Bedside manner? What's that?

We're dealing with one of the most unprofessional medical offices I have ever seen. It's almost comical. In fact, I just laughed and said "whatever" as I was hanging up the phone with Dr. Greenberg's office. She's Dylan's developmental pediatrician. Sure, I know she deals with very challenged kids and it probably benefits her to have a very quirky personality; however, THIS IS MY CHILD we're talking about. Not some chart or number. That's how she treats me - rushes me out of the office, quick to downplay my questions, etc.

As you know, she suspects that Dylan has some form of ADD or ADHD. I don't know for certain that he does, but I'm not surprised she's leaning in this direction. So we'll go along with the evaluation and the testing. However, that was 3+ weeks ago and I have not been able to get through to her office since. Haven't received any return phone calls. Nada.

Called again this morning, after re-explaining my situation the woman said she'd check Dylan's file to see if they had all the forms returned (from D's teachers). She came back to the phone and said "nope" and began to hang up. And that was it. No explanation, nothing. It was simply rude. And I know this isn't true because Dylan's speech therapist has spoken to their office and they confirmed receiving 2 of the 3 pages of the fax.

I realize I'm venting, but to me this is a big deal. I know my child doesn't have some of the difficulties of other children, but they're still significant to me. Stop downplaying the diagnosis of ADD/ADHD on a 4 year old child and show your patients and their parents some respect. End of story.

Holy Curve Ball

Miraculously we had an appointment with our develomental pediatrician, Dr. Greenberg, last week. It was really strange ... I knew we needed to see her given all of my recent worries & revelations, but had no idea when our next appointment was since it wasn't on my calendar. I called her office on Wednesday afternoon to ask and discovered our appt was scheduled for Thursday at 10am! Coincidence? hrm...

Anyway, we had a LONG visit with Dr. Scott (her PA). He's wonderful. Filled me up with information about H1N1, foot development (another story for another post), his views on speech apraxia and, are you ready for this, ADD. Yep, those dreaded three little letters. His instinct is that Dylan's issues are more about ADD than about apraxia. Not sure how I felt about that so he gave me a questionnaire to fill out while I waited for Dr. Greenberg. 15 minutes later we're in her office. She, always in a hurry, took one look at my form and said "Yep, textbook ADD. We'll get him on some medication and he'll be noticably better in days". She wants to have his teachers and therapists complete forms, too, to make sure they're in-line with my responses. And that was it. She'll see us in 3 months.

Huh? OK, first of all I totally failed at my new role of being a good advocate for Dylan. She makes me so nervous that I didn't have a chance to ask too many questions. I was irritated with myself the moment I got in the car. I drove 2 hours one way for someone to give a quick assessment of Dylan and not allow me to ask questions? ARGH! I'm sure ADD has been in the back of their minds for quite some time - it's been in mine - but this was the first real discussion about it.

Anyway, most of the info I got was from Dr. Scott. They're belief is that while Dylan may have some apraxia his real issue is not being able to focus long enough to learn how to speak. I guess there is some validity to that argument, but they are not SLPs and have not been on this speech journey with us so I feel like their diagnosis is a bit premature.

Then I had lunch with Amanda - our first SLP - on Friday. It was meant to be a social lunch, but I'd had so much on my mind that I couldn't help but mention this to her. She sees a bit of validity with Dr. Greenberg's point of view, but Amanda STRONGLY believes that Dylan is apraxic. In fact, she's agreed to begin working with us again (once she can fit us into her hectic client load and 3 children schedule!). And she's agreed to help train us with our new Dynamo device (I think that's the name. We're getting a loaner from the school system to try out...).

So, more confusion for me. Lots of learning about ADD, medications, natural treatments, speech augmentative devices, etc. More updates soon. Off to speech therapy with Miss Burdell now!

The realization ...

You’ll be hearing more and more from me about this over the coming weeks (and months. And probably years), but I wanted to share an update on Dylan with you. I’m crying as I type this so please bear with me. It’s certainly been a very trying week.

