Lovely Boy

Alex is doing great! He's developed a fondness for painting... watercolors with his in-home-er's and walls with me. He watched me painting one of the bedrooms, and decided to help. He did a pretty good job. And just from watching me that once, he figured out how to open paint cans. So, he also painted the floor and himself... Lovely Boy!

He's been really having some seperation issues when I leave him. I hate it, but everyone is pretty excited about it, because he's showing preference, and what normally happens at a much younger age, is happening now. It's development. We're also hearing a lot more sounds, and his in-home staff are expressing amazement at his memory for numbers and letters. I'm very pleased. He just gets more amazing every day.

Time for sleep.

"Hi!"

Alex had a great weekend visiting with Freaks and Freaklets. He said "Hi" to me once this weekend, and greeted one of his therapist, and said it again to me today. Lovely boy! He did well overall with all of the noise and broken schedules of being away. He managed to consume a bit of casein, the only effect I'm noticing is a manic laugh (which could easily be attributed to overtiredness) that has been going on the last couple of days. Interesting. Many people commented on changes they've noticed. I'm looking forward to trivia, to see if they notice any more changes. It's hard to remember when he couldn't do the things he does now.

I'm hoping to get Alex together with more of the Freaklets more often. He ignores other kids for the most part right now, since he has no real way of communicating with them. He does somewhat better with adults.

I know Alex has come a long way. I want so much more for him, and yet, I feel like he's given so much already.

Lovely boy.

In-Home part 2

We've had a couple of visits from Alex's lead therapist. She thinks he's adorable and cuddly, so I like her. *grin*

How the deal is going to work is that Alex has 35 hours a week of in-home therapy. Drive time is included in that, as well as collateral time, so at least to begin with, he'll only really have about 24 hours of face to face time. For right now, that is plenty. As the program goes on, collateral time will grow less, and if he seems to need more time, they'll work on reducing drive time. We're planning on having them visit with Alex at his dad's house every other weekend too. Alex tends to give Brad more vocalizations, so I'm looking forward to them seeing how Brad and Alex interact. His lead therapist was pretty impressed with his non-verbal requests, which he is good at.

He'll have 2 lead therapists, with another, more experienced lead therapist overseeing them. And he'll have 3 or 4 line therapists. That's a lot of people tramping through the house, but I'm sure Alex will do well with it.

The therapists work in 2 hour shifts, which is great, because I think 2 hours is just about the maximum that someone can keep up with Alex without becoming distracted.

More later.

In Home

We've got the schedule for Alex's in-home therapy. It doesn't look like it will be all that invasive. I'm looking forward to it. We set the schedule yesterday, and we start today.

Yippee!!

Feeling Ooogy

What is worse than having an autistic child? Having an autistic child with the flu.

I know that there are a lot worse things out there, but yeesh. Alex's dad got stuck with him for the worst part of his flu, but he's been off schedule and cranky this whole week. It's hard sticking to the gf/cf diet too when he's sick. All the comforting things I want to give him aren't on the diet. And if they could make a soup that didn't have gluten in it, that would be nice. Not that they are all gluten-y, or even that it's that hard to make my own soup, but I was sick too. I didn't really want to cook. No crackers, and the bread we had didn't toast well. Poor Alex.

That was me being whine-y. I'm done now.

On the up side, we should be starting Alex's in-home shortly. The 28th is the date of beginning. I reminded my mother that it would be starting. She doesn't really listen to me, so the several conversations that we've already had about this can not be taken into account.

Me: So, those people are going to start coming here soon to teach Alex.
Her: When?
Me: The 28th.
Her: They're coming for an hour?
Me: No, they're coming 35 hours a week.
Her: Just for an hour or 2?
Me: No, they're coming 35 hours a week.
Her: For a week?
Me: 3 years
Her: What? For a couple of months?
Me: 3 years
Her: What?

We've had this conversation before. I think she's just comprehending what she wants to. I keep telling her that it will make her life a lot easier, since she won't have to be chasing after Alex all day when I'm at work. But she's a bit nervous about having someone there all the time. I am too, but I'm looking forward to it too.

I probably won't post until after the 28th. I've got a lot to do, with Christmas and getting the house tidied up.

Ugh.

Eeek! It's been months!

It's been pretty crazy. But oddly sane. Alex is progressing! Very well. Here is the news in a nutshell. Working backward.

