Coleman turned 18 this past year, and with that, a new perspective came clearly into vision.
First, we had to apply for legal guardianship of our
boy. This required new assessments from
a psychologist, a social worker and Coleman’s doctor. Abby and Emma also had to sign, essentially validating
for the court that Billy and I were honest, and the Coleman truly was, in their
opinion, unable to advocate for himself.
The assessments were done via conversations with Billy and I, with his
teachers, and watching Coleman perform some ordinary activities at school. They also reviewed all of Coleman’s previous
records and assessments. It was no
surprise of course that they determined what we already knew to be true:
Coleman Fennelly is an 18 year old young man with primary
diagnoses of Moderate Intellectual Disability and Autism Spectrum Disorder
(ASD), Level III (Requiring Very Substantial Support). He also has several complex
medical conditions that require constant vigilance and awareness, not only of
medical interactions but also the need to monitor his health status on a daily
basis. He is not able to state, or advocate for, his own health needs. Because
of his level of Intellectual Disability and his inability to understand his own
medical conditions, or receive and analyze information required for other major
life decisions, Coleman will require a Full Guardian to make decisions on his
behalf and advocate for his ongoing needs.
It was a bit humbling, honestly, asking the court to provide
me with the legal right to something which I have always taken for
granted. The right to speak for Coleman,
the right to seek out and choose treatments, the right to pick therapies, the
right to fight for more, or even the right to accept less. It was momentarily terrifying to think of
this being denied, leaving Coleman to fend for himself or a random, nameless
court appointed social worker to make decisions for him. And I thought then, and still think today, of
the many parents that have walked this road before me, and the many that will
follow after me, and how very, very sad this whole process is. And what’s worse, it’s just the
beginning. Guardianship marks the first
official step forward on the path toward the Turning 22 Cliff that is, for us,
just four short years away.
The state of affairs for individuals with special needs over
the age of 22 is nothing short of appalling.
Lack of funding and programming means so many kids simply have no place
to go. Imagine being in school for the
last 12 or 13 years, with friends and teachers that know you and care about
you, with activities to do, skills to work on, community outings to grow through,
and then, on the day of your 22nd birthday, it all ends. Literally.
Coleman’s birthday is October 4th. He will go back to school the September of
his 22nd year for exactly 1 month, and his last day will be on his birthday. I cannot even fathom the thought – how do we
explain that? And without a
placement?? Sorry pal, no more
school. No today, not ever. No place to go, nothing to do. It is a cruel, lonely, devastating reality
for so many kids today. Beyond heartbreaking.
Simply can’t accept it.
That’s all. I won’t have that for
my boy. Will Not Let That Happen To My
Boy.
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