I’m breaking a rule. It’s not something I do a lot of, although many who know me would call me names like “strong willed” “opinionated” and “loud mouth”. It’s true that am a bit of all those things, but I still am a rule follower. Some rules that I follow, the rest of the world doesn’t even know exists; for example, you never buy rolls for holidays, you always make your own. But, I digress. Today I’m breaking the rule that those of us mothers with “special” children live by. In some ways, that rule may be what gets us through the tough days, I don’t know, but whatever the case, we rarely speak of the heart break of having a child with autism.
Every time I buy special laces for his shoes because he cant tie his own, my heart breaks. Every time he hides and cries because someone was mean but he can’t tell me what the rotten no good parents should be fined kid should be kicked out of school I want to give him a piece of my mind dirtball kid said, my heart breaks. Every time someone tells me about a new study, a new technique or a new group home; my heart breaks. Every time I tell him he can’t do what his older brother can do, my heart breaks. Every year, at his IEP meeting, when the gap gets bigger and bigger between he and his classmates, my heart breaks. We talk about MODIFIED curriculum and paras that help and how to keep him on track and even though we call him 6th grade, he isn’t and he may never be. And my heat breaks. When the band teacher switches him to the tuba from the trombone because he can’t keep up with the music, my heart breaks (even though he loves the tuba).
Don’t get me wrong (and this is why the rule exists, so that we are not misinterpreted), I love my son. We call them special kids for a reason; they really are. But…I’m still heart broken. All the time I spend waging war against ANYONE (read mother in law here) who DARES to NOT think in BIG terms for Sam and his future, my heart breaks. Why? My heart breaks because I know. I know that there is a chance that Sam’s biggest career move will be a greeter at Walmart. And while I’m thrilled that there are companies in the world that will hire the Sams, my heart breaks. There is a beautiful flip side to this and there is much written about the wonderful ways these people see the world. Our Sam never ceases to make us laugh and his hugs are one of the purest forms of communicated love that exists in this world. But still, my heart breaks.
Every mother wants more for her children, but I have to learn how to be satisfied with less. And yes, the lesson there is so powerful that it could only be taught by Sam, but I didn’t want that job for him. And while I’m thankful for special ed teachers, I never wanted to need one. I don’t Pinterest wedding ideas for him (probably wouldn’t anyway….but you see what I mean) and I realize that I may never have an empty nest. Grieving the losses does not negate the positives. The rule says that we never complain, we should always be thankful, and in some cases we wear our “I’m the mother of an autistic child” buttons all over our shirts so that others can be impressed and give us praise, but honestly…..
It breaks my heart…….