Friday, July 10, 2009

Long post from the deepest corners of the mind....

...this has been a long week. Not a bad week, exactly, just very long. Having Daniel out of the house doing his activities (camps, specifically) has been really helpful. He's been active and coming home a good kind of tired. He won't nap -- it just goes against his own desires, even though a nap would do him a world of good. But he's doing activities that are age appropriate in a safe location and I don't have the stress of having to watch him as well as his siblings. As a parent, that sounds like a horrible thing to say, but it's made him happier because he's been with his peers, something that Daniel thrives on. I only wish I could say the same about the other two.

On Tuesday, we had our pre-program visit for the Hanen course I had mentioned in an earlier post. This session included some video taping of some daily type activities as well as discussions to determine what their "stages of communication" really are. There were several checklists to go through (for each child) and then a review exactly what makes up each of the "stages of communication". Together, with the facilitator, we determined that Rachel is between the first and second stage ("Own Agenda" stage and "Requester" stage) -- Simon is closer to the first stage. This knowledge will help throughout the course, to set reasonable goals for each of them as well as for myself. After all, it isn't fair of anyone to expect them to accomplish things for children further along this path. If we did have those expectations, we'd just get them and ourselves frustrated, which accomplishes nothing. And, as always, we're hoping to see them move into the next stage before the end of the course in a few months.

It's funny -- I don't know how much of this is related to the start of this Hanen class or if I've just become more observant, but I've been watching how the two of them interact (or fail to would be more accurate) with others lately. Rachel initially appears to want to be with others, me specifically. But when put into a situation, she will run in (making sure I follow if it's what I'm supposed to do) and will just do things on her own, like in her gym class. She won't play or interact with the other children, but will sometimes be affectionate towards other parents (mothers specifically) -- and she knows and likes her teacher, but will not show her any affection. She appears to be interested in playing with her older brother, but only if the play causes Daniel to get upset (i.e. taking a toy and running with it). She seems to take pleasure from his reactions -- but I don't think she really wants to make him "upset" -- she just wants the reaction.

Simon, on the other hand, wants to be left alone. He immediately looks for toys or situations where he is by himself and seems to recognize his need to "stim" on a toy. When he is at that point, he positions himself so that his back is to anyone else and he can truly focus on the toy and his repetitive behavior, almost like he thinks that noone can see what he is doing. This is very much what I think of when I think "autism".

Additionally, the twins returned to school this week (Tuesday and Thursday [Wednesdays will start next week]). When we arrived at school, both of them were happy and excited to be back. They went right into the classroom and all seemed to be going well. However, about I'd say 20 minutes into the class, the wheels started to come off and Rachel just went into one of her determined moods. She started to scream and became incapable of doing anything that was being requested/demanded of her. Before the end of the class, a couple of additional teachers were pulled in to help. I was standing in the adjoining room watching this all happen through the 1-way mirror -- and I have no idea what set her off and saw how hard everyone was working to reel her back in. But it just wasn't going to happen. I actually had to walk away from the window after a while and found myself looking into the other classroom (I could still hear Rachel, but at least I didn't have to watch). Their teachers ended up cutting things short (they were only there for about an hour [session is technically 2 hours, but we've never gone longer than 1.5]) because they weren't able to accomplish anything and she was just getting more and more upset (Simon was also becoming agitated). This is an advantage of them being in a class by themselves, something that won't last for much longer.

Thursday's session was much better -- I won't say it was perfect, but things definitely weren't quite as hard to watch. They took the 2 of them to an inflatable pool they had set up and they had SO much fun playing in the water. I only wish bathtime would go as smoothly as the water play did! There were some issues when they were brought back into the classroom -- I'm not sure how much was just the transition vs. they just didn't want to leave the pool. But they were able to stay for the 1.5 hours they had previously worked up to, so I considered the session a success.

As you can see, Rachel is the one that's been causing everyone the most trouble. Looking at them, Simon is the one who you would immediatly presume was autistic. He flaps; he had the sudden outbursts (both gleeful and stressful); and he very intentionally isolates himself. Rachel appears to be more outgoing (at least with me), seeking my approval, but she is far more inflexible and unable to adapt to new situations. That's why we are looking into CSAAC's help by providing the intense in-home 1-on-1 ABA. But this still scares me to death.

There really is no other fallback plan if this doesn't work. So, that's probably the root of my fears right now -- what do we do if this is unsuccessful? But since I can't bring myself to fully deal with this possibility, I'm finding myself stressing out about the timing -- each session will be 2 hours and, as the case with most children, morning is the most efficient time for something like this. But we only have 1.5 hour blocks of available time once school begins in September. So, we have to look into doing this sometimes in the morning, sometimes in the afternoon. I put together a schedule of what works best for us and forwarded it to CSAAC -- we'll find out if this will work for them as well. But, if it does, that forces me to deal with my biggest worry and fear. Worrying about the timing is just much easier.

So, there is my ramblings for the week. I know it's a bit long-winded, and maybe I shouldn't have written this when I'm as tired as I feel right now, but maybe putting this down will help me sleep this weekend. Next week looks to be a good week (a bit nuts, but a good week) if things manage to go according to plan. One can hope.....

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