Monthly Archives: March 2006

Normal is in the eye of the beholder

While doing a bit of research for an upcoming post on Autism for Parents, I found this interesting bit from Scott’s Diabetes Journal:

According to her, it all centers on grief. Grief being described in this case as ‘a loss of normalcy’.

A loss of normalcy.

Man – that says a lot doesn’t it?

But what is ‘normalcy’? If I’ve been diabetic for 26 years, isn’t that ‘normal’? Or do I see that others don’t have to check their blood sugars, deal with highs or lows, eat without counting (for the most part), worry about complications or feel guilty about not controlling their blood sugars?

But under the surface I do know that I have to deal with more than the rest of the people I’m around most of the time.”

To distort an old saying, “Normal is in the eye of the beholder.” What is normal for me, may be abnormal for others. This is true in all aspects of our lives, not just autism. But in many cases, society has not quite adjusted yet to the different normals of autism like it has with some other things.

Remember when kids with long hair were considered losers and slackers, or when a guy having an ear-ring was ‘bad’? For me it is normal to not have extra holes in my ears, for my son it is normal to have one extra hole. I accept that his normal is different than mine.

We have a long way to go yet, but I think society is on the path to understand – and more importantly ACCEPT – that autism is a different kind of normal. I just hope it doesn’t take too long.

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Autism for Parents

In my last post, I posed myself the question of what aspect of autism should I focus my awareness efforts on this year for Autism Awareness Month, and on what audience should I focus those efforts. After just a little bit of thought, I realized that the audience I want to reach out to are the parents of children newly diagnosed as autistic. By deciding on this audience, the topics I should focus on also became clear to me: all of them.

One of the hardest times for most parents of autistic children is when they first receive the diagnosis. This is due in large part, I believe, to the widespread lack of knowledge or understanding of autism by the general public.

Until they receive this diagnosis, most people don’t know much, if anything, about autism and after they receive the diagnosis there is a crash rush to learn everything as soon as possible. While there is not a whole lot I can do to change first situation, no matter how many “awareness campaigns” I embark on, I can do something to help parents in the second situation.

To that end, I’ve created Autism for Parents. Though based on the WordPress blog system (and hosted at WordPress.com), my intent is to make it more than just a blog, including pages listing various other resources I think will be of interest to parents.

I am also hoping to make Autism for Parents comprehensive as I can, to help parents get a feel for the entire landscape. Though I have my own beliefs concerning autism – and will continue to write about them here at 29 Marbles – I will include information about those views I don’t agree with. In any decision making process, it is vital to understand all sides of a question before making a decision. I feel it is only right to help parents see all aspects of the issue before making the right decision for them.

I hope to see you there.

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Raising autism awareness – where to start?

As Autism Awareness Month approaches, I find myself trying to figure out how to do my part in raising awareness. However, I’m having a problem this year: what exactly do I want to raise awareness of?

There are so many aspects of autism that could be discussed: cause, cure, intervention, bio-med treatments, neurodiversity, IEPs, adult services, etc etc etc etc.

There are also many audiences that can be addressed: parents of newborns and infants, parents of newly diagnosed children, siblings of autistic children, teachers/administrators in ‘regular’ schools, students in those schools, teachers/admin in special ed schools, lawmakers, employers, etc. etc.

I’m going to take some time off from posting here until April, when I hope to come back with some organized thoughts to address autism awareness. I won’t be completely absent, though, as I plan to continue reading the many great autism related blogs out there and engaging in discussion (via comments).

If you are looking for more blogs and other sites to read about all the many aspects of autism in our world today, check out these three sites for some good lists:

If you have other good collections of links to point people to, please put them here in the comments.

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Reflections on a year of learning

Last week marked one year since my first post to this blog, and according to the Blogger Dashboard, I’ve also passed the 100th published post mark (with quite a few languishing in draft-hood). I don’t usually mark these kinds of milestones, but with Autism Awareness Month (April) coming soon, it seemed an appropriate time to reflect.

Writing this blog has helped me to sort through some of my thoughts about the different aspects of understanding autism. Over time, some of my opinions and beliefs have been strengthened, and some have changed. This would not have been possible without my interaction with other autism bloggers. I’ve seen quite a bit of growth in the number of autism related blogs over the past year. Maybe they’ve always been there, and it was my better understanding of the many aspects of autism that allowed me to find and identify them.

My blog reading list now includes everything from the extremes (in the analytical, not pejorative, sense) of vaccine-caused autism and neurodiversity to personal stories of parents of autistics and autistics themselves. These stories range from those of parents of newly diagnosed children to autistic adults trying to share with the world what autism is really like (not that a non-autistic will ever be able to truly understand).

Going back through my early posts, one that stood out was Thoughts on curing autism, in which I posed the following question:

We can give your child a shot now, and when he wakes up tomorrow he will no longer be autistic. Would you like us to give him the shot?

I started this blog as a way to “think” about autism, and I think this simple to state, difficult to answer question really focuses the issue. It requires serious thought on the causes of autism, the nature of autism, and what it means to be autistic. It also cuts to the heart of what it means to be a parent. How much of what you do are you doing for your child, and how much are you doing for yourself?

How would you answer this question, if your doctor presented it to you?

