Tick tock tick tock

It felt so great to call our developmental pediatrician last week and CANCEL our next visit. Without a reschedule. If you recall from a few months ago I have been pretty peeved with the treatment we get from her & her front office staff. I love, love, love her physician's assistant, but can no longer stay with her just because of him. So I finally began listening to my gut and following my promise to be a better advocate for Dylan. My first step was to cancel our appointment and get a new dev pediatrician. I had a very long discussion with our primary pediatrician and he was super supportive of this decision and going to begin the process for a new referral. I even supplied him with a list of 7 or 8 doctors and therapists who have been referred to me by friends. Apparently most of my list wasn't really appropriate for Dylan's needs. And the one who was - and was very highly recommended - has a 1 1/2 to 2 year wait. Seriously? How can a doctor have a waiting list that long? Can any parent even consider waiting that long to have their child seen? I'd go absolutely insane. Honestly ... you'd need to get your child on the list before you even conceived just at the chance there might be a need.

So ... now I question if I did the right thing by canceling our appt with our other dev pediatrician. It sure felt good at the time, but did I do it at the detriment of Dylan? It seems like we should still be seeing her while waiting for a new referral, but she's just pushed me so far that I don't know if I can even stomach a visit with her. What to do? Any advice?

This parenting thing is so freaking hard. You never know if you're doing the right thing. And when you think you are - and it feels good - it seems to bite you in the hiney!

My head is spinning ...

I've calmed down a bit since my posts last week. Thankfully. I think I was a little stressed out and amped up last week so that made everything feel even crazier. Anyway, I'll do my best to get right to the point - but as you all know, and Bryan will tell you, getting straight to the point and stripping out all the little details isn't my strong suit!

So, we've decided to completely change our plans for Dylan's school next year. We were planning private preschool followed by pre-K then kindergarten. That plan would put him at 6-7 years old for kindergarten. We had that plan for a host of reasons, but primarily to give him more time to develop his speech. However, things didn't feel completely right to me ... and at the urging of our trusted & loved speech therapist, Amanda, we talked to Leaps & Bounds about alternatives. [Leaps & Bounds is the special education preschool Dylan attended last year & the ones who manage his IEP.] They agreed with Amanda that Dylan should enter the public pre-school program next year. So here's our new plan - as of today:

• Dylan will attend the public preschool in Brunswick


• He will be enrolled in a co-teaching class where he will have a regular pre-K teacher and a special ed pre-K teacher


• D will receive speech services AT school


• He will have access to additional special education services for his more general delays (if you recall he was categorized as significantly developmentally delayed last year when he was evaluated by Leaps & Bounds)

I feel good about this. It's different than I'd planned and will require me taking him to Brunswick daily - which is a drag - but it's for the best so that's what we do. They do have pre-K classes offered at the elementary schools here on the island, but a) they are filled early through a lottery of island residents and b) they do not have all the special ed & co-teaching services offered by the campus in Brunswick.

ALSO ... I had a conversation with Nancy Kaufman yesterday. She's THE speech apraxia guru who runs the clinic in Michigan. She thinks Dylan sounds like an ideal candidate for 2 of her programs this summer. I will be sending her a DVD of Dylan's speech sessions this week for review (assuming I can get it the final edit done). The two programs she's considering are:

• An 8-week program, Words & Wiggles, which will require us relocating to Michigan for the summer. The thought seems daunting and I have no clue how I'll pull it off, but we're strongly considering it. The program seems like it was designed specifically for Dylan!


• A 3-week program, SPEAK, will seems perfect for Dylan as well, but is all full this summer.

So ... once they evaluate the DVD we'll make a decision about how to proceed. Possibly one of these programs for this summer, or next summer, or work with them to develop a personalized, intensive family program for us this summer.

LOTS going on. My mind has been racing. I have been sick for the last 3 or 4 days so I'm not thinking clearly. Bryan is traveling. Not a good combo!

