Saturday, August 30, 2008


I don't know if anyone had the chance to read my post that existed for about 9 hours last week concerning Matt's adventure into school, but if not, here it is in a nutshell.
This is his first year in high school. He will have one lifeskills class with with Kyle. The rest of his classes are in resource rooms. A schedule has been made to make sure that teachers are sending him to the restroom. They've had a day and a half of school, and he seems to be ok with far.

The Incredible Journey

My little girl is starting her new journey. John brought her to school hour and fifteen minutes away. I went today to "hang out" with her for a while. It's so strange not knowing what she is doing right now. Her bedroom looks lonely when I pass by it. My eyes are swollen. How did time go by so fast?? I remember so clearly....straining to keep my eyes open to look at her after she was born....22 months old....her sneaking out of her bed and trying to quietly walk down the hall....we would say, "I wonder if Chelsey is still in bed,".....we would loudly get off the couch.....we would then hear her little feet run down the hall, and then she would leap into bed, cover up, and close her eyes and pretend she was asleep.....our walks to the beach.....her reaction when we were driving home from the hospital with Kyle after he was born--"It's moving"......countless memories. She's a big girl now--that didn't take very long...not long enough.

Wednesday, August 20, 2008

The New School Year...Yuck

I went to the school today to register the kids. I'll start with the good stuff, which was the last table we went to. Officer Wes was there handing out a variety of informational things....including info on autism! How cool is that! We are fortunate to have an informed police department due to the fact that one of the officers has two boys with autism. He recognized me as a parent with a child with autism; I'm not exactly sure how he knows. It could be because of the bus accident Kyle was in last year (his bus was rear-ended at a railroad crossing). Kyle wasn't too fond of the whole event! From what the bus driver and aide told me, he was quite upset. When I got there, he and the other boy that was on the bus were in the back of an ambulance all strapped in! They were actually waiting for me, because they knew I was on my way to get Kyle. It was school policy; although the accident was minor, he had to go to the hospital unless a parent was there to say otherwise. I did bring him....just to be sure!
ANYWAY, Officer Wes gave me stickers for the car window from the Autism Society. They say: IN CASE OF EMERGENCY OCCUPANT WITH AUTISM MAY: *RUN AWAY *NOT RESPOND *RESIST HELP. It would be nice if those stickers said "Fragile X" instead of "Autism," but then I guess they wouldn't do much good! He also gave me pamphlets to fill out (to keep in the car) that give more specific medical info, AND, two info sheets for me to fill out about the boys to give to the police department. Good job, Police Department!
After that, I don't feel like talking about the rest of the registration...later...


I'm starting my new teaching job next week. The issue? Childcare. Unbelievably, there is no childcare in this town of 16,000+ for children with special needs. Unreal. First Steps provides in-home therapy at a cost, but there is NO group type therapy---none. My child has nobody to emulate. In the county next to us, they have a childcare place where there are children with and without special needs, but that's 40 minutes away--not an option.
I have a good example from THIS MORNING of why he needs to be around other children. We went to the playground, and there were only two other kids there with their grandpa. Evan did his new usual routine; he went up the ramp and sat on the platform that connects the wobbly bridge, a slide, a tunnel, and the bars that one can go across. He likes to sit there and watch kids run around him. Today, a soon to be 1st-grader girl who recognized me from school came over to talk to us. Evan laughed as she ran across the wobbly bridge. She then went up to him and said so sweetly, "Do you want to go down the slide with me?" The slide is a small, double slide. Evan has gone down it before but only with me holding his hand. Even though I have tried to get him to go down by himself in the past, he wouldn't. Right after the little girl asked him, she went over and sat on one side of the slide, and Evan scooted right over and sat at the top of the other side! She then went down the slide. Without hesitation, Evan went down!!! I was on the other side of this piece of equipment, and although I could have ducked and gone under to get to the other side, there wasn't enough time to react. I thought for sure he was going to land on his bottom. Nope, he landed squarely on his feet--a perfect 10!
Unfortunately, he then decided that he wanted to walk over by the animals, but he changed his mind halfway there when the donkey got really loud; he also doesn't like when the sheep get too loud. So we walked back to the playground, and I really think he wanted to play with that girl again, but she was on the swing. He walked halfway to where she was and whined for a while; he never approached any of the playground equipment after that. We then decided to walk home.
I'm so frustrated! I went to the home of one person who does childcare, and she was nice, but I'm just not sure that it's the place for him. Wherever he would go, he would need extra attention; I can just imagine him standing in front of a tv all day flapping away! I called another person who was recommended, and I was supposed to meet with her, but the day after I talked to her she called to say that she was going to be taking care of her daughter's kids. Where's he going? He'll be with my mom and dad again. I don't like doing it this way, because I hate tying them down, there not spring chickens (sorry mom :) and Evan won't have any interaction with other kids, but it's the only situation that feels right. I know they understand him and his needs, and I know they love him!
Tomorrow, a woman from First Steps is coming over. Yep, he hasn't been in any therapy yet. The therapy that this county provides isn't that impressive. The fact that they don't have childcare---or at least group therapy---says a lot. BUT, I figure at least this will give mom a little break, and I'll feel a little more comfortable knowing that specific skills are being worked on. I can't expect my mom to do it all!
Has anyone else out there used home daycare for their Fragile kids???

