You are currently browsing the archives for September 2009

Bev and Bruce Say It Well

  • Posted on September 30, 2009 at 1:16 AM

Asperger Square 8 has a new post definitely worth reading.  Beautifully written and deeply meaningful, Bev addresses the news that Bruce Springsteen will be performing a benefit concert for Autism Speaks.  While her entire post is worthy of a good read and a good cry, I want to respond to these words:

Those who defend Autism Speaks will tell you that people with “real autism” can not speak for themselves. Some will go so far as to say that these “real” autistics cannot communicate at all.

My son, Alex, is one of these “real” autistics.  He does not speak, at least not in the sense that his vocalizations consistently and effectively communicate.  However, that does not mean he does not communicate, though it does mean he can be difficult to understand.

Yesterday, I was speaking with Ben’s therapists who were playing with Ben in his room.  We had plumbers over doing smelly things in order to bring our upstairs bathroom back to life – without the constant sluicing of our kitchen cupboards.  So, to release the smelliness we had the windows propped open.  One of the things I used to prop open a window was a box (100+) of crayons that were upstairs as part of Ben’s therapy supplies.  Alex saw the box of crayons and wanted them.  Alex loves to color and he goes through crayons rather quickly and removes the paper and breaks them into smaller pieces for his own, unknown reasons.  So, Ben has his own crayons that haven’t been Alex-ified.  And now Alex wanted them.  After all, he hadn’t had new crayons in two whole weeks.

I told Alex I had other crayons for him and these were Ben’s.  Alex accepted that answer and we both went downstairs, and I went all the way to the basement to get a little work done.

A few minutes later, Mark came down with our merry little catch phrase: “Just in case you didn’t know, our kids are weird.”  This is not said to be derogatory.  It’s just one of the things we say to capture the chaos that is our lives.  It could just as easily be me saying, “Just in case you didn’t know, my brain is weird,” with me then launching into one of the strange places my thought patterns had taken me this time.  So, Mark came down to describe an oddity to me.

This time it involved Alex, who regularly leads people to things he wants in order to communicate.  Alex took Mark by the hand and led him to the living room (which happens to be by the stairs that lead up to Ben’s room).  Then, Alex pulled Mark across to the other side of the house to get a piece of paper off the pile in the den.  Then, he pulled Mark back to the living room.  Knowing nothing of the exchange Alex and I shared moments ago, Mark was understandably baffled.

I knew exactly what Alex meant, however, so I handed Mark the box of new crayons I had tucked away for Alex.  Then, Alex contentedly peeled, broke, and colored away for most of the evening.

It certainly would have been easier if Alex could have said, “Dad, Mom said I could have new crayons and I would like them now, please.”  But Alex cannot say that.  That does not, however, mean he cannot communicate it.  The key to communication is not what you say, it’s what the person you’re trying to communicate with hears or observes.  Because Alex communicates in a way that is difficult for others to “hear,” we often need interpreters to understand him.  In this case I was the interpreter, but other times I’m the one who needs the interpreter.  Someday, when he’s ready, Alex will try to communicate with a bigger audience.  Hopefully there will be people willing to “listen” no matter how he is tries to communicate.

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Revealing Research

  • Posted on September 26, 2009 at 12:00 PM

I admit when it came to the “autism epidemic” I took the statistics pretty much at face value.  I didn’t interpret the situation as dire, but I assumed there was a causal factor other than broadened definitions and increased awareness that supported the growing number of autism diagnoses in children.  Left Brain/Right Brain of the UK was the first source I’d seen that convincingly shed both doubt and light on those statistics and raised issues of bias that I needed to consider.

Now, research also coming out of the UK sheds further light on this very important issue.  I read this article posted in Medical News Today:

This ground-breaking study shows for the first time an estimate of how many adults are living with autism spectrum disorders (ASDs) in England. The study into the prevalence of autism spectrum disorders among adults shows that one in every hundred adults living in households has the condition - broadly the same rate as that cited for children.