It’s become very clear to Bryan and me that Dylan’s speech issues are not getting better. Yes, he’s talking more. Yes, he’s getting bigger. And yes, he’s totally freaking cute! However, his speech is mostly unintelligible. We’ve been in denial, I think. When he was first diagnosed with a speech delay we were concerned, but not alarmed. When he tested borderline on the CARS autism assessment we were a bit more alarmed. We said to ourselves “even though Dylan hasn’t been labeled as ‘special needs’ we’re going to treat the situation that way. We’re going to work diligently to make sure he gets everything he needs to be successful in life”. Then he seemed to get a bit better. Then he was diagnosed with Childhood Apraxia of Speech. That seemed scary. Our speech therapist didn’t have a ton of experience with it – come to find out not many people in our entire community have much experience with it. There are no definitive outcomes of this disability – some children recover and have totally normal speech, some always have an accent and some never speak clearly. But that was OK with us – we’ll fight through it and give Dylan every advantage we can.

Then we had the difficult realization that he needed to go to a “Developmental Preschool”. Ugh, that was a jagged pill to swallow. But he seemed to do well at the school and they recommended he re-enter “normal” preschool fulltime. And we thought “huh, we’re kicking this developmental issue’s ass”. And we went on our merry way with a slightly crazy toddler and a needy baby. And we somehow forgot our promise to remain diligent and fight for Dylan. Sure we remember that he has apraxia. And we do our therapy, see our developmental pediatrician, practice good speaking habits at home. However, we haven’t been FIGHTING.

Recently we’ve had a couple of social issues that set off the alarm bells for me. What’s going on with Dylan? Why is he not getting invited to parties? Why is he playing by himself? Why is he not friends with Travis anymore? And it donned on me … it’s the speech issue. So, we’ve recommitted to our promise.

I’ve talked with his speech therapist and his special education teacher (who sees him at his preschool once per week). They’ve noticed an increase in the unintelligibility, too. Part of this is good – he’s learning more words and increasing his vocabulary. However, this makes him unintelligible about 60% of the time. So, we’re embarking on some new therapies and a TON of research. More signing. An augmentative speaking device (a little computer that we’ll be able to program and he can push buttons to form sentences and the computer speaks for him), and possibly some alternative medicine therapies.

Pray for us. Pray for Dylan. Or whatever sort of spiritual, good energy thing you do. We need our family and friends to rally around and support us as. I feel I have a new mission in my life and that’s to learn as much about this disorder as I can to not only help Dylan, but help other families going through this situation.

I want to leave you with some good news – Dylan DOES HAVE AVERAGE INTELLIGENCE! That was confirmed during some testing in December. That was an enormous relief for us. There’s no reason he won’t be able to go to college and get a PhD. He may have trouble speaking, but he doesn’t have trouble learning or problem solving! Whew!

What is Childhood Apraxia of Speech?

This is a truly challenging disorder to understand, but I found this fantastic definition. It will take a few minutes to read through, but please do. It will help you understand the true essence of Dylan's disability.

Definition courtesy of the CASANA site Apraxia - KIDS: Every Child Deserves A Voice.

Childhood Apraxia of Speech is a motor speech disorder. For reasons not yet fully understood, children with apraxia of speech have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech. Apraxia of speech is sometimes called verbal apraxia, developmental apraxia of speech, or verbal dyspraxia. No matter what name is used, the most important concept is the root word "praxis." Praxis means planned movement. To some degree or another, a child with the diagnosis of apraxia of speech has difficulty programming and planning speech movements. Apraxia of speech is a specific speech disorder.

The act of speech begins with an intention to communicate. Next, an idea forms, outlining what the speaker wants to say. The words for the desired message are put in the correct order, using the correct grammar. Each of the words are comprised of a specific sequence of sounds (also called phonemes)and syllables that must be ordered together. All of this information is translated from an idea and information about order of sounds into a series of highly coordinated motor movements of the lips, tongue, jaw, and soft palate.

The brain must tell the muscles of these “articulators” the exact order and timing of movements so that the words in the message are properly articulated. Finally, the muscles must work properly with enough strength and muscle tone to perform the movements needed for speech.

In typically developing speech, children make word attempts and get feedback from others and from their own internal systems regarding how “well” the words they produced matched the ones that they wanted to produce. Children use this information the next time they attempt the words and essentially are able to “learn from experience.” Usually once syllables and words are spoken repeatedly, the speech motor act becomes automatic. Speech motor plans and programs are stored in the brain and can be accessed effortlessly when they are needed. Children with apraxia of speech have difficulty in this aspect of speech. It is believed that children with CAS may not be able to form or access speech motor plans and programs or that these plans and programs are faulty for some reason.