“My Story…” Monday: A – He Talks

(You can catch up on A’s story right here: The Pregnancy, The Birth, The Infancy, The Quiet Toddler, Advocating, What He COULD Do, Just A Boy, The (Hard) Next Step, Making a Friend, The Autism Diagnosis)

 

So, after receiving the PDD-NOS diagnosis, we were also given a follow-up appointment with a psychiatrist specializing in treating patients who fell on the autism spectrum.  Okay.

 

We went.  And this time, we ALL went.  My husband, me, and both of our children.  It was autumn by then, and we all sat in a little square room with two sofas.  My family sat on one and the “expert” faced us.  Along for the ride was a fellow (the doctor kind of “fellow”, not just a quaint word for “guy”.)   We were ready to hear what professional recommendations she might have for us.

 

She shifted a bunch of papers around and started talking.

 

“So, I’ve reviewed your son’s case.”

 

(At this point, I want to let you know that– for the duration of our conversation– A. was always referred to that way.  “Your son.”  It was as if he didn’t have a name.  I would also like to point out that she never, not one single time, addressed my sweet boy directly.  This is important because you must realize that she was basing all of her recommendations on a written report she had received.  She barely looked at my child.  Anyhow, she continued…)

“Pretty much, what we would recommend is what he’s already receiving.  I would suggest you all continue with the speech and occupational therapy.  Judging from what I see here, it doesn’t appear that there’s a huge need for behavioral therapy at this point.”

 

We listened, waiting to hear if there was, in fact, a reason we had driven two hours that morning.  Was this it?  Were we going to be told to just carry on as is?  Well, not exactly.

 

“Because your son is only two years old, he wouldn’t qualify for this, but I’d like you to stay in touch with me because when he turns three, I have a pharmaceutical research study going on that I think he could qualify for.”

 

Come again?

 

“We can’t enroll him in the pharmaceutical testing until he’s at least three but, at that point, we could see how that might affect him.”

 

I looked at my husband.  He looked back at me.  We watched our little boy manipulate a puzzle in the corner of the room.

“So, um, what would we be trying to help with this?  I mean, when we had the evaluation, the therapist concurred that there did not appear to be any reason at all to medicate A.”

 

“Well, like I said, this wouldn’t be until he turned three.”

 

“Thank you very much.”

 

And we were gone.

 

In the car, I glanced down at the business card we had been given.  Under the doctor’s credentials was listed a specialty in pharmacology.  Lovely.  Now, I’m not saying there’s anything wrong with doctors who specialize in studying new medications.  They do important work.  But I was livid that this woman was suggesting we drug our sweet child– for no apparent reason other than to give her some research material.  It still makes me spittin’ mad to think about it.

 

So, we headed home and pretty much wrote that whole experience off as a waste of time.

 

Time continued on and, of course, A. continued to attend preschool two days a week and received speech and OT.

 

It was November.  He would turn three in just two more months.

 

One afternoon, A., Sarah (our speech therapist), and I sat at the kitchen table, playing a letter game.  A. picked up one of the letter tiles and sounded out “buh”.  It was indeed the “B”.  Sarah and I were excited.  She tried a few more letters and he had a couple successes.  It was slow-going (and he didn’t get them all, certainly), but it was beautiful to hear my son’s voice, even in such a small way.  I was so very eager to tell my husband about it!

 

A couple mornings later, as I got breakfast ready, I could hear A. and Daddy in our bedroom.  My husband had drawn a picture of a duck on an index card.  Under it, in clear block letters, he had printed, “D U C K”.  As I walked into our room, I watched him point to each letter, one at a time, as A. watched very closely.  Our son sounded the letters out…

 

“Duh… uh… kkuh”

 

Duck.

 

His very first word.

 

My son learned his first word… by reading.

 

to be cont… (And I really will tell you about the neurologist next week- promise. )

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14 comments to “My Story…” Monday: A – He Talks

  • It sounds like you have a very smart little guy! I think that all people learn differently and excel at different things. My brother was always the one that did poorly in school – not because he couldn’t, but because he stressed too much and often just forgot answers when it came to testing. He is, however, one of the brightest people I know now. He is a fantastic artist and if you ask him anything about hockey, he can tell you just about anything! It takes the special person to lure it out of them and it seems that very often doctors just don’t “get it” from that stand point.

