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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Friday, March 24, 2006

 

Keep Smiling

Today, Adam had dental surgery. He has soft teeth and bad bacteria that tooth brushing, flossing and flouride treatments just couldn't beat. We arrived, and experience a little from last year's ear tube implants, I must say the hospital staff accomodated us beautifully. A little bit of advocating for Adam's special needs really went a long way....

Adam has gained, quite justifiably, an incredible fear of doctors and their gadgets. Forget the dentist. He won't have anything to do with him anymore. Last week's visit to his pediatrician resulted in screaming, tearing out my hair, and yelling to the doctor "go away" repetitively. All of these events lead us to decide that it was better to give Adam general anaesthesia to get a lot of needed work done, than to subject him to a series of dental appointements.

To prepare, I called the anaesthesiologist a week in advance. I asked to be in the O.R., and that Adam be given a light sedative so that he wouldn't panic once he had to have the mask. I asked that I be in recovery before he awoke so that he wouldn't panic and scream like the last time -- I don't know how he perceives things when he wakes up. At first, when I advocated for Adam, there was some hesitancy. I needed to tell the woman that Adam was autistic and recently developed a severe fear of doctors. Subsequent questions proceeded -- was he "high or low functioning?" she asked nicely.

I said he was autistic and there was no such thing as high or low functioning -- I felt that I needed to stay with the facts that I knew: that he could talk a little but in a circumstance like this may not talk at all, that he would scream if they tried to pin him down, that he would resist everything and would need extra time, and require sedative before anasthesia. I asked that the crew talk softy to Adam and not raise their voices if Adam resisted. I mentioned that Adam panicked the last time he was in the recovery room and that it would be best if he could see my face when he awoke.

"It's scarry for all kids," she said.

"I'm sure it is, but we can't honestly say that we know how he perceives the experience and if he is extra disoriented," I replied. "I feel it is important to support him and make sure he gets the accomodations he needs."

After half an hour of requesting, the very pleasant woman said she would do everything she could and even came to the waiting rooms to meet us today. I had a chance to recap all of these with the head anaesthetist. All of our requests for Adam were honoured and respected, and as a result, this surgery, which took two hours, was much less traumatic than his last one. One might even say, smooth.


Just before surgery Posted by Picasa

In contrast, I saw another autistic older boy today. He was non verbal but made noises. He kept "regarding" lego pieces, his body hovered into a ball on the floor, after the pre-operative examination -- he moaned in terror and the legos calmed him. He tried to resist as they made him transition from this room to the O.R. waiting room. There were more legos to regard when I saw them there, but I wondered why the same accomodation wasn't made for this child who could not advocate for himself? At one point, his mother grabbed him aggressively by the arm and forced him to put the legos away. I was shocked. These were the obvious means by which he was soothing himself. She looked visibly annoyed with him, but I couldn't tell if she was just scarred herself. You know that feeling when you want to burst into tears, but instead you literally swallow them? Well...

Later, that same boy came out earlier than Adam from surgery, walking with his father, but moaning and making sounds like a wounded animal. The distress was clear enough communication for me. His moans became mixed with cries when they passed the doorway, I could see the son try to burrow his head in his father's chest. The father kept talking to him firmly, "shhhhh, shhhhh," moving his own body away from his desperate son's. Now, all of these observations and judgements are mine, I know. But I never felt so sad in my life for a child. There was a coldness there and I simply couldn't relate.

Adam slept most of the day today and when he woke up, came to and later laughed a little, I was shocked. All of his back teeth -- upper and lower -- are silver capped. He looks like that guy from James Bond with all the silver sharp teeth!! I knew they were capped afterward -- the dentist told me. He also had two "baby" root canals. Apparently, his teeth are deteriorating quickly -- tightly jammed teeth and this lactobacillic bacteria that don't give his little teeth much of a chance. Thankfully, his front teeth are still white, but let me tell you, Adam's smile is very different when he laughs. I thank God that these are just baby teeth and they will fall out. The silver will likely dull with time and mastication. Yet, I know his smile will keep on shining, even if a little brighter than before.