Monday, August 18, 2008

The Wave

When Evan was around 11 months, he did a kind of a wave---his whole arm would go up and down, but we only got that for about 1 month. He never did the typical opening and closing of the hand....until....
Two days ago, Evan and I were walking outside when John came driving down the street. John stopped and said, "Hi!" Evan raised his hand with an open palm. Was it a wave???? After chit-chatting for a while, John pulled away and said, "Bye bye!" Evan again raised his hand and said, "Ba." That was a new one!
Sunday afternoon, Karyn, my 16 year old niece was over our house visiting. Evan has seen very little of her in his life, so she's a bit of a stranger to him (we should change that Karyn :). When she walked into the living room, she said, "Hi Evan." He lifted up his arm and wiggled his little fingers opened and closed! As I sat there in amazement, he did it a couple of times. It was so exciting. Almost 27 months, and we got a wave---the official wave!!
Then today, Chelsey and Evan went for a walk. Soon after they left, I got a call from my mom asking if I saw my little boy as they walked past their house. No, I hadn't. Well, she went on to say how he waved several times. When they got home, Chelsey confirmed this. She also said that when the were at the end of the street, she said to Evan, "Did you wave to Grandma?" and he turned around and waved again! I missed it!
I really hope this sticks, unlike his language skills. There are several words that he has said in his lifetime...maybe 40 or more....but we're down to "ball" and "what's that!?" Those are the ones that are consistent right now. A few weeks ago, I posted that he had said "blankie" twice within 30 seconds. Yep, haven't heard it since. That's the story of his language! I hope he's storing all of those words for later use.

Wednesday, August 13, 2008


Look! It's Heimlich! I called Kyle over to see him, but I couldn't remember the name of the character (non-movie's from A Bug's Life). I asked him who it looked like, and he, of course, knew right away!

Tuesday, August 12, 2008


Here are the games that Chelsey and I played. The Racko I acquired recently (free!) for the classroom. I was so excited when I saw it because it's a game that I had when I was younger. Very simple (but fun) concept....the cards have to be in order from least to greatest. I'm thinking that if Chelsey and I team up with the boys, they might like it, although they might be bothered by the fact that you can skip numbers; it only matters that the next number in the rack is higher.
This is the other game---Mancala. I had never played this before, but it looked interesting and it was relatively inexpensive. It's a fairly simple game, but one can make it more complex if strategy is added.

I adore games where there is mathematical thinking and strategy (of course, most games do invole that, which is why I like games). I'm also going to buy Mastermind for the classroom---another favorite from my younger years. Hey, I have a difficult time getting family to play games....maybe I can join the kids during indoor recess...if only there was time!

Monday, August 11, 2008

Not THAT Long Ago!

Four weeks of summer school ended on Friday, and I have approx. two weeks to get ready for school. I decided to take it easy today, and look where that brought me......

Look what I used today. We've had this stereo a very long time, but it was basically stored away for many years. Well, in this house, we now have a space for the sun porch.
I played a record for the first time in a long time: I popped on a 45..."Mickey", by Toni Basil. When it comes to music, I tend to be just a bit stuck in the 80's. I like a lot of other music, too, but I can't imagine a day when the 80's music doesn't give me that warm and fuzzy feeling. Music has always been big in my life; I spent a lot of time in my room during my teenage years with the radio on; I looked forward to Casey Kasem's countdown each week, especially when he would have the letters from viewers each heartwarming!
After "Mickey," it was on to the first full length album that I ever bought....

Oh yeah, Olivia Newton-John. I used to play that over and over. I didn't own too many LP's, partly due to cost, and probably because cassettes were the popular thing---I have SO many of those!
And while I'm on the subject of music and the 80's, the first concert I went to (and only concert when I was a teenager)----Bryan Adams. I still have the t-shirt. I went with two of my friends (I think it was just the three of us). The only other concerts that I've been to are Raffi (I think that counts) and Billy Joel. A friend of mine from work bought tickets as a Christmas present for us and one other girl we worked with. This friend wasn't even a Billy Joel fan (I AM), but she admitted after the concert that he put on a really good show (of course!).
Okay, so good music memories today, BUT, my day got even better!
Chelsey agreed to play games with me this evening!!!!! Although I can get the boys to play games sometimes, it's just not the same as playing with John or Chelsey. More brain is getting sleepy.