March 8th, 2005

Weird week. A bit of a blur, to be honest. A lot of drama. When Jakob’s good, he’s great. When he’s bad, he’s awful. I’ve been floating somewhere in between.

My biggest challenge right now is the whole discipline thing. When it’s just Jakob and me, he’s really well-behaved. We don’t fight about the tv or fireplace, he’s in a great mood, we really “connect” and I can get him to do pretty much anything I want him to do. That’s not the case if anyone else is around. He turns into a little nightmare…trying to push people out of the room, turning off the tv, having fits. He’s a totally different child and I have no clue what to do. It’s so frustrating, especially since I know he has it in him to be soooo good. I’ll continue to take it one day at a time and do a lot of observing. Gotta watch him every minute in order to understand why he does what he does. I gotta say though, once I figure out “why”, life becomes a lot easier.

The basement is coming along. I really only have time to work down there on the weekends. I’m still hoping to have it done in the next 2 weeks. I’m anxious to start using the “exercise” room and the “classroom”. The toughest part of doing a big project like this is the anxiety over whether or not he’ll like it. So much work and thought goes into it and it still ends up being a crap shoot. I feel like my odds are pretty good on this one, I have a wonderful consultant (Jakob’s OT).

I’m having a moment…one of those moments when I feel helpless. I think about my son and how far we have to go. He’s come a long way but he’s still so far behind. It becomes more obvious every day. He had a haircut and the lady cut it too short…the curls are gone. It makes him look like a big boy, not my baby anymore. I don’t like it. And he’s getting so tall. It freaks me out. I get terrified for the future…too many unknowns. I hate it. How much potential does my son have? What’s our best case scenario??? No one can answer that for me. Everyone I ask says the same thing…”I wish I had a crystal ball…” Would someone please find me a crystal ball already??

Kenny and I are having a rough time too which doesn’t help. We’re just not getting along, tough time communicating. When so much of our free time is spent on trying to help Jakob, there’s not much time for us. It’s really rough right now but I’m trying to make it better. Always trying to make everything better and easier but just because I try doesn’t mean I’m successful. In fact, a lot of times I’m unsuccessful. Frustrating.

One thing I’m really looking forward to is Jakob’s Playgroup this Saturday. We’re doing it at ABC Pediatrics in Westchester and it’s open to kids with ASD and their parents. I’m hoping for a really good turn-out. It’s free but I do need parents to register on-line. The registration is under “Events and Appearances” on Jakob’s Journal home page. Please come…we’re gonna play and chat and bond. It will be lovely.

I’m going to take a few moments to “breathe”…I’ll post another entry later in the week, when I’m feeling a little more positive. The life I now live is such a rollercoaster and it’s minute-to-minute. It would be less exhausting if the ups and downs lasted longer…up for a day, down for a day. I so crave some sort of consistency and today I just feel like consistency will never happen. Funny thing is…probably sometime in the next hour I’ll be feeling great.

-Jenn