Fighter Parents

29 06 2013

I read a great blog about how families of special needs people are always in fighting mode:

I think people wonder why special needs parents stay in fighting mode. It’s because if we let our guard down even for a day, we miss something. Sometimes it’s something big. Or something as simple as our family getting to swim together in a community pool with our son safer by use of a floating vest. Our “fighting” isn’t fighting as much as it is just doing what we do. Or doing what we have to do.” http://supportforspecialneeds.com/2013/06/28/why-special-needs-families-stay-in-fight-mode/#comments By Julia Roberts

It got me thinking about the many fights we’ve had since our son’s diagnosis… He doesn’t have a modified curriculum on his IEP! Keep that little bully away from him! Don’t send him home– give him accommodations! You receive Federal funds– you can not exclude him! He’s not going into the multiple disabilities classroom– he’s going into general ed! And the list goes on… some fights I’ve handled well; others like a rabid mama bear. Some fights I’ve won– others have thrown me on my butt in a puddle of tears. But we HAVE to persevere.

I love the Samuel Johnson quote “Great works are performed not by strength but by perseverance.” But, I do believe that sometimes strength is needed… we have to be strong enough to get up in the morning and go head-to-head with people who are afraid of our kids or are too lazy to work toward our high expectations. We have to be strong enough to learn the law and use it. We have to be strong enough to keep on believing that our kids will reach their maximum potential when everybody around us only sees the disability.

Our children need to know that they are “good enough” to do what others get to do– they need to know that we’ll fight for them– that they are worth it! That we don’t give up– we accommodate.

Some of us fighter parents create organizations to include their kids when the mad hits (Ohio Adaptive Sports for example) others hire attorneys and some just pay for the private lessons when their kids are kicked out of group swimming lessons at the Y. (And wait to rub swimming medals in the faces of those who excluded our kids.).

I believe that every generation of fighter parents weakens the walls that our kids have to face. I want to be a fighter parent who helps clear the path so others have lesser fights.

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Contact the Candidates– Let’s get them talking about Autism!

18 01 2008

Let’s get the candidates talking about Autism. If you are reading this you most likely are a family or friend of a family with Autism. With the statistics skyrocketing we have to deal with it now.  Please consider Autism in your candidate choosing process and ask your candidate– or all of them– to start talking about it. 

To make it really easy for you– below are the links for contact pages for the top 10 candidates. Please ask them to start talking about Autism.

Democrats:

John Edwards: http://www.johnedwards.com/about/contact/form/

Barack Obama: http://my.barackobama.com/page/s/contact2

Hillary Clinton: http://www.hillaryclinton.com/help/contact/

Dennis Kucinich: http://www.dennis4president.com/ (I couldn’t find anything beyond newsletter sign up)

Republicans:

John McCain: http://www.johnmccain.com/Contact/

Ron Paul: http://www.ronpaul2008.com/contact/form

Mitt Romney: http://www.mittromney.com/CommentForm

Mike Huckabee: information@explorehuckabee.com  (I couldn’t find a fill out form for him– so, here’s the email address.)





Grandparents and Autism– “You’re old”

16 01 2008

My little guy is a great reader and his grandma is a great listener. A couple of nights ago J was reading her a story when he paused, took grandma’s hand in his, studied it and said “You’re old.” He pointed out her wrinkles and looked up at her face. She showed him her “old age spots” and compared his 8 year old hand to hers. She has wrinkles, he doesn’t. She has spots, he doesn’t.

J loves his grandmother and she loves him. And, as J tells me so often: “And that’s all that really matters.”





