The Monster’s not really the adventurous eating type, and I know I’ve commented on that at various points on the blog. He was, of course, when he was a baby – like most babies, he ate just about anything you put in front of him – but as his Autism really came into force, his dietary habits have somewhat slimmed down.
One thing I’m still getting used to is how they can keep narrowing, even after that initial onset. Continue reading
The Monster, being in a regular public school, gets the same rewards and treatment as the other children that attend his school, even if he’s not aware of what those things are.
We got a notice today that, as part of being in this regular school and having perfect attendance for the prior quarter, that he’s getting a reward of being able to see a movie later this week. They’re showing Wreck It Ralph for the younger kids (pre-K to 4), and a separate film for the bigger kids, with a note sent home for us to sign if we don’t want him to see it. Continue reading
When you have a child with Autism, and then have additional children, paranoia becomes part of the game.
I don’t know if there’s really any other way to describe it to parents who have only neuro-typical children: the constant surveillance of all of your other children’s behaviors, looking for that one indicator that you have another child on the spectrum and that you should be getting intervention pronto. Continue reading
I hear a lot about how children with Autism “play” with toys.
Now, when I read about other kids – and indeed, when I watch the Monster with his toys – a lot of play involves making the wheels spin, or the like. It’s not what the toy was perhaps meant for, but it’s what entertains or fascinates them. Continue reading
The Monster’s in his second week now of additional therapy that we’re paying for, above and beyond what the school is giving him, since we’re not getting what we really want from the schools (more individual care) and we don’t think he’s getting enough.
So on Tuesdays, after school, the Monster comes home on the bus and is shuttled immediately off for another 30-45 minutes of combined SLP and OT at another provider. Continue reading
With the school year drawing towards its conclusion, we’re starting our planning for next year.
The IEP’s essentially been agreed to for the moment – the one that we handled two months back for ESY placement (see my post The Non Event) – but the one thing that’s still in the air is where the Monster’s going to go to school in August. That decision was going to be deferred until later this spring. Continue reading
Most of the time, the Monster’s actually fairly good about sensory sensitivity.
We’ve taken him to bull riding, the ren-faire, ball games… nothing really phases him when it comes to most sounds. On the other hand, lately, he’s been showing increasing sensitivity to a certain set of sounds – fans. Continue reading
Tomorrow is my every-so-often date with jumping up on the bimah to do my thing. My “thing”, in this case, is playing gabbai sheni (the “second” gabbai, the person who corrects the Torah reader, as opposed to gabbai rishon who calls out the honors and coaches the folks through what they ought to be doing). For the first time in a long time, I’m flying solo with the kids for the whole day tomorrow, as the wife’s going to a local Autism conference, my in-laws are out of town, and my folks are just a bit too far away to cover.
I should mention that this is with the caveat that the Monster’s actually being dropped off at “Parents’ Day Out” before I head to shul.
Yes, I’ve mentioned that our congregation has a quiet room, which is a Wonderful Thing. I’d rarely get to synagogue at all without it, and as it is, I spend much of the services at High HolyDays in there rather than in my much-more-comfortable seat in the sanctuary, if only because the Monster’s not… calm enough to stay out there for long periods of time. (And, granted, much of the congregation knows us and about the Monster having Autism. If they don’t know us… they’re kind of oblivious, between everything our family does there.) But I can’t leave both kids alone in there while I’m on the bimah – that’s just not fair to anyone (and it’s a violation of the quiet room rules, to boot). Nor can I really manage both children while I’m supposed to be on the bimah. The wife had an offer from a friend to have her daughter watch the baby while I’m up there, and so it’ll be a quick run in the morning to drop off the Monster, then over to shul, then back to pick him up and head home once my little duty is done.
And I feel awful about it.
To me, going to synagogue is supposed to be about both religion and family. (As I wait for folks who knew me in my pre-marriage days to chime in with the fact that I used to go every week by myself just fine without the latter… and yes, I used to go a lot more. It is more complicated when you have kids.) And I feel like something of a failure for not only having to admit that I can’t really go to shul alone with the kids if I’m going to be on the bimah, much less feeling that I can’t handle both kids in a religious space without help. Even if that last bit isn’t quite true – I could handle them just fine, as long as I’m resigned to sitting in the quiet room – it’s still an impression I’m working on.
Just a lot of ‘ifs’ in my head about going to synagogue in general with the Monster. If I could figure out how to explain to him that he needs to be quiet (without food bribes). If I could explain in a way he’d understand about how beautiful the religion is, how meaningful it can be. If I could teach him to read Hebrew so he could daven along with everyone else. And of course, these are all really more ‘if I could right this moment’ – I have confidence he’ll learn it all eventually…
I know God knows what I’m feeling, why I feel that way, and forgives me for my feeling like a failure. I wish I was so understanding.
For those who don’t know, my wife does read my postings every day to see what I’ve said. While we were on our evening walk last night, we briefly discussed what I’d written yesterday and her impressions on it. (It’s a good self-check for when I also have a different impression than she.)
And while we were discussing the matter, something very prescient was said. She had, earlier the day, run to the bank and made a deposit of some large bills (from doing focus groups at a nearby company) and a check we’d received for our anniversary, and her thoughts on it were: Continue reading
Since the school system seems disinclined to provide the Monster with all of the care that we think he needs, we’ve decided to take the “logical” step and get him some outside therapy. Yesterday was his first trip to a local private provider for supplemental occupational and speech therapy.
As I’ve mentioned before – the school provides him with three speech therapy appointments a week and one OT. However, the OT was recently reduced from 45 minutes to 30 (though from a push-in to a pull-out appointment) and the speech is two pull-out small group, one push-in per week. And we think he needs more individual attention than that. Continue reading