Monday, July 23, 2007

July 22, 2007...and it continues

And it continues.

There have been slight improvements in Jakob's mood but overall, he's still pretty disagreeable. I feel badly for him. He can't help it, he's just out-of-sorts and he can't pull it all together. This is what they call regression and it happens from time to time. Sometimes we take 2 steps forward and one step back. This time it feels like it's 10 steps back. Squeal, yell, squeal, squeal, squeal...quite a party.

We're back to trying to find his "Happy Place". The good thing is since we've done this before, we know what it takes. First and foremost, a lot of patience. And since he can't yet tell us what's the matter or why he's upset, we just gotta watch closely. Gotta know when we can jump in and when we gotta go slow. Gotta remind him that anything can be fun. And we gotta listen to him. The listening piece is the most important and the hardest since he doesn't have words. Respect him and his space, always.

Each of us has our limitations...stuff we're just not good at, stuff that we just can't tolerate, stuff that's overwhelming to us and stuff that upsets us. Jakob simply has more limitations than the average bear and has never been able to express how he feels about anything. He's never been able to say "I don't want to" or "I don't like that" or "please don't do that". I can't even imagine what that would be like...extremely frustrating, I'm sure. And I don't blame him for getting upset...not one bit. If I was being pushed beyond my own limitations (which I am well aware of) and wasn't able to say how I was feeling, I'd squeal too (and probably kick, slap or punch...we're so lucky that Jakob doesn't do that).

The one really bright spot right now is the DynaVox. He's starting to figure it all out. He's used it to ask for cookies, take a bath and he seems to really like the button that says "I want Mom". Pretty funny. With help, I've done some programming so the buttons are for things that he'd likely want. The food section was easy. For breakfast, cookies and banana. For lunch, hotdog, cookie and grapes. For dinner, macaroni and cheese and cookies. And for snack, cookies and candy (which is actually fruit juice snacks that we call candy for short). He and I have sat for extended periods of time and spelled words out with the keyboard. We spell the word, hit the touch screen and it says the word...very cool. It's fun to watch him learn the keyboard...I can see the wheels turning and I know he's memorizing where all the letters are. I'm sure he'll be a professional typist in no time.

And then the fun will really begin...we'll find out what he's thinking, good and sometimes maybe not-so-good....we'll see...

Wednesday, July 18, 2007

July 18, 2007...the aftermath

The biggest issue I deal with when it's been awhile since I've written an entry is deciding what to write about. The reason I go long periods without an entry is there's just too darn much going on. Pick and choose...go with the funny stuff, the challenging stuff, the exhausting stuff, the times I wanna cry and scream, the times I just can't pull it all together or the moments of utter joy. Focus on the positive, I guess. But I don't like to do that too much...since there's more than just joy to the story. There's certainly tons of the other stuff.

We'll start with the facts. Jakob went to New York with his father for 8 days. From what I've been told, he did pretty well. It was pretty weird for me though. It was the longest I've ever been away from him and the first time I was home without him for more than a couple of days. A whole week. I was a little lost. I was like "Ok, it's Wednesday, I should be driving to Kid Camp, running errands, cooking macaroni, giving a bath and picking out the perfect getting-ready-for-bed movie" but there was no Jakob. I kept saying to Aunt Sandy "I don't know what to do"! So...I took some naps, watched a lot of Star Wars and cleaned my room. Cleaning my room was a several day adventure. It's actually livable now...kinda scary!

When Jakob returned home on Sunday, he was wiped out. Within 15 minutes of walking into the house, he was in my bed (in a clean room, at least). High fever and in pain. He'd sleep anywhere from 15 minutes to an hour, then wake up screaming. He was hurting, I didn't know why and there wasn't anything I could do to soothe him. The cry reminded me of when he was an infant and was constipated so that was my first guess...(or of course, like every mother, I feared appendicitis. My brain went straight to major surgery). It had been a couple of days since a BM so it made sense...what was causing the fever, I hadn't a clue. So we went to the doctor...a virus. Giving him a stool softener, Motrin for the fever and waiting it out were our instructions. So for the next 4 days, it was no eating or going potty, intermittent fevers, waking up crying and just generally acting tired and miserable. Poor little buddy. He missed pretty much all his summer classes which is double-tough since his sanity is so dependent on his schedule. It was a big bummer...especially considering I was on vacation...what a way to spend one of the two weeks I get per year. But I was glad I was able to be home with him and comfort him as much as he'd let me.

So here we are this week trying to get him back into the swing of things and it's been tough. Lots of squealing and I mean lots. The kind of squealing that pierces the ears and shoots down the spine...the worst kind of squealing there is. He's been disagreeable, argumentative and unwilling to do much that's asked of him. I understand and I feel so badly for him. He's frustrated and confused. If I didn't have the words to express what I was feeling, I'd probably squeal too. So we've taken a few steps back and we gotta start over. We've been at this squealing place before so we know how to fix it, I just hope we can fix it fast. He's already missed two full weeks of summer programming and this week has all been about fixing what's gone wrong...frustrating for me too. I'm sitting in the lobby right now at one of his summer camps and I can hear him squealing...poor therapists. All I can do is say "I'm sorry"...

Hopefully soon, Jakob's communication frustrations will be minimized...we have the DynaVox!!! It's a pretty amazing piece of technology and I don't think it's gonna take long for him to be a pro. I guess the best way to describe it is it's a small computer that talks for him. It's a touch screen and he touches the pictures or words that he wants to say and it says them. There are up to 40 pictures on one page and his ability to scan is amazing. I'll ask him to show me a word and he finds He and I have done a little playing with it and I've decided that he's a DynaVox Hog. He really doesn't let me play with it much...and he squeals when I try. He actually hit "Mom", "wait", "mine", "please" on it the other day. Pretty impressive, I especially liked the "please"...manners are very important. It's gonna take a little time but with the help of his Solid Gold Therapy Team, we'll get it down. Programming it will be a different story. I spent a couple hours at the hospital the other day and I should've taken notes. I'm not exactly a computer wiz but it's time I became one. At least now I have a really good reason to learn.

I'm very excited about my latest project...helping to bring WALK NOW for AUTISM with Autism Speaks to Cincinnati. We're forming committees, talking to venues and setting the date. Every time I think about it, I start to tear up (I'm still in that cry-at-everything-autism stage for some reason). There are so many passionate parents and service providers that I know that this WALK will be a huge success. The Autism community here is amazing and I can only imagine what we'll be able to accomplish as we all work together. That's the thing...all of us working together as one big cohesive strong loud voice ...(here I go again crying, better stop, I'm in public right now). More on Autism Speaks to come later when I can cry in private...go to to learn more about the organization.

The squealing in the back is really heating up...I better start preparing myself, it may be a long night...