Documentary News

Last May we had an opportunity to participate in a Taiwanese documentary about multicultural differences regarding disability rights related to accessibility, education, and sex. I’ll admit, some of their questions on sexual rights caught me off guard.

I had no idea that other countries provided sex as a service to people with disabilities. They wanted to know if it was a legal option, would I request this service for Benjamin. The good Catholic school girl in me first told them, “Parents in the US don’t like to talk about sex.” But they weren’t buying it. After a deep breath, I thought about the concept of Maslow’s Hierarchy and explained that our top priority is meeting Benjamin’s health needs. Sex just isn’t on our radar.

Later, with my permission, the crew interviewed Sebastian and asked him if he was interested in dating. While I sat on the sideline, more than a tad terrified about what my teenage son might say, Sebastian easily answered, “Yes, but I know it takes a long time to fall in love and get married.”

I love that my autistic son was the one to put the emphasis on building relationships. Plus, he made a super awkward situation comfortable.

I hope to see the whole film in the near future, but for now I’m excited to share this clip highlighting a much more comfortable subject. In case I haven’t cued this up properly, skip to 1:58.

 

 

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Compliance

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    Last week at back to school night, one of Sebastian’s teachers said, “He’s a compliant student.” I laughed because in this respect he most definitely takes after me.
    I’m the one on a deserted road at midnight who comes to a complete stop at the stop sign and who feels guilty if I cross the street against the light. I like blaming my Catholic school upbringing for the need to be hyper-compliant, but the truth is I have been a perfectionist for as long as I can remember. My earliest memories of kindergarten include a pretend wooden fruit stand and a coloring assignment. After completing the homework sheet, I realized I had done it all wrong. After some amount of hysterics, my mother used a butter knife to scrap off the crayon so I could fix it.
    It took years to calm my perfectionist ways. I will say the compliance trait does come in very handy in my special needs parenting life, especially when it comes to Benjamin’s medical needs and anything related to his government benefits. But sometimes being compliant in an imperfect world is frustrating.

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Process Over Product

Exam

I recently took notice of a headline which read, “Alabama school board member considers institutionalization for special ed students.” Early into the video Ms. Ella Bell says, “Is it against the law for us to establish perhaps an academy on special education or something on that order, so that our scores that already are not that good would not be further cut down by special-ed’s test scores involved?”

Of course she’s defending herself now. “I never uttered the word nor have I ever considered “institutionalizing” students with special needs.”

Too late Ms. Bell. When people speak before they think, they say exactly what’s in their heart.

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Dear Social Security Administration,

I wanted to share a post my beautiful friend Jesse wrote today. I’m frustrated by her experience and I’m pretty pissed about the things we’ve had to deal with since our children reached 18 years of age: Social Security, Selective Services, Guardianship….It’s been a real joy. Good thing our kids are so amazing. Send some love and good vibes to Jesse and Jack. They’ve had a hell of a day.

smiles and duct tape

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Dear Social Security Administration,

Stop wasting our fu*king time! I’m begging you. I’m coming close to a breakdown and my family needs me. I appreciate that there are people who wish to take advantage of the “system”, but I assure you — we are not one of them. AND, I realize that there are people who might not clearly qualify to receive Social Security benefits. Unfortunately, Jack more than qualifies.

1.) Are you working? No
2.) Is your condition “severe”? Yes. I find this almost insulting to answer.
3.) Is your condition found in the list of disabling conditions? Jack has five of these conditions.
4.) Can you do the work you did preciously? Never worked.
5.) Can you do any other type of work? Jack cannot bag groceries, shred paper or walk down the street without someone holding his hand. I’ve often thought he would make a great professional hugger…

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My Triennial Nervous Breakdown

 

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One of the first rules I learned about special needs parenting was, Don’t compare Benjamin to anyone other than Benjamin. I had to learn this lesson again after Sebastian was diagnosed on the autistic spectrum. For the most part, I’m pretty good at staying positive, and finding small but significant joys in my day to day life.

But every three years, for a brief period of time I break down.

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A Shower Chair Story

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No ordinary shower chair

More than a year ago, Benjamin’s therapists filed an insurance claim for a new shower chair. Our insurance denied the claim saying that a shower chair wasn’t medically necessary. Benjamin’s pediatrician set up a peer-to-peer review with a doctor from the insurance company hoping to overturn the decision without a formal appeal.

No such luck.

According to the doctor from the insurance company, “A shower chair is a comfort and convenience item.”

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