The circle strikes again.

I'm at work today, so I'll make this short.

Chase's general mood: I talked to my mom at about 10am, and she thought that Chase was doing great. He was calm and communicating well. He wanted to go up for a nap, so she took him up. Within an hour he was banging on his crib to let her know he was done with the "nap". After he came down, he was in a terrible mood. Whining and screaming a lot. He gave her the same problem with the "circle" as he did for us yesterday. We'll see what he's like when I get home. I think my mom was more serious this time when she said that she's quitting. If so, we are in SOOOOO much trouble.

Chase's Diet: He did eat a "cheese" sandwich and some other stuff for lunch. Probably had some soy milk too. I'll have to check when I get home and update this. He'll get his vitamins tonight.

General Stuff: I talked to PHP today and it seems that we'd be covered for Occupational Therapy for Sensory Integration Disorder. You learn all kinds of fun things when you have a special needs child. Anyway, we don't even need a referral, but, here's the kicker, we only get 60 covered visits per calender year for all therapies combined, per covered person. So right now we're doing 2 speech therapies per week, that's going to be more that what is covered. I don't know how much the OT is. I'll talk to our Speech Therapist on Wednesday and see what she thinks.

Update: So, since my mom called my cell about 5 minutes before I got home and Chase was having a meltdown because she couldn't find the DVD of Harry Potter and the Goblet of Fire, I wasn't expecting a quiet evening. But, thanks to the best grocery store EVER - Foods for Living in Okemos, MI, it is turning out to be quite a nice evening. I did find a new cheese for Chase, GFCF and he loves it! Tofutti American flavor cheese-like slices. I let him have one and he came back saying, "Cheese!" in a happy voice. He even asked me to "Opa" the package. (We're working on the "in" part of open. So far we got "O" one week and "Pa" the next, so maybe this is the week we get "In".) I also found Oreo-like cookies by kinnikinnick (what a great name) and picked up some more soy ice cream and GFCF waffle cones. Now, if I can just get him to eat more veggies... I had ordered some of these items online because I hadn't been able to find them around here. Foods for Living carries all of the items, plus more, and the people that work there are so nice.
So after Chase ate his ice cream, he was wearing most of it. His legs were covered (since he won't wear pants for more than 10 minutes at home) and he didn't like the stickiness. I tried to wipe him up but he wasn't digging that. I started a bath, which he ran away from. I told him that I was going in the bathroom and putting lots of bubbles in the tub. He said, "No." I left him alone and in about 2 minutes he came running in and wanted to get in. I put Epsom salts in the bath too. He was really good in the bath, although, he didn't really want to interact with me very much. I tried to act like I was not paying attention and finally he splashed me, looking at me for a reaction. That was good.
When it was time to get out, I did our usual "One more minute," making sure that he was looking at me. After a minute, I sang our clean up song. As soon as he heard me singing it, he picked up all the toys in the tub! We dried him off, covered him in Cetaphil, and put on a pull-up. Then we had to go up to his room to get some clothes. I got him into his PJs and he tried climbing into his bed. I got him his sucky and spent about 10 minutes trying to find Mr. Bear. Anyway, he's been in bed for about 45 minutes now. Hopefully, he's down for the night. If not, I can't think it's going to be pretty when he wakes up.

So, what do I think about today?

1. I think that my mom is actually going to stop watching them and I'm going to have to figure out what the heck we're going to do.
2. I have to be extra careful that Chase doesn't get anything with Gluten or Casein.
3. I have got to win the lottery so that I can handle everything without worrying about how we're going to pay for heat and for soy cheese that costs about $5 a package and waffle cones that cost $8 for like 7.
4. This was a good even "neutral" day; the highs balanced out the lows.
   

Wow, I'm so not good at this.

OK, I'm finally back. I really am going to have to put a lot of effort into keeping this up to date.

