It is one of the less attractive aspects of child-rearing that the little buggers seem to have a knack for changing the game on you just when you think you have them figured out. No sooner do you think that you have a handle on the whole newborn thing, they go and start crawling, and the fact that they will no longer stay where you put them forces you to reassess everything you do. Your happy little grade-schooler overnight morphs into that most-dreaded of all jungle creatures, the “Tween” and suddenly everything you do as a parent is dead wrong. The feeling of competency as a parent is fleeting. I don’t care how capable that mom at the bus stop looks, scratch the surface and you’ll find someone who’s constantly off-kilter, holding it together with paper clips and duct tape. Just like you.
When you’re living life on the spectrum, raising a kid with Asperger’s, it’s really no different. They grow up at a different pace, and with different quirks, but they do grow up in their unique way. Little Man has been surprising us this way a lot recently.
This fall has been rather ambitious. After last year’s debacle with the bigoted private Montessori school, we enrolled Little Man into two different preschools for this year. Three mornings a week he attends a private community preschool that leases space on a county-owned park that is also a working farm. Many of my friends’ kids attend this school and have loved it. When I was first told that I would not be allowed to send Little Man back to his other school, this school was my first phone call. I will forever be indebted to them for the compassionate and caring response I received. Five afternoons a week, Little Man attends the local public special needs preschool program.
I have discussed the issues that surround public special needs education before. And as recent news stories will attest, special education in America is a hit or miss proposition. School systems are required by law to provide it, but often underfund it, understaff it, or fail to watch over it. I am blessed to live in a county that has a vibrant special needs program, and a community blessed with excellent, caring special ed teachers. My son loves his teacher, Miss Katie. He calls her “sweetheart” sometimes. If there is even a hint of protest at having to go to school, he softens when I remind him that he’s going to see Miss Katie. If he were a little older I’d swear he has a crush on her.
We’ve also kept up private therapy, both speech and occupational, and we’re doing swim lessons. It’s a full schedule, and keeping up with it has been grueling, both for me and for him. Two different schools three days a week, school five days a week and therapy two days a week is quite a schedule for a four-year-old, disability or no. And it took him almost a month to adjust to the change. I know his teacher at the farm school thinks we’re a little crazy.
But we had our reasons. Little Man is at a stage in his development where his brain is a little sponge, capable of absorbing things quickly and making rapid strides in a short time. And indeed, he is an entirely different little boy than he was before school started. His social interaction has improved dramatically. His speech is coming easier, and though he is still engaging in way too much scripted speech, he’s made progress.
The most dramatic improvement has been in his eating. The little boy whose signature trait used to be his refusal to eat anything in quantity and from only a small range of foods now surprises us daily with what he’s willing to try, and how much he’ll eat when given a chance. Little Man now eats peanut butter and pasta. He’ll put away kiwi fruit and now eats cupcakes with gusto. Yesterday at the grocery store, he insisted on buying celery, and he was so excited he couldn’t wait to get home to try it. Literally. His volume has gone way up too. Although we still keep a watchful eye on whether he’s putting on weight, and monitor his percentiles, mealtimes are no longer the minefield they were two years ago. We’ve even started adding small quantities of dairy (mostly cheese) back into his diet, because we have discovered that cheese is a huge motivator. Promise my son cheese and he’ll try just about any other food once.
I have to admit we pushed him a little, and it’s been really gratifying to see him not only stand up to our expectations of him, but in a lot of ways exceed them. Sure, kids with disabilities cannot always do what a “normal” kid does. A paraplegic might be able to drag himself up a flight of stairs, but they should not have to. A kid with a severe case of autism might not be able to talk, and even if they can may not be able to have a conversation. But I’ve seen parents cop out on their kids, too. The truth is the list of things that a disabled kid can’t do is often a lot shorter than his parent thinks.
Take that classic bugaboo for kids with autism – the ability to transition and adapt to new situations – the fact that it’s going to be difficult doesn’t mean you shouldn’t try. And it’s definitely true that very often kids on the spectrum cannot live up to the social expectations of being out in public. Inexplicable things will send them into a screaming fit. But I do know parents who never challenge the presumptions of what their kids can or can’t adapt to. If the child demonstrates a fear of a certain kind of shopping cart, the parent will spend the rest of his life assuring that Junior never again encounters it. If the child acts out when they try to take him to a birthday party, the child might never again accept an invitation, or at least not for several years. Once bitten, twice shy seems to be the operating principle.
