A Mile In My Shoes

Well, this morning we got off to a late start. We didn’t have time to practice self-help skills. Every day I like to spend a few extra minutes helping my 7-year-old practice the things he isn’t able to do independently – like dressing himself, climbing the stairs, pulling up and down his pants (as part of potty training), and of course communication skills.

My son, Stephen is completely non-verbal. Part of teaching him to communicate is not anticipating every need.  It takes patience to allow him to express his wants, needs, feelings, and thoughts.

 

Today as I dropped him off at school for a half-day – I tried not to get angry about the way our school treats the disabled. Parking is always a trigger for angry feelings from this special needs mom. We have a total of 4 handicapped parking spaces at the school that houses the majority of the disabled children – preschool through grade five for the city.

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Of the 4 parking spaces 2 are almost always blocked off for school bus parking. Yes, I know that’s illegal but even the principal doesn’t care – nor does the district’s Director of Special Services. Of the other two handicapped parking spaces – one is half way across the parking lot (not near the entrance door.) Sometimes it’s occupied by a school employee, but 90% of the time blocked by a lazy parent who doesn’t want to park her car in a parking spot or follow the rules. (The principal has repeated the dismissal rules over and over on the automated phone call announcement system. Parents have a choice of either parking in a parking spot or using the “valet pick-up” at the media center.)

This parent is disrespectful toward the school, the other parents, and the disabled students. One day I had an altercation with her. I got out of my car and asked her not to block the handicapped parking space. Her reply was, “I’m waiting for my kid too – no I’m not moving.” I said, “Really? My son is blind and we can’t use the handicapped parking space?”

She moved that one time, and every day since she arrives for pick up more than 20 or even 30 minutes early. At that time the parking lot has no less than 10 spaces available – just a few steps further away! She blocks the handicapped spot every single day – leaving only the last handicapped parking space available. The last handicapped parking spot is the furthest spot in the entire parking lot from the front door. It’s as close as you can get to the back fire exit (not an entrance.)

I have mentioned the handicapped parking problem to the teacher in charge of dismissing the students to their parents. Another parent even chimed in about the disrespectful parent that has road rage in the parking lot. Still the problem continues, and the teacher in charge of dismissal allows this one inconsiderate parent the special privilege of not having to use a parking spot or the “valet pick-up.”

This ramp and fishing platform meet the standards of the Americans with Disabilities Act and may be used by anyone. Please respect the desire of people with disabilities to fish on the fishing platform.
Now this is inclusion!

My son wears leg braces. He has both gross motor and fine motor delays which are obvious to the casual observer. He holds my hand even while walking on the sidewalk. He often drops to the ground, demanding to be picked up. Most days his para and I each take one arm and lift him up from under the armpit. He makes squealing sounds to communicate. He weighs 50 lbs. When I carry him his legs reach past my knees making it difficult for me to walk – and more importantly decreasing opportunities for him to practice self-help skills.

I recently took Stephen for a physical therapy evaluation due to his decreased mobility. The school cut his PT (physical therapy) services despite having my signature on the forms for Medicaid reimbursement. The school claims that since he does not need to climb stairs at this school, he is not eligible for continued direct PT services. (Great idea wait until middle school or high school to work on climbing  stairs independently – better yet wait until he’s an adult!) Furthermore, the school claims that Stephen does not drop to the floor while walking. Yet every single day, his para, teachers, and other parents witness him dropping to the ground while his para hands me his back-pack.

I’m a supporter of Obama Care. (I used to work in customer service for one of the largest health insurance companies in the US.) However, I’m disappointed with medicare since the new changes went into effect at the beginning of the year. Without a doubt the multi-billion dollar health insurance industry is finding ways to discredit Obama Care. One of the ways this is happening is by providers cutting medicare services to the disabled (particularly special needs children) in favor of taking private insurance patients. The health insurance industry has convinced medical providers they will pay more than Medicaid does. It’s a creative (but not an unpredictable) way to diminish low-income and middle class support for Obama Care. So needless to say, Stephen can no longer get physical therapy services despite having a severe developmental delay.

A friend of mine, the mother of my son’s classmate (a boy who is also deaf-blind) has had similar problems with handicapped parking. Her son is 9 and confined to a wheelchair. His bones break so easily that he started this school year off with several fractures – just from moving him to change him. In order to enter the school building with her son, she has gotten out of her car and moved the cones blocking handicapped parking. The cones make a physical barrier, placed by the school decreasing accessibility for the disabled. Her son is currently on hospice care for end of life at such a young age. As a mother, she may be beyond my mundane worries about the school, but never beyond compassion for others.

