Thursday, September 6, 2012

The atypical atypical child learns to fly

This week, we returned to Billy’s neurologist to talk about what’s going on seizure wise.
He had his first recognisable seizure in January this year, and a second one in June. In a 48 hour EEG, they found constant frontal lobe spikes (sub-clinical discharges) and the jury is still out on whether his increased staring spells and physical stereotypies are seizure related or not.
His neurologist is a reasonable man, who has known Billy since he was four. He is the head of neurology at a major children’s hospital. He has a little more of a tendency than I would like to shove Billy’s unusual neurology under a neat little autism umbrella, but he knows his stuff and he’s willing to listen.
Today, he acknowledged the atypical nature of our beautiful boy, in relation to the various conditions he has been diagnosed with. For new players, those conditions are autism, transverse myelitis, epilepsy, chronic constipation and reflux. He acknowledged the atypical nature of his relationship with introduced toxins like vaccines, medicines and pesticides. He also acknowledged something else that we really hadn’t thought about before.
As he played through a slideshow of Billy’s most recent MRI, clicking through slides showing cysts, hyperintensity and prominent perivascular spaces, Billy’s neurologist said, ‘So, we are definitely dealing with a highly abnormal brain structure here.’
We went on to discuss therapy and medication options, lifestyle accommodations and further testing. I didn’t cry (I suspect because the practicalities are much easier than the implications of words like ‘abnormal’) and I am quite proud of that fact.
To more experienced players in this game, I’m guessing those words wouldn’t be much of a revelation. In all seriousness, they are not unexpected words.
In reality, they hit me like a hammer to the heart.
This is not going to be pretty.
And if you are in the mood to throw epithets around about overly emotional parents being wrapped up in themselves, or not supporting or accepting their kids, then please… for the love of Bambi, click on another page for a while, because I’m going to try and share a few feelings here.
We, like most parents, did not set out to have a child with a disability. We didn’t decide after prenatal testing to go ahead anyway. We didn’t have a visit from a specialist soon after Billy’s birth telling us that there was something we needed to consider.
I’m not valuing those journeys over the one we have taken, just pointing out what ours was not.
Disability crept into our lives, accompanied by a charming (not) set of denials, rebukes and rebuffs from family members, teachers and medical professionals about being overprotective or panicking for no reason.
We saw, and continue to see our son’s challenges as they emerge, well before those who are not his parents. We accept them and him because it is as natural as accepting that today is a (insert today’s weather) day. It would be nonsensical to deny or consider not accepting them.
Because of this gradual journey, we have continued our parenting adventure using the same loving frameworks that any parents do. We all celebrate the now, we reference the past and we speculate about the future. We have been working on the well-worn theory that parenting is all about giving your child roots and wings.
So, today was tough.
Today I learned that the future might not be the independent, self motivated, career oriented thing I thought it might possibly be for Billy.
His brain isn’t just ‘wired differently’ as those puzzle piece adorned inspirational autism posters on Facebook would have us believe. It’s built differently. It is not capable of being normal in the normal sense of the word.
It’s not going away. It’s not going to ‘get better’. The best we can hope for is that it won’t get much worse, though the neurologist acknowledges that current trends are not massively positive.
Now, before you go, ‘Oh don’t lose hope…’ or ‘he’s awesome just the way he is…’, let me reassure you, this is not about hope or questions of awesomeness.
This is about cold hard imaging fact. A cold hard imaging fact we did not know yesterday. A cold hard fact that changes, in very specific ways, what we can and should expect of him in his future.
We are not giving up on him, or lowering the bar or thinking he’s hopeless. We have simply been forced to acknowledge something we didn’t know before… that his brain is not structured adequately for what we broadly call ‘normal’ functioning.
It’s not like we actually, rationally thought the autism was going anywhere. We knew once EI was over (maybe close to when it started) that pretending to be not autistic, or indeed practicing being not autistic wasn’t having the least bit of effect on actually being autistic. We may have ignored the more adaptive elements of EI, as we were intent on Billy benefiting so much from EI, he would be undiagnosed by primary school. That, in retrospect was probably a mistake.
We have launched a massive diet and supplement offensive over the last year or so, which has had nothing but positive effects on his health and functioning. But it hasn’t made the autism go away.
The emergence of other medical issues probably should have opened up our eyes a bit. To be honest, though, the indifference (at best) and blatant, offensive denial (at worst) from Billy’s school and GPs in particular, tempered our understanding a little.
So, knowing that Billy’s brain is officially and noticeably abnormal shouldn’t make the slightest difference, should it?
It probably shouldn’t, but it does. It just does. As a parent, as a mother, it does.
It brings to mind the good (I am not crazy, at least), the bad (I cannot let him out of my sight ever ever again) and the ugly (my body well and truly ballsed up brain building).
Regardless of bigger issues around acceptance and plasticity and diversity (of any kind), hearing this stuff hurts. It’s nothing like what Billy has to deal with, obviously, but it sucks. It’s not what a parent wants to hear, no matter how inconceivable what I really want to hear (anything from ‘we got it wrong’ to ‘it’s a miracle’ to ‘we can totally fix this’) is.
I share this not to whine, but to open minds to the idea that ‘hope’ and ‘grief’ are not mutually exclusive. I think I would be doing myself and many others a gigantic disservice if I didn’t acknowledge the negative feelings that come from realising there are rational limits to hope. It’s not all doom and gloom, by any means, but it’s definitely a wake up call.
People are great at platitudes in these situations. ‘You just never know…’ or ‘I read this story about…’ are both valid, affirming responses to offer.
We are not so great at going, ‘Wow, that sucks’, because we are too afraid we might offend someone by saying what everyone is thinking.
So, I’m saying it. It sucks. It really does.
It will be OK, and it is what it is, and he’s totally and completely the best boy he could ever ever be, but… today feels like the last page of Dr Seuss’s 'A Great Day for Up'.
We need to nest.
We need to re-think what his wings might look like, or feel like… or perhaps, how their structure might influence our thoughts about flight.

