Who's predjudiced against disabled kids? Not us.

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Autism, as any parent who has gone through diagnosis and reached a severe disability can attest, is one long chain of obstructions and missing pieces. It's usually the missing pieces that cause the obstructions. When they don't make eye contact, it becomes hard to decipher what they mean or what they want from a parent. When children don't speak, they can't tell you what they like, who they are or why they did that. We noticed the holes first, and then later we saw the problems as they grew, and we ran off to the doctor hoping to fill those holes. Really, let's be honest. Early days are where we hope that it ain't so. We want them to be able, to be strong and live a full life rich with promise.

But doctors aren't the answer with autism, at least not yet. So, parents listen while professionals tell them in broad strokes what's wrong with their child, what they won't do in all likelihood and how to find resources to help the family cope with the disability. Once parents leave a doctor's office with a dazed look on their faces, they have to choose to make peace or make war with the disorder. They will spend years looking for ways to get to the child inside, some of them with amazing success. Some will work in vain, and never get to the place where they don't have to worry what will become of them, who will take care of them.

Why is autism, why is disability, so devastating? Perhaps, because in our culture we worship ability. We deify captains of industry, Olympic athletes and prize winners.  We celebrate success and reward it. Conversely, we may devalue those without. Let's not kid ourselves, we certainly devalue those without ability.
The homeless man standing on the corner of Market Street. The uninsured single mother who didn't finish high school. The unemployed veteran who can't keep it together on the job since that last tour. There are few excuses we accept as a society for a lack of productive ability. Never mind that the single mother works two jobs and still can't make ends meet, and never mind that the homeless man was abused horribly by others in his lifetime. It's not a good reason for not trying now, right? Individuals who overcome, pull themselves up by their bootstraps, are the deserving. So what if they can't? Can't, as in, do not have the ability.

During a school board work session here in Perry Township, I listened as the allocation of special education stimulus funds were discussed. Shockingly, Gwen Freeman, a Perry school board member and candidate on the Take Back Perry Schools ticket, expressed her concerns that money in the general fund should not be used for the new REACH program aimed at the higher functioning, emotionally disabled of Perry Township. She wanted to be sure that "children who do work hard and do succeed have access to the funds they need". As a mother, it's a statement that struck fear into my heart with its implications. Children with emotional disability "choose" their behaviors, therefore it's their responsibility to meet the benchmarks. She didn't seem to get that it's our responsibility to get them there at all. Though she had the grace to look embarrassed by her remarks (when they were explained to her), it stuck with me, even though I'd encountered discrimanatory remarks about the disabled before that night. It worries me to this day that there are those like Mrs. Freeman in positions of authority over my child's education and its funding.

 Persons in power reflect the values of a society, even a corrupt one sometimes. So as Americans run through the debate over health insurance and whether it's a right or privilege, and run around on TV calling everything and everyone retarded, I wonder sadly if we aren't showing clearly that we value ability. You deserve to be respected based on level of ability. Individual health is wrapped up in the ability to pay for it. Are these the values of our society? And what happens to my son in such a society?

It's a worrisome train of thought, but the questions need to be asked. To truly effect social change, it seems likely that first we need to address social attitudes.

Related articles

• Saving Ben: A Father's Story of Autism- A Powerful Memoir for Readers Interested in Parent Advocacy (brighthub.com)
• In Free Market Paradise, State Workers Tell Parents: Dump Disabled Kids At Homeless Shelters To Get Help (crooksandliars.com)
• Ind. Parents Told Drop Disabled Kids at Homeless Shelters (abcnews.go.com)

Involuntary suspensions and Autism

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A little known fact is that any time you are called to your child's school because of behaviors and asked to take them home. It's a suspension. What this means is that it's inappropriate to keep a parent on speed dial waiting for the next blow up. Oh, it happens.


What are the choices for parents? It's tricky. You could refuse to pick them up, but this leaves your child in a situation that is obviously not working. You could go get them. In this case, a parent can ask for documentation that they were asked to get their child. That's key to the next step; fixing the problem.


Warning Signs

When a parent is called for a fever, it's a sign that a kid is ill and needs rest, maybe some soup. When you get a call saying, "we can't handle this kid". That's a sign too. It's a clue in to a bad placement or a need for modification.

