School work

Here's a worksheet Leo came home with last week. He's really doing well with his penmanship and writing his name. Also, I'm pretty impressed by the numbers. He did this himself, really. I'm sure he had some coaching by his teacher/O.T. but they make the kids do everything themselves. We don't call Leo's school "Down syndrome boot camp" for nothing.

I love the little face he drew at the bottom, where it asks "what do you like to share?"
But pretty cool, right? He drew a little person with ears and hair and everything.

Couldn't Ask For More Than That

I've written before about Leo's communication book, a little journal that lives in his backpack, that his teacher and therapists write in when something notable happens. Sometimes it's mundane, a request for more pants if Leo had a potty accident. Sometimes it's distressing: "Leo had a bad morning, he threw up after music and then didn't want to participate in circle time."

Mostly, it's positive: "Leo had a great speech session today, he was able to say "Santa" and "Tree" based on visual cues, without prompting."

But yesterday's note from Leo's teacher, that one was a keeper. It brought tears to my eyes (OK, it doesn't take much, but still).

We had been having a "conversation" about how Leo sometimes wakes up from nap crying and upset. His teacher wanted to know how we handle this at home. Well, back in the good old days when Leo actually napped at home, we would usually either leave him alone and let him have his little tantrum which he would usually snap out of, or we'd cheat and let him watch a little Elmo DVD as a distraction. I wrote to the teacher that I realized she probably couldn't do that.

Here's what she wrote back:

"Leo had a very good day as usual. As you know, we never have any behavior problems from Leo at school. It has only been in the last month and a half that we see the crying episode after he wakes up from nap and it's only for a couple of minutes. And even this is not every day. I think that he sometimes forgets that he has to act like this! (smiley face). Otherwise, he is always a pleasure. As you very well know that he is my bright star!"

Sniff.

Her "bright star"? Nope, I couldn't ask for more than that.

Nice (She Said, Sarcastically)

I received a call from the principal at Leo’s school this morning. Evidently he was escorted off the bus by the bus aide (she works for the bus company, not the school), without his shoes and socks on. Did I mention it was 33 degrees this morning in New Jersey?

Leo has this thing about taking off his shoes and socks in the car. It’s mind-numblingly annoying but hey. It’s one of his little quirks. I live with it. There are some mornings when I think I miss my bus because I am fishing around in the back of our van for a missing Stride Rite sneaker. Actually, what he loves to do is throw his shoes. He’s narrowly missed me a few times. And he’s got particularly good aim with the socks.

But back to this morning. Escorted him off the bus barefoot! How hard would it be to put the shoes and socks back on? The principal was irate. She suggested I call his service coordinator (done). She returned my call right away and said she’d ask the principal to submit a report in writing and that she would take it up with the bus company. Of course, paperwork.

I just hate the idea of people not thinking Leo is “worth it.” Not bothering to put his shoes back on. He doesn’t know any better, people. He’s four. He needs help. I mean really.

Out of Touch

I haven’t been writing much lately and I don’t know why. Actually I think I do know why. There just seems to be so much going on that I can’t find a single thread to boil down into a post. I know that shouldn’t stop me. I should just write lots of small entries. I don’t know, I just feel overwhelmed and when I feel that way I don’t write and then it just snowballs into silence.

So, a few updates.

-After a lot of hand wringing and analysis, we’ve decided to go ahead with the sedated ear procedure tomorrow. I sincerely appreciate all the comments in response to my question. I’m beyond nervous about it (think of us tomorrow at 6:45 a.m. EST if you’re up) but the pre-op nurse assured me it would be a quick procedure. It’s just been a while since we’ve had to do anything like this and it’s just, well, it’s always hard. Leo’s been having ear issues since he was tiny and he’s become downright traumatized when it comes to anyone touching his ears. As much as I am not a fan of general anesthesia it would be nice to not do anything to contribute to his terror of All Things Ear. Also, he squirms and carries on so much during ear exams that it’s not out of the question that some actual damage could be done. And, how great would it be if, while under anesthesia the doctor could really get in there and clean and get rid of the fluid and do whatever it takes to help our guy hear better? Come on, language!