Let's start with yesterday, Sunday, 2/18/07:

Chase's general mood: Pretty good for most of the day. We hung out at Grandma's house and Chase helped Grandpa put up a hanging light in the basement. Helping consisted of dumping all the screws of the table and playing with the drill, but he loved it.

Once we went home, we had an issue (meltdown) when we couldn't understand that "Circle" meant that he wanted us to put this beanbag-type mattress that we have in a "circle" so that he'd have a landing pad for jumping off the couch. It took a while and a lot of screaming (Chase, not me) but I finally figured it out. Putting it in a "circle" consisted of poofing it up and getting it in as close to a ball shape as we possible could. Once we got it in the right shape, he jumped until he was too tired to jump anymore.
Note: The Occupational Therapist wants us to let him jump and crash into stuff, and we need to find an appropriate way for him to do this. This couch to beanbag mattress is what we came up with. We've done this since Friday and yesterday was the first time the "circle" thing came up.

He went to bed fine, but woke up around 3 or 4am and insisted on going downstairs to the living room. He was crying quite a bit, but I got him a drink and, as usual when he wants downstairs at night, he laid down and slept on the couch and I got the floor (thank goodness we bought that mattress thing!) I took him back up to his room at about 5am.

Chase's Diet: I realized that the "cheese" he's been eating has oats in it! Crap. He loves that stuff. Hopefully, I'll be able to find one that is GFCF that he'll eat. He seemed to have an OK appetite and ate at least one apple, a banana, several slices of GFCF bread, juice, soy milk, and a bite of a graham cracker! He took it from Corinne. I got him to get another GFCF cracker without too much drama, but we'll see if he seems to have a reaction to the graham.
He also got his daily vitamin, B complex supplement, DMG, Taurine, Primodulpholis, and his B12 shot. He's not liking the shots, but I'm sure that he couldn't feel the one last night. He just knew that I was doing it. Right after it was done and I let him up, he was fine.

Chase's Pastimes: It seems that he's liking movies again. Grandma bought him "Garfield: A Tale of Two Kitties" and it's now his favorite. He actually asks for it. He points at the TV and says "Kitty! Kitty!" So, that's good at least. He's been doing some hand flapping type things, not quite flapping, but "odd" things with his hands. He hasn't had the bear and the sucky as much, so maybe that's how he's making up for it.

Good News: My Grandma, mother, and 3 of my aunts went on a trip this past weekend. We stopped over my mom's house to visit. Everyone thought that Chase seems to be doing better. He said hi to all of them and gave hugs and kisses. That made me happy.

Ok, that's it for yesterday.

If you haven't gone through it...

It's really hard when you first mention to someone that your child is autistic (stranger, friend, or family) how to explain to them what its like.

Most people, mostly at work, go "Oh! I'm SOOOO sorry!" That bothers me a little, although, it's what I would have said a year ago. I've responded, "It's not that bad, he's on the high-functioning end of the spectrum." But, it is hard to deal with everything and even harder to give others an idea about what we go through.

I wanted to share a poem that I found on AutismSpeaks.org, which itself is a WONDERFUL site to start your information gathering. I found this over a week ago and still cannot read it without tearing up.

Perspective - A Poem for Jaren
by Barbara Spires

When you walked on your tippy toes
at the age of 11 months
We called you Skillful

When you playfully flapped your arms
at the age of one
We called you Adorable

When you methodically piled up the laundered clothes
at the age of 15 months
We called you Eccentric

When you memorized every alphabet, number and color
at the age of 18 months
We called you a Genius

When you climbed the tallest furniture piece
at the age of two
We called you Fearless

When we told them all that you can do
at the age of two
They called you Autistic

And as you keep challenging yourself
to reach out to us
at the age of three
We choose to call you...Awesome

If you really want to get a feeling for the ups and downs that parents of autistic children go through on a daily basis, please view Autism Every Day. The first time I viewed this 13-minute video, I cried because I finally didn't feel like I was the only one going through this. There's a longer version that was played at the Sundance Film Festival and I'm very excited to see it.