The first thing to look at is the data. Behavior charting can offer big clues for parents. If there's a pattern, you can see it. Remember that patterns can be found in the staff present or absent, as well. Behavior charting should already be done each day and ready for the parent at any time. It should be easy to read and understand, and it should be complete.

Looking at our child's environment is important. If they are already in the most restrictive environment, what changes can we make that will get them back in the classroom and learning again?
Look at staffing, are there enough? Too many? Are they trained in your child's disability?



Take Action

Time is precious in the classroom. When we see a pattern of classroom removals (in school suspensions) or involuntary suspensions, it's already time to take some action. It is important to determine the least restrictive solution. In some cases, a new placement is in order. Others would require a one to one staff member, until documentation proved no more need for it.

Missed class time is a tragedy for any child, however, in the world of special education it's a warning sign. When a child isn't fitting into a classroom anymore, something must be done quickly to get them back on the road to success.

We All Have Autism.

Image by Sailing "Footprints: Real to Reel" (Ronn ashore) via Flickr

In the very beginning, it was important; no, imperative, to me that the other two kids not lose their childhood to this disorder. I saw it as the enemy, and still do sometimes. No way would it ruin things for everyone. They would get to be children for as long as they were children.

A few years in, I had started to calm down a bit, but the fruits of my labor were beginning to show. When D would melt down, the other kids complained, whined, threw fits all the way home. Family outings became segregated. Worse yet, I didn't like the attitudes they harbored against their brother. They resented that he was different, that he interrupted their fun. They didn't want a sibling with autism.

I had been parenting all wrong, and it was long past time I pulled my head out of my behind and did something. So I got them all together in one room and said, "Newsflash! We all have autism." That got their attention.

I'd been teaching "every man for himself" when I wanted to teach "all for one and one for all".  Families stick together. Families shoulder each others' burdens. They work together as much as they play together, but I'd been too concerned about preserving their carefree childhood.

There are mental health professionals out there clucking their tongues at me right now. I know the common wisdom, but I wanted my children to learn uncommon wisdom. We never wanted our son's siblings to carry the load, but neither did we want them to be one's to leave it to someone else either. We wanted them to be the kids who included the autistic kid on the playground, not the ones running away from him. How will they ever learn compassion and loyalty if we put their comfort first? We seldom learn wisdom in comfort.

The Result:  Since our family changed our motto, the kids are closer. They care for D like a true sibling, and an unexpected thing happened. Our oldest, I realized, has many disabled and learning disabled friends. He's truly including everyone he can, and that's so much better than a carefree youth. When all is said and done, I'd rather be able to say our kids are empathetic, caring individuals who work for the greater good, than to simply be able to say "well, they had fun".

There is no fear in love; but perfect love casteth out fear.

 1 John iv. 18.

The Art of Creative Thinking

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Behavior strategies can be creative. There's no law against it. In fact, some professionals even encourage creativity with behavior issues. I thought I'd take a minute to blog about some strategies that I've seen work.

Making a team- Several kids I know need serious help during a meltdown. A meltdown, which any veteran survivor of special education can tell you, is the moment after the moment when a kid has had way too much. You can write a team approach into your behavior intervention plan. Who works with your child best? A teacher? A coach? You simply write up a game plan for dealing with a meltdown and those are the people you put in the game.  The goal is always the same; Get the student passed the meltdown and calm, then you move on to the business of his day.

One-on-One- Schools don't want to do it because they just can't afford it too often, but it does work. One aide to manage one student is sometimes called for when interventions will be intensive and of long duration.  This is likely something a parent has to put on the table. Don't wait for a teacher or administrator to put it out there. You could be waiting a while.

Give Sign a Try- I know all the arguments. It's not widely used. Others won't know how to talk to them. Okay, I get it, but communication is the biggest stumbling block there is for a child with Autism especially. I have two responses to the argument drawn from my own experience and philosophy. First, my experience is that it really reaches kids who work better tactilely or visually. Second, my philosophy is that people need to stop being lazy in our society. If you are in a social situation with a sign speaker, then get off your bum and learn some! Could I have put that more diplomatically? Yeah, but what fun is that?

These are by no stretch of the imagination the only creative interventions you can use. These are examples only. Parents drive the case conference committee, and while some educators disagree with me that it should be that way, it's the way it is. Think about it. Every other person at that table has multiple other students to work with this year. Yours isn't the only one. You are the only member of that committee who is exclusively focused on your child. A teacher doesn't live with the result of that committee's hard work. The family does.