Ok, maybe not completely defeated, but the news we got today just reaffirms my belief that hard work, building a great support team, and aggressive therapy can make the difference. That said, did we do everything possible? I don’t think so, but then again, if you think you’ve done it all, maybe you are missing something else. To put it in a sports metaphor, go 110% and leave it all on the field … but know that there is always something more you can challenge yourself to do better next round.
We followed up with J’s developmental evaluation (from early December 2007) with the therapists today. The ladies at Developmental FX are just awesome, and they really care about what they do. They did his developmental evaluation back in August 2006, where they couldn’t even do age appropriate testing (he was physically 4 years old) and pegged his development at 22 to 29 months of age (mental, speech, physical, etc). Keep in mind that those numbers were similar to the speech eval that was done at University of New Mexico Hospital in March 2005, and he had made _progress_ in the 3 months with us prior to his 2006 eval. Scary, eh?
Well, we have the “final” report, although we would like to work in inputs from J’s biological parents (where he is now), but they still haven’t submitted their forms or made an appointment to meet with Developmental FX yet. In a nutshell, Developmental FX was very happy (and maybe a little surprised) at how much J has grown. They now estimate him to be around the 52 month (4 years, 4 months) developmental stage. At the time of the eval, that puts him only about a year behind!
Through hard work, a great support team (both professional and personal), LOTS of positive re-enforcement, education (for us and J), a (very) little medication, the GF/CF diet, and just plain challenging him to develop and grow, we managed to do over 2 years of developmental growth in about 15 months. Something like 176% growth and developmental rate? I’ll take that! I think his rapid ascent makes it pretty obvious that _he_ was not the problem, but rather it was his old environment and lack of a good support team. Reading his old reports, he had some pretty good early intervention support, but somehow, it just didn’t stick.
Could *we* have done better? Probably! We did have quite a few hiccups along the way, and other external events that made it difficult for him to focus and increased his overall anxiety. As we got closer to what became the transition back to his parents, his anxiety level was visibly high — huge increases in his door fixation, thumb sucking back in full force, even some behaviors that were completely gone came back (like the head shaking) and more frequent hand flapping. He even lost some of his language and looked “lost” more often. It’s really sad to see a child fall apart right in front of your eyes.
Naturally, this report is bittersweet. We are very proud of the work we have done, the progress we’ve made together, and the foundation we’ve helped him build. At the same time, we can only hope that he continues to get the same support and dedication that we’ve given him over the last 20 months. Now that we are no longer directly in the picture, we have to rely on information that trickles back from his support team as well as others who we have crossed paths with and have taken an interest in him (he’s a really likable kid). As much as we’d like to continue to be involved in his day-to-day, the emotional trauma and mental distress that bouncing between the households was causing would more than counteract any benefit we could add — and that’s something that we think and grieve about every day.
We still believe that J has the ability to be mainstreamed, but he still has a long way to go. We know that his parents are busy and work and all of that, but we hope they can find a way to keep giving him the attention he will need to succeed and have a quality life (meanwhile, not ignoring his little sister, A). If they don’t help him succeed, it will be everyone’s loss — he’s a bright kid and has a lot to offer.
The take away from this? If you have a child with autism, DO NOT GIVE UP! Anything can happen, and if you WORK HARD and be open to new ideas, talk to your community and support professionals, build a network (personal and professional), you have a great chance of giving your child the ultimate gift — a quality, and independent life. There are no “do-overs” or “I’ll do it tomorrow”, only do it now. To quote our Jedi master Yoda, “there is no try, only do”.
Seriously, though, you are your child’s only true advocate. You may build a fantastic support network, but they are only there to support you help you and your child. The effort you put in will bring you rewards that money cannot buy.
Whether it is or isn’t someone’s fault that your child has autism, or that $deity is to blame or whatever is all TOTALLY IRRELEVANT. The issue at hand is WHAT ARE YOU GOING TO DO NOW! And that can only be TAKE ACTION. Time is running out, so get to it.
We did it in a short time, with no forewarning, no training, heck, not even a clear timeline or future. If we can, so can you.
Love your children and work your a$$ off now … you can always sleep next year. 
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Autism, Gluten Free / Casein Free | Tagged: casein free, celiac, cf, gf, gf/cf, gluten free, wheat | 
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