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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Nightlights, Electric Shavers & Breaking The Law

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Leading up to Benjamin’s 18th birthday I was preoccupied with guardianship paperwork, prep for his social security application appointment, and trying to find just the right birthday gift.

Benjamin loves books, music, and Teletubbies DVD’s but I wanted to give him something special for his milestone birthday. I was stumped and tried hard to avoid making comparisons with typical 18-year-olds. I was grateful that Benjamin was going to see his 18th birthday and he’s the purest human being I’ve ever had the good fortune to know. But he will always be my greatest responsibility. My heartbreak. The reason I live fully and mourn fully, every single day. He will never be independent. Never go on to college. Fall in love. Grace me with grandchildren. Never give me the opportunity to pass on the traditions and lessons my mother taught me. This melancholy song has played on and off in my mind since Benjamin was an infant. I heard it every time I strolled him through a playground, at every family gathering as we watched our nieces and nephews mature, at reunions where our friends’ children played together, and especially at every major school transition meeting. I allowed this song to play and then I changed the record.

Pushing aside comparisons of teenagers who can drive, go out on dates, and hang out with friends in movie theaters or restaurants, I focused on what makes Benjamin happy. A few years ago, John and I bought a Cloud b ladybug nightlight that projects stars on the ceiling. Benjamin loved it so much it instantly became a part of his nighttime routine. If he wakes in the middle of the night, all we have to do is put on the nightlight and his Tubbies music and he usually falls back to sleep on his own. Thrilled to have found something both loved and useful, we later gave Benjamin a star projecting turtle. Currently, he prefers a starfish that casts an underwater illusion. With Benjamin’s love of nightlights in mind, for his 18th birthday, we bought him a glowing Moon In My Room toy. I was certain Benjamin would love it even if I didn’t consider it special enough. Spending $15 for a toy rated for children six years old and older left me singing the mommy blues.

John likes to point out Benjamin’s ever so thin but obvious mustache so we went on the hunt for an electric shaver which filled my need to get an age appropriate gift, and marked a typical right of passage. When John wrapped the two gifts I pushed their dissonance aside. I also buried  my feelings about our impending guardianship hearing, and the legal responsibility to register Benjamin with the Selective Service System.

At first, I dismissed the task because the website says, “Disabled men who live at home must register with Selective Service if they can reasonably leave their homes and move about independently.”

Benjamin can’t reasonable leave home and move about independently, but then it says, “These men with disabilities that would disqualify them from military service still must register with Selective Service. Selective Service does not presently have authority to classify men, so even men with obvious handicaps must register, and if needed, classifications would be determined later.”

The contradiction between these two statements irritated me because it falls outside the realm of common sense.

Some of my friends had registered their sons, and others waited for the government to send the reminder card in the mail. I visited the registration site more than once, but I just couldn’t hit the submit button. John and I are waiting to stand before a judge and have Benjamin legally deemed incapacitated. In guardianship hearings, a judge also determines if a person with disabilities can retain their right to drive, marry, and vote. Apparently, what a judge won’t do is deem the person ineligible for a draft.

Yesterday I woke early, made myself a cup of coffee and logged on to the Selective Service site and read:

The law says men must register with Selective Service within 30 days of their 18th birthday. That means men are required to register with Selective Service sometime during the 30 days before their 18th birthday, their 18th birthday, and the following 29 days after their 18th birthday – that is a 60-day registration period.

Men who do not register with Selective Service within the 60-day window are technically in violation of the law and should register as soon as possible.

Technically, Benjamin broke the law and it’s my fault. So I cleared my mind, filled out the form, and submitted.

It irritates me that some systems are set up without considering children like Benjamin. I justify this reality by telling myself that children like Benjamin make up a small fraction of the population. Why would the government put any effort into accounting for them? After all there hasn’t been a draft since 1973. So what does it matter? Why make a mountain out of a molehill?

But then I remember people with disabilities are the largest unrecognized minority group in the US.

In whatever capacity they can rise up to, Benjamin and Sebastian have to learn to advocate for themselves. As their mother, it is my job to model effective strategies and to teach them that no matter what the rest of the world thinks, their point of view is valid and they deserve to be heard.

I’m going to keep building mountains so when my sons are ready to stand up there with me everyone will be able to hear them.

Brotherly Love

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Benjamin’s been fighting a cold for the past three weeks. Last night he was crying, loudly. Sebastian closed his door so he could complete his homework. For years, Sebastian would fall apart when Benjamin cried. He would yell at me, “Go take care of him.” He keep saying the noise was too much for him to handle. Three years ago, when Benjamin had his hip surgery, I bought Sebastian a pair of Peltor ear muffs. I always do my best to make Benjamin happy, but I’m not a miracle worker. I knew there would be a lot of crying after hip surgery. And there was. I will never forget Sebastian sitting in the car, out in the garage, wearing his ear muffs. Continue reading