The implications of this research are, in my opinion, nothing short of profound in their implications of the politics of autism.  Further relevance is revealed in these findings:

  • While 1.0 per cent of the adult population had an autism spectrum disorder, the rate for men was higher (1.8 per cent) than for women (0.2 per cent). This was in line with studies among child populations which show higher rates amongst boys.
  • People who were single were more likely to be assessed with an autism spectrum disorder than other marital statuses.
  • Among men, prevalence of an autism spectrum disorder was lower among those with a degree level qualification than among those with no qualifications.
  • Men renting their home from a social landlord were more likely than those living in other types of housing to have an autism spectrum disorder.
  • Adults with an autism spectrum disorder were no more likely to be using services for those with mental or emotional problems than the rest of the adult general population.

If I ever doubted we needed to take a serious look at how we, both in the US and internationally, approach autism this offers a never-before-seen glimpse that shows very clearly that we do.  Misinformation and assumptions having us looking for causes and solutions to this false “epidemic,” when what we really should be doing (and should have been doing all along) is using our resources to find ways to solve problems people with autism face every day.

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Aspitude!

  • Posted on September 25, 2009 at 12:00 PM

I’ve gotten so caught up in the many tasks I’m obliged to do, and watching Season 1 of Fringe on DVD, that I forgot I was supposed to be seeking out new and familiar blogs.  So, I went looking today and found quite a few “new to me” blogs and wanted to share this one with you.

Elesia of Aspitude! is a woman with Asperger’s who is also a Research Assistant for Academic Autistic Spectrum Partnership In Research and Education (AASPIRE).  She recently wrote a post called The Fingerprint of Autism that reminds people that each person on the autistic spectrum is a unique individual.  As obvious as that seems to me, it really is worth saying, because there are people who just don’t get it.

Besides, there’s a really cool picture of a blue butterfly!  What can I say, I appreciate pretty things. :-)

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School Spirit

  • Posted on September 24, 2009 at 3:52 AM

At first, it seemed trivial.  Over the course of the last several years, I have gotten notes from school requesting my child wear a specific set of clothing to demonstrate school spirit.  While it was somewhat inconvenient, I really didn’t think there were any significant ramifications.  Then, this year, my youngest son was asked to wear clothing of a specific color to assist him and his fellow kindergarteners to learn their colors.

Coinciding with this, I was also exploring the ramifications of our desires for acceptance.  We all want to feel accepted and loved for who we are; but, because this doesn’t always happen, many of us sacrifice aspects of ourselves in an attempt to gain that acceptance.  In some ways, this does have positive benefits.  Activities deemed illegal or immoral by the society in which we live are reduced by our desires for acceptance.  However, sometimes the activities deemed illegal or immoral are based on unfounded prejudice.  Furthermore, sometimes we do things that we deem illegal or immoral to gain this acceptance.  The drive to be someone acceptable may have serious, long-lasting, and destructive consequences.

School children can be very cruel to one another, as I know from personal experience.  There’s often a pecking order and significant pressure to conform to the students’ standards, regardless of whether those standards are based on ethical conducted.  It occurred to me as my thoughts and this particular experience aligned that perhaps we should not reinforce children’s tendency to judge each other by their clothing by making clothing part of school spirit or learning exercises.

While school spirit does have some benefits, it should not be fostered at the expense of children who cannot or do not choose to participate.  Perhaps instead of actively reinforcing the tendency to sort people based on their clothing and judging their worth based on the category they best fit, we should teach our children that school spirit and other “group memberships” should be based on personal merit and genuine worth, not external attributes.  Then again, concepts like school spirit and “group membership” are often interpreted as vehicles of conformity.  Perhaps school spirit isn’t something we should foster at all.

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Implications of Therapy

  • Posted on September 20, 2009 at 12:00 PM

Bev, of Asperger Square 8, has taken on an excellent project that has opened my mind to many new thoughts.  It’s called: A Checklist of Neurotypical Privilege.  While the entire document is worth reading (I highly recommend it) one piece stuck out and pricked me – mind, body and soul.

