7 August 2003
Practically since the first day we brought Damian to Dr. Jay for a speech consult, other parents parents of neurotypical children have been looking at me with something halfway between pity and awe. I couldnt do it, You do so much for him, How can you be so strong? I think what youre doing is great. Youve gone through so much. And on and on. And on. And each time I smile and shrug and deflect. Yes, I enjoy the admiration, who wouldn't? But it doesnt seem to me Ive done all that much.
In the beginning, certainly that was true. Hours of floor time, hours of pushing Damian to engage with us, to try to talk to us, to feel more secure in the world, to be less fragile and scared and rigid and closed. And if Id had to continue at that intensity for the past two and a half years, yes, youd be right. Id be a fucking saint.
But its not like that, not anymore. Yes, Dan and I worry. Yes, we work harder in some ways when we play with Damian, constantly aware of his sensorimotor needs, thinking too of how to help him bridge his ideas one to the next and elongate play scenarios. And yes, we coordinate and plan and adjust plans and consult with therapists and push for services and investigate what to do next. Admittedly, thats probably not a description of your average parental mindset. But its more common than youd think. Were far from alone in this, Dan and I. Coreys parents do it too. Jules parents? Them too. Every child in Damians class has parental advocates. I see them all the time, talking to their kids in that close, intent way. I talk to them as we wait in the hall for the classroom doors to open; we talk about IEPs and mainstreaming and How many hours of OT do you have? We just got ours cut in half. For me, this is normal now. This is my reality and so its odd to be complimented for it.
It changes things, this vantage point. At Coreys birthday party a couple of weeks ago, the boys were all playing around and among and with each other. Lucas mom watched him with a smile. She said, I cant believe how far hes come. I dont know what Damian was like two years ago, but Lucas and she shook her head. Yeah, Damian too. Its like a personal miracle, this child who has become complete. She added, If he stays like this, doesnt progress any further, thats even okay. I feel like I have a real kid now. Yes. And thats what makes it all worthwhile. That makes us forever different as our children prepare to enter the mainstream, maybe even become indistinguishable from every other kid in the elementary school playground. Well always watch a little closer, worry a little more. But well also always be so amazed at how far theyve come. At least, those of us who have children teetering on the edge of the diagnosis.
No, I take that back. Even those who arent so lucky have reasons to smile. I recognized another boy at Coreys party. Keith was in the first early intervention class with Damian (and Corey and Jules and Lucas). Hes more severely impacted. I often see him at school, wandering around the yard on his tiptoes, looking dreamy and not entirely present, as his floor time therapist runs alongside, working so hard to entice him into engagement. I thought he was one of those lost puppies. He certainly was two years ago. He stimmed constantly, never spoke, never seemed to notice anyone around him. But at the party, he was talking. His mom said Were going to have cake now, and he said Want cake and smiled. And during a game of musical chairs, he got up and ran around the chairs with the other boys and sat down firmly on a chair. He was maybe a beat behind the musical cue, but he did it. He even won one round. Is he recovered? No. Will he ever be? I doubt it, not completely. But he has come far too, and his parents too have reason to smile and keep on pushing.
The thing is, I see all this. I see Lucas mom and how hard it is for her to get services as a single working class mom of four kids. I see Keiths parents and how they hover over him and guide him through the tangle of his life, knowing he may never step out there on his own but loving him anyway and keeping on going because yes, it does make a difference. I remember another mom I knew last year, who decided ABA was the way to go and called Ivar Lovaas' organization directly -- again and again, pushing until they made room for her daughter in their program. How then can I accept the sainthood so many people want to confer on me? Im not exceptional in this. If your child has needs that go above and beyond the standard parenting book conundrums, you deal. You discover a whole other community, other parenting books, another world that lies right alongside the one you knew before.
Chances are, if you have a child in the public school system, he or she will have an autistic classmate at some point. That kid may be like Keith and need someone there every minute lest he wander off into his own dreamscape. Or that kid may be like Damian, so able to blend in youll never even know hes different. But his parents know. And his parents live in two realities: yours, as regular parents, and that parallel dimension, filled with occupational therapy, adaptive phys ed, ABA or floortime therapy, and endless paperwork and worries.
Parenting is hard. Parenting a special needs child? Yes, harder. But its also extraordinarily ordinary. You do what you need to do. Does every parent rise to that challenge? No. But does every parent rise to the challenge of having a colicky baby or a terrible tantrumming toddler or a back-sassing teenager?
Whenever someone compliments me now, I try to smile and say Yes, its been hard, but its so worth it. But sometimes what Im really thinking is Id rather have my child than yours. We know what his issues are, were dealing with them early, hes progressing so far and so fast. You dont have the knowledge, the help, you dont have a team of people looking after your kids needs and believe you me, your kid has needs too. Every kid does. You just may not know yet what they are.
But what Im mostly thinking? When Damian runs to hug me after school and blurts out some event from the afternoons class, when he tells himself a wonderfully imaginative story in the car on the way home, riffing off one of his picture books and when he negotiates with me: Okay, we can go to Whole Foods, but only if its quick because I have to go home and play a froggie game, I think to myself that you who compliment my martyrdom dont know what youre talking about. Im the luckiest fucking parent in the world. Im lucky because I know how amazing and extraordinary this everyday prattle really is. And Ill never ever forget. I cant. I straddle two worlds still.
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