I’m sure I’m not alone in the feeling that this life of parenting a child with disabilities and special needs is a bit like trying to ride a wild pony, unbroken to saddle. There are the moments which leave you feeling breathless and sweating with fear and panic. Then there are the sweet moments when you can feel the pony gentling under your touch, surrendering to the saddle and bridle. The transition to the knowing and trusting of your guiding hands. The process is at once exhausting and quite satisfying.
This past week began with the wild, sweaty, panicky struggle. The kind which makes you fear you are in so far over your head that the pony may break you, instead.
Nik’s been struggling with some odd gastric distress which, we have (we think) figured out is the result of either an enzyme deficiency or other metabolic process which is then complicated by his highly unusual intestinal layout. In any case, the treatment we’ve been using —until we can have our suspicions confirmed by a specialist, is dietary modification. To make a very long story— it’s taken us nearly three years to figure things out while our boys has suffered— slightly shorter:
We’ve recently discovered that the very medication which is supposed to be helping Nik’s nocturnal pains may have been contributing to them. Nice, huh? So we began the process of weaning the medication. A bit faster than we should have.
The first couple of days went fine; we’d forgotten to take into account the beauty of half-lives. On Wednesday, the shit hit the fan. The out of control behaviors, the frantic inability to cope with the merest of frustrations, the escalating self-injurious behaviors. My nerves were pretty much frayed.
Wednesday afternoon, we ventured up to the hospital (home of nearly all Nik’s specialists) for our post-neuropsych evaluation conference. Both Niksdad and I had been wondering how things would go; were the doctors impressed with Nik’s ability to use his talker? His stellar sorting and matching abilities? Or would they be wholly unimpressed at Nik’s trenchant refusal to play the evaluation “game” the way they required him to do? Would they see the kernels of brilliance everyone else sees in Nik? Or would they see his deficits starkly laid out in check-list fashion?
“Mr. and Mrs. Niksparents, we know this is only one snapshot in time, one data set, but we think it’s a fairly accurate reflection of where Nik is right now. Our findings lead us to think that, while he certainly has many autistic characteristics and warrants a PDD-NOS diagnosis, his intent to communicate, his desire to connect with people just don’t fit the criteria for an actual autism diagnosis.”
Oh, okay. Well, we can certainly understand that reasoning and kind of agree. Though, to be honest, his communication is a bit on the perseverative side and his desire to interact is significantly greater than his ability to do so appropriately. But, those things can be worked on, right?
“Nik’s been characterized as having ‘global developmental delays’, but, really he’s outgrown all that the term implies,” she continued. “When we think of delays, we reasonably assume that a child will, eventually catch up with their peers. In Nik’s case, he seems to be falling further behind his age group. Consequently, we really feel the diagnosis which best fits Nik is, well, MR.”
M.R? As in “mental retardation?”
My stomach lurched and I could no longer seem to draw enough air to breathe, let alone speak.
(We did not discuss the actual testing and quite where and how Nik fell in the ranges, but it was clear that he had not been able to show what we perceive as his true abilities on that long, long morning back in June.)
Nik’s current state of mild withdrawal symptoms from his Neurontin didn’t help as I found myself desperately trying to get him to show just how smart he was with his talker, just how much he could express of the things he’s learned. Had it been a movie, the whole scene would’ve had the viewer squirming uncomfortably in their seat, rooting for the little boy to “show those doctors how wrong they are about him!”
It was not a film. There was no carefully scripted happy ending in sight.
Instead, we discussed things like respite care, SSI benefits, the ARC, educational supports, Nik’s hyperactivity and the exhausting toll it’s taking on our family. The doctor encouraged us to get a second opinion from a psychiatrist who could also help us with Nik’s medication management. It felt as if we had crawled across the sand in the desert toward an oasis only to discover ourselves in the middle of a maze made of concertina wire and we were supposed to find our way out. Blindfolded.
For the first time ever in my child’s life, I felt physically ill at the prospects which were being laid before us. I didn’t feel this intense sense of loss and despair when he was born three months early, weighing barely more than a pound. Nor when he had his first heart surgery at just nineteen days, or his third —open heart surgery—when he was mere months old. Through all the medical procedures, the interventions, the fears that he might never walk —even his inability to speak— I have never felt so devastated as I did on Wednesday.
I knew in my heart that they had to be wrong. Nik’s never been good at testing in brand new environments or with new people. Once he’s explored and taken it all in, only then will he open up and show his true abilities. But, hearing the doctor talk about the”significant brain damage” which had taken place either in utero or at birth —the thin corpus callosum, the gaping holes in the white matter, the enlarged ventricles—brought me up short.
No one had ever laid things out so bluntly, so starkly for us. I know my son has brain damage; that’s not news to me. I have chosen to not focus on it simply because, well, I guess I was afraid to give it power. I see the great progress Nik makes when he works so hard. But I also see his constant struggles with focus, sensory regulation…a host of things. I know how much support it takes for Nik to be able to make those gains. I also know the brain is highly plastic and can compensate in remarkable ways; I have seen it in my own child over the years; he has constantly amazed us all.
But the ugly, evil crone’s voice in my head won’t shut up now. “What if they’re right? What if they’re right?”
The fear that I may simply be naive and overly optimistic battles fiercely with the to-my-core belief that they are wrong. Dead wrong. Still, the crone whispers in my ear in the dark of night.
Next: Riding the wild pony: trusting.
Also known as “How things have a funny way of working out.”