We had Coleman’s 3 year review today. It was, in a word, depressing. Sometimes reality hits you softly and gently
like a breeze you barely notice. Other
times it’s like a hammer to the head.
Today was the latter, unfortunately.
It’s not that the news was surprising – it wasn’t. By standardized testing measures, Coleman has
made little to no progress over the last three years. I don’t put much stock in these types of test –
they are poor measures of ability for this population and I think that is also
true for Coleman. He is more than those
numbers show. But I couldn’t help but
think about the past as I drove back to work, wondering how my boy fell from what
I would have considered ‘high’ functioning many years ago to where he is
now: setting goals like being able to fold
a face cloth and not yell when people say hello to him. I tried to not think about it, I turned the
music up in the car and tried play upbeat music. But it was too late and my mind was racing
past all reasonable efforts to stop it. It
was a sobbing, messy ride and I had to sit in my car for another fifteen minutes
by the time I got to work to let the tears and redness go away. Ah, I know my little man is amazing but days
like today when Coleman’s inabilities are starkly laid out neatly in charts and
measures, and his need for so much assistance is so strongly spoken, I go
directly to the worst thing: what will
happen when to him when I die? I cannot
die. Not ever.
Parents of children with special needs face a painful,
unfathomable reality: they will need
someone to care for their adult children in the future when they are gone.
I cannot even begin to express the very deep and personal
agony of this. I am absolutely terrified
of dying. I think about who will tell
Coleman I am gone? How will they tell
him? How will Coleman possibly understand
where I have gone. Will he think I have
left him? What if Billy dies too? What then?
Will this heavy burden fall to our girls? Where will they be in their own lives? How will they care for Coleman?
The emotional burden is great because the reality is
daunting. The truth is that there is no
safety net in today’ society for this population. According to statistics, 85% of autistic
adults live with their parents. The
national shortage of caregivers and the incredibly low wages paid in this area
make the situation for our children ripe for neglect and abuse. And articles like the one this week in Psychology
Today underscore the problem we face:
What are parents like
me to do to protect our disabled loved ones?
How do we learn to trust caregivers if there is so much abuse out
there? Often hidden cameras are not
allowed, and even if they are, abuse captured on video may not end in
conviction. One parent in Massachusetts,
Paul Joyce, has the evidence of his son being repeatedly beaten, on camera, and
yet those responsible, even though found guilty, was given 18 months probation
and ‘ordered not to work in this field again,’ according to Joyce. The other perpetrator was simply ordered to
write the Joyces a letter of apology.
Worse, I think, are parents who have to make this choice
before death. Parents who can simply no
longer handle their child because they have become too big or too strong or too
aggressive. I will never forget the
heartache my own mother felt when she had to place my severely disabled sister
in a home – it nearly broker her. She
never got over it, and when Kiki died in the hospital from a perforated colon,
my mother cried and cried that she was not there for her. It was absolutely heartbreaking. My mother’s story is the same story for so
many hundreds of families. It is
unimaginable. In a Facebook group for
Parents of Special needs children that I am part of, this was written the other
day:
I know this is the
place I can go where people will understand my heartache. I moved my son out of
my house last night. My nonverbal child who speaks a couple words a year told
me, "No mama." as I left him. He's not too far away and I can visit
but, it's not an ideal situation. The pain of choosing the least shitty option
feels almost unbearable. Please pray for us. I am praying to God my son is not
as heartbroken as I am.
Honestly, I do not know this woman. But I thought about her all night when I read
it and cried thinking of her heartache.
And I prayed to God, please let that never be me. Please.
And today, after the IEP review, I prayed aloud again: Please.
I can’t die. Not ever.
See what happens when I go off script? I had planned a nice post as we approach our
last day together and bam, reality hammer to head and I’m a mess. I know I’m not dying. At least I sure as shit hope not. But the struggle is real my friends. I’ll be back tomorrow sunny and cheery and we’ll
end this year on a high note. J
❤️❤️❤️
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