Saturday, October 27, 2012

This is why I hate going out...

So yesterday (or I guess it would be 2 days ago...hello 1am) we had Michael's IEP at the new school. It actually went just fine and in fact, I was told when they re-evaluated his speech and language, he came out slightly ABOVE AVERAGE in speech! He still has some communication and social language deficits, but his overall language is doing great! So to celebrate, we went over to Chick-fil-A to eat and then play in the play place. Well, it had been snowing so everyone and their kids decided that was the place to be. Michael has a hard time when things are chaotic with kids like that. He was sitting in one of the tube things and barking at this kid and yelling at him to go away. The kid's mom came in to check on him and he was like "that kid is being mean to me" and the mom saw him sitting in the tube barking and screaming. She left her kid and went back to her table. As someone else opened the door to the playplace (which I was sitting in), I heard her say with much attitude "Oh my gosh, there is this little boy in there that is doing xyz" and had this NASTY face on her like she couldn't believe that such an asshole child was allowed to be in the same space as her perfect child. I couldn't help it and I just snapped! I went out there and I said "Just so you know, I know you are talking about my son and I don't appreciate it! He is acting like that because he has autism and he has a hard time with social situations". Then she says to me "Oh, I was wondering if you were his mom or not". A few minutes later she came and tried to apologize but failed miserably by saying "It's good you are in here if he has autism". What the hell is that supposed to mean anyway? I just wanted to get the heck out of there before I went out and punched her in the face. Or at least dumped her drink on her head. Ugh!

Wednesday, October 24, 2012

Ritual meltdowns

Phew...just thinking about his meltdowns over his rituals gives me anxiety. It really is hard to explain to people who aren't living it what rituals and routines actually look like. It's a very OCD-like behavior (which I wonder if he also does have OCD). Basically the way I think of it, is he has a play going on in his head. When he is approached with a situation, he plays it out in his head in that split second how it will all turn out in the end. When it doesn't go as planned, the world is very scary for him so he screams until we can "reset" the situation and start over. You can imagine how frustrating this can be when combined with communication delay. Kids with autism use routines/rituals to make them feel safe in a world that makes little sense to them. For Michael, he is very literal and so things have to go in XYZ pattern every time. If you switch it up to be YXZ or XAZ for example, he doesn't understand what is happening and ends up in a fight or flight mode - aka meltdown.

Here's a couple videos I took of his meltdowns from the past couple of days.

This first one, I asked Rory to get the bucket down from the shelf. Rory wasn't listening to me so I went and did it. But in Michael's head, Rory was supposed to get it down. So it greatly upset him that I went and did it. Then I opened up one of the meat sticks and in his head I wasn't supposed to do that yet. So I had to pretend I put it back in the wrapper. You can see that as soon as I "reset" the situation, a switch went off on him and he was calm. It's pretty crazy to see that happen.

This one just happened last night. I was making some dinner and he wanted to help. He tried to push his chair over to the stove so that he could help me. However, on the way the chair got stuck. This wasn't supposed to happen. The more you interfere, the more "off" from the original scenario it is in his head and the more upset he gets. I had tried to help him by moving  stool that the chair was getting caught on. He was very upset and telling me that "It's the wrong spot, it needs to go in the right spot" This went on for almost 30 minutes until he made me move the stool back, get the chair stuck again, and he restarted the scenario. By that time, he was able to recreate a scenario where I do move the stool for him. I was then able to move the stool and he pushed his chair through the hole. Once he got to the stove, it started to get caught on the rug and the issue started all over again!

My oh my

I've surely let this blog go! Well, a lot has happened since I last posted. First of all, we moved to a new state! Michael did AMAZING with this. Prior to moving, a gutter had fallen off our house and Michael kept saying "We have a broken house. We need to get a new one." So I worked that to my advantage. James had to go to Utah 2 months before I ended up following, so I told Michael that daddy was getting us a new house. Michael took that as daddy is building a new house. He even got so excited for the moving truck that I had to make a calendar so he didn't think the truck was showing up every second. :) He loved the drive over in the moving truck with daddy and Kobun.

Getting school started here has been less than a stellar experience. First, both schools (his old and the new) were giving me wrong information on how to get his records transferred. I had to wait until the last second to get him registered because it was summertime and I guess they don't take into account that kids may move in the summer. Things got straightened out at the last second and he was able to start school on the first day with everyone else! I was really happy about that.

I'm STILL waiting to properly meet his teacher and care team. We had an IEP scheduled for the very last second before it was out of compliance and then Michael decided to start throwing up on the day we were supposed to have it. So I had to cancel and reschedule. I wanted to anyway, because the OT thought it would be appropriate to do his IEP goals by phone, even though I've never met her at all. So now his IEP is now officially out of compliance. It's scheduled for tomorrow so I guess we shall see how that goes.

Behaviorally I don't know if he's been more challenging or if I'm just getting worn out due to being home with him all day (after school and on Fridays). His routines and rituals are really getting out of hand some days. All I can really say is that I'm beyond exhausted.