15 Comments:

Blogger Jannalou said...

Parents like that give credence to the Bettleheim claim. I feel so badly for the children, but I wonder, too, what has damaged the parents so much that they deny their children the comfort they so obviously need.

The "severely" autistic boy whom I worked with for two years, here, has a phenomenal father... who actually allowed his son to bite him in order to get through a medical procedure one day. (Drinking some kind of stuff so they could do an x-ray or something. It was "take a sip, bite Dad, take a sip, bite Dad".) Afterwards, they got fries from McDonald's.

Now, that's parental love.

10:55 PM  
Blogger SquareGirl said...

Oh Estee, I can't help but be distressed about the other boys experience, even while being comforted that Adam recieved the treatment of humanity that he deserved, due to your advocacy. I may be naive, but I truly believe that there may come a day that advocacy is unessacary for humane and conscientious treatment. I am still looking forward to seeing Adam's face and sweet smile here yet again!

1:43 AM  
Blogger Estee Klar-Wolfond said...

You guys really got the gist of what I was trying to say, without actually saying it.

My next post will address this more theoretically.

9:04 AM  
Blogger Kristina Chew said...

Good you got through that. We're starting a behavioral program in which a dental visit is broken down into several smaller ones and we practice using dental instruments at home. My own dentist has a severely autistic 20 year old son and told me, if we can go behavioral, it will be best in the long run.

9:34 AM  
Blogger Jannalou said...

Same kid from above couldn't handle the dentist visits at all when he was little. He now will let the dentist examine his mouth, but he still needs to be put under for any procedures.

What they did? Systematic desensitisation. They went to the dentist (same dentist) every three months or so, and at first they just sat in the waiting room. Then they went and sat in the dentist chair. Then the dentist had him open his mouth. Then the dentist counted his teeth. I suppose next will be having the tools in his mouth. I would never take it to the level of actually drilling in his mouth, though. *I* hate it and want to run away, so I wouldn't do that to a child, period.

He has a picture of himself having his teeth counted. He seems to really like having it around - goes through phases where he'll keep it with him and script about the dentist. (He also will script about the doctor.)

10:14 AM  
Blogger Mom to Mr. Handsome said...

That is so great that you had a plan. I too have been in situations where I have wanted to cry when I see children being treated without respect to their needs. I have to remind myslef that I do not know the situation or circumstances, but it is hard to ignore your gut feeling. I'm glad that Adam's dental surgery went well. I'm not looking forward to taking Gabe to the dentist.

Kristin

10:14 AM  
Blogger Lisa/Jedi said...

My heart breaks, also, when I see kids being treated so disrespectfully, especially in light of the success we've had using a very hands-on (hugs-on?) approach with B since infancy. B's one & only surgical experience came before his diagnosis, so I didn't have a "reason" for wanting to be with him right up until he was sedated except that I knew he needed me. The anaestesiologists weren't able to promise us anything, but it was B's surgeon that made the difference. He just tossed me a "bunny suit" & invited me right into the OR :) He was able to tell me when B was out, & we were present when he woke-up too, thanks to the surgeon's intervention.

I am also grateful that, thanks to my own horrific experiences with dentistry in childhood, we made sure that B had a different experience. I hand-picked his pediatric dentist (I had worked with many dentists when I was a oral biology researcher) & we started going when he was 2 1/2 years old, when he had to sit in my lap in the dental chair for exams because he was so little. As soon as B was diagnosed with AS we made sure to let the dentist know- & explain how he might handle any unusual behaviours on B's part- & he was very, very grateful. It made me wonder how many parents go to the trouble (at least in his practise). B has absolutely no fear of dentistry &sailed through his one & only filling so far when he was six... We recently went through a similar process with orthodontic evaluation, letting the office know ahead of time about B's having AS, Tourettes, & OCD, & made sure they were also aware of his oral-motor & sensory differences. The appointment went beautifully & they have assured us that they can use a method that accomodates B's needs when the time comes for braces. An ounce of prevention...