Explain the Name

Well:

• Chase is my son
• Mr. Bear is his #1 best friend
• The Sucky Thing (pacifier) is his #2 best friend

I'm not sure where I came up with "Sucky Thing". Someone just said it one day and it stuck. My best friend tried to use it for her daughter, but her husband made her stop. Probably a good idea. We get funny looks when we have a screaming kid in a store/mall/etc. and here we are saying "Hey! Where's his sucky thing?" But, I guess I look at people weird when they call it a "binky".

I think that if Chase gets to the point of recovery that he can handle a trip in the car, a nap, and going to bed without Mr. Bear and the sucky, we'd be in a really great place.

Here's a picture of a day in the life of poor Mr. Bear.

Well, here we go...

So... I set this blog up a while back with the intent to track my son's progress. My son Chase was diagnosed with PDD-NOS, Pervasive Development Disorder- Not Otherwise Specified. To anybody that hasn't been initiated in the ASD world, it's what some call "Autism Light", "Atypical Autism", or "just a nice way to say your son's autistic without using the "A" word."

What I need to do is track Chase's progressions/regressions/ups/downs/etc. to share with our very own A-team. I just made that up. Autism Team, A-team. Yep, I'm a dork.

Here's the story:

Chase is 2 and half years old. He was developing normally until he was about a year old. Actually, he's always been and still is quite advanced with his motor skills. He was crawling at 5.5 months and walking well at 9.5 months. Of course, we didn't really notice that anything was different about him until about last spring (2006). We just thought that he was difficult and had early-onset terrible twos. Starting at about 10 months, he was saying some words, Kitty, nigh-nigh (when he wanted to sleep), Stacy (his aunt), some other words, too. He lost Momma and Dadda very early. After he was one, he stopped saying words and just spoke in what we called "Chinese" and the professionals now call "jargon". We were amazed at the long attention span he had to be able to watch his Thomas videos and how he had so much fun at daycare, he seemed to not even care when I left him. (It's amazing and painful to me now that's really what I saw and didn't realize that wasn't something that was good.)

Our first clue that something might be wrong was a Super Nanny show we saw last May (repeat from Nov 2005). My husband and I tuned in a little late and missed the beginning. When we saw the way the 3 year old was acting, we're like, "Oh my gosh! He's acting like Chase!" So, as I often do, I called my mom and asked if she was watching. She was quiet and then said, "Did you see the beginning? The little boy is autistic." I was shocked. No way could Chase be autistic. My thoughts were confirmed by our pediatrician. As Chase was hugging and playing with her, she said, "I can't imagine that there's any possibility that he's autistic, but he does need some help with speech. Call Early On and they'll get you some help." She also sent us to a neurologist to test for absence seizures (which he thankfully is not having.)

Being the end of the school year, we didn't end up with an evaluation until September, but by then, we were starting to see so many of the things about Chase's behavior in a new way. So, we've seen a neurologist, Early On speech therapist, Occupational therapist, hospital rehab speech therapist, and U of M multidisciplinary evaluation clinicians. We're involved in the Early On SLIM group (which is great!), home visits once or twice a week, and we're starting this week with two visits to Sparrow Rehab speech therapy a week. I'm burning through FMLA like crazy. Luckily, my mother watches Chase and his little sister at our home while I'm working. We tried daycare a couple days a week, but it was just too much for Chase.

I also started Chase on a GFCF (Gluten/Casein Free) diet at the beginning of January. I feel like it's helping him, but it's also one thing that I can greatly control, so maybe it's actually more for me. But, he's adjusted well and is actually eating better now. I also just found a doctor in Grass Lake that does the DAN protocol and had an appointment with him a couple weeks ago. His current pediatrician just doesn't have enough experience with autistic children. Our new DAN doctor suggested leaving Chase with everything that we're doing now and adding Methyl B12 shots. I think that I've noticed some behaviors possibly resulting from the shots, so that's why I'm finally here. I HAVE to track his treatments and have some sane way to share with any of our A team and anyone else that's interested.