In fact it’s very easy to become almost enamored with the “specialness” of your disabled child. You are the parent of a beautiful, unique child for whom the rules that seem to bind others just don’t apply. There is a certain wonder and adventure in discovering parenting methods that work for your very different child. And quite frankly, it’s a great way to shut up judgmental parents who want to tell you how to raise your kid. Play the “autism card” and not only do they forfeit completely any right to question you, you become their brand new favorite supermom. Because hey, if you have a disabled kid you must be a saint, right? Well, that’s the theory anyway. The allure of being “special,” outside the rules others have to play by, has its charms. Given how difficult raising a special needs kid is, it’s actually surprising more moms don’t fall into this trap more often.
The trick is to never let the diagnosis turn into an excuse. The diagnosis can explain behaviors and educate you as to why something is happening or not happening. But pointing a finger at the diagnosis and saying, “because of this my child is absolved from trying to do something other kids his age can” is a whole other matter. You’ve crossed the line from compassionate parenting of a disabled child to copping out.
People marvel at Little Man’s ability to calm himself when he starts to get anxious and wind up towards a tantrum. I’ve had parents, teachers, social workers, therapists, and others tell me how amazed they are at his ability to self-soothe, something that kids with Asperger’s often have difficulty with. And it’s a skill that has come with much hard work on our part. We’ve worked extensively with him from the time he was a toddler, teaching him that he can pull himself together when he feels like he’s losing control of his feelings. While it was hard at the beginning, and he’s by no means perfect all the time, he’s at a place now where most of the time, if he’s upset, with a few minutes of conversation, a couple deep breaths, and the occasional time out, he can work it out.
It’s a fine line that every parent walks with toddlers – teaching them that they can control how they express their feelings while still communicating to them that it’s perfectly natural and okay to have the feelings in the first place. With autistic kids, the reaction is so disproportionate, so overblown, that the temptation is to assume that it’s uncontrollable – that control is something the child simply can’t learn right now, and the only thing to do is remove the child from the situation and pray the screaming stops. It was perhaps a willful blindness on our part that enabled us to avoid the trap. We simply didn’t accept that it was impossible or even difficult. Until he demonstrated to us that he couldn’t control himself, our presumption was that he could, and we would continue to try to teach him to do so.
I’m not perfect at this, though. Even I fall into the trap. And over Thanksgiving, Little Man found a very special way to remind me that I should never presume that he can’t do something.
The dive shop in my community put together a Thanksgiving weekend dive trip to the Bahamas, one that was so inexpensive that we couldn’t pass it up. And although the resort hotel we stayed at was run down, the diving was excellent. The other attraction that seemed to not have suffered the ravages of time and inattention was a real, honest-to-god twenty foot-plus high circus trapeze, manned by a troupe of three performers who did a really basic acrobatic and trapeze show in the afternoon, and gave lessons to guests during the day.
The first day after we arrived I was supposed to go diving. When I woke, I realized that I wasn’t going anywhere. The muscle in my back just behind my shoulder blade had seized up overnight, immobilizing my neck and putting me in a state where nothing was comfortable most of the time, except for those moments that were punctuated with sharp, blinding pain that caused me to scream. Until I could spend a few hours on my back in bed and get a proper deep tissue massage from someone competent, I was useless. My ever-reliable, wonderful husband agreed to watch Little Man for the day while I lay in bed reading, and occasionally screaming.
By lunch I was eagerly awaiting a massage and had made it about halfway through my paperback when my husband and son burst into my room, triumphant.
“Tell mommy what you did.”
“I went on the trapeze,” Little Man said.
My husband was beaming. “Twice!”
There was that moment of shock as I visualized it in my mind – my son twenty feet in the air, swinging from a slender bar with nothing but a belt and few pulleys for safety and net for when he fell. My heart jumped.
“He went all the way up there?” I asked.
“Yeah, he just climbed up the ladder, and he did it! Then when it was over, he did it again!”
I was proud of him. I would never have thought my skinny little boy with his poor muscle tone and his grip problems would have ever proven to be a budding trapeze artist. Of course, fate being a cruel mistress, there are no pictures of him on the trapeze. Daddy is not as camera-happy as mommy, and missed the chance to photograph the event.
And I knew in my heart of hearts that I would never have allowed it to happen had I been with him instead of his daddy. I would have assumed he couldn’t, that he would get up there and choke, that there is no way he wouldn’t get up there and freak out and balk at actually jumping off the tiny platform. Had it been up to me, I would have denied my son the joy on his face, I would have assumed that he was incapable. Because he was on the spectrum. I was guilty of presuming that the mere fact of his disability precluded even an attempt. He would not have been able to demonstrate the newfound confidence in his body that we had been seeking for months in his occupational therapy.
The list of things my son can do is obviously a lot longer than I think it is. And it includes swinging on a circus trapeze.