Arrested Development

Image by dovima_is_devine via Flickr

The word retarded often requires description these days. It's always been a merely descriptive word, an adjective. It's a part of speech and nothing more. The trouble is that the minute it describes you or someone you love it has a power over your life you never knew a word could have. It's like the word Cancer, a noun. Your life suddenly has a divider in it; the time before that word and the time after when nothing is as it was.

When used to demean or describe another person unfairly, it burns far deeper than other words ever could. Why? Because it's not something you are or part of your identity, it's something that keeps you from being the authentic self you want to be. It usually refers to a disease or disorder that effectively separates one human being from the rest of the world around him.

"Retard" is particularly hard for me to hear as a mother, but it was hard before I had a child with autism. It's an ugly word in that context with an ugly meaning. It's effectively saying "you're so stupid, nothing can be done to help you and you'll never do anything 'normal'." What an ugly little lie!

Developmental retardation only means that life takes more effort. It's not demeaning to help my son or love my son. He's not helpless or stupid at all. He's a wonderful, adaptive person who never quits, never surrenders. Most famously, Ginger Rogers was once compared to Fred Astaire, that she did everything he did, but backwards and in heels. That's it exactly!

My son, Darrel, and I both walk down stairs, but the open slats don't bother me. I can see clearly and judge each step with ease, and I don't hold the railing in fear of falling. He does, but, each morning, we both march to the bus. Which of us is the most to be admired? Neurological disorders are obstacles, things that trip us up, but working with special needs, I've learned that the main thing that makes them special is the inability to just quit walking down the stairs or working the problem. They get discouraged, as do we all, but they just keep dancing.

The issue with the word is related to the power of the word. We fear that word as a society and as individuals, and it's not becoming any less scary in the 1-in-100 world we occupy. Even family members in the early days of our diagnosis could slip and use the word in front of us in just that context, calling someone else a "retard". Talk about awkward. It's our nature to belittle what we fear, so I would correct them gently and move on, case closed.

What I do not tolerate, what I cannot tolerate is the bandying about of powerful words with no understanding of the effect they have only to forward an agenda, an agenda of fear and hatred based on little fact or intellect, I might add! Mental retardation isn't a concept. It's a fact of life. The primary difference between yourself, Mr. Limbaugh, and my little boy is that he has a reason to throw a tantrum. His life is truly harder than anything you ever experienced in yours. If you had to change places with Darrel, you couldn't pull it off. He can do seventy-five percent of the things you do in a day, and he does it backwards, quite nearly literally.  So think what you want about politics, but think again when you start calling anyone names that profane. You don't strike me as the type to apologize, but you really should to each and every person afflicted with the disorder you use as an insult. You can start with my son!

Furthermore:

If you agree with the following PSA, then"retard" is a bad, bad word.

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Waiting On The World To Change

Cover of Gone in 60 Seconds

You'd have to have lived under a rock to miss the song by John Mayer Waiting on the World to Change. Yesterday, the boys and I took our regularly scheduled trip to Riley Children's Hospital. It's always an experience.

Medical care is quickly becoming my "Eleanor". Gone in Sixty Seconds supplied that reference. It was the car he couldn't ever manage to steal, the white unicorn. We're wondering how the heck we'll pay Riley, a hospital that's been so good to us, and we're wondering why it feels like stealing.  Something seems wrong when caring for the sick becomes a commodity.

Of course, doctors and nurses need a living wage. Hospitals have to pay for themselves, I understand, but that's not the system we have. Providers pull in massive profits. Having a child with Autism, you want the Corvette health care. Most families in our situation settle for the Impala or nothing at all. When your child needs medications, you take them to the doctor whether you can pay or not. You have to. It's debt or seizures. That's the choice. It's a choice that hurts.

Listening to the song that is the title of this article yesterday, I had to wonder if it's really the world or only us, Americans, who live this way. Maybe it's different elsewhere, and it only feels like the world to me.  Our son won't live on his own most likely, and having no  insurance now threatens everything. Statistically, his parents are more likely to die sooner rather than later. Forty percent more likely, I'm told. Who cares for him then? So, you see, medical care really is my "Eleanor". It's something so valuable we can't buy it. It's so necessary that it's life and death. That's why it feels like stealing.

Looking at D, I wish he didn't have to depend on anyone because the world around him doesn't look like it's changing. He's always going to be in need of a commodity no one is willing to part with easily. America will always be dominated by the "boot strap" culture of the olden days. While there is much to be admired in those who can pull themselves up by their boot straps, some have no boots. What do they do? They wait. Good Samaritans rarely come along and are rarely sanctioned by our society. It's all very Darwinian. I wonder often at the espousal of this mindset by so many conservative Christians. It seems at odds with their values.

Hoping for reform of our medical system seems now like a naive notion only a child would have, like Santa or the Easter Bunny. It was improbable and unbelievable.  How could I have imagined America was ready to grow up and behave in a civilized way? It seems very foolish now.

I suppose the families trapped like ours in a world that excludes their children in many ways will go on doing what has to be done for those children. We'll keep going after "Eleanor", even if we have to steal it, because that's what parents do. Anything it takes.

Tap To Talk

Frequently Asked Questions

Image via Wikipedia

Sometimes parents write and ask me for definitions or advice on issues relating to case conferences. When more  than a few write the same question, I usually mass mail the answer to all the parents I work with on a regular basis. This week's FAQ was "My case conference notification had as a reason for the conference 'review of a 60 day plan', what is this and how do I prepare?"

I'm publishing my answer below:

 Some of the parents have asked me a question about IEP notifications, so I thought I could just answer everyone and call it a FAQ. Some notifications include as a reason for the case conference a "review" of a 60 day transition plan. I haven't seen them, so I'm guessing on the wording. It may be slightly different.

The law requires parents be informed when schools want to consider change of placement. That's basically what this is, however, it's better described as a plan to achieve transition back into less restrictive environments. In theory, it signals to parents that it's time to discuss goals that can transition their child into "out" buildings and document the child's ability to make the transition. No one can simply change a child's placement without discussion or prior notification. However, the school wants to start talking about the possibility.

Parents who have this particular listing on their notifications should prepare for that discussion with documentation of your child's current medical issues, progress reports and prior discussion with school psychologists and specialists who work with your child to determine whether they can succeed in an included environment. This information will be vital to formulating a plan for that transition or delaying it, if necessary. It should be determined, as always, individually and with much thought and consideration.

Progress! What's that?

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Parents get progress reports every year. It comes with the regularity of the morning paper and often with just as much bad news. Progress by school standards can differ greatly with our assessment and vice versa. Yay, he writes so well, the teacher says to Mom. But, he has no friends! Mom says freaking out.

My advice to all parents is to define first, for yourself, what progress is, and then determine if you're seeing any. We don't just want kids who can copy and paste learning. We want functional, social individuals with thinking skills. This goes for all students.

Istar is a monitor of progress, too. If you see over the course of the IEP that your child has stalled out and appears stuck on the same goals. It's time to try something else. Step one, check for a medical issue undiagnosed or recently developed. Step two, look at classroom structure to see if anything can be done differently. Step three, repeat step two or look at the options like placement or extended schoo year. Does your child need more drastic measures to move forward?


Parents can define priorities, and that helps prepare for writing your plans each year. It's okay to ask yourself what you and your child need this year and expect an answer!