Information for parents of disabled children

Tuesday, November 30, 2010

Getting a program

A special education teacher assists one of her...Image via WikipediaA program is the key. When folks start out on the road to a special education, it's important to know what you can expect. Good programs should contain three things: data, flexibility and room to grow.

But the greatest of these is. . . Data. It should produce tangible statistics on a child's progress.
From a parent's prospective, a program without data leaves you out of the loop on your student. It's the river from which all educational decisions flow. Not knowing the results of a child's day to day activities is the same as sitting in a dark room and trying to describe the furniture from memory. You won't remember it all, and it's likely you missed something on your first look.

A program with wiggle room lets educators change the pieces without sending an autistic child into shock from too great a change at one time. Structure can help with that. Administrators can sometimes suggest programs that can be adapted to a student's changeable needs.

 Long term thinking lets parents and professionals in the field look toward the future and plan for developmental milestones. Overall goals allow parents to choose a path most likely to get them where they want to go. Whatever your goal, you should think big, maybe bigger than you can expect. That's fine. 

Thinking big and long term could get your child the next best thing to your ideal. A non-verbal child would have an ideal long term goal: communication. So verbalizing communication is the goal, but should they learn to sign to communicate you got the next best outcome. The learning disabled child with Aspberger's might want to go to college. That goal could get them the best high school GPA and result in excellent job training, even if the ultimate goal of college doesn't happen. It's easier to prioritize steps to these goals once you have them, rather than cobble together a step by step program one priority at a time. The overall goal gives you room to grow your student's program, to expand their abilities.

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Saturday, November 13, 2010

Who's predjudiced against disabled kids? Not us.

A young girl kisses a baby on the cheek.Image via Wikipedia
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.
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Wednesday, November 10, 2010

Hair pulling moment

Sometimes I like to do a more personal post. Our family has struggled with behaviors in school for the whole school year thus far, and it finally culminated in a case conference. Personal note, I dread case conferences.

Conflict isn't an issue for me, but I get pretty wound up at injustices. One of my biggest frustrations is that I so often have to be the catalyst for change in my son's education. One would expect that to be the professionals in charge. Our boy needs a new program, and I'm usually the first one to say it. 

He needs data collection and new methods. He needs more one on one help to conquer out short term eruptions and move us past it. He needs focus. Unfortunately, it feels like so many experience the frustration of knowing individual plans, individual kids,  don't get individual focus.

Because I'm watching parents who are uninvolved and seeing their kids education continue in a rut, without results to back up the plan, I know it can happen. If parents don't become the catalyst, children slip through cracks in the system simply because it's policy not to rock the boat.

While self-advocacy is essential for families to learn, it's sad that they have to learn it. Isn't it? Shouldn't special education students have plenty of advocates to go round?

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Thursday, November 4, 2010

Case conference recordkeeping; what should you keep?

An early blog article on 15 minutes discussed keeping a notebook just for your conference, to keep and take notes and to organize anything you may be given. Another possible time saver for a family is to make your own report.

It's simple to make up your own form to document all that occurs once the case conference begins. It may sound stupid, but date everything. This gives you a frame of reference for when particular events occur.

Be sure to document each attendee and if they were excused for any amount of time. This gives a parent a sense of who was there and said what. It also helps to keep the names with the faces.
List the issues you wish to discuss. This will be particularly helpful during the conference, keeping you on track to discuss each concern and ensuring you get to them all in good time.

Parents might find it helpful to allow space for listing what was actually discussed, in case the conference gets away from the participants. It helps you track weak points in your own conferencing style as well. While we love to hear great things about our kids, there's only so much time to talk.

Leave space for the outcomes. What was decided today and how will we implement it? Later on, it will be useful to have something to refer to when you discuss your conference or decisions made there. There will be no doubt in your mind what agreements were reached and when because of your thorough dated notes.

Keeping copies of a form makes for easy prep. You can grab the form and stuff it in the file on the way out the door, and always have clean notes from your conference.