We had Alex's semi-annual evaluations. He showed amazing progress in them. One of the evaluators (Speech), stated that she would have been surprised to see his amount of progress in a year, much less the 7 months it's been since she saw him. Alex used the words, mama, da, up, bye and had great non-verbal communication through the whole session. She also thought that he may be hyperlexic. Which is interesting. I learned to read when I was around 3, and Alex is showing signs of early reading ability, which is pretty amazing since he doesn't know what words mean. It isn't traditional reading, but an affinity to letters, and a difficulty with spoken language. Another one of the therapists said that some kids like Alex will stay at a couple of spoken words for a long time, then be speaking in whole sentences within a month. Here's hoping!

We also came across a DAN! doctor in our neighborhood. And when I say our neighborhood, I mean 5 minutes away! He's very interesting, and has an autistic son of his own. So, we've finally embraced the gf/cf diet in a full-fledged way. Haven't started using any supplements yet, but that is the next step. It is always hard to say what causes improvement, which is the biggest difficulty with kids like Alex. Did he just develop on his own lately? Or did the diet help? I'm not ready to take him off of the diet to compare yet, but I'm already seeing some signs of improvement, increased involvement with others, more (and different) vocalizations, more invitations to inclusion by him. I've also taught him how to *high5*, which he has managed to extrapolate into *doublehigh5*, and into *shakehands*. (Some times I feel like I'm talking about training a dog, then I feel guilty.)

Alex is finally off of the waiting list for the waiver. He'll start intensive in-home on Dec. 28th. Merry Christmas! We'll be working with Beyond Boundaries. We met with them for an evaluation in October, and I like what they have to say. They are speech intensive, and focus on getting kids to inclusion in society. Alex is definitely ready for the help, and I'm hoping for positive experiences. The evaluators had varying things to say. One praised Beyond Boundaries, and said Alex was just at the right age to start. Another thought he should have started sooner, and didn't know much about them specifically, but warned us in general to keep a close eye on our line workers and the goals they are setting. Which is reasonable advice.

We've also moved, back to Mom and Dad's, as of Sept. 1. We've settled in admirably, though it's been a bit difficult establishing boundaries. Alex is attending Early Childhood at the elementary school where I went when I was young. I like his new teacher, and the rest of his staff, and luckily we have the same O.T. (Occupational Therapist) as we did at his last school. It is really nice to have someone who worked with Alex last year working with him this year, especially for comparisons.

More has happened, but that's the nutshell. Like I said, things are going well, but busy, busy, busy.

In My Never Ending Quest For MORE!

I've been reading again. Autism again. I go through gluttonous Autism research for a couple of weeks, then fast, and try to absorb.

One of the books I picked up, I can't even read because the author is too extreme, in a psychotic over-involved parent way. One of the other books I picked up was recommended to me, by a woman I know. Her son was diagnosis with autism, and after reading the book, and taking their guidance, her son is not autistic. Not to say that there wasn't a mis-diagnosis to begin with, but the book is hitting all the right triggers with me. The author is also extreme, but in a philosophic, academic way. What kills me is that the book was written in the '70's. And their experience when they took their son to docs is pretty much what mine was. A lot of conflicting comments, and no solid advice. The only real exception was that institutionalization was mentioned to them, and they don't mention that any more. I heard the exact same comments about a condition that is affecting all of the kids, and they haven't hardly progressed since 1976. That's 30 years.

But, like I said, the author is very philosophical. He talks a lot about accepting what is. Not saying there is no hope, but allowing yourself to enjoy your child, and to be happy, even when it seems callous to not be unhappy. This is something that has been bothering me for the last year or so. I, by nature and by choice, am a genuinely happy person. With all of the things that are going on in my life, I sometimes think that people think I don't care about the issues that surround me. I do, deeply. But I love Alex. I love hanging out with him, and he cracks me up. We laugh a lot. It's when I'm nervous about what other people are going to say or think about his behavior that he acts out more. Or it seems that way to me sometimes. When we take him to a non-fast-food restaurant, and I'm worried that he'll jump the booth and start yanking on another dinner's hair. Or when I take him to a family function, and I'm worried that someone will take Alex's behavior as a comment on my parenting. Because of course those comments don't just get murmured and forgotten, they get passed around, and someone winds up with hurt feelings. I think I am going to wean myself off of worrying about that aspect of Alex's life. Time is too short, and I really do enjoy being with him. I think in a way, I've been selfish, worrying about what people might think of me. I need to worry about what Alex thinks about.

Best quote out of this book so far, "For us the question: could we kiss the ground that others had cursed?" - Son Rise, by Barry Kaufman.