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Valerie's increasingly random ravings can be found at Jump on the Rollercoaster.


  1. Oh, Valerie... so very heart sore for you. :(

  2. I find it hard to hear how "high functioning", "normal", GB is and how overprotective I am. As the medical and educational data comes in and agrees with me, I should be feeling vindicated. Instead, I find myself grieving because a part of me wanted so much for those people to be right.

    "he would be undiagnosed by primary school." me, too. I hurt with you.

  3. You're right, it sucks. I read here because I work in the field, and because my sister posts (or she's supposed to, and I tell myself that my kids are just my kids. But I spent two hours o. Tuesday at the neurologist & neurosurgeon learning all the ways that my sons head/neck/brain are structurally abnormal. Learning that despite magical thinking on my part, I have a son with special needs and that somehow it happened when he was being "built" which makes me feel like its my fault-- even though I would tell any other parent it's not, just like I'm reminding you - it's not something we did. I will get through this, as you will - and our boys are still the amazing kids they were before the appointments. Take care, and take some time for you - I'm trying to carve some out to process all this new info about what will be.

  4. Valerie, I'm sorry you are in this particular "downswing of the rollercoaster." It's not a fun place to be at all! My daughter also has multiple seizures daily, in addition to her other disabilities.

    When you feel ready to come up again, you really will want to read the outstanding article series by epilepsy neuropsychologist, Dr. Robert Mittan. You can find them here: I promise the two three-part series of articles he wrote forExceptional Parent in the mid-00's ("Beating Bad Seizures" and "Raising a Kid with Epilepsy") will reassure and redirect your thinking in amazing, hopeful ways. And since that's what Hopeful Parents is all about, I figured you would appreciate that reference, at least down the road.

    Hugs for this difficult time now, and encouraging reading for a brighter future.

  5. Val,

    One thing I've had to learn on this journey is that we all need our times to mourn and to lick our wounds. If you didn't need that time, I would worry.

    Big hugs for you and your beautiful, amazing boy.