    • You are very right about different people being gifted in different ways and blessed with differing talents… and thank heavens for that! What a dull world this would be if we were all just carbon copies, eh? :)

  • Becki

    Wow! That doc was out of line- there are so many avenues that can be pursued rather than meds! Check with your school district to see if they offer ABA as part of their part B program.

    I am a developmental therapist for my state’s EI and am blown away! I love seeing kiddos when something “clicks.” A whole new world opens up and I am always so thankful for those moments to experience. I so cant wait to read more about your amazing boy! The hardest part is finding the trigger, but who would have guessed reading to talk!

    • So thankful for the work you do in early intervention, Becki! It makes such a difference for so very many children. Yes, that “clicking point” is such an amazing thing to witness, isn’t it? I can only imagine how frustrating it must have been for my little guy to have so much up in his head and not have the capability of getting it OUT. So, so happy that my two-year old started reading. ;)

  • I’ve been pretty quiet with my comments on this series, but I want to let you know that I’ve thoroughly enjoyed reading it. This is an amazing story and I can’t wait to hear the rest. It is a good reminder of some of the struggles that parents can go through when they need to FIGHT to get help for their kids. Way to go, mom! Way to fight for your boy!

    • Thanks so much for your encouraging words, Rebekah. It’s been a joy to tell A’s story, too. While C. was my miraculous preemie, my only son had a pretty remarkable journey too. Thanks for reading and coming along for the ride. :)

  • Marci

    Sometimes I feel like the journey we are given is not only for our own growth, but also to encourage others and help them know what to do in the face of similar circumstances. Even though I do not know you, A.’s story is encouraging. Also a great reminder to choose our doctor’s carefully and not simply take their opinion as correct. (Otherwise, my son would think he had Sturge Weber Syndrome…) I’m looking forward to hearing more about your journey and what the Lord has been teaching you.

    • Thanks for your comment, Marci. I’m truly enjoying reliving this journey through the story-telling and I’m realizing how different it is “from the other side”. Hopefully, my words might help someone who is just in the throes of it…

  • You know once you’re on the specialist track I think you encounter lots of these types that seem so out of touch with your specific child. I felt like some of them were really digging for problems and seeing things that were really nothing. But I always felt like they cared about what they were doing, my son and had good intentions, but were maybe over zealous. This doc you are talking about would have really made me mad too. Why on earth would you recommend drugs to treat…nothing. I wonder why she didn’t say we hope these drugs help with xyz and your son could really benefit from that?

  • [...] (You can catch up on A’s story right here: The Pregnancy, The Birth, The Infancy, The Quiet Toddler, Advocating, What He COULD Do, Just A Boy, The (Hard) Next Step, Making a Friend, The Autism Diagnosis, He Talks) [...]

  • [...] What He COULD Do, Just A Boy, The (Hard) Next Step, Making a Friend, The Autism Diagnosis, He Talks, Hyperlexia, Your Baby Can Read, Another Evaluation, A New Kind of Special Need, Linear Algebra, [...]

  • [...] What He COULD Do, Just A Boy, The (Hard) Next Step, Making a Friend, The Autism Diagnosis, He Talks, Hyperlexia, Your Baby Can Read, Another Evaluation, A New Kind of Special Need, Linear Algebra, [...]

  • [...] What He COULD Do, Just A Boy, The (Hard) Next Step, Making a Friend, The Autism Diagnosis, He Talks, Hyperlexia, Your Baby Can Read, Another Evaluation, A New Kind of Special Need, Linear Algebra, [...]

  • [...] What He COULD Do, Just A Boy, The (Hard) Next Step, Making a Friend, The Autism Diagnosis, He Talks, Hyperlexia, Your Baby Can Read, Another Evaluation, A New Kind of Special Need, Linear Algebra, [...]

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