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!