It seems like I'm always seeing something about Autism, and of course, I read everything that I come across; this can be a good thing, or a bad one, depending on the day. Something that really bothered me about when J was first diagnosed is that no on could ever give us a picture of what his future might look like. We heard that early intervention was crucial (it is.), that it can make a big difference (it does.), that it changes lives (it can.)...but no one would ever tell us whether or not he could be independent, whether or not he would ever talk.
I was sitting in the waiting room waiting for a laser appointment this week and I picked up Newsweek, and what do you know, the first article I come to is about "the perpetual child-the adult child with autism." It was all so grim. Most marriages end in divorce with a special needs child involved, most parents can't afford services once the child ages out of the school system and how terrible life is at that point, most of these kids won't go on to be independent. I don't know, but I guess I just think it's so much more complex than that, and I may be fooling myself, but there are just so many factors that intertwine that I believe can make or break success.
I will be the first person to tell you that we are extremely lucky to have the insurance coverage that we do and that we are able to financially cover any gaps for additional therapy. We are also lucky that I can stay at home and work with J&J2. In fact, once J starts school, we could really pack it solid with preschool and therapy, but is it really worth it? Should my 3 year old not be allowed to be a kid first and autism second? Most of the time, I think I do pretty well with it, but if I'm being completely honest, some days I struggle to find that right balance. Because of this, I have not fought for any more therapy, I have not fought for year round school, and I have decided to put J into 3 days of preschool instead of 5...he's only 3 after all. And yet, while I feel it is right for him...I feel guilty. What if I made the wrong decision? Trust me guys, it sounds ridiculous, but these are decisions that I agonize over.
My life revolves around therapy, studying to be/do therapy all day long...every day. I try to come up with creative ways to make sure that each day is therapeutic, thought out, and done with purpose in order to benefit my child. I research different therapies and activities that we could do. I worry that he's too high-functioning to be in a contained class, but not quite 'normal' enough to get by in a regular classroom...we're in a limbo sort of situation. Yes, by record, we do 3 hours of therapy a day, but in actuality, we do it 24/7/365 days a year, we just incorporate it into fun things that our child enjoys. Anyone can do this...anyone. If you are willing to learn, you can do it.
I will get on my soapbox another time regarding my theories on vaccines, alternative medicine treatments, and what I perceive to be the extremes that can be brought about by an Autism diagnosis. I don't want anyone to think that I judge another parent's decision, as I think everyone only wants what is best for their children, but I feel like alot of the grim reports never take into account that there are some happy(er) endings and lead people to take some really extreme measures.
So, I say this to those just beginning the journey. If you aren't given a prognosis (and even if you are!), make your own. Change it and shape it until it is what best benefits your child and your family. Start early with teaching your kids what skills they will need to be independent. What are those? What do you need to know how to do in your day to day life to survive, keep from being taken advantage of, and ultimately thrive successfully?
There are many, many people in this world that are told that they won't ever do something, yet they do. Hope, always have hope...and help create those good stories that parents of special needs children also need to hear about.
Need some inspiration? Read this amazing story about an amazing little girl. Like I said, make your own prognosis.
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