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Autism’s Irony

42323200-2B73-4EB0-A7EB-B494E1B647BFBy  Cathy Jameson

Last week I wrote about how filling out forms for myn medically fragile son of can sometimes do a number on me.  As much as I’d like to, I can’t escape them.  They are part of life with a complicated kiddo.  I thought I’d get a little bit of a break from having to fill out forms, but a new one showed up in my mailbox after that piece was posted.  

Oh, the irony.  

Since it was a renewal form, most of the information being requested was on file and was actually filled in on several of the pages already.  If all looked correct, I’d just need to verify what was there and return the paperwork to the agency.  If anything needed to be updated, though, I could cross out the old info and add the new.  The document was lengthy.  9 pages.  Double-sided.  Font size 8.  They were asking a lot.  Because of how detailed it was, and because of how someone royally screwed up a similar document a few years ago, I didn’t want to take any chances on the renewal form.  So I made time on a quiet morning last week to go over every question with a fine-toothed comb.  Then I called the office that mailed me the form.  Asking for verification about one section, I was grateful when a representative offered to update the information with me over the phone.  Supplying the answers over the phone would satisfy the renewal process, so I agreed to do that with the rep.

I thought filling out these kinds of forms on my own was hard to do.  

Talking through each question proved to be just as difficult.  

I couldn’t use my upbeat Not Yet replies like I was able to last week.  The answers for these questions and prompts needed to be specific.  They had to be factual.  Scrubbed of any hope, I wasn’t able to say cheerfully that Ronan was so close to finally being toilet trained after all these years! I could only say, “No, he is not independent on the toilet.”  In fact, Not Yet couldn’t be used for any of the questions on any of those 9 double-sided pages.  

Can he make his own meals?  “No, he cannot make a meal on his own.”  

Can he bathe or shower on his own?  “No, he cannot bathe or shower on his own.”  

When I initiated the phone call, I really did think getting this form completed would be easier.  I thought it would be faster, too. I thought I’d save myself some of the heartache that comes with parenting a medically fragile child. I was so wrong.  I had no opportunities to be positive.  No chances to share that progress is being made, even if only one tiny baby step at a time.  Every question, even if answered with a Yes, really meant No.  

Yes, my child is disabled.

Yes, he requires many accommodations.  

Yes, he needs constant assistance with daily living skills.  

Yes, he must have round-the-clock care.

The No responses were just as difficult.

No, he does not have personal resources.  

No, he does not have any cash or own any property.  

No, he is not employed nor is he self-employed.  

Like I said in last week’s piece, I should be used to this by now.  With how long I’ve been asked to fill out assessments, surveys, questionnaires and the like, I should be able to answer every question without hesitation.  Somedays, I can and do so without emotion.  Other days, like on Thursday morning last week, emotions got in the way.  

For the very last section, the representative asked two questions that stayed with me long after I hung up.  While we get to celebrate some of Ronan’s new-found skills, we may never be able to do that with others skills, especially ones he never masters.  Due to that, I had to verbally confirm that my childwill be dependent on me and my husband for some time to come.  It’s a reality I never dreamed could happen, but I repliedas hopefully as I could.  

Who claims Ronan?

His father and I do.  

Will you both claim Ronan again next year? 

You better believe we will.  

He is ours, and we are his.  Through every trial we push through and through every celebration we get to have, what an honor it is to be his parents.  

Cathy Jameson is a Contributing Editor for Age of Autism.  




Sometimes I pray for you.



You said, " forms . . . . are part of life with a complicated kiddo. "

Yes, they are -- in the United States. The country of greed, greed and more greed.

Whereas in the U.K. and lots of other actually civilized countries, there are NO forms to fill out.


Cathy-You have written another very touching and inspiring article about what it means to be a parent of a child with a disability. We love our children dearly and cherish them always. Yes it is an honor and a privilege to be the parent to our special children. ( Mine is now an adult)

Mark Wax

There is no irony in treating disabled people with the mission of denying them the benefits we should heap upon them. Especially as you shuffle paper and coast towards your government pension. Have you ever filled out the forms for SNAP benefits. Why do we need to be "policed." They will spend 1000 dollars to find a "cheat" who is "taking" 10 bucks from the hard working taxpayers. Sarcasm intended. And we think America is "civilized?" We have a long way to go baby.

Dawn Loughborough

I hung onto every time we moved the needle on the dial of progress with the mantra of never give up hope, faith and love...and I so wish we could have every one of our kids experience the shifts they need to flourish. I love how you write about what is so and find you to be so inspiring. An inspiration of love. The greatest of these is love.

Bob Moffit

"He is ours, and we are his. Through every trial we push through and through every celebration we get to have, what an honor it is to be his parents."

My beloved grandson .. non-verbal for 17 years of his 19 years of life .. carries my name .. I was HONORED when he was first named .. and .. remain HONORED to this very day.

Cathy .. as you so eloquently put it .. 'WHAT AN HONOR IT IS TO BE HIS PARENTS AND GRANDPARENTS".

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