Boiling Point

I can't remember if I've written about this before or not, but I'm writing about it now.

We're having issues with Jesse's home therapist.

Since we hired her, she's been either late or sick nearly once a week. And sometimes twice a week! I've actually been pretty understanding, I think, in regard to bus schedules and whatnot. I understand if the bus is running a few minutes behind. That doesn't bother me. What bothers me is that she sleeps in or misses her bus FREQUENTLY. And she's sick a LOT, and often it's because she "couldn't sleep last night." I've already talked with her about it. Actually it was an email, since I thought it would be good to be able to proof read what I wanted to say, have it be objective, and then get a reply from her, and have a record of it all. It went well, I thought, with me suggesting starting therapy an hour later in the morning, and running an hour later. This would, I had hoped, put an end to the issues with "sleeping in" and "missing the bus."

No such luck.

Today she called about half an hour before start time and said she'd missed the bus, and it would be another hour before the next bus, so she'd be an hour late. Well, start time is 9 am, she'd get here at 10 am, and the senior therapist, who's only here once a week to review Jesse's programs, gets here at 9:30 on Monday mornings. This is just not acceptable.

If it were me, I would have called a damn cab and gotten to work on time. There is no way in hell that being an hour late for work on anything other than a once-in-a-blue-moon basis would be acceptable in any other job. I'm sure she doesn't do this at her retail job. I can't imagine her still being employed there if that were the case.

I'm so pissed off. Why can't people take this job seriously? I hear of this issue with home therapists from other parents a fair bit. And I think it's ridiculous! What's even worse is that she's SO good with Jesse and he loves her to pieces. I know he's going to really miss her if we let her go.

***sigh***

I'm just so frustrated.

Wow, it's been a while!!!

I've been a very bad blogger this summer! I guess I just have so much to blog about that it keeps building up and building up and I need such a huge chunk of time to do it all that I keep putting it off....you know how it goes. I live by the Procratinator's Creed: Never do today what you can put off until tomorrow.

Anyhow, there are a few things I want to post about, including Jesse's 6 month follow-up with Dr. C (developmental pediatrician). But right now I'm posting about Jesse's speech therapy.

We FINALLY, after FIFTEEN MONTHS of waiting, got Jesse in to see the SLP, Kim, that works with the development program at the Janeway. It was a good appointment in all...and it lasted for about an hour and forty-five minutes, which was kind of surprising to me. I figured it would be an hour at the most.

At first the way she spoke to Jesse was very exaggerated and simple, but after about a half hour she seemed to get the fact that there's nothing wrong with his receptive language. (I did also tell her that his private SLP had just tested his receptive language a few weeks ago and found it to be perfectly normal.) She played with him a lot to get a grasp of what he was capable of, and she spoke with Jesse's home therapist quite a bit too. She wanted to know what programs he was currently doing and how he was doing with them.

Overall, she thinks he's doing really well. He's rapidly gaining language. Right now she wants us to work more on verbs, which we've been doing anyways (and are coming along!). She thinks speech sounds should take a back seat to more general language development. I don't think I really agree with this though, since he's rapidly gaining language fairly naturally as it is now. She had some suggestions for his therapy, too, which was great. She's very familiar with ABA therapy and so can make suggestions for programs to work on. And we're planning a home visit for later this month.

My one big concern though is that she generally only sees her patients once every 2 months. I'm not liking this, since he's been going weekly and it's obviously working. But Kim said that she generally works in more of a consultative role with the whole therapy team. I think that could be partly true, but I'm also pretty certain it's in large part due to lack of resources. So, we've made the decision to keep up our sessions, on a biweekly basis, with Jesse's private speech therapist.

Hopefully tomorrow I'll get a chance to update on Jesse's appointment with Dr. C.

Receptive Language

At last Monday's speech therapy appointment the SLP tested Jesse's receptive language. What she expected to take 2-3 sessions took all of 20 minutes. His attending was awesome! And it turns out that Jesse is right on target! He scored 50th percentile for 2 - 2 1/2 year olds. I'd always thought that his understanding was pretty normal, and now we know it is.

New look

I've changed up the layout and look of the blog. What once was dark and scary is no longer so. I figured I'd change the look of this blog to reflect the fact that there is so much happiness and hope in our lives right now. Jesse's made so much progress in the past few months that it's becoming increasingly difficult to tell him apart from "normal" kids. We're constantly smiling and laughing at stuff he comes up with. I wish that all of you out there who haven't met Jesse in person could, just so you could understand how awesome this kid is.

Looking forward

Last night at our parents support group the topic of Kindergarten came up. A couple of the parents that were there have kids heading to kindergarten either this year or next. Autism services are reduced for kids when they start kindergarten, and then stopped altogether for kids as they head into grade one. It's a big deal. But honestly, it's not even on my radar screen right now. I said as much and the other parents tried to impress upon me just how close it actually is. It actually *is* still 3 years away, and to tell the truth, I'm not even sure we're going to send Jesse to public school. I'm of the mind right now that home schooling is definitely an option.

But beyond that, I don't see Jesse still having a diagnosis by the time he's five. (No, I didn't mention this to the other parents at the support group.) I may sound like I'm in denial or have my head burried in the sand, but the fact is, some children diagnosed with ASD at a young age eventually move off the spectrum. Jesse's developmental pediatrician has suggested that she thinks this will be the case with Jesse. And with the gains he is making in speech and communication, I'm very hopeful this will be the case.

I've always said that optimism was over-rated, but my views on that might be starting to change. And truly, it's difficult not to be optimistic about Jesse's development. The kid is blowing us away every day.

Racing for Autism

Targa Newfoundland takes place in September of each year. For the last 3 years, the Halleran family from Paradise has entered a team, which they've called Racing for Autism. (Here is their website and here is their Facebook fan page.) They started the team after their daughter was diagnosed with autism. To raise awareness for Autism Spectrum Disorders, they place puzzle piece stickers all over their racing cars. These puzzle pieces that hold the names of children around the world who have been diagnosed with autism. This year, Jesse's name is on the car. And so is his picture. I cannot wait to see the car in person later this year.

For your viewing pleasure...

This picture shows Jesse's puzzle piece (the pink one at the bottom)

And here's his sweet face. 

Many, many thanks to Ray and Julie Halleran for all that they do to raise awareness for all children on the spectrum.

A lesson in futility

Prior to being seen by a developmental pediatrician when there's a significant speech delay and/or other developmental issues, a child should have their hearing tested. This is pretty much a standard thing. Our family doc only suggested this AFTER she heard of Jesse's PDD-NOS diagnosis. So she fills out the referral, we leave the office, and we wait to hear from Audiology. The call never came. I call our doctor's office, and the office staff tell me that they were never passed a referral to send. (See why I want to find a new family doctor for Jesse?) So we head back to the doc a couple months ago, and she refers Jesse to ENT because we can get in to audiology faster that way. (This time I personally handed the referral letter to the secretary.)

We had our ENT appointment yesterday. The ENT looked in Jesse's ears, and didn't see anything troubling. He then sent us straight over to audiology. The first machine they tested Jesse with tested his middle ears. No problems there. The second machine they tested him with tested his inner ears. No problems there either. Then she sends us to this booth where I have to play with Jesse with some Play-Doh and the audiologist in the adjoining room (she could see us through a window) played some sounds at different frequencies and every time Jesse turned to the sound a toy would light up and I'd have to reinforce him. She was really pleased with how well he did, both in terms of learning what he was expected to do, and with the results of the test. No problems with his ears. The audiologist then sent us back to the ENT, and he told me that Jesse had no hearing issues whatsoever.

Which I already knew.