Clouds, May 2010

Clouds, May 2010

Friday, July 5, 2013

my, what big teeth you have.

--> Well, July happens to be Fragile X Awareness month & I have a recent story which will give some thorough insight as far as the challenges our kids face.

We had a very difficult experience at the dentist earlier in the week, & I was so emotional about it I was barely talking about it.

Hayden has only ever been to one dentist, & we were always very happy with this particular Practice. It wasn't until our last visit (before this one) that we had a bad experience, which was mainly a scheduling mistake.

But the situation this week has helped me to definitively decided to switch. Luckily we have the most incredible Pediatrician possible (seriously) & he already had given us the name of someone else.

So when we received one of those automatic survey emails I decided to take the opportunity to reply:

"To Whom It May Concern,

Our son is 8 years old, & Dr. E is the only dentist that we have ever brought him to.

Several years ago at our very first visit,
Dr. E approached us in the waiting area to say hello.  He introduced himself to us & to our son, & seemed very caring.

Our child has special needs including sensory processing disorder as well as anxiety. He can also be tactile-defensive particularly when his anxiety is heightened, & probably the most vulnerable area to him would be his mouth. He had speech apraxia through age 5, & continues to exhibit oral motor challenges. As a result of the aforementioned, he also has a strong gag reflex.

He has a hidden disability called Fragile X Syndrome. He does not have autism, even though that is a better-known hidden disability… & even though about 1/3 of people with FX also have autism… our son happens to not be on the spectrum.

His needs should not necessarily be met the same as a child with autism. I would rarely ever suggest that someone should approach treating (or working with) our son in that way. He is very social. He wants to get to know people, he wants to like them, & consequently people often agree he is quite easy to love.

Dr. E  was always very understanding & didn’t seem to mind when Hayden cried during a dental visit. He used to say, “it’s OK… when they get upset I can see in their mouth better.”

I remember the first time that our son accidentally threw up because he was crying so much & has such a strong gag reflex… & the reason I remember this, is because they caught it with a little pan, wiped his mouth, & kept going like it was no big deal.

However he did ask us what the “green stuff” was, so I explained it was a spinach omelet from his breakfast. With that,
Dr. E said make sure they book you an appointment an hour earlier so you can skip breakfast when he sees me. They wrote “No Food” on our appointment reminder.

For some reason the next appointment had to be rescheduled, & all I remember is that I clearly explained to the person I was speaking with about the importance of our son having the earliest appointment possible & only with
Dr. E (consistency can also help curb our son’s anxiety).

Apparently when this person rescheduled our appointment, she made it on a day when
Dr. E does not typically take his first patient until 9am. But our appointment was at 8.

Dr. E showed up for work early that day, or maybe he is usually in the office an hour before, but we didn’t know this. So when he looked at us in surprise, we thought he was just kidding around.

The only thing worse than calming our son down for a dentist appointment, is making him go twice in one day. We were actually asked to leave & to come back at 9. Our son was trying very hard to control himself & quite honestly it broke our hearts.

We were furious over the scheduling error, but pulled ourselves together to get through it so we could come back in an hour & get the appointment over with. We drove up the road to Walmart, mainly because nothing else was open yet, & tried to cheer our son up. But his nervousness barely settled.

Dr. E is the only person our son has ever known to look at his teeth. And we never, ever had a negative experience before that. And ultimately for the most part, the appointment was OK… he was crying but he got through it. Luckily he has good teeth-- that’s what we’ve always been told.

But I still can’t imagine the amount of self-control & bravery it took for my son to go up to
Dr. E’s office twice in the same morning.  

Waiting is quite possibly one of the single most difficult things for many children with FX. Likewise, prolonging something poses a similar challenge because transitions can be an anxiety trigger.

This is the type of information I share with anyone working with our son.

So imagine our confusion when we arrived at our appointment the other day, & the staff said they wanted to make sure that our son had a few minutes to calm down before
Dr. E came in. I looked at the woman behind the desk & said, “I hope not for long? That is definitely going to heighten his anxiety.”

It was later explained to us that this was the note in his file. I have no clue who put that there or why... but I do know as sure as I know my own name that I never, ever would’ve suggested that.

The few minutes we were in the exam room with our son before
Dr. E came in-- the supposed “deliberate” wait time-- basically pushed our child to the limit.  Distraction techniques often work wonders with him, & I tried explaining this to Dr. E. I suggested he talk about something else or tell my son a story— ANYTHING besides narrating what he was doing to his mouth!

Dr. E responded with, “I was never really good at that.” But he tried, for a few seconds, to tell a make-believe version of the Three Bears. For a moment there I appreciated the effort, but by that point it was too late to help our son regulate his emotions.

It was becoming increasingly tougher to hold our son still, & his cry was becoming that much louder. This time when he started to choke from his sobbing there was no tray to catch anything, & our poor kid basically swallowed what was starting to come up.

With that,
Dr. E literally stood up & said, “I am not going to torture him & just have him throw up all over my floor. I can’t do this.” And then he left. He left us in the room with our son pinned down in the exam chair by both his parents.

Our son’s name is Hayden. He likes to please people. He likes to know that they’re proud of him… his family, his teachers, & yes, even his doctors. We have certainly found some gems to work with him & care for him, & for this we are inexplicably grateful. And we hold onto the good ones— the right ones— for dear life. We let them know just how much they’re appreciated.

I think
Dr. E has a good heart & he means well, & I think there’s a reason he has such a successful practice. And I am glad for him that he has a loyal patient base.

But the way we were treated these last two visits— especially this most recent one when he actually stood up & left the exam room— is inexcusable.

Best of luck to you, personally & professionally."


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