These days, aging out of services for someone on the Autism Spectrum is a very real and unfortunate reality. My son, James, aged 18 and moderately affected, was able to vote in our presidential election this year. His father, my husband, and he went through the entire ballot and he made his own choices. We still laugh regarding his reaction that we were voting to legalize marijuana in our state. Flabbergasted! And sincerely ticked that it passed! It was awesome.
So, tell me, how is it that this capable young man, on the cusp of a tsunami of younger individuals affected by Autism, just how is it that he can be marginalized when he is capable of a higher education? He votes. That’s an adult privilege. He was required to enroll in the Civil Service upon graduation. Why can’t he be admitted to college classes at the local community college? Well, yes, it will take some accommodation and understanding, but the key here is that he is CAPABLE.
The amount of heart in this young man to get to this point, well, indescribable. We, as a family, would never want to meet a other family on this path, unfortunately – with 1 in 36ish boys now affected…..its becoming an autism freeway.
Take a notebook. Draw a picture in the corner on page one. Next, on page two, draw a slightly altered image – carry on the next, and next (you get it) to create a cartoon book. Using your imagination in the same manner, imagine our life in a little book:
Two people fall in love.
Have fertility issues.
Two surgeries later, pregnant.
Born beautiful, well and happy.
Gets shots (5 at once).
Develops severe eczema.
Take doctors advice.
Gets 18 month shots.
Another gorgeous boy!
First son looses ground.
Gets really sick.
Suffers hearing loss.
Doctors are certain he’s fine.
Make us wait until he’s three for intervention.
Go to local non-profit before he’s three because we know something is wrong and desperately need him evaluated.
The volunteer SLP recommends us seeing a neurologist.
Brain scans fine.
Little boy is too sick to believe.
Low body tone.
Gorgeous eyes loosing focus.
First diagnosis, global developmental delay.
He’s over 3 now, no early interventions available.
Second diagnosis PDD-NOS.
Becoming totally submarined in his illness.
Go to experts at the state university.
Give blood for genetic testing.
Handed the Autism diagnosis.
Told to get ready to institutionalize at 18.
Grieve for 24 hours.
Enroll in special preschool.
Only 6 students in the district.
Allergies continue to rage.
Allergic to everything.
Severe dietary restrictions.
Visit health food store.
Clerk alerts on vaccines.
Get violently ill.
He stops eating.
She visits once, wants to tether him to his chair.
He’s sick, not defiant.
Every day – study.
Every day – do something to improve his health.
Go to an integrative doctor.
Treat underlying health issues.
A therapy a day for 5 years.
Becomes very sassy!
A little happier (not easy being him).
We still hope.
Starts taking bus to school.
Lets himself into house and stays alone.
Calls me on the phone when he’s home!
Makes honor roll.
Survives being bullied.
Survives being harassed, barely.
Makes a few friends.
Has amazing sense of offbeat humor.
Loves to fly and go on vacation.
Allergies abate enough to get a beloved dog.
Get another beloved pet.
Becomes published artist.
Passes standardized testing.
Graduates high school with achievement awards.
The crowd roars on graduation day.
Has a family who loves him.
Wants to continue education.
Its another challenge.
Can’t stay home alone.
Family is happier.
Still ready for secondary education……..
Now an adult son.
Time to quit?
Time to change things.
Time to change the paradigm for him and the legion of his peers coming up who have expectations for acceptance and a place in this word.
Time to throw out the notebook.
I will be a devoted parent until I cannot, and that will be the day I die. ~ Wendy Frye
“People need motivation to do anything. I don’t think human beings learn anything without desperation.” ~ Jim Carrey