13. For a child of my neurotype, everyday teaching of the skills they will need to live in this society is called education or parenting—not therapy, treatment, or intervention.

The implication here is that for neurotypical children education is called education, but because neurodiverse students sometimes require different lessons, different teaching styles, and different techniques, their education is called therapy.

I consciously try to foster my children’s sense of worth and power.  I try to build them up so that they and others can better recognize their potential.  I do not, in any way, consider my children “less” because they are not neurotypical.  And yet, I never consciously thought about the implications of the use of “therapy” to describe our efforts to meet their educational needs.  The specialists who assist us in designing strategies and “interventions” to help my children learn are called therapists and they perform services that are funded as therapy.  I never once questioned these labels.  Now, after reading this document, thinking about it, and letting the issues it brings up fully penetrate my mind and my heart, I’m amazed and chagrined that it never occurred to me.  I’d long lost my comfort with the use of “intervention strategies,” which is a common phrase that’s applied to services intended to assist individuals with special needs.  But therapy always seemed completely innocuous.

When I think about the purposes of therapy, however, the point becomes clear.  The reason my children require therapy is because they do not learn all the things they need to know in a neurotypical manner.  Therefore, to teach them the things they need to know, we need to use different strategies, techniques, and behaviors to help induce learning.  Learning is still the goal.  So, whatever the means, teaching and educating are still the verbs.

Comparatively, consider the teaching strategies sometimes used with at-risk youth.  There are many, from charter schools to special programs, but they’re not called therapy.  These are children who often have neurotypical development, but face challenges not experienced by mainstream society.  To educate them as we should, we need to find ways to compensate for those challenges and this requires changes in teaching techniques.  In our language, we recognize that these differences and unfortunately we sometimes use language that denigrates the worth of the children, but we don’t call it “therapy.”  That’s reserved for students with disabilities.

Just as kids who perform below average or have problems due to their experiences, children who perform above average get specialized educational programs as well.  When I was a student, I attended classes that were labeled “differentiated.”  More was expected from me and my fellow classmates than our regular peers.  Specialized lessons were prepared for us and techniques were used to prevent the typical boredom children with above-average intelligence often experience in school.  It was differentiated, but still education – not therapy.

So, why do we use therapy to describe techniques used to teach students with special needs?  One obvious answer is that it hasn’t occurred to well-meaning people that the word might be offensive or inappropriate.  This is not a reason to continue using it, but it does explain part of the problem.  Like myself, there are others who have never considered the word might be controversial.  If this were the only barrier, change would be relatively easy.  Not genuinely easy, but more easy than it would otherwise be.  Unfortunately, this isn’t the only reason.  There is one good reason I can think not to change the use of the word.  Now, I caution you, it’s not a very good reason, in that it’s ethical or right.  It’s a good reason in that it benefits those the educational services are intended to benefit.

Simply put, the reason to keep the “therapy” label is funding.  Specialized educational services are expensive.  Funds are not readily available for these services.  In many American schools, the only reason these services get the funding the need is because it is federal law that they be available.  In many American schools, parents have to fight to get school officials to recognize that the services provided must be dictated by the needs of the child, not be the availability of resources.  This is a legal right won in the courts.  And it’s still an issue.  By changing the wording from “therapy” to “specialized educational services” one risks losing some of the oomph that “therapy” has.  Whether it’s accurate or not, whether it’s ethical or not, whether it’s true or not, “therapy” has a more respectable reputation with hints of medical necessity that “specialized educational services” lacks.  It’s all about shades of meaning here.  The research behind therapy and that supports its use is better funded and better supported than the research behind specialized educational services.  Programs for at-risk youth and for children with above average intellects are cut before students with disabilities, because the programs for students with disabilities have been propped up by law through the research that supports the benefits of therapy.  By changing the wording, you change the meaning in the minds of some of those you communicate with (which, admittedly is part of the point) in such a way that it’s detrimental to the programs being funded.