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The other end of the spectrum: “Special” education for gifted kids

In our local paper a couple of weeks ago was the article Parents, students fear for future of gifted programs. In a nutshell, gifted students and their parents are asking for exactly what many parents of autistic kids are trying to avoid- segregation from the regular classroom:

The resolution notes that gifted students have educational and developmental needs that differ from school populations as a whole, and the board believes gifted students “require programs or services beyond the level ordinarily provided through the regular school program.”

“I moved to Rockwood due to the gifted programs, which I hope we can keep at their current level,” parent Karen Smith said. “The way gifted children learn is so different that they need stimulation and different types of (teaching).”

Parent Julie Loos said the gifted program “prepares my children for real-world solutions.”

Replace “gifted” with “autistic” and I think the statements are just as valid. Why, then, do so many parents of autistic kids want to simply put their kids in the mix with the ‘normal,’ instead of demanding the “stimulation and different types of teaching” that their learning style and abilities demand?

At the same time, programs for the gifted are facing many of the same challenges as ‘regular’ special education:

[They] favor guidelines including a means to monitor qualifications of teachers hired by districts to teach in gifted programs; continuation of certification requirements for gifted teachers; maintaining state guidelines for identifying gifted students; a means to monitor and report the number of students identified by districts as gifted; requiring districts to annually report to the state concerning whether they provide gifted programming and its nature; providing information on gifted programs on districts’ annual report cards; and enhancing the Missouri School Improvement Program standard for gifted programs, so they become more important to the overall accreditation process.

Let the battle for the buck$ begin.

Update (21 Feb 08): Marla has posted a good discussion of this topic from a more personal perspective.
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Barney’s Harmonica revisited

I originally posted this last April, but felt it worth re-posting. Though most people involved with autism will immediately grasp the incredible insight of the poem, I encourage everyone to read the story of Barney’s harmonica that inspired the poem.

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We first came across this poem by Mayer Shevin many years ago when we were first coping with a diagnosis of autism, and found copies of it recently when were doing some spring cleaning. You can find more about it at the links above, but I’ve included it below:

We like things.
They fixate on Objects.

We try to make friends.
They display attentions seeking behavior.

We take a break.
They display off-task behaviors.

We stand up for ourselves.
They are non-compliant.

We have hobbies.
They self-stim.

We choose our friends wisely.
They display poor socialization.

We persevere.
They perseverate.

We love people.
They have dependencies on people.

We go for a walk.
They run away.

We insist.
They tantrum.

We change our minds.
They are disoriented and have short attention span.

We have talents.
They have SPLINTER SKILLS.

We are human.
They are ?????????????????

Kind of takes me back to Luke’s question, “When is an obsession not an obsession.”
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Whose life is it anyway? Thoughts on guardianship, autism, and growing old

As part of planning for the future, parents of autistic kids must consider many things. Key among them is this question of guardianship.

When a child in the United States turns 18 they are considered an adult, their own person. They can vote, they can enter into legally binding contracts, they can join the military (and if they are male they must register with selective service), etc. In order to rescind this legal right, parents must petition the courts and establish alternative guardianship. Obviously not a decision to be made lightly.

On the other end of the age spectrum, adult children often must make care decisions for their aging parents. Many times this results in these elderly parents living out their final days in a nursing home, with every aspect of their lives controlled by the administrators of the home. Again, not a decision to be made lightly. (I think we’ve all heard the horror stories.)

The film Almost Home, recently aired on PBS, talks about a different kind of way to run a nursing home.

ALMOST HOME offers an inside look at the lives of these residents, their families and those who care for them as each adjusts to the challenges of growing older. ALMOST HOME filmmakers Brad Lichtenstein and Lisa Gildehaus introduce couples bonded and divided by disability, children torn between caring for their dependent parents and their own families, nursing assistants doing difficult work for near-poverty wages and visionary nursing home director John George, who is committed to transforming his century-old hospital-like institution into a true home.

Under George’s leadership, Saint John’s On The Lake is reinventing its 135-year-old medical model of care (think hospital) with a social one (think home). His goal is to transform the way people see nursing homes—not as institutions of boredom and despair but as vibrant communities where residents live rich and fulfilling lives. To succeed, he will have to win over skeptical managers, resistant nurses, overworked and underpaid nursing assistants, complacent residents and often-overwhelmed family members.

The key change in my mind is that the residents here retain as much control as possible of their own lives. They can wake up when they want to, instead of the usual scheduled wake-ups. Meals are tailored as much as possible to what the residents desire, not a typical bland hospital menu. (If someone has lived a good 90 years, and wants some bacon for breakfast, they should be able to get bacon for breakfast!) They have a cocktail hour every Monday where *gasp* they can drink cocktails.

Whose life is it to live? It is the individual’s, of course. But, as the parent of an autistic teenager, that is somewhat easier to say than to act on. Any thoughts from autistic adults (several of whom I’ve recently gained as readers) or parents of autistic adults that have already gone through this are greatly appreciated.

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“I’m not really that different”

I know the story of Jason McElwain has been around the world and back again by now, but I couldn’t help but print this quote from him:

‘I’m not really that different,’ he said. ‘I don’t really care about this autistic situation, really. It’s just the way I am. The advice I’d give to autistic people is just keep working, just keep dreaming, you’ll get your chance and you’ll do it.’

Good advice for anyone, autistic or not.

tagged as: Autism, Asperger’s Syndrome, Jason McElwain