In general, I am not very connected to the extended Autism Community. At one point, when Peter was newly diagnosed, I did go to a couple of Autism support group meetings but I found it so depressing I decided not to attend anymore. The first meeting I attended at one group ended up being focused around a woman’s husband who had just left her and the other group members’ experiences with this subject(which were the majority). Way too discouraging.
Then I tried another group. The majority of the meeting was spent listening to, and encouraging, a woman whose 3 year old son had severe aggression issues. He was only 3 or 4 and had recently knocked out his mom’s front tooth and given his 8 year old sister a black eye. He was on several different meds already. His mom had never tried and kind of diet changes or supplements. I gave her the numbers of our DAN Dr. and our nutritionist. I sobbed all the way home…for her, for her poor little son, her daughter, and out of fear that Peter would one day turn aggressive and we would not be able to handle him.
For a while I have toyed with the idea of going back to try again. So far the meetings always tend to be at days or times that don’t work for me. Maybe one of these days it will be meant for me to attend and it will work out. Even after about 7 years I am not in any hurry because of those first two experiences.
There are so many faces of autism. Each child functions uniquely and has their own quirkiness and struggles. For us, at this moment in time, life with Peter is like having a constant toddler/young preschooler in the house. We have to constantly know where he is…though it is much better than a couple of years ago when he would constantly bolt from us when outside or frequently try to escape the house. We cannot trust that his impulsiveness will lead him to make unsafe choices.
Being out in public with Peter is exhausting! You constantly have to watch what, or who, he is touching. He has an obsession with rubbing people’s arms. I always cringe at this time of year when it gets a little warmer and the tank tops come out. No matter how much we talk about or read social stories about keeping hands to yourself, he will reach out and rub random people’s arms. It can be SO embarassing. When he was little it wasn’t as bad. But now that he’s older, if people don’t realize he has autism, it can be tough. Thankfully most people are understanding once we explain…but it sure doesn’t feel good.
I am grateful that he speaks and can communicate, though at a very compromised level. I’m thankful that he is potty trained. I’m grateful that he is not physically limited. I have (mostly) accepted that without a miracle, which we have and will continue to pray for, Peter will never be “normal” and never be able to live on his own or take care of himself. That makes me sad.
When you have a child with disabilities I think you are much more aware of and appreciative of the little gains in development. The really hard part is the process of grieving the advances he will never make. That grief always catches me by surprise and feels like a punch in the gut. Like when I’m at Ellie’s school events and seeing the kids in the class he would have been a part of…or when Luke’s pretend play skills and language are skyrocketing past Peter’s ability and he is only 2 1/2. It’s like, on a smaller level, feeling the devastation of his original diagnosis over and over again.
I try really hard to be grateful that Peter continues to make gains. All forward progress is good. Our focus is to help Peter be as independent as possible. I pray that someday, when we are no longer able to care for him, God will touch the hearts of at least a couple of his siblings to take on the blessings and the crosses of caring for Peter. Peter may never truly understand how blessed he is to have been born into a large family!
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