Now, again, I’m not saying that it’s a good thing that other programs are so easily cut from school budgets.  I don’t believe that.  I believe that all children, regardless of what their needs are, should get the educational services that fill those needs.  Society’s sense of the value of unique individuals has not progressed to that point yet.  By pushing for the human rights implications of education over therapy, I perceive a risk in damaging the fundability of those education services.  Ideally, the human rights implications would take priority.  They should.  But, the reality is that these services are often necessary.  I’m reluctant to advocate anything that would endanger their availability.

Which is not to suggest Bev’s document does any such thing.  I believe the purpose of the document was to open our minds.  If that’s true, then it certainly worked for me.

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Homework Helper

  • Posted on September 18, 2009 at 12:00 PM

Between going to school and trying to launch my freelance career, I’ve been quite pressed for time.  This has been a difficult adjustment for everyone as I’ve struggled to squeeze out time for family, school, and work.  So, it’s difficult for me to sit there and simply remind Willy that he knows how to do his own work.  My constant busyness makes this feel like a waste of time.  Recently, I had a flash-point.  I’d tried to get Willy to sit down his work, and then I was going downstairs to work on my own homework.

That was the plan, but Willy kept asking for my help.

“You don’t need me here, Willy,” I told him.

“I do, too.  I need your help on this, this, and this,” he said, pointing to his three assignments.

I looked at the assignments, two of which were math.  He didn’t need my help on any of these.  Well, maybe the vocabulary, which was defining words based on their context in a paragraph, but certainly not on math.

“I need your help,” he said, pulling me in.

I figured I’d help him get started and then break away.

“If you need help, ask daddy.  And I’ll come up and check on you in a little while.”

“What about this one?”

“You can do that one.  It’s just like last one.”

And so the argument began all over again.

Finally, another adult intervened.  I fled downstairs, thinking over the whole scene.  And it occurred to me that we were both right.  Intellectually, Willy could do the problems.  His need for me was emotional.  Willy gains a sense of security from my presence.

And helping my son feel secure is not a waste of time.

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Running Scared

  • Posted on September 16, 2009 at 10:27 PM

I work in the basement where, despite its many inconveniences, the boys cannot color on or disturb my work-in-progress.  Since the basement does not yet have a working telephone line, I rarely concern myself with phone calls when my husband is upstairs.  This call was no different.  The phone rang.  I paid no attention.  Mark answered the call, but it didn’t seem to concern me or he’d have called down the stairs for me to come up.  I didn’t know my son had been lost and was found again.  I didn’t know I needed to encircle him in my loving arms once more in order to regain my equilibrium.  Blissfully unaware of the almost-disaster, I continued my work despite the Labor Day holiday.

It’s strange how that feeling of panic and worry can arise even after the danger is over.  My boys are runners, meaning they don’t like to be confined to a specific space and will run if given the opportunity.  Willy was our most ingenious runner.  When he was four years old, and my youngest was just an infant, he would “escape” out the sliding glass door that lead to the sidewalk and the parking lot outside our apartment.  Being a problem solver, he would wait until I was feeding Ben to make his getaway.  He never went far, but he went outside without supervision.  In a diaper.  In the winter.  We tried everything we could think of and asked everyone we knew to try to keep the door closed.  We tried various devices, including tape over the latch and a rod that held the door shut.  Each and every time, Willy found a way around our attempts to keep him inside.  Eventually, we broke our lease and bought a house, because the landlord would not put in a bolt lock to keep the door closed.

