Today I thought about how much things have changed and yet how much they have stayed the same……in some regards.
I remember when Michael was about 4 months old and I had to go back to work. We left him with a wonderful lady who watched 4 to 5 other children in her home – one of them was her own child. Mike dropped Michael off in the morning and the kids were so excited when he got there, since he was the only small infant. “Put Michael down! Put Michael down!” they’d shout to Mike. I remember racing out of work to get to him in the afternoon. His caretaker had a huge window in front of the house where the play area was for the kids. So many times, Michael would catch site of me coming up the walk and start scooting over to the door, so excited to see mommy. I remember scooping him up and squeezing him – it was like the world just vanished away – it was just me and my sweet baby. His caretaker was such a sweet, warm lady who took such good care of him. To this day we talk about how blessed we were to find her and how much she loved Michael, just as if he was her own child.
Another thing I remember about Michael’s baby days is the attention he’d get everywhere we went. I remember people stopping to stare at him in his little pumpkin suit when we brought him to Target for his first Halloween photo. Once, a lady in Publix saw me pushing him in the cart and commented on what a happy baby he was, and that we must have a lot of love in our home. At a church craft fair, an Italian lady stopped to tell us how beautiful he was and told us to tie a red ribbon to his stroller to avoid the “malocchio” (the Sicilian evil-eye) because he was so sweet.
I still have very strong emotions when I pick him up in the afternoon………..but now they are feelings of anxiety. What did he do today? When I pick him up, will he be running around the school office with his aftercare assistant running after him? Will his aftercare assistant roll her eyes at me and tell me how difficult his afternoon was? Will he run into the ESE specialist’s office warranting an unhappy reprimand from her (again)?
People still stop and stare at Michael………but not really for the reasons they used to. Little kids often stop and stare at him when he begins vocalizing in a grocery store. Customers get alarmed when the lights in a small retail store suddenly shut off because he couldn’t resist flipping the switch on the wall. Cashiers look at him strange when he doesn’t answer their friendly questions like “Are you ready for Halloween? What are you going to be?”
Don’t get me wrong, I know there are plenty of people who love Michael just as much as we do. His teachers in elementary school and his new ones in middle school know how sweet he is and how much he really does try. He loves to be with his family – all his family – grandparents, cousins, uncles, aunts, and even close friends who have become like family.
But on a day to day basis, reactions to Michael can be disheartening.
Mike and I know how difficult Michael’s behavior can be. We live with it day in and day out and we will likely do so for the rest of our lives. We also realize that no one can understand Michael the way that we can. But what would be nice would be for others to just get a glimpse – a REAL look – at what happens to our hearts when people even hint that Michael is a burden on them. Autism or not, he is our child. We love him and we want nothing more than for him to be happy and safe. If we could wave a magic wand and change some of these challenging behaviors, we would. But we can’t. When others have to encounter him for a brief period of time, it’s not changing their lives all that much in the grand scheme of things. They will go back to their lives and their business. But when someone acts as though Michael is a burden – even when it’s just for a few minutes – it is heartbreaking. Little by little, with every sigh, every eye roll, and every stare – it’s one more little jab that adds to the sadness that autism often brings to families. And that IS life changing.
But as I’ve said many times, there are so many people who have come into our lives because of Michael that I wouldn’t trade for the world. And to those teachers, therapists, and amazing friends, I say “thank you”. You have touched my life and Michael’s in more ways that you will ever know.