Like a lot of children on the spectrum, the Monster has his sensory issues. We’ve had problems with the fact that he’s sometimes sensory seeking, but there’s a lot of problems that have been creeping in where he’s sensory adverse. The biggest problem has been dealing with mechanized fans of all kinds. He dislikes his ceiling fan running, and can’t stand blowers of any kind in restrooms. (It’s why I often comment on where one can find bathrooms without blowers when we’re out and about.)
But another spot that’s been giving us trouble – getting him a haircut has been… hairy. Continue reading
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