The advantage of owning our own home was not that we could guarantee the boys didn’t get out.  It was that once the boys found a way out we were free to do whatever it took to shut the way as permanently as necessary.  Our measures to ensure our children’s safety would abuse the aesthetic sense of just about anyone, but aesthetics is very low on our priorities.  For example, we have a big, beautiful bay window in our living room.  One window is big and cannot be opened.  On either side are two smaller windows (half the width, but the same height) that could be opened when we first moved in.  The screens were fairly easy to pop out – just exert a little pressure.  The locks on the windows were stiff and our children had trouble with things like buttons, so I didn’t see it as a potential danger spot.  Until, one day, while I was doing dishes, Alex opened the window, popped the screen out, and went outside to get a closer look at the cars.  The ones that moved.  On a very busy street.  By standing in the middle of the road.  It took him less than a minute to get from our safe, seemingly secure living room to the middle of the street.  I heard the honking and took a peek.  There was Alex, happy as he could be close to so many cars with their engines whirring, completely unaware of the danger.  After a few attempted solutions, I nailed them shut from the outside.  It’s not pretty, but it works.  The boys haven’t gotten out that way again.

They’ve gotten out other ways, though.  Through the garage, through the fence, and through a door someone left just a little unlatched.  Most times we catch it pretty quick.  But there have been times when we’ve called the police for help.  If they want to run and they get out, a minute out of sight can mean they’re also out of hearing.  It’s always scary and there’s always a period of panic, right under the surface, despite the necessary crisis management.  Each time there’s a voice inside me nobody can hear that’s screaming and weeping.

It’d been quite a while since any of the boys had run, though.  The last time was when we were at Willy and Ben’s school (back when they went to the same school) and Alex had slipped away in the press of bodies and gone to the playground.  Mark had the boys in the Early Childhood room, while I was filling out paper work.  Mark was doing something with Ben when the door opened, shut, and Alex was gone.  Within moments the school’s staff was mobilized.  People knew Alex, because he used to go to Roosevelt.  I heard about it over the loud speaker and rushed back.  It seemed like an hour, but was maybe twenty minutes, and he was spotted on the playground and brought to us by one of the therapists.  That was about three years ago.

Then, last week, it happened again.  Not at our house.  Not at school.  Alex was outside in his respite therapist’s fenced yard playing happily.  His therapist was inside for the moment.  Then, another adult came through the gate in the fence.  With a big dog.  Leaving the gate open.  Alex, who is a bit skittish around dogs, went out through the gate to get away from the dog.  The therapist spotted the lapse quickly.  He went looking, using his cell phone to call the police.  But the police had already found him.   A couple saw Alex and stopped him from crossing the street against the light.  They tried to get Alex into their car, but Alex wouldn’t go.  They had no bad intentions, but Alex wouldn’t get in their car.  So, they called the police and the police car came and picked up Alex.  Apparently he went with the police without a problem.  This is good to know.  I’ve always worried that Alex, never responding to lessons about strangers, would go with anyone.  I was wrong and am glad to be wrong.  Safe with the police, they took Alex back to the therapist’s house.  It took all of ten minutes.

Then, the therapist called us to tell us all about it.  When I finally came upstairs and learned what had happened the same panic and worry flooded through me.  I knew Alex was safe and was with his therapist.  But the anxiety didn’t go away until I could take Alex in my arms once more.

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Run for Autism

  • Posted on September 6, 2009 at 12:00 PM

I’ve seen many attempts to raise funds for autism research, most of which I’ve refused to participate in.  The only autism-related fund raising I’ve contributed to is the fund for our local respite program.  However, I’ve recently learned more about OAR (Organization for Autism Research) and I think it’s something I might be able to support.  I’m still not entirely swayed, but I’m open enough to the idea to post the following news from an e-mail sent by Michael V. Maloney, OAR’s Executive Director:

The RUN FOR AUTISM – Chicago is OAR’s largest fundraising event of the year.  This year, The Bank of America Chicago Marathon launched a fun and interactive opportunity that allows you to leave your “digital mark” on the Windy City in anticipation of the marathon on October 11th.

We invite you, your friends and family to log-on to www.chicagomarathon.com/footprint and create a free personalized digital footprint, which includes a shoe tread, personal photo, quote, and your support for OAR. Just select “Run for Autism - Organization for Autism Research” from the charity dropdown menu and create your footprint. Be sure to save the jpeg image so you can share your footprint others, inviting them to log-on to create their own footprint and show their support OAR.

