Thursday, June 28, 2007

June 27, 2007

Eventful, very eventful.

Jakob's summer schedule is in full swing and he's loving it. He's going to 2 different camps and having a ball. We're doing ABA at home, speech, OT, PT, piano, swimming , music therapy and extended school year. Like I said...eventful. The scary part is we're still not even close to the recommended 40 hours per week. I'd love to get him 40 hours but it's so hard. All I know is the more therapy he gets, the better he does. Structure and activity are everything to him. He's like me...if left to his own devices for too long, he gets ansy and irritable.

The DynaVox (communication device) will be here soon. I'm so excited. He's trying so hard to talk. He's pretty much trying to say everything we ask him to say. It's so cute and sweet. He's able to make a few sounds that are understandable...he's getting there. At least I can tell that he knows exactly what he wants to say, he just can't get the words out. And since he's reading and writing, he should just go to town on the DynaVox. I can't wait!! I'm so anxious to hear what he's thinking...even if he decides to get on my case a little bit. The other good thing we're noticing is he's using a lot of inflection. It's most noticable to me when he's singing and he's singing a lot...his favorite right now is "I'm Proud to be a Cow" from one of his Sesame Street videos. It's so cute, it cracks me up. He was singing it loud and proud right before falling asleep last night...hysterical.

He's doing so much writing and reading and it's becoming so apparent that he's aware of what's going on around him. He follows directions, he answers questions, he asks for what he wants. He has all of us scrambling to figure out what to do with him next.

We've decided to get him back to the DAN doctor, it's time. Of course we can't get an appointment until September but that's ok. We can start all the supplements back up when he goes back to school. One thing I've definitely learned is someone other than me has a better chance of getting him to eat or drink something new. He's quite the booger when it comes to any kind of dietary change. He's still extremely dogs, cookies and macaroni and cheese with an occasional banana or grape. That's it. Oh yeah, and fruit juice snacks. And I thought I was particular about what I put in my mouth...

One other thing I really wanna do is get Jakob an Autism service dog. The more I read about them, the more I want him to have one. Some of the stories about kids and their dogs are amazing. Animals and kids just go together and can create a bond like no other. Plus, it would be nice to have an extra set of eyes on the kid...especially when he's trying to go for a walk all by himself. I'm filling out the application.

It's so awesome how far Jakob has come. I know we still have a long way to go but he's got it in him. It's hard to believe he's the same kid that I was living with 2 years ago...the kid who never reponded to his name, didn't follow any simple instructions, didn't want to be held, didn't want to do anything other than watch the same videos over and over. He's so connected now and genuinely enjoys people...well, people who know what to do with him. I've discovered that he's a great judge of people...if Jakob doesn't take to a person, I probably won't either. He's my people-screener and it saves us both a lot of time.

Jakob's not the only one who has become a totally different person in the past couple of years, I have too. So many things about me have changed and it goes beyond having a different perspective. Yeah, I see the world in a new light because of Jakob and yeah, some things that used to really matter to me don't anymore. But I think somewhere along the line, while I was trying to get inside his world to just look around a little, I ended up moving into his world with him.

For example...I used to spend 5 nights a week in nightclubs...sometimes elbow to elbow, music blaring, people yelling and I loved it. I felt right at home. Now, I just can't take it. Crowds of people and lots of noise send me into a panic attack...heart pounding, can't breathe, just wanna run, gotta get out of there. And whenever that happens, all I can think about is how Jakob used to feel every second of every day. No wonder he cried and screamed and tried to run...I get it.

Another thing I can't take is too many things going on all at the same time. I cannot cook his macaroni, talk on the phone, do a load of laundry and check my e-mail all at the same time. It's too much. I get frazzled and inevitably mess up at least one of the things. I can't tell you how many loads of laundry have sat in the washing machine for 3 days before I remember it's even there. Focusing is an issue. And I get frustrated when I can't do it all and just want to be left alone. I see Jakob go thru that regularly. If he's had a long day, he just wants to do his thing and not be bothered with anybody or anything. I get that...unfortunately, rarely do I get the peace that I so desire. There's always something I have to do whether I want to or not...the price I pay for being a grown-up.

I've also taken a few steps backwards in the social skills department. I used to be able to carry on a conversation with anyone, anywhere. And depending on the day, I still can but on those "off" days, it's better for me to stay at home. I really don't know how to describe it other than sometimes I just really feel awkward and out of place...I can't "connect". It becomes another one of those "get out as fast as I can" kind of situations. I may say something really stupid or ask a dumb question or just completely space out. Don't know why it happens, it just does. I'm most succeptible to it when I'm tired and I've been tired a lot lately. I hope this is just a temporary thing and it'll stop soon.

It's just's as if my inner Autism is coming out. In the end, it helps me understand Jakob at a deeper level so it's a good thing. I figure if I can come up with a way to pull myself out of these weird funks, then I can help pull Jakob out of his. It's a learning experience for everybody. And learning is fun...that's what Mom and Dad always said...