Update

It's been such a long time since I've updated this blog. Jesse is doing remarkably well, given his diagnosis. He's now 6 years old and in Kindergarten. He's in a regular classroom with no extra assistance. I've been told he's a bit of a leader in his class. His energy and enthusiasm for learning is contagious. We've had two wonderful report cards thus far.

Due to my work schedule we haven't been able to fit in much in the way of extra-curricular type activities. We do have a family membership to the Y, and both kids are in swimming lessons. Jesse is quite the little fish, and is now swimming in the deep end of the pool. He's fearless. Which does tend to freak me out at times, but I know he's in good hands with his instructor.


Autism Services with Eastern Health closed his file about a year or so ago. We had been doing "direct home services" for a bit, but they deemed him no longer in need. He had his last speech therapy appointment about a year ago and haven't been back. We also haven't seen his developmental pediatrician in nearly 2 years. I'll be calling once Kindergarten is over to make an appointment.

So we just keep on keeping on.

If you're looking for family updates, please visit my other blog Here Comes Trouble.

Just awesome

I had to share this. It's an Open Letter to Parents Facing a Diagnosis of Down Syndrome written by an internet friend of mine, Lisa Morguess. (She blogs about her life on Adventures in Motherhood and Finnian's Journey.) I think that all parents of Special Needs kids can probably relate.

These kids will teach us more about ourselves and the world than we could ever dream was possible.

Sweet

Our little family went to the beach today for a fall photo session with my wonderfully talented cousin, Tracy. While there, Jesse saw a little girl, maybe about 14-16 months old, crouched down, crying. Obviously concerned, he went over to her, crouched down next to her and put his hand on her shoulder, checking to see if she was OK. She stopped crying, looked at Jesse, smiled, and said "Hi, baby!"

I love the effect my sweet boy has on people.

Slightly OT - "....as long as its healthy"

The following is a post from my private baby blog, which is currently available to friends and family by request. I thought it belonged here as well.

I don't know how many times I hear this or read this in the run of a month. Some expectant mother is asked, "Are you hoping for a girl or a boy?" And she invariably responds, "Oh, I don't care, as long as its healthy!" And I hate it. Once again, I'm sure to be accused of being overly sensitive. But really, would you love your child any less if it wasn't healthy? As someone who has a child with "special needs", who has seen more specialists and therapists than most senior citizens, I can absolutely say that such a child is a blessing in disguise. You come to appreciate those milestones and successes so much more than the parent of a normally developing child...because you don't take it for granted that walking/talking/playing/reading/whatever are just going to happen naturally. And it truly teaches you more about yourself and your capabilities as a parent than almost anything else possibly could.

So when I'm asked whether I'm hoping for a boy or a girl, I usually respond with something ridiculous like, "Oh, I don't care, as long as it doesn't have 2 heads." Gender does not matter to me. And whether or not the baby is healthy doesn't either. Quite honestly, I'd have another 10 just like Jesse if I thought that I could keep up with them!

Ch-ch-ch-changes!

We fired Jesse's home therapist this past week. While it really sucks, in a way, it was a huge relief in another. Since May, we've put up with multiple lates and sick days, coffee being continuously spilled on our carpets, schedule changes to accommodate her, and a decreasing level of patience on her part. The straw that broke the camels back, however, was her posting about Jesse (using his name even) on her Facebook page. (Not to mention that it was post DURING his therapy session that day.

So, we're going to try without therapy for a few months. We're going to do playdates and playgroups and biweekly speech therapy. We may enroll in toddler Mother Goose or some other more structured activities. Jesse's language has come so far these past few months that it's now within the normal range for a child his age. So we're going to focus more on play and socialization, which he's been really missing out on, in my opinion.

Other big news is that Jesse's is starting to seem ready for potty learning! In the past couple of days Jesse has requested to use the potty to pee and he pooped on the potty without any suggestion from me or his father. This is so exciting, because I would *love* for him to be out of diapers before the next kiddo arrives. Which is the other big change we're expecting. "Trouble" is due to arrive some time in March.

I guess that's all for now.

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.