And the day has arrived ...

Well, we got our first DynaMyte Aumentative Communication Device today. It's one that a family donated to the school system for other families (like us!) to try out. It's an older model with no user manual (and no online manual, really??), but it'll give us a way to determine if this is something Dylan can benefit from. These tools are VERY expensive (like $8,000 - $10,000) so we're really lucky that we get to try before we buy!

There are lots of other alternatives (sprial bound notebooks with pictures, sign language, etc) if this doesn't work, but we're starting at the top. You know how we are :)

I'll have it for the next week and will post updates here as to how we're progressing. Wish us luck!

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!