10:35 AM  
Blogger Estee Klar-Wolfond said...

Jannalou,

Yes, I'm planning on that strategy with the doctor next and then the dentist. It's just at such a point that doing this systemic approach is the only recourse at this point.

I'm never sure with Adam, though. His sensitivities are changing month to month, or over a few months. I've tried systemized approaches before, to find that he's just too smart for it and it doesn't make any difference. Once he gets into that chair, that will be it.

As with anything, I've tried with Adam, sleep, weaning, food...it's all about timing for him. For me, I have to deal with the issue from both ends to meet with him somewhere in the middle.

With every other "issue" (I will not call it a behaviour because he is an individual who has fears and desires which change with time), I've struggled with so many behavioural methods "Ferberizing..." and my heart can't take that stuff. Maybe I'm too sensitive, but I always retry and reintroduce. Adam has to-date, always surprised me --when he's ready he just does the "thing" so effortlessly that all the previous struggles seem like a hundred years ago.

For us, I think it is really a combination of me trying, waiting, reintroducing. I'm going to try that method with the doctor, and then see what happens. He needs to know to a degree that the doctor is there to help him, but come time for that booster shot, he may never trust that guy again ;)

3:55 PM  
Anonymous kyra said...

oh, estee! i'm so glad that adam's surgery went well and that you were heard by the staff. i feel such sadness for the other boy and his obviously scared parents.

6:27 PM  
Anonymous Anonymous said...

My child, who is autistic, has had a few fillings also. I made sure to tell the pediatric dentist (who services many autistic children and is one of the best) to use composite fillings only. He was in complete agreement and said that no metal fillings (amalgam) of any kind should be used on children since the concern of possible mercury contained in them. Additionally, composite fillings blend right in with the teeth since they are white. I would question any pediatric dentist who would cap a child's teeth with metal fillings rather than just fill actual cavities with composites.

7:55 AM  
Blogger Lisa/Jedi said...

Since these are deciduous teeth, there might have been a very good reason to cap them with metal rather than a composite (for example, the "softness" of Adam's teeth could be a factor, since you don't want the restorations themselves to damage the teeth). There have been many changes in dental technology over the years & the materials used in all amalgams are not toxic, no matter what their base material is made of. I know this because I spent a lot of years in dental research before my son was born. I think it's important for a parent to discuss any concerns before the work is done, but we've come a long way since the old "radio conductor" fillings...

8:23 AM  
Blogger Estee Klar-Wolfond said...

Thanks, Lisa/Jedi. Definitely these were not mercury...they are SILVER. There were, as you said, many reasons to cap them.

There is not any proof that mercury causes autism (sigh...repetitious) although many of us, including myself, do not want a mouth full it it.

1:25 PM  
Anonymous Anonymous said...

Estee,

To the best of my knowledge silver fillings are known as amalgam. Mercury is part of these fillings. On many surfaces of the teeth white filling cannot be used because it does not stand up to wear and tear. I have had a dentist for forty years who is known and trusted for his honesty. He stands by the use of amalgam fillings despite the present controversy.

Scorpio

3:19 PM  
Anonymous Anonymous said...

Estee,

To the best of my knowledge silver fillings are known as amalgam. Mercury is part of these fillings. On many surfaces of the teeth white filling cannot be used because it does not stand up to wear and tear. I have had a dentist for forty years who is known and trusted for his honesty. He stands by the use of amalgam fillings despite the present controversy.

Scorpio

3:20 PM  
Blogger Estee Klar-Wolfond said...

This dentist said no mercury.

I can only hope he was honest.

8:51 PM  

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