Wednesday, March 21, 2012

Why do I support HR 2288 Caring for Military Kids with Autism Act?

I haven't posted in awhile. Cinnamon has been updating everyone with her posts, but I saw this question posted on a Facebook page that I follow, so I figured it was time for me to explain why we ask people to get involved and to get active in the CMKAA cause.

Cinnamon and I got married by the justice of the peace a few weeks before I deployed to Afghanistan with the thought that we would save money during the deployment for a "real" wedding when I got back. We figured that while I was gone she would have access to base for anything that might need to be done in terms of wonderful Army paperwork, and that she would have health benefits in case she got sick or injured while I was gone.

Two weeks after I got to Afghanistan I was on Skype, and she told me something that would change all of our mid-tour trip to Ireland plans. She said "Babe, I'm pregnant." FRAGO... Midtour leave is now a trip to get home to see my child be born.

As time came closer for me to get home I learned that we were having a boy, and we talked about names, and settled on Aiden James. Aiden being a traditional Irish name, and James after the two friends we chose to have be his Godfathers.

I ended up getting home on November 24th, and on November 26th my wife gave birth to the cutest boy I had ever met. I ended up seeing him for the first two weeks of his life, and then I had to go back to finish the deployment.

I finally got home from my deployment, and then 7 days later when my wife was acting strange I told her to take a pregnancy test. Results were positive. We were having another child!

Shortly after that I was reassigned from Ft. Campbell to Ft. Carson. A few months later, on November 25th, we met our second son, Scott Conor. Once again I was the proud dad with the most beautiful baby boy ever.

Five months later, on April 16th, 2010, we were given another change of mission when a Developmental Pediatrician at Memorial Children's Hospital in Colorado Springs told us that Aiden had Autism. I had no idea what Autism was. I had never met anyone Autistic that I knew of, all I knew was something was going on with my child, and I finally had a name that I could start doing some research on. Boy was that research depressing.

1 in 110 children will be diagnosed with Autism, 1 in 75 boys, 1 in 88 Military children, 3 times more likely if you have a sibling diagnosed. No known cause, no known cure. As the signs in the forest always say "Abandon hope all ye who enter here." Instead of laying down and taking it though we decided to fight.

I re-enlisted and asked to go to M6 school, the Army LPN program. I was accepted, so we ended up shipping off to Ft. Sam Houston, where we met one of the first guiding lights in our journey. Ms. Sherri Sharp at Brooke Army Medical Center. Sherri is the head of the Speech Language Pathology program, and also is the point of contact for BAMC's Autism Team. She gave us the head start that we needed, and put us in touch with some resources in the community.

Aiden started ABA, OT, and ST within a month of us arriving at BAMC. He had received ST and OT while we were in Colorado, but he hadn't been making progress, and at the time we didn't know about ECHO.

Aiden had been in ST and OT for 4 months, and had made no progress when we moved to Texas. After 3 months of ABA we heard meaningful sounds. They weren't full words yet, but there was the beginning of communication.

Lets fast forward at this point. I finished M6 school, and received PCS orders to Madigan Army Medical Center, Joint Base Lewis - McChord Washington. I think with all the press JBLM has had lately I don't need to explain where that is.

When we arrived in WA we had to start services all over again. I can't tell you how frustrating it is to have to explain to the doctor exactly what referrals are needed because they don't know. We have been here for over 7 months now, and still have a referral that is sitting in no mans land because the doctor didn't want to put the referral in. (More on that later).

I'm going to jump back and forth for a quick second here. Scott was concerning us while we were in TX, and we were seen by a developmentalist at BAMC, and they said they wanted to follow Scott for a little while because although there were areas that were starting to show concern, there were no red flags or flashing lights saying look here we got another one!  We were okay with that, then we got to Ft. Lewis, and we saw another developmentalist who said that although he felt like Scott was on the spectrum, he would not diagnose until Scott was at least 4 or 5 and could have cognitive testing done. Are you kidding me? I'm asking if my child is Autistic, not Mentally Retarded (sorry for having to use the "R-word", but it is the current medical term).

We asked for a second opinion, and we were sent to The Seattle Children's Hospital Autism Center. They told us that our initial intake appointment would be about 6 to 9 months out, and we asked if we could be put on a wait list for if someone cancelled. We were told that wasn't a problem. 15-20 minutes later we were called and told someone cancelled and we could have that slot if we wanted it!

So, Aiden was in ABA, ST, and OT, and now we had to drive to Seattle for appointments for Scott, and I still have to go to work. We only have one car, we definitely have a very tight schedule.

The Autism Team nurse who we talked to said that it could take us another 3 months before we saw the psychologist for the evaluation, but that we also needed to look into a thing called the “SPARCS” Study (Physiology of Attention and Regulation in Children with ASD) and see if we qualified. We would receive the exact same exams, by the exact same psychologist, we would just be seen quicker because the deadline for the study was approaching. A few weeks later we were back in Seattle participating in the study. On February 3rd we finally received the letter we had been expecting, and dreading... Scott was diagnosed with Autism.

All of this has been said to answer one question. Why do I support CMKAA? I guess you have seen the long answer. The short answer is this, my children, and thousands of children like them, are stuck in an archaic insurance system that does not provide the benefits they need, nor the benefits they deserve. We are stuck with doctors who don't specialize in Autism, who don't know the special medical needs of our children, and who are unable to educate themselves due to the time constraints put on them by the system. We are stuck with therapy that is deemed medically necessary by 29 states, and the Surgeon Generals of the Army and Navy, but is called an "educational benefit" by TriCare. We are stuck fighting a system that is not in compliance with other federal mandates, but is overlooked because once again it is the Soldier or Sailor or Airman or Marine who must give up everything for their country and in return be given nothing. I for one am sick of that system, and it is time to fight back. Congress is on notice right now, and there are many of us who will be heard. I support CMKAA because all children deserve to have a fighting chance.

No comments:

Post a Comment