Day 181 – Medical Staff Awareness or Lack Thereof

This morning we had to take Andy in to get an EEG because of the seizure he had last week.

I have to say that I was quite impressed first of all with the hospital staff and paramedics who tended to Andy that day last week.  They were very aware of the way Andy might be feeling or responding to the different treatments and they adjusted when they noticed he was not doing well.  They had many staff on hand when he got his needle and they were talking to Andy even though they knew he did not talk.  They asked us questions about how would be the best way to go about doing things.

This morning was a different story.  Although we were happily surprised to see an old friend of ours from our youth group years, behind the reception desk,  once past her pleasant face and into the hands of the technician, we encountered what we like to call “Autism UN-Awareness”.

It kind of boggles me how a medical professional would not be aware of the different needs of patients with different medical conditions.  When you call a plumber to fix your drain you expect him to be knowledgeable about every type of drain and the problems he might encounter to try and avoid while fixing your drain.  I would think that I could expect the same from someone in the medical profession who is treating my child.  In fact, I would expect more care when it comes to real people and children as opposed to objects.

The three of us were following the technician into the room when she said only one of us could come in to which John said “Are you going to hold him too then? He has Autism.”  She said “No, I am going to be back here behind the computer.  I can’t fit 13 people in here.”  I think if Andy could talk, he would have pointed out that there were only 4 of us all together.

I deposited our bags outside the door to help calm her claustrophobia but promptly returned to the room since I knew probes on Andy’s head was going to require a person holding his hands and a person holding his head or shoulders.

A cap was placed on his head with holes around it and she had a syringe where she squirted gel into the holes.  I’m sure it wasn’t that long a process to the average person but when you are bent over a squirming 14 yr old. holding him down and trying to keep him from taking the whole thing off, it seemed like a very long time.

One sensor was placed on his forehead below the rim of this cap between his eyes and a piece of tape placed over top.  Right away, Andy wrinkled his brow moving the sensor.  John asked if the sensor could be placed under the cap but no response from the technician who then began sticking the syringe into the holes just to move the gel around.  More squirming and I must have replaced that one sensor 20 times as Andy wrinkled his brow and in the middle of the test, he somehow managed to squirm the cap off his head.  The technician said “well that’s done now”.  So then we had to start over again.

Meanwhile the whole time, I was also trying to hold on to the IPad that was playing Andy’s favourite movie to distract him from the poking on his head while holding his shoulders down.  At one point I said “This test was not made with squirmy people in mind was it?”

Finally, she took that “forever moving” probe and put it under the cap, like John had suggested in the beginning, and was able to finish the test.  I think all of us breathed a collective sigh of relief.

She told us there were a few good readings that could be salvaged from the test.  I wanted to say “That’s good because we won’t be doing that again anytime soon!” but I bit my tongue.

Now I am not ignorant of what it is like being pushed and kicked and talked to rudely.  It is something I experience on a daily basis.  I understand that medical professionals encounter all kinds of behaviours from patients and I can sympathize with them.  But I do know that a little knowledge can go a long way to making things much better for both the professional and the patient.

Why not have a questionnaire when speaking on the phone to ask questions like maybe “Does the patient have issues with wearing hats?” or “Will the patient be uncomfortable with poking on his/her head?”  These questions would help technicians to be more prepared for the appointment which would in turn make the process a lot smoother.

Even if such questions weren’t asked and the technicians aren’t prepared, for goodness sakes, listen to the parents!  What possesses a technician to ignore and even be rude to a parent when they are trying to help them with suggestions?

Now this was actually a reasonably good reaction from Andy.  We knew he was going to squirm but we also knew there was a great potential for him to get anxious about the whole thing and start to cry, scream, thrash, bite his wrist and hit his head.  He did very well and the technician did not have to handle the squirming one bit from behind that computer.

We have a long ways to go with Autism Awareness and we need to start with the professionals that will be encountering individuals with Autism under unpleasant circumstances.

My advice for professionals would be to
1) Get up to speed on the latest information.  Someone working with computers has to constantly keep their skills updated on the latest software.  Know the latest on patients, i.e.: who and what you will be seeing more often within your office and what tips are there to make this procedure more pleasant.
2) Be prepared by asking key questions before the appointment!  Start with the obvious ones like will the procedure be resisted? or will the procedure cause anxiety? or are there any medical conditions we should be aware of?
3) Listen to the caregivers!  Don’t insist on putting every patient in a neat little box.  That never works and 9 times out of 10, you will be disappointed.  The caregivers know the patient and may actually have neat tricks that makes everything better!
4) I am only saying this for the sake of ridiculous policies that are not possible with my boys (ever) but here it is… rules are made to be broken.  I am not condoning the breaking of laws as such but rather the incredibly silly policies that don’t consider patients with special needs.  Please, Please stop insisting on kids and parents doing things they can’t do.

It was funny today when we got home the local newspaper had a picture on the front page of a man with the same cap on getting an EEG.

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