Never does the thought cross the mind of the “powers that be” that maybe special needs parents have enough on their plate.  We have a difficult enough time getting where we need to go without the added burden of fighting with other parents and the school district. We just want our children to be treated with respect and allowed the maximum accessibility possible in an aging school building. The autism and special needs classrooms are about as far from the entrance as possible. It’s not as bad as putting the special needs kids in the basement like my grammar school did, but I don’t think they have any basement classroom space. If they did, they’d most likely use it without regard for the stigma and the attitudes it fosters in other students, teachers, and staff.

Before my son started walking at age 3, I said things like, “I wish I could be pushed around everywhere” as I pushed him around in his little special stroller/wheelchair. A few months later I broke my leg, falling down the stairs carrying my son. The break was bad enough to require a permanent rod implanted into my bone. My son and I learned to walk together. I learned to lift my son from his changing mat on the floor while standing up on only one leg. Our ability to get down the stairs and out of our apartment – and back up again was largely due to the kindness of neighbors and even strangers. Getting groceries was nearly impossible since I couldn’t push a cart and carry my son simultaneously. There was no help available from the state for transportation because I was required to meet them with my son outside. So I paid a neighbor, who was kind and reliable – despite poor hygiene and a horrible odor – to bring us to doctors appointments and shopping. I didn’t want to burden to my family or my friends and I nearly went broke.

My mother taught me when I was very young not to pretend to be sick or disabled, nor to wish for it. It could be you. (but for the grace of God) As children my sister and I wanted to pretend to use crutches – not to make fun of anyone – just plain childhood imagination – but my mother wouldn’t allow it. When I broke my leg, I couldn’t help remembering my mother’s warnings and saying to myself – I should have never wished to be pushed around!

I am a firm believer in Devine Justice – Karma – whatever you want to call it. I would never wish a hardship like a disability on even my worst enemy. So I say a silent prayer for those who don’t understand.

I’m certain that the world will see an increase in disabilities. Autism Speaks reports 1 in 88 children in America have Autism. The Board of Education and Services for the Blind reports an increase in Cortical Vision Impairment (a.k.a. Cortical Blindness) due to preemie survival rates increasing. There are many children who would have perished early on in years past, and adults who would not have survived illness and injury without modern medical intervention.

I find some comfort in knowing the next generation has compassion for the disabled that far exceeds what I would have expected to see in my lifetime. At my sister’s college graduation, college students sincerely encouraged me and my son – that he could go to college someday too. At this point he doesn’t even have language – let alone literacy – but I won’t let the dreams of the next generation be thwarted by pessimism.

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Handicapped parking anyone? You can’t even see the front entrance from here!

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5 thoughts on “A Mile In My Shoes”

  1. Honestly I don’t understand people who can be that rude. I would move the damn cones too. Have you tried showing up earlier than her and taking the best spot? That’s what I would do.

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    1. Yes, I’ve tried getting there earlier but it just becomes a competition. She just gets there earlier and earlier. I’ve learned sometimes (often) it’s best to turn the other cheek. We’ve been parking way down at the end in the empty spot at the end of the sidewalk. This part of the sidewalk is usually icy, but it’s a lesson in patience and perseverance for both me and my son. Thanks for commenting! 🙂

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  2. Julie, Have you contacted anyone at the Board of Education about this? This is truly disgusting that no one at the school is helping you. I would take it to the BOE.

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    1. Yes, I have. They just ignore it unless you file a complaint or due process proceedings. The schools are pretty bad here in that respect. It’s only got worse over the winter. The city plows the snow into that handicapped spot instead of the back corner. Honestly I’d be better off to move. It’s just a lot of time and energy to put into fighting the powers that be! I have filed a complaint in the past. See my 1st post A New Year. I’m in crisis management mode at the moment with my teenage step-daughter and her newborn son. We have to help her get an apartment now because her sister threw her out with no warning. Baby Greyson is only 5 weeks old. I’ll let you know how I make out. I do plan to pursue the issues with the school district in the near future. I just want it to be better for all of the disabled children. I especially want to speak up for the one’s whose parents don’t know how to advocate, aren’t educated, and aren’t financially able to!

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