Misdiagnosed Without Compassion - August 28, 2012

I’m skeptical of professionals who don’t have kids and diagnose my daughter.  I’m not talking about medical doctors who run tests, consult with colleagues and reference medical journals, either.  In my case, I’m referring to an incident I had with a Speech Therapist.

 

My daughter was still only babbling at eighteen months.  She had the vocabulary of babies six months younger than her.  I could make out a “hi” or a “bye” here and there, but that was about it.  It set off a “special needs” warning in me that I felt determined to investigate.

 

I wasn’t aware of the government-sponsored programs yet, so I discussed the situation with my daughter’s pediatrician and she referred her to a Speech Pathologist.  We are all ignorant as parents, until we educate ourselves by reading or by experience.  I wasn’t at the point where I thought she had a major disability, but a small, red flag was sticking out of my daughter’s head every time I heard her babble.  That was until this Speech Therapist terrified the poop out of me.

 

Our visit was 30 minutes.  The first 15 minutes, she asked my 18-month-old to look at a few flash cards and repeat the words after her.  She did the same exact thing with an iPad.  Then, she let her use paint dots, while we talked for the last 15 minutes.  She asked about our experiences at home and I responded as truthfully as I could.  My husband evened out my exaggerations with contradictory statements at all of the right times, so our team was effective, I believe.

 

We always seem to compliment each other when we describe our daughter to people.  I have a great memory, but tend to embellish things.  He has a terrible memory, but knows that I embellish and can somehow decipher the level of my embellishment and keep our descriptions in check.

 

I walked out of there with a series of four follow-up appointments scheduled and felt confident that, if we worked with our daughter, we would get to the bottom of her speech issues and figure out if it was a delay, disability or something else.  A few days later, I received a diagnosis sheet from the Speech Pathologist.  I’m assuming it was to submit the request to our insurance company and determine whether the therapy would be covered.

 

There was no follow-up call from her office with an explanation of the diagnosis, just this damn sheet in the mail.  Right at the top, it listed “Mild Developmental Apraxia of Speech” next to an insurance code.  I had heard of Dyslexia before, so it didn’t sound encouraging.  Anything with an –xia ending frankly makes me nervous.

 

I was on the Internet within seconds.  WebMD gave me a panic attack of course with their definition.  All of the words made me sick with the thought that my daughter would have to “struggle”.  She would have to work harder to accomplish something that would come easily to other kids.  One of a parent’s worst nightmares.

 

Why didn’t this woman have the decency to call me with this diagnosis?  Did she just assume that I knew what this diagnosis meant?  I equated it to having a doctor send the results of investigative surgery, stating they found a tumor, but not including whether it’s benign or malignant via email.

 

I called up her office, demanding an explanation, half freaked out and half angry, but trying to contain myself in order to understand what this meant for my daughter.  I didn’t want to get lost in my anger and forget what this was all about, her well-being.  Of course, the Speech Pathologist was on vacation and would call me back the next week.  I would suffer silently in the unknown for four more days or find someone else to tell me what the hell all of this meant.  No one could, because they weren’t the ones who observed and diagnosed my daughter.

 

When the doctor returned the next week, she nonchalantly apologized for not calling and explaining the diagnosis.  She then went on to explain that my daughter might have to deal with this for the rest of her life.  I had two thoughts here: go f#$% yourself bitch and I need a second opinion.

 

I spent the next two days scouring the internet trying to find the BEST Speech Pathologist within a 100-mile radius and came upon the link for a local, government sponsored program offering diagnosis and therapy services for toddlers 18-months-old to 3-years-old.  I immediately called and an appointment to review my daughter’s case was scheduled for the following week.

 

We went through the process with ease and a Speech Therapist was assigned to my daughter for weekly visits.  There was no diagnosis of Apraxia and I was told that most Speech Pathologists don’t even believe the diagnosis can be made until a child is two or three years old because they all develop at different rates in different areas.  She was simply speech delayed, as far as they were concerned.  And, they spent an hour to determine this, not 15 minutes.

 

Regardless of how confident the previous Speech Pathologist felt in her diagnosis, I’m convinced she had no compassion because she didn’t have a child of her own.  How else could it be explained?  No parent in his or her right mind would send home a diagnosis like this without a phone call.  We, as parents, are part of a club with the utmost empathy.

 

Today, at 4-years-old, my daughter has her moments where she needs to work through her words or think a little harder before she speaks, but she is completely fine other than that.  I even had her reviewed by her upcoming elementary school’s consultant and she had the same opinion as the state program.  She even sounded peeved that the Speech Pathologist brought up that diagnosis before my daughter was two.

 

Lessons learned: when it comes to your kid, always let your mother’s instinct guide you.  It trumps any professional or doctor.  They can advise you, but ultimately you decide what’s right for your child.  And, never forget to get a second opinion or even a third or fourth, if you need it.  Also, ask if they have kids.  After my experience, I believe it carries better odds that I’ll be provided with some compassion or maybe even just a phone call.

 

Has anyone had an experience like this?

 

  1. When my middle child was about 18 months my husband took her in for a well check at Kaiser as part of the routine you answer questions. About a week or so we got a letter in the mail that said based on that questionaire we had to come in to the autism center and have her evaluated. I cried on the spot! I work at a school I work with kids on the spectrum- what!! After I calmed down I called the peditritian- did she think my baby had autism and need a more in depth check up. She did not and she had nothing to do with that letter it was simply based on that questionnaire. My husband is not great on answering questions on our kids. I felt this was so irresponsible I called and complained. I have no idea if they changed the practice. I think it is great to try and identify kids early but sending out a letter with saying a kid needs to be evaluated for autism is scary and should be done with more compassion- it should be something the pediatrician and parent and the questionnaire decide not just one questionnaire and no she does not have autism.

    Comment by Nicole — August 28, 2012 @ 5:41 pm
  2. Thanks for the warning about the Kaiser questionnaire, Nicole. If it’s still in place, maybe it will help others not take the response to heart. That’s terrible practice. I wonder how many other mothers have gone though this.

    Comment by Mommy Unmuted — August 29, 2012 @ 7:47 am

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