could tell you we have three year old twins, but again, that isn't what has become a driving force in our family. No, what makes us different, is that we live with Autism. Our six year old son, Jake, was diagnosed a little over three years ago, and to say nothing has been the same is an understatement.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvtuaZ_GsBmUYWCZCjXisByq3tB1mpkAfCngNiN0VPsviAGAVm0yEew93FCzOP0MApgCvF4_bexo4eP6YXDLg816SOrTOx-EtZAj-A51eXk7EGR7VlytfHY7NoxpFzORBJAvrLIzojb0U/s1600/0017+ROB_0088rm-2.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvtuaZ_GsBmUYWCZCjXisByq3tB1mpkAfCngNiN0VPsviAGAVm0yEew93FCzOP0MApgCvF4_bexo4eP6YXDLg816SOrTOx-EtZAj-A51eXk7EGR7VlytfHY7NoxpFzORBJAvrLIzojb0U/s320/0017+ROB_0088rm-2.JPG" width="320" /></a></div>
I remember vividly the day Jake was born. I remember holding my son and having all of those same dreams and aspirations that many of you have for your own children. As I held my infant son, I remember seeing him as a little boy, playing catch, being curious, talking to me. I remember seeing him playing with his friends, riding his bike, going to sporting events. I remember seeing him as a young man, with his whole life ahead of him, a wife and children of his own. The dreams we all have for our children. I was so proud of him, and scared for him.<br />
<br />
I remember several months later, hearing radio advertisements about autism awareness, about the early signs you could see, like lack of a smile or eye contact. I remember feeling relieved that my son didn't have those signs. Jake had a beautiful smile, and was always looking at us when we called his name. He developed language ahead of schedule too. It seemed like he craved being with Mom and Dad, and we couldn't have been happier. For most of the first year and a half of his life, we never had an inkling of what was coming ahead. We traveled as a family, all over the country and even to South America, and Jake was always the Belle of the ball wherever we went.<br />
<br />
In late 2008, shortly before Jake turned two, I deployed to Iraq for 6 months in support of Operation Iraqi Freedom. I left my wife, Lily, home, and pregnant (with the twins). It was only then that Jake changed. He began to lose language. He began to lose skills that he had once had, and he began to pull away from his friends at his pre-school. The school was actually very proactive and brought these very real concerns to Lily's attention. They did the right thing. Of course at the time, what parent wants to hear something is wrong with their child. We chalked it up to the change because of my deployment. We decided to do minimal early intervention until I got back from Iraq. Lily was having a hard enough time between work, and the pregnancy. She didn't need to do more. Plus, kids all develop differently right? Maybe Jake was just a slow talker.<br />
<br />
After I got back, things were a whirlwind. Lily was about to give birth to Max and Miriam, and I was about to change jobs, going from our base legal office to become an Area Defense Counsel. We knew things would be tough, but we really had no idea. Infant twins are a handful, plus we still didn't really know what was going on with Jake. Meanwhile, at this time, Jake began to develop sensory issues as well, not all of them pleasant to deal with. We finally scheduled an appointment with a developmental pediatrician at the base and began filling out the several hundred question form before the meeting.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-EaDD0OI6gTqym9mCQEgrBZ6RdSO0cPOgR7lOQZW05pcXQlQzrH1q96mKqBuyfayklw8PoCPEbUdxZ_0mkPnpCo8m2pEj2U_T7iOg9nt7CukZZbqhO0tAeLQbSdLZ_e_j_TH5FLTWRQs/s1600/0009+ROS_0249rm-2.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-EaDD0OI6gTqym9mCQEgrBZ6RdSO0cPOgR7lOQZW05pcXQlQzrH1q96mKqBuyfayklw8PoCPEbUdxZ_0mkPnpCo8m2pEj2U_T7iOg9nt7CukZZbqhO0tAeLQbSdLZ_e_j_TH5FLTWRQs/s320/0009+ROS_0249rm-2.JPG" width="320" /></a></div>
At this point we were beginning to see that there really was something going on with Jake, but we still held out hope that a Doctor would tell us he was just delayed, he would catch up and everything would be ok. When we went to meet with the developmental pediatrician, we expected that this would be a lengthy progress, that there would be a lot of observation and testing. It took about 20 minutes before he concluded that Jake lives with Autism. I felt like I had been hit by a ton of bricks. To call it a curveball was a massive understatement. I was doing my best to keep it together, for Jake and for Lily, who was already becoming emotional. While I may have been strong on the outside, on the inside I saw every single one of those dreams I had for Jake when he was born shatter before eyes. All of the things I had hoped for with him, all of the dreams, they were gone, in an instant.<br />
<br />
That was a brutal time for us. We had to navigate the red tape of the Military's Exceptional Family Member's Program (EFMP) so that we could get Jake into Applied Behavioral Analysis (ABA) therapy as soon as possible. At the same time I had to do deal with the public schools so that Jake would be ready to go as soon as he turned three in their Public Preschool for Children with Disabilities (PPCD). On top of all this, we had the twins, who were two months old. Oh, and I had just started a new job. In fact, I was about to do my first case as a Defense counsel a week after Jake was diagnosed. The truth is, being that busy probably helped me keep it together at that time. If I had time to stop and dwell on it, rather than do everything I could to fight for my kid, I might have broken down. All that said, we definitely went through a grieving process. At the end of the day though, we knew we had a very special little boy who loved us very much. Lucky for us, Jake's autism did not effect his affection for us. Not only did he tolerate touch, he craved being hugged, tickled and kissed. When tickled, we could even get him to look at us while he smiled. His smile just melts your heart.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLL7Pbzf2rJw5KgIt72USZYKvdJzEVI1z-7dzQ37_9rxyIEVDQ7TZrIXUvdJuawHOjsDR2odKj1AdzqyUDdqakIEcVhe0HpkYcJm0xcYhetrhoKxZaCJu7UuLOKj2R2qdtMnrYUtcvuh0/s1600/0134+ROB_0203rm.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLL7Pbzf2rJw5KgIt72USZYKvdJzEVI1z-7dzQ37_9rxyIEVDQ7TZrIXUvdJuawHOjsDR2odKj1AdzqyUDdqakIEcVhe0HpkYcJm0xcYhetrhoKxZaCJu7UuLOKj2R2qdtMnrYUtcvuh0/s320/0134+ROB_0203rm.JPG" width="320" /></a></div>
<br />
I'll be using this blog to talk more about our journey, navigating the military's system and how autism has effected and changed our family. My wife also has a blog, (lilybrose1948.blogspot.com) and has some beautiful insights, I encourage you to read it. I also thought it was important to add my perspective - an involved father figure only can help, right?<br />
<br />
Oh, and when I said all my dreams for Jake were shattered on the day we got that curveball, well, that wasn't really right. Time has allowed me to see that those dreams aren't necessarily gone, just changed. There is still time for him to have a very fulfilling life. Autism is like a Jedi trying to see the future - it is always in motion. I try to go through life now hoping for the best, but preparing for the worst, that way all our bases are covered. One thing that definitely hasn't changed is my love for my son and our entire family, and it never will.<br />
<br />Anonymoushttp://www.blogger.com/profile/08674636458942848224noreply@blogger.com2