An Open Letter to the Doctor’s & Specialists Who Evaluate/Diagnose our Special Children

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It’s been a while since my last blog post. Life and family obligations have had my full attention and I am ready to start writing again.

A few weeks ago my sweet and beautiful son Talan was diagnosed with Autism. At age 8. After countless evaluations by every specialist out there starting at the age of 3.

Talan has severe Apraxia which effects him globally. That means it effects his body on every level; expressive and receptive speech, motor skills, imitation, motor planning, executive functioning, spatial awareness, and any task that requires on demand responses. The more difficult the task, the more he will avoid and shut down.

Recently, Talan has had a very hard time controlling his emotions whenever he gets frustrated, which is pretty often considering how difficult it is for him to complete simple tasks or communicate effectively. He is getting older, wiser, and more aware of his weaknesses. In turn, his frustrations and meltdowns are also growing bigger. Can’t say that I blame him, I would be pretty pissed too if I couldn’t say what I was thinking or feeling, or get my body to move the way I want it to.

About a month prior to all of these recent meltdowns, I had made an appointment with a Neurologist as part of Talan’s routine follow up care to a cyst he had on the left frontal lobe of his brain. I figured it would be a good time to mention my concerns and see if we could get any answers. Talan struggles greatly in so many areas, yet no one can seem to tell us WHY and even though every Doctor has said the cyst “may have contributed” to his challenges, no one will say it IS the culprit for sure.  ***sigh***

When we arrived at the hospital located in Tampa, FL about an hour away from our home, we were greeted rather quickly by a nurse and taken into a back room for a EEG (Electroencephalogram) which measures electrical activity in your brain. Talan was hooked up to this machine with multiple wires attached to his head. He had to sit as still and quiet as possible for 45 minutes. 45 MINUTES! This is no easy task for my son so I came prepared with a little prize for getting through the testing and it worked like a charm! YAY!

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While Talan was with his dad for the testing, I was brought into another room where I was met by the Neurologist and a Pediatric Developmental specialist. I was asked every question under the sun about my pregnancy, birth, and Talan’s development since birth. I gave them copies of every single evaluation starting at age one. I was prepared. I was poised. I was ecstatic that the EEG was going so smoothly. I was calm.

Until they brought Talan into the room. The tension went from 0-100 in the matter of seconds. Why? Because here he was, waiting SO patiently for that darn toy to be opened. A toy he sat waiting 45 minutes for, and now he was being taken into another room for more waiting. I could see in his eyes that he was DONE. He didn’t want to be in that office for another minute which just set him up for failure in my opinion.

The Doctor’s began asking Talan questions: “what is your name”?  “how old are you”?? “what color are my shoes”??  “are these papers under the table or on top of the table”??

In my head I was screaming STOP!!!!! Instead, I politely reminded these Doctor’s that Talan has profound Apraxia and that he simply cannot answer questions so quickly and that they needed to slow it down. Mind you, just this past Friday we met with a Pediatric Psychologist who asked these same questions slowly and NOT after a 45 min EEG, and Talan did great and was able to answer correctly! Go figure.

SO getting back to the Neurology appointment. After asking Talan a laundry list of questions and getting nowhere because all he did was whine and avoid everyone, including me, the Neurologist diagnosed him with Autism. He looked at me and my husband square in the eyes and told us that Talan would “struggle for the rest of his life” and to get ABA therapy (applied behavioral therapy) to help with his meltdowns. He also told us that he was “more concerned about how severe his Apraxia is than anything else”.  He then printed out a script for ABA therapy with a diagnosis of Autism Spectrum Disorder, and walked out of the room. He spent maybe 15 minutes with us. 15 whole minutes with my son and we left with a diagnosis of Autism in addition to everything else.

I left that appointment crying. Frustrated. Confused. I had even more questions than I went in with!

How could Talan have had SO many evaluations by SO many experts, including some of the best in Boston,  an Apraxia expert in Pittsburgh, and NOT one person mention Autism? Were they all wrong? Was this new Doctor wrong? Did we ALL miss something???!!!

So, here we are again. Meeting with yet another “ist”. Another person who will have a nice office with all of their amazing degree’s framed and hung on the walls along with a list of their areas of expertise.

I just want to tell these Doctor’s and Specialists something: it doesn’t matter what degree you have or how much experience you think you have. It doesn’t matter if you work at one of the best children’s hospitals or one of the worst. It doesn’t matter how smart you are or how many evaluations you have done.

What matters is if you are doing your job correctly.

If you are cramming too much testing into ONE visit.

If you are truly looking at a child’s diagnosis and history, and taking it all into consideration before appointments and evaluations.

If you are spending sufficient time with a child to come to a formal diagnosis.

I am here to tell you as mom, if you are NOT taking the time to do all of these things, you are letting our kids down.

You are wasting our time!

I am here to tell you that if a child has to go through repeated evaluations just 3 weeks after they see you in your office, you are doing something wrong.

To the Doctor’s and Specialists out there who are evaluating/diagnosing our special children, please pay attention.  You MUST pay attention. You can’t rush it.

You see a child with ADHD coming in? Why make them sit through a 2+ hour visit and expect them to hang in there? Why not split the appointment up over 2 days if needed?

You see a child (like mine) come in with major speech and motor planning deficits, why ask this child 10 questions quickly and expect an even quicker response? Why not allow more time for answering? Why not use more visual ques to help the child answer? Maybe for this child you should have a speech pathologist available to help facilitate the evaluation? Maybe an Occupational Therapist? Someone who  works with these kids each day and truly understands their diagnosis.

You see a child with sensory issues and you know they just sat through a test for 45 min with wires attached to their head. Why expect them to then sit down and participate in more testing for any length of time, when you know they are spent?? Why not schedule additional testing on another day when the child is rested and fresh?

Why cram so much in one visit when you know our kids need more time than that to process it all????

To the Doctor’s and Specialists who are evaluating/diagnosing our special children:

Our kids deserve your time. More time.

 

Sincerely,

A mom who will not accept a half ass evaluation

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