The first 50,000 people to create their footprint will earn $1 donation to charity of their choice, including OAR. You don’t have to be a RUN FOR AUTISM participant to make your mark on Chicago this fall; create your footprint today and spread the word.

Now, I’m not planning on joining the run for autism.  I’ve been to Chicago – twice.  I’ll go again, but spending $30 + (not including gas, food, or other expenses) to participate in an event just isn’t in our budget.  Especially when I’m not 100% on-board with the organization.  However, leaving a footprint sounded worthwhile.

It’s a little hokey, but it gives you the opportunity to choose from a variety of charities (including OAR, but not them exclusively) for a bank to donate money to, which seems like a good cause just about any way I look at it.  If you’re going to do this, you have to design your footprint by October 9th!

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Autism Asperger’s Digest

  • Posted on September 5, 2009 at 12:00 PM

Recently I started building my professional freelance writing portfolio.  After a lot of study, I sent my first query off to Autism Asperger’s Digest.  To my great surprise and enthusiasm, they wanted to see the article on speculation and even added to the word length.  When I turned in my piece, they accepted it for publication.  There’s still editorial work to be done, which I’m going to learn more about this October.  The piece is not scheduled until January 2010, but it’s still a big milestone for me!

As the first professional periodical to accept my non-fiction work for publication, I would like to highlight Autism Asperger’s Digest and tell you a little more about it.  AADigest won the Gold Award three years in a row from the National Parenting Publications Award competition.  “This is NAPPA’s highest honor, and the prestigious award recognizes the AADigest as one of the most useful products geared to expectant, new or veteran parents today,” says the AA Digest.

“Autism Asperger’s Digest has the unique distinction of being the only NAPPA winner to receive a NAPPA Gold Award three times in a row. We salute the editors and writers who provide such reliable, reputable and positive information for families with children and adults on the spectrum,” said NAPPA spokesperson Barbara Smith Decker.

After finding AADigest (far too late for comfort) I immediately became a subscriber.  Being accepted for publication, I got an additional year’s worth of subscriptions as payment.  For those considering trying to place an article here, I should warn you that there’s no financial compensation, but you’ll be published, you’ll get several copies of the issue in which your work appears, and you’ll get a subscription.  For a magazine like this, that’s a great deal – especially if you’re like me and are both trying to reach this particular audience while also being part of this audience.  Of course, parents aren’t the only ones who read AADigest.  They also publish information that is useful to service providers and family and friends of those on the spectrum.

One feature that I believe adds special credibility to AADigest is the column written by Dr. Temple Grandin, Autism & Asperger’s: The Way I See It.  Thus far I’ve been very satisfied with the magazine.  I don’t agree with everything I read there – I’d be disappointed if I did, because that would show a particular bias that is uncharacteristic of good journalism – but they take a very balanced approach between respecting the differences and blessings of autistic people and aiding people who trying to educate and assist autistic people.

I recommend you take a look at AADigest if you haven’t already.  You can browse past issues (some articles are available online), check out the contents of the current issue, or subscribe for a reduced price now!

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Humane Dentistry

  • Posted on September 4, 2009 at 10:24 PM

Alex is our most complicated child.  The symptoms resulting from his autism are the most significant of our three children.  He’s nine years old and still hasn’t found an effective means of communicating consistently.  He rarely attempts verbal communication.  His sensory needs are difficult to meet, because he experiences a complicated mix of hyper- and hypo-sensitivity that seem to fluctuate without notice or apparent cause.  The many trained professionals over the years have made little progress in deciphering the mixed signals we get.  We don’t yet know how to help Alex interpret his environment consistently, which frustrates all of us.

