I know a lot of parents of children with ASD who have issues with their kids sleeping.
Now, I’ve frequently mentioned how the Monster is awful about sleeping when it comes to going away. Our suspicion is that he’s just wired to get up at some point in the middle of the night – the fact that no one shares a room with him lets him do whatever, and he gets himself back into bed after that for some more sleep. (When we’re in a hotel room, it’s absolutely awful because nothing we can do – melatonin, Benadryl, nothing – keeps him out for the entire night.)
One of the best pieces of advice I give to parents new to the world of being a “special needs parent” is a question I was asked the first time I attended the Dads Talk group at the Arc Baltimore:
What do you do for fun, for yourself?
It’s not so easy, when we’re in this boat. We feel a need to keep track of our kids, and our days are filled with trips to therapy, with dealing with our children’s foibles. And while we might say that we do things “for ourselves”, that often includes running to the gym at a weird hour, early morning walks, or the occasional date night when you get respite or find a sitter who can deal with your kiddo.
But that’s not really what I’m talking about. Because while I love going out with my wife – to the theater, to the movies, or other things around – it’s not necessarily “for me”. And that’s where, as parents, we fail ourselves. Continue reading
Like many children with Autism, the Monster has difficulties with playing with other children.
The problem isn’t necessarily a matter of his want to play with other kids – it’s his ability to communicate the want to do it and then to sustain the interactions. He’s had a social goal in this past year’s IEP of play with other children, but most of the time, this has required adult interaction to keep him involved in a game of any sort. Continue reading
As we’re preparing for an IEP meeting at some point in the near future, the thing that keeps jumping out at us is the need for an environment where they can intensively work on his communication skills.
Now, it’s never been a secret that the Monster has issues with communication – R, his younger brother by four years, speaks in nearly complete sentences on a regular basis, while the Monster speaks in fixed snippets most of the time. He can read letters, and he can make out some sight words, but he’s hardly “reading”, and he’s not really speaking on anything approaching an appropriate age-level. And half the time… it’s a guessing game. Continue reading
I’ve been keeping a low profile while juggling work and the Monster’s spring break, to be honest.
School vacations are always hard. It’s not just that the Monster has a disruption to his regular schedule, but that there’s a problem with finding something for him to be doing to keep him either from falling into bad habits, or the danger that with me having to work – even with my ability to work from home at times – that we’ll not pay enough attention and he’ll regress even more than he has during this year, not just academically but socially.
Today’s the annual “World Autism Awareness Day” as part of Autism Awareness Month. As all of us parents of children with Autism know, there’s really no such thing as ‘just’ a month dedicated to it, since we’re aware of it all the time, but… let’s be honest. “Light It Up Blue” tends to draw folks’ attention.
And every year, it turns into this whole pissing contest online about whether you support Autism Speaks or are against them. How folks who have Autism (and are active in their own advocacy) feel versus how parents/caregivers of people with Autism feel, and this and that and this and that… who has a right to feel how about the matter…
Frankly, to me, it’s all a fairly stupid argument. Continue reading
We’ve reached a minor milestone, we think.
Yes, it feels weird to actually post this online, but… we think the Monster’s fully daytime toilet trained. Continue reading
Somewhere along the way, I heard someone tell me that an IEP (an “individualized education plan” for anyone new to special-needs speak) should be written so that it could be “implemented by Martians” – that someone who had not ever met the child in question could pick up the document, read through it and, assuming they can read English, implement the goals and required supports.
The Monster has had an IEP for three school years now, and the current IEP expired about a week or so ago. So it’s time, as you can imagine, for us to review and update the IEP for the 2015-2016 school year.
A short while back, Autism with a Side of Fries asked a question, regarding things you’ve found that work well with our kids and whether or not you share them out. I was upfront with responding that I don’t ever hold back on any places that I find work well or accommodate my Monster nicely. I remember what it was like – and I’m constantly reminded when I find some place new – to not know of anything that lets us have something that’s a semblance of a normal life…
And on the flip side, there’s when I boggle at how folks don’t seem to know of some of the resources that exist.
It’s frustrating, sometimes, seeing the things that the Monster can’t do, compared to other children his own age.
Granted, it’s not like he’s fully non-verbal, or that he’s entirely incapable of doing things for himself. I do count our blessings on that regard, because it could always be much worse. (Though, for the record, “it could be much worse” is a horrible, self-defeating outlook on life.) Continue reading