Beyond that we're doing OK. Implemented a new behavior management chart and am very hopeful that this will help minimize some of the tantrums we're having. I think Dylan feels bad for me since I've been so sick so he's been SO sweet the last few days. Letting me correct his words and even trying to repeat the corrected way. I'll take it ... even if it is just for sympathy :)

Am I the only planning freak?

I don't think I'm even half as much of a freak about planning as I once was. Believe it or not ... I've mellowed with age. Sure I was always able to be a little bit spontaneous, but not too much. But since the hubby is anti-planning I guess I've begun to stop battling.

Even with that admission I still can't believe what's happened this week and assume other parents must be semi-planners like myself.

I've been DYING for some sort of conference, seminar, group therapy session, anything related to CAS to be available to us. Everything I find at apraxia-kids.org and kidspeech.com have seemed to be local support groups or local seminars. (Those two organizations seem to be the go-to resources for CAS, but if anyone has any others please let me know). This week I finally get an announcement about the 2010 National Conference on Childhood Apraxia of Speech and it's smack dab in the middle of the only vacation we've planned this summer (with two other families ... so it's non-movable). And then today I see a message on facebook from kidspeech.com, THE Nancy Kaufman Center, about a camp they have going on from June 28 - August 20. This camp seems PERFECT for Dylan. Of course it would mean us relocating to Michigan for the summer which doesn't sound like fun, but could be manageable with a little planning. But since I'm finding out on April 27 it doesn't seem possible for me to make it happen. I feel like they must have known about both of these events more than 2-3 months before they happen ... don't you think? Why weren't they announced sooner? Placed on their websites sooner?

We're a family who is willing to do whatever is necessary to help Dylan and I'm feeling so frustrated this week that doors keep being shut. Isn't some window supposed to open somewhere?

Vent fest

I know it's been a couple of months since I've written ... I apologize for the silence! We've been knee deep in normal life stuff, lots of therapy, lots of doctors appointments and a vacation. I will post later this week with a full update on where we stand with our progress, but this is just a post so I can bitch and let off a little steam.

You all know how much I love Dylan. Adore might be a better word. I think he's fan-freaking-tastic. He's so sweet and kind-hearted, yet a little mischief mixed in gives him that impish grin. I love, love, love all those things about him.

What drives me crazy is his stubbornness. Yes, I'm sure all of my family is giggling at this because they know exactly where he gets it from! However, it's really beginning
" to impede our ability to "help" him at home. I think this would be the case with or without CAS. He's so stubborn that he doesn't want any help. With anything. I'm sure much of this is general 4 year-old stuff; however, where Dylan needs the most help at this point in his life is with his talking. And this is an area where I've got many, many skills! (And so does Bryan - especially after 2 rum and cokes!) However, Dylan thinks every time we correct him we're beginning a 30 minute therapy session so he immediately shuts down.

Example from dinner tonight: Dylan, naturally, didn't want to eat what was served. From the grill - salmon burgers and a special burger for him, grilled mushrooms (at his request) and clementines. Should be the kid's dream meal, right? So, while attempting to convince him to just try the food I decided to help him properly say hamburger. He says something like "dadwoowa". We know what this means because the kids generally loves hamburgers, but it's taken us a long time to identify the word. I said it properly and very slowly, asked him to repeat it after me. He said "No mommy, I not do dat. I done now." And that was it. Multiply that times 300 and that's a typical day at our house. He speaks. It's garbled. Since I'm very proficient at speaking Dylan I usually understand it. I repeat it properly to him. Nine times out of 10 he says "No. I done."

How in the hell am I supposed to teach this kid how to speak when he won't work with me? He's been in therapy for almost 3 years now. He TOTALLY knows what it's like when he's "working" versus just playing or being normal. And he only wants to work when he's with a therapist or when he actually feels like it. Which I think is for about 5 minutes per week.

He does great in a therapy setting, but we all know that's not normal life. So, to me, it seems like the moment he walks out of therapy he falls right back into step with where he was before. I do my best to model properly for him, but if he won't repeat it and won't try then I feel like I'm failing.

Anyone have any suggestions for situations like this? I'm all ears.

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!

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.