Rocking the Boat

Summer school is right around the corner, and with summer school comes new decisions that need to be made which means another IEP (Individual Education Plan) for the Doodle.

At the last impromptu IEP they called in January, the one where they tried to get rid of our nurse, it was decided that we could keep our nurse through May 28th which is the end of the school year. This was agreed to based on the advice from our Doctor at UCSF in the form of a letter.

And now, we have an upcoming appointment with UCSF so I'm anxious to see what the Doctor says about this now. The last letter I have from the Doctor is that at the very minimum he should have a nurse through the end of the year and beyond. I know I'm going to have to bite the bullet and have the Doodle suffer through an agonizing 3 night video eeg with the toxic eeg glue...

So I received a phone call today from the Doodle's Shape Supervisor to ask me where I would like him to go to summer school?

Hmmmmm. Do I want to keep in the class he's in right now, the medically fragile class, and then move him into a regular special day class (for children on the spectrum, but they don't call it an autism class for some weird political reasons even though it most certainly and technically IS too). And then, if he does move to another class is that the class I would want him to be in next school year.

My thinking is if he's not going to get to have the nurse he loves as his one on one, I may as well move him into the special class he is going to be in next school year with a new Shape Assistant one on one. If I kept him in his comfort zone in the medically fragile class he's going to be used to having Nurse LuLu there and be looking for her and expecting her. And in that environment, I don't know that he'd give someone new a chance. He might just make the new person miserable. Or am I giving him too much credit? Will he even remember the nurse? The new Shape Assistant one on one he gets assigned is going to have some pretty big shoes to fill. It's not easy making a connection with an autistic child and this new person will be starting off from scratch...from riding the bus to understanding the seizure activity and everything else this little guy is packing in his bag of issues.

I've decided, if we lose our nurse, I will go ahead and move him to one of the other classes. Seems silly to keep him in a medically fragile classroom if they take his nurse from him which is supposed to mean he's no longer medically fragile right? But he still is. It only takes one breakthrough seizure or change in medicine to set him back and then we'd be starting all over, scrambling for another nurse.

Deciding which class is going to be hard because one of the choices is at his same school but just the class room next door that uses the same play ground. One of his Shape Assistants, Rachel, is in that class so he will have a familiar face. The other choice is at a different school altogether but is more communication and PECS driven. There he also has one of his Shape Aids, Betsy, so he'd have a familiar face there too.

As usual, I'm over-thinking things and losing sleep because of it. The Doodle doesn't do too well with change and transition and things are going so smoothly right now, I hate to rock the boat. Or, am I capsizing it?

The More Things Change, the More They Stay the Same

I feel like this has been one selfish weekend for me...I was Doodle free for a few hours on Saturday while my mom and I went to some garage sales and bought more crap that will probably end up at my next garage sale. Then my mom watched the kids so that Jim and I could go out for a much needed date night--kid free. We tried a new Mexican restaurant and went to see the John Travolta/Denzel Washington movie, Pelham 123 (pretty action packed movie!). And, then we had 6 hours at the lake today with Jimmy. We had a nice mostly relaxing day in the boat, getting some sun, having a picnic and I got to read 95 pages of my new Tori Spelling book, Moomywood. A real page-turner.

And Jimmy had a ball in the water and Jim lets him drive the boat. He's growing so fast and he's such a good little knee-boarder. Once he got going, he didn't want to stop but it was getting late and we tend to miss and over-worry about the Doodle.

Not to be Debbie-Downer but I can't help thinking how cool it would be if we could bring the Doodle with us. It's really unrealistic to think it's possible for him to be cooped up in the boat all day in the heat. He wouldn't be able to run around the boat without wearing his helmet and then he'd be even hotter with the helmet on and remember what I said about heat contributing to more seizures...and then the last time we brought him he made the day so stressful, he didn't want to wear his life jacket...he cried and cried...we swore we weren't going to bring him again...for a while anyway. If we can get the seizures under control, I would be much more likely to try it.

It's hard for me because Jimmy was such an easy baby. Our lives did not change at all. If anything, having a baby gave us more to do. We would drive 3-4 hours to go camping and boating. He was so adaptable. We took long car trips to places like Yosemite and the Mendocino Coast. I would go dirt bike riding with them in the motor home on the weekends and Jimmy was just something else I would have to pack along; kind of like he was our little baby-accessory. We attended weddings and parties and took him to restaurants, movies, theme parks, street fairs, county fairs, the mall.

Taking the Doodle to Costco is a big outing and undertaking. Taking him to his Occupational Therapy and Physical Therapy appointments is a lot. He's not easy to take places because he is not like most 3 year olds. He has no independence. He can't even walk on his own. We've regressed to the point when he was about 11 months old. It makes me sad that our family doesn't do the things that we used to love to do together. Even though, he doesn't know any differently, I feel like the Doodle is missing out on life being a little epileptic prisoner in his own home; trapped mostly in my room.

On a lighter note. Grammy watched the Doodle today and we set up the baby pool under an awning on the grass for him to play in. She said he liked it, but mostly just wanted to climb in and out of it (OCD).

I'm counting down the minutes until our UCSF appointment on Tuesday. I am hopeful that once the nice Pediatric Neurologist sees this little ball of cuteness and energy he will take us under his wing and with his doctorly expert new technology at his fingertips be able to quiet the Doodle's electrical storm firing seizures in his brain all day and night, every day.