What Are My Goals for My Child?.....

Someone posted this question on the message board for our 1p36 support group. Its such a loaded question for me and I couldn't help myself in my response. It was so long, I thought it was worthy of posting

"I'm reluctant to share my dreams but what do I have to lose? Like my other children, I want Aaron to be the best that he can be. I don't know what that is right now but I'm trying to give him the best chance he has to get there. Dare I say I want him to have a job and live independently? I'm sure others think my goals are unrealistic but I'm not going to limit his potential just because some people have become experts in documenting what our kids CAN'T do. Knowing our kids' limitations and challenges is definitely important so that we can properly navigate our way to help them as much as possible. But at what point are the"experts" and "professionals" going to start studying and researching what therapies and programs address the "source" of our kids' problems and not just manage the symptoms? The source of our kids' problems don't just include missing genetic material. There are other issues. When is someone going to think outside of the box, like they did for Down Syndrome, and explore therapies our children will respond the best to, instead of throwing us a cookie cutter approach to their issues? When Down Syndrome was diagnosed early on, it was assumed these kids could not learn nor have productive independent lives.They went from being categorized as severe to profoundly delayed to moderate and even mildly delayed. Why? Because someone decided they had potential, taught them like everyone else, and if that meant starting a lot earlier than other kids and increasing the intensity of their intellectual curriculum, so be it. Down Syndrome going to college? Years ago it was "no way". Today its "yes way" but they had to take a different path than most. I have become Aaron's student in his first 15 months of life and I'm trying my best to apply what I have learned to his well being. My goals are sure to change as he grows and develops and I discover the path he will take. He is so young that my experience is very limited but that's just my two cents.Ronette (Aaron 15 months, 1p36 & IS)"

Why do I feel that I have to apologize for having dreams for Aaron? No one else apologizes for their neurotypical children. I guess its not having dreams per se but the types of dreams I have for him. Anyway just sharing my thoughts....

Where Did the Time Go?

I just realized that Aaron will be 15 months old tomorrow. Where did the time go? Having two other children, I knew the time would go fast but its so different with him with delayed development and all. Since we got through the infantile spasm episode, I have been thinking a lot about the best way to move forward from here. How to get everything done....priorities, etc. I have been quite distressed about being so far behind in our ABR hours but I didn't quite know what our goals should be in light of the context of our lives and what is most realistic. I have set a goal of a minimum of 15 hours a week. This would have been realistic to attain with my original part-time schedule. But its going to be quite hard for the next 6 weeks because I have to work a full-time schedule to make up for the hours I will miss for the whole month of March. Aaron and I will be going to Wisconsin Hyperbarics for HBOT therapy. Its six hours away so we will have to stay in a hotel for the whole month. We were blessed to receive one of their grants giving us a 67% discount. Anyway, I will be working very hard the next six weeks. I got re-acquainted with a video of a little girl that started ABR when she was 15 months old. Ironic huh??
Here is a video of Helen after 2000 hours of manual ABR. Amazing!! She went from not being able to sit up or crawl to walking in 2 years. That's what I'm talkin about! The guy in the video is also the one narrating. His name is Leonid Blyum and he invented ABR about 15 years ago. He personally evaluated Aaron the same way when we went to Canada. I remember him saying that if I worked very hard the first year, we would see very good results and Aaron would respond very quickly being so young. Its been 7.5 months since we started and I feel so guilty, like I have not taken advantage of the advice we were given. I really have but we have had so many health issues, hospital visits, etc, sabatating things. But I will stop with the excuses. We have got to get this done. So she will be our motivation when it gets hard. I will think about this video and know that I have no choice but to press on....

Getting Back on Track after the IS Detour

As you know, we have been battling infantile spasms for a few months. Aaron had his last ACTH injection Monday night and returned to daycare. Its been so long and hard and this brought tears to my eyes. Two months ago he could not have done this. If we sat him up in one of these seats he would just fall over face first on the table. He is also smiling and laughing again.

So far we have completed 234 manual hours of ABR which has helped him get this far in his upper body strength. I'm hoping that we will get him to the point of sitting independently and comando crawling in the next few months. But this moment has me super motivated to keep going. Look at this photo. His cheeks are HUGE from the steroid injections.

He is sitting so naturally with no supports. Just his hands at midline. He is also eating table food on a GFCF (Gluten Free Casien Free) diet. Here he is getting acquainted with the little girl his left. He really liked her :)!

A fellow blogger Mom calls them "inchstones". I'll take it!

How Do I Get It All Done?

Sooo sorry for such a delay in posting. My initial goal was to post every week, but invariably I just didn't accomplish my goal. But the saying goes that "if you don't shoot for anything, you will hit nothing". So I press on trying to carve out time to get everything done. Before Aaron was born I worked full-time or so I thought. Even though I'm working my job part-time, I work longer and harder than I ever have. Six hours of sleep is the goal every night and I'm so proud of myself if I make it to bed by 11pm to get back up at 5am for ABR therapy. Aaron didn't catch on to the nursing thing very well so I had to start pumping. I was determined that he would get the same benefit of breast milk like his big sisters. But since he has special needs, I decided I would make sure he got breast milk for at least 2 years. Boy did i underestimate how tired I would get of pumping everyday. At 2 hours a day, that's 14 hours a week! A part-time job by itself not including 15-21 hours of ABR, 10 hours of FHC, other therapies, etc. I am so much more appreciative the little and big things in my life now. Ten more months until Aaron is two and I can exhale a little bit. Have to go but look out for the next post about the status on his infantile spams.