Yesterday was a great day for BamBam. The four of us, at Zoo Keeper’s request, went for ice cream at the local outdoor mall. BamBam wouldn’t stand in line or sit at the table with us, but he did stand a few feet away without running further and would occasionally come closer for an M&M while the rest of us finished our ice cream. We were next to the sensory garden, which is sort of a musical playground, so we went over there to play for a bit. BamBam usually walks through to the gate in back, goes through the gate and around to the front entrance, then repeats the sequence until I get tired of trailing him while keeping an eye on Zoo Keeper and drag them both kicking and screaming to the car. But yesterday BamBam actually made social contact with two little boys and played a running game, their version of tag, for almost half an hour. It was amazing to watch.
And it got my stupid hopes up.
We went to a birthday party for a friend turning five this afternoon. We took two cars, but I really had high hopes that BamBam would actually play and maybe even connect with another kid. He was crying already when we walked into the building. He stopped and ran around touching things just long enough for me to say hello to the hosts and the birthday girl. Then he ran right out the back door and I had to drag him kicking and screaming right back through the party, stopping only to tell Sparky we were leaving, say hi and ‘bye to an acquaintance we only see at this friend’s parties, and turn around at the door to go back and grab the purse I had forgotten. Which I dropped twice because I couldn’t keep my balance with the 40+ pound screeching preschooler on my hip. And when I say on my hip, I actually mean that his hip was on my hip because he was rigid and straight as a board (other than the wiggling – I don’t know how he manages to wiggle and be rigid at the same time), with his legs sticking out behind me, perpendicular to my legs, and his head out in front of me. Much like a battering ram. And the looks I got from the adults, only the ones we didn’t know, suggested I must have used him like a battering ram to make him scream like that. Or maybe that I should to get him to shut up. Either way, they did not approve. And I couldn’t blame them. I, myself, did not approve.
It feels like every time I see some unexpected progress like we had at the sensory garden, something primitive inside me glimpses a “normal” life – complete with birthday parties and trips to restaurants as a family where we don’t have to take two cars so one of us can abscond with a screaming child at any moment – and tries to run with that hope, only to be smacked down by autism. It hurts every damn time.
Does that ever stop? I mean, he was diagnosed more than a year ago and the unruly behavior started long before that. Zoo Keeper has different issues, but the hope and disappointment sneak up on me in the same way. I love them as they are, autism and all. The autism is part of them. I keep thinking I’m used to it and am ready to just work on moving forward. But then I get blindsided by days like this. By hope for something that may be too much to ask of my precious, wonderful sons. And is probably overrated anyway. Maybe BamBam just knows something I don’t.
But I’m wondering tonight if this happens to any of you and how you deal with it when/if it does?
Michelle, you are describing what is, for me one of the hallmarks of autism. Unlike other parents who watch their children make a slow and steady progress toward their ultimate goal, we celebrate (like mad) our darling child’s success and then watch him slip back a step or two. We are left dazed and confused, ‘wait, I KNOW he can do it’ and not just a little crushed.
My twins are seventeen now, but it’s ridiculous how quickly I revert to the pain (and joys) of their younger years. Though they no longer hide beneath tables in restaurants or have me leaving a store in shame, they still suffer the effects of sensory overload. They’re just better at dealing with it. For a while you will need to be your son’s protector and help him learn how to handle those difficult situations. With time and lots of practice, he’ll learn how to cope – and when it’s time to simply take a break.
I wish I could say something that will make all this easier for you, but I’m the all that wise. What I can tell you for sure is that autism makes moms all the more special. We’re tested with fire and we learn that life’s minutia is simply that. I think it allows us to ignore those disapproving stares!
If it was up to me I would never leave the house. It was too exhausting chasing after Four, trying to monitor his behavior around other children, fearing he would have a meltdown at any moment. The Captain is much more adventurous, probably because he wasn’t the one that called every day to pick Four up from school because he was out of control. I have much more PTSD.
But. Things have gotten better! Four has been at a private school for a few years, and on medications that help his snxiety and impulse control. We can go places now, and it is often okay. The Captain took him and Five to watch his brother play baseball the other night, and they met two boys and played with them! Today, Four went with me and Two to the doctor’s office, and sat in the room playing his Nintendo and reading the whole time with no complaint. He did ask to leave when I started talking about Two’s oozing arm wound, but that’s fine. Oozing isn’t for everyone.
So, don’t give up hope. It’s distressing to imagine the future, so try staying in the present, or the near-future. Hope keeps us moving forward.
Thanks to both of you. It helps just to know there are people I know who have been through this. To know that we’ll come through this. To be reminded that we’ve already come so far. I forget that when I’m in the tall weeds.
There are good days and bad days. Be sure you remember the good more than the bad.
To quote Kelly Clarkson’s new song (which she is quoting from someone else) “What doesn’t kill you, makes you stronger.” I know you should be able to lift a friggin’ building by now.
Let’s face it, you have enough material to write a book, so, just keep storing these anecdotes up and you’ll be on the best sellers list before we know it!
Mmmm, easier? Maybe not, but time DOES help us in that we’ve been through more shit as each day slips past, and then, behind us. Time helps in that we have more experience under our belts. And yes, out there in the tall weeds we often feel totally alone and run over by a freight train. The good news is, we are NEVER alone in our mothering. (Example: above comments.)
I know those rude looks from other parents too but I’ve never let them bother me. In my mind I’m asking them, “what?! Like YOUR kid is such a fucking angel she’s NEVER had an issue/ incident /melt down/ situation?” (Okay, so MAYBE once or twice it WAS outloud…….)
Well, I have no kids. But still sending you much good vibes, for you and the kidlets.