What does autism mean to me?
What is autism? Does it define my child? Does it define me? What does it mean for my life?
These are the questions that run through my head every night after the boys go to bed, when I get to sit own by myself and think about the events of the day. These are the scary questions that no one really has an answer to. These are the questions that motivate me to do more, read more, be more for my children.
What is autism? It is a vague word with a definite stereotype. My own extended family members have told me or my mother that they just don't see it, the boys are too one thing or another to be autistic. They don't rock or flap as much as they think they should. They don't bang their heads against the wall or throw insane temper tantrums (in front of them). Even better is she they focus on one thing instead of the whole and rationalize that it is not autism because their own child didn't talk until after the age of two or loved to watch Thomas the Tank Engine. They don't understand that autism is a sum of parts. Simply developing language later than average or liking a specific subject to not make a child autistic. On the other hand, a child doesn't have to hit their head on the wall or rock in the corner. It is the sum of its parts and presents differently in every child. Every book I have read and every professional I have talked to have uttered the same general statement, no two children are alike and no two autistic children are alike. The best response I ever got when I was telling my family and friends about the diagnosis was from my cousin, "now you have an idea of how this battle MIGHT go," followed by his father, "Are they still Gabe and Jude? They are good kids." I haven't told them or thanked them, but there have been many nights since then that I have repeated those two sentences and managed to find the strength to get up with the boys the next morning and face the battle of the clothes.
Does autism define us? I'm sure that depends on who you talk to. We are always busy. We live in a bubble of therapy more therapy, accidents, more therapy, potty training, therapy, and work. Between the two boys at ages 2 and 4 we attend 19 hours of therapy. Luckily 16 of those hours take place at home or at grandma's daycare. In my opinion, autism hasn't defined us, just most of our time. It has affected how we expect the boys to react to new situations but has not stopped us from giving them as many new experiences as possible. It has given me the warning that my boys may be volatile and need more patience and understanding than most children, but has not given me an excuse to be lazy and let the. O or have whatever they want whenever they want. Instead, I see that I am raising two special boys with unique personalities and strengths who need more concrete rules and consequences for every action every time so that when we are around that extended family that just can't seem to believe they are indeed autistic, I can say that is what we work on every day. I know we work on expressing emotions properly, communicating wants and needs, and being considerate of all people. We struggle to instill a healthy wariness of strangers. Like my cousin said, I have an idea of how this battle will go, but I am not afraid to throw out that idea and make a new one as we need so these two boys get everything they need to be well rounded.
As for my life. Autism has reshaped just about every dream I had for the future into an amazing adventure. I get to see life through the eyes of two autistic children. I get to see how interesting trains and constructions vehicles can be, how raw emotions can be, and hear every thought I didn't dare say. I still get to be the mother I always wanted to be and I get to see how we'll I can do when my patience is pushed beyond normal limits. I have learned how to figure out the most random bits of conversation that come out of the blue and read situations an emotions of my own children as well as most of the people around me. I have learned more about communicating with other people from my sons that look only look at me about 5 times in a typical day than I learned in 26 years of communicating with the average population. Autism hasn't defined my life or my children, but it has changed me.
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