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
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
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
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.