Ten Things Every Child With Autism Wishes You Knew- Part 2; My Sensory Perceptions Are Disordered

12 01 2008

Here is part two of a ten part series from the new book I’m reading: Ten Things Every Child With Autism Wishes You Knew by Ellen Notbohm. The following is an excerpt from the article by the same name:

My sensory perceptions are disordered.  This means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me.  The very environment in which I have to live often seems hostile.  I may appear withdrawn or belligerent to you but I am really just trying to defend myself.  Here is why a “simple” trip to the grocery store may be hell for me:

My hearing may be hyper-acute.  Dozens of people are talking at once.  The loud speaker booms today’s special.  Muzak whines from the sound system.  Cash registers beep and cough, a coffee grinder is chugging.  The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums.  My brain can’t filter all the input and I’m in overload!

My sense of smell may be highly sensitive.  The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they’re mopping up pickles on aisle 3 with ammonia….I can’t sort it all out; I’m too nauseous.

 Because I am visually oriented (see more on this below), this may be my first sense to become overstimulated.  The fluorescent light is too bright; it makes the room pulsate and hurts my eyes. Sometimes the pulsating light bounces off everything and distorts what I am seeing — the space seems to be constantly changing.  There’s glare from windows, too many items for me to be able to focus (I may compensate with “tunnel vision”), moving fans on the ceiling, so many bodies in constant motion.  All this affects my vestibular sense, and now I can’t even tell where my body is in space. In the book she talks about feeling like you’re always on a roller coaster– fun for three minutes but can you imagine going through your daily routine on a roller coaster? Making coffee alone would be enough to ruin your day…

In light of Sensory Disintegration– I am so proud of my J! He handles the off-kilter-ness of his world so well!  I’d be hideous!!  (And, my husband who moans for hours over a hangnail… yikes! What would he be like?) So, J’s outbursts aren’t rebellion, manipulation or bratty-ness– they are genuine cries for help– “Get me out of here”, “End my suffering!”

There are lots of different manifestations– Hyper-sensitive (Clothes hurt, the washing machine is too loud, the light is too bright…) and Hypo-sensitive (Yearns for deep pressure, louder, brighter, harder). J is Hypo-sensitive. He likes walking barefoot in gravel and loves to wrestle. He also is a recovering headbanger.  Identify what your child is– and work with it…

I believe that J will be a productive part of society and this book– the information in it– is a stepping stone. I highly recommend it to all who live with Autism– parents, teachers, grandparents, ministers, Sunday school teachers, lifeguards at the Y… It is up to us– the guardian’s of these kids to provide the people in their lives with this information.

An article by the same name is available on-line.





Hillary Clinton Promised to Find Out What Causes Autism

8 01 2008

A couple of nights ago I had CSPAN on while drifting to sleep and a Clinton Speech in New Hampshire came on. She brought up Autism– without being asked anything about it– and promised to find out what causes it. Was I dreaming?

Can she make that promise while endorsing mandatory vaccines? Seems a bit contradictory since vaccines (Thimerasol) seem to be the most likely cause. (At least Ron Paul’s health-care plan gives us a choice on vaccinations… ) There are certainly other theories– older father, environmental causes, and heredity are just some of them. Another theory for the explosion in autism diagnosis is the expansion of the definition. In past generations, people who were high functioning might have just been considered eccentric.

I don’t have any answers and,  apart from living with an autistic child and reading everything Temple Grandin writes, I have no expertise.

While I applaud Mrs. Clinton’s ambitious promise to find out what causes Autism, I’m skeptical that she can actually do it.  And, if it matters so much to her why hasn’t she done anything as a member of Congress?Don’t they hold the purse strings?

Any politician would be fool to claim apathy towards those of us who’s lives are affected by Autism– but, what have any of these folks done? Huckabee got a $400 haircut to benefit Autism Research– big deal. Richardson actually expanded services in New Mexico. What have Edwards, Clinton, Obama, McCain, Romney, Paul, Thompson and rest of the pack done?

Hillary Clinton talks about her track record– accomplishments– what has she done for the “least of these”? Am I missing something? Has she done something that I’ve missed?

I welcome your comments and am an undecided Ohio voter. I do vote and will vote for the person who, in my view, is the strongest on the Economy and on Autism.