-Leo’s parent-teacher conference was last Wednesday. It went well. He is meeting and exceeding all of his goals and he is on track to “graduate” to the next grade (primary) in the fall. He’ll go from being with three and four year olds to a class of kids that ranges from five to nine! That should be a pretty big change for him. We also discussed our goal (mine and Erin’s) of having Leo begin kindergarten at age six in district, most likely with a one-to-one aide. No one looked at me like I had three heads when I brought it up so hopefully it’s an actual possibility for the 2010-2011 school year.

Leo’s teacher described him as being like a “sponge,” that he loves to learn and that she has had to be quite creative with his goals because he is mastering them so quickly. So I can’t complain about that. I even wondered if maybe he might be getting a little bored in this class? But he’s not ready to move up yet (he actually can’t since he’s not five) so we’ll just hope that he can continue to get what he can out of this class and really master the skills he needs to move up. We also talked about Leo’s behavior (he is mostly very well behaved at school and has only recently started exhibiting some problems with transitions, throwing tantrums when he doesn’t want to do something) and we all agreed that it is directly related to his frustration with language. Since that continues to be his greatest delay, I asked for and got an additional private speech session. Who knows if throwing more therapy his way will help, but I’m pretty sure it won’t hurt. And it’s somehow satisfying to get additional services.

-I haven’t talked about potty training for a while because A) I know that it’s pretty boring to anyone but the parent doing the potty training and B) I didn’t want to jinx it. Let’s just say that Leo is consistently performing. He still does not tell us when he has to go but apparently that is a long way off. So for now the onus is on us to get off our butts and take him every two hours like we’re supposed to. Easier said than done! Never thought I’d say it but diapers are almost easier.

-The attacks against Ellie seem to have mellowed slightly. This may be in part because Ellie has developed a high pitched shriek that I liken to something you might see on a National Geographic special, when a smaller animal is at risk of being attacked by a larger one that smaller one might emit this decibel to frighten the attacker away. Mostly, Leo laughs when Ellie does this. But it also stops him directly in his tracks. Of course there was this morning when a sweet pat turned into a hug which then turned into a full on, push Ellie backwards so that she lands on her head. Oh well. Baby steps.

-This might be the most boring post ever, but I feel at least slightly up to date now.

Notes from Leo’s Teacher

One of the things I love about the school Leo attends is that they are very good about communicating with parents about what the children are doing, how they are doing and just general updates. When your kid can’t tell you himself this kind of information is invaluable. I know I’m a big sap but sometimes the notes from his teacher Ms. S make me well up. They are just so cute. And the thought of Leo having this whole separate world, these relationships with his teachers and therapists and friends, well I just think it’s wonderful. On the whole, Leo is doing very well at school; we’re very fortunate that he is for the most part quite healthy (knock on wood!) and he seems to genuinely enjoy school and learning. It’s not all peaches and cream of course—there have certainly been notes about Leo not feeling well and not cooperating (melting into a puddle as he likes to do sometimes when he doesn't feel like cooperating). But generally, he is, as his teacher says a “good student.”

Here’s a sampling of some recent comments from Ms. S:

After a school field trip to the Turtle Back Zoo:
Leo did great at the zoo. He was very cooperative. He was on his feet most of the time. Leo was very interested in all the animals. He said "hi" and "bye" to almost each and every animal.

In response to a note that I wrote about how Leo is beginning to make observations about the world around him:
We are all very proud of Leo. It is great to see that he now likes to show what he knows. He does not hold back and is not shy anymore (most of the time).

On reading:
Leo is progressing very nicely. We just started working on learning letters for Leo's last name. He’s also doing well with reading sight words.

On communicating:
Leo is making nice progress in speech. Today when it started raining, Leo tapped on my shoulder and said "raining" and pointed outside. Also Leo now loves to drink water. Does he drink at home too?