Another ailment which is distinctly Alex’s (of my three boys) is something I don’t have a good name for.  Basically, when his adult teeth grow in his baby teeth have this nasty habit of not coming loose and falling out.  The adult tooth and the baby tooth compete for space where only one tooth should be.  It creates a double row of teeth in one spot that pushes both teeth out of ailment and affects the surrounding teeth.  He also has a very, very sensitive mouth.  When we first started brushing his teeth, he would occasionally gag to the point of throwing up.  Since then he’s learned to control his reactions.  When he cannot tolerate having his teeth brushed he just clamps down his teeth and lips so the toothbrush can’t get in.  If we catch him at just the right frame of mind and level of sensory management, we can occasionally get a tooth brush in his mouth and clean his teeth.  But, it’s not enough and he already shows signs of cavities.

Due to these complications, taking Alex to the dentist seems very inhumane.  To make the experience less traumatic, we go up to the dental clinic in the Children’s Hospital in Milwaukee.  They have a well-trained staff and special equipment housed in a seemingly ideal setting.  We take Alex into a private room with subdued lighting (except for the dentist’s lamp).  They have a hug blanket, which is a form of restraint intended to help keep him still and apply pressure that helps keep him calm.  But then we have to get the wedge in his mouth so the dentist can poke around in there.  The hug blanket isn’t enough, so on comes the happy gas (which isn’t available at the local dentist’s office).

Last time we took too long turning on the happy gas and Alex experienced such a severe reaction to the cleaning process that he threw up.  After that, a lot of happy gas was used.  Alex fell asleep or a state of near sleep, which allowed the dentist to x-ray his teeth (revealing the near cavities) and finish some of the cleaning.  Even in this state, Alex was uncooperative.  Furthermore, I was concerned that he’d had too much of the gas.  He lolled a great deal and lay down in the car on the way home.  It’s an hour and a half to two hour drive back to our house.  I was alone with Alex and as much as I would have liked to watch him, I had to keep my eyes on the road.  I felt anxious for his well-being all the way home, and would reach my arm behind me to touch him and feel the rise and fall of his shallow breaths.  He was out of it and upset for the rest of the day.

After seeing how traumatic the experience was for Alex, the dentist recommended putting him under general anesthesia in order to perform all his dental care needs at once.  This is a procedure the dental clinic is able to do, but getting MA approval is difficult.  Before we can get that approval we have another regular visit to see if just maybe it’ll go more smoothly this time.  It’s a week away and I’m not looking forward to it.  Luckily this time I will be picking my mother up at the airport on the way back, so I’ll have another set of eyes to watch Alex.

The question I ask myself is:  What would be the most humane way to get Alex the dental care he needs?  I don’t like restraints, I don’t like doping him up with “happy gas” (which, btw, doesn’t make him at all happy), and I don’t like the idea of putting him under.  Yet, without the restraints and the happy gas, dental care would be even more traumatic for Alex.  And putting him under may be the least traumatic alternative.  If teeth problems didn’t cause so much pain (as I know from my own mouth and through observing others), then I would probably say we should just forget the whole thing.  But cavities are painful.  Untreated cavities can lead to cysts, which are even more painful.  And, while I cannot be sure, I cannot imagine that having two teeth where there should only be one would be all that comfortable.  I especially cannot imagine that, since his aggressive behavior started right around the time the first baby tooth refused to come out.  It might be coincidence, but he might be in constant pain or maybe just discomfort.  That would certainly explain his irritability.  But so would the general frustration of being unable to consistently communicate in a manner that is understood by others.

The most difficult thing for me is the ignorance.  I don’t know the best thing to do for my child.  If I knew, but was unable to do it, I could at least plan and strategize how to achieve my goals.  But, not knowing leaves so few options.  At this point, I can only make the best choice possible – using both my head and my heart to see which way to go – and hope Alex can forgive me if I’m wrong.  As a parent, there is just so much of that.  We second-guess ourselves, because some of the choices we make are just wrong.  But we never have all the information; we never know all the consequences; and we cannot see inside our children’s minds or ask their future selves to know what they would choose if they were able.  We must do the best we can and remember to say “I’m sorry” when we’re wrong.

P.S. Left Brain/Right Brain also has a post about autism and dentistry that leads you to an article by Darlene Oakley.

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