Wednesday, May 14, 2014

The Shirt Rule

Sebastian was sure on his game this morning. He checked his "mail", finding that today's word was fishtail. We worked on pronouncing it a few times. Typically when I tell him that 'th' makes a certain sound or 'sh' makes a certain sound or the 'a' is long, etc. he won't say them in that way when we sound it out again. Today he tried making the 'i' a long 'i' - since last weeks words all had long 'i' sounds. I told him that 'sh' made the "shhhhh" sound and 'ai' made the long 'a' sound. Low and behold, he continued to sound it out & suddenly remembered the sounds! It seemed like he just finally understood, he finally got it. I told him we were going to build a magnetic toy car obstacle course after school. Hopefully we can get the cars to fishtail!

Sebastian spent most of his morning coloring his Sponge Bob coloring book. We're back in the coloring phase it seems. He finished coloring the entire book by the end of the day today.

Sebastian told me about the shirt rule at Harritt this morning. He said your shirt has to be at least 2 grown up fingers from your neck. If it's more than that you can't wear it to school. He said Senora Stewart said mostly girls will do it. I asked him why he thought that was a rule. He said, "Because it wouldn't be propriate." I asked him what he meant. He said, "Well I was just thinking about it and I think that you would be showing all of these things, that other people aren't supposed to see." I told him that was exactly right - he was very proud.

It was really warm today - down right hot! I put Willow in a sundress with spaghetti straps. Sebastian saw her & looked concerned. Then he put two fingers on her shoulder & said, "Mom, she can't wear that at school." haha. I asked him to show me how to use the Harritt shirt rule. He put his fingers near Willow's neck and told me that her shirt can't go down past her limb (arm, hahaa!). I'm totally confused - but I'm thinking I won't have to worry about the "shirt rule". If anything, the teacher might complain about him checking other people! haha!

Judah's doc appointment was barely 20 mins today! The doc was running late. Usually his appointments are a leisurely hour. The paper on the wall in the room does say appointments are only supposed to be 10 or 20 mins long (depending on the issue). So I guess I can't complain - apparently we got the "long" appointment, haha. I should say we only saw the DOCTOR for 20 mins. Judah & I were actually in that room for 2 hours!! I mentioned to the doctor the large amount of urine Judah has been producing overnight. She wonders if it is a UTI. They had to "bag him" and wait for him to "go". We waited for a long time.. I gave him juice & water.. until he refused to drink anymore. He produced a couple drops, not enough. Eventually I told her that my husband needed to get back to work - she gave me a couple bags so I could "bag him" at home. Dr. is referring us to a dermatologist for the rash. She recommended getting an EIP assessment. She said it might help get him more school days (she brought this up). We've begged for more days - and I'm pretty sure the staff doesn't like me at all at this point - obviously that doesn't help matters! But we will look into the EIP assessment, whatever that is! She is also referring us for behavioral & sleep counseling.

For hyperventilation, since it has only happened when I have left & he is upset, she recommended putting in a video before I go. This would be a home movie of him & I doing something together.

I didn't have time to mention the bloody noses. She wasn't surprised to hear that the QiGong was producing results.

I tried the tea tree & sea salt in Judah's bath tonight - Dr. Soloman always recommends this. I should have asked her about it today though, because man did that make him itch! Then he got terribly upset when I drained the tub, He really wanted a bath & didn't understand that I was just changing the water. He was screaming & crying. He was clinging to the wall, not allowing me to touch him. I hate those situations, so frustrating & sad.. really makes me feel like I'm not doing enough because why can't he understand me??

Rosemary came for Judah's massage. She did most of it, giving him a really good massage. She showed us many methods that will help my massage skills for sure. I mentioned that he covers his ears when there is loud noise now. He never used to do that before. Autistic children sometimes have that sensory issue. I always thought we got lucky there. She said that this was a GOOD sign, that the work we are doing on his ears is making him more "open". He was talking a LOT tonight, with very good eye contact too - also related to the ear massage I'm guessing. He picked up a shower head package that has not been opened yet and told me, "Mommy's shower". Then he said, "open", wanting me to open it. Today he was much more forgiving when I did not give him my phone after he had requested it multiple times. He even asked during his doc visit and didn't throw a tantrum when I wouldn't allow him to use it. That one would have ALWAYS been a Judah throwing himself to the floor tantrum! So that was pretty incredible, even though it probably looked like nothing. Today, when I have refused him my phone, he has immediately found other things to do! Major incredible!!! He was having trouble settling down for sleep tonight. He ran out of their room a number of times. He wanted me to hold my face against his for a while every time I put him back to bed. At one point he requested a book. Instead of telling him to go to sleep (what we would have done any other night), I went to get him a book. It was one that he could interact with (make people move, etc.). He was very attentive & enjoyed the book a lot. He was even fine with me taking it away at the end. He didn't get out of bed anymore after that. When you can't sleep & have very communication ability, you can't exactly talk to Mommy & Daddy about not being able to sleep, so what do you do? You get up! That makes sense!! This never occurred to me until he requested a book tonight & was calm & interacting while I read it. If I could be in his shoes for a day I would probably see & learn a lot of things that could or should have occurred to us by now but just haven't. And I'm sure he wonders why they haven't.

Sebastian & I worked on verbs tonight, since his word today, "fishtail", was a verb. He was surprised I gave him that word after he learned that it was a very dangerous thing to do in a car, haha. Looking back, that may not have been a very good word choice. But it was fun! He read a list of verbs really well! Then he had to give me a bunch of verbs to fill in the story I had written for him (before he heard the story). It turned out pretty comical. I used to love Mad Libs as a kid - I had a feeling he would too.

We were able to tell the other lady that she is hired to help out Judah. She wrote back quickly & seems eager to start! We still haven't heard from the first lady we wrote. Also - someone came by to get the swing set tonight. They looked it over & said they would come back for it this weekend, fingers crossed!! They are one of only TWO people who have replied to our Craigslist ad!

I took Judah outside to do his Star program work tonight. It was such a beautiful evening. He did sort of well. He did "walk with me" once. He almost did "hold my hand". He did "stop, go" many, many times. "Stop, go" is a game to him - he loves it.

Willow always tries to get Rosemary's attention during Judah's massage. Sometimes she will try to show her a stuffed animal, or even throw it at her. Once she threw a ball and it bounced off of Judah's head during the massage. Rosemary thought that was funny! Today one of her strategies involved her Dora "potty time" doll. She turned Dora on, which started Dora's potty song. Willow held the doll behind Rosemary and started dancing to the song! Scott & I were trying so hard not to laugh - Willow was basically right in front of us. That little girl really tries!! Rosemary used to do play therapy with kids - she's good with them.

We ended up doing Judah's massage again tonight (usually it's just once a day). He was pretty wired before bedtime. The massage calmed him down a smudge. He really enjoyed it though. He was talking a lot, lots of eye contact & physical contact too. Today he nearly pulled my shirt off during his massage when Rosemary was here! At the doctor he pulled a brightly packaged maxi-pad out of my purse and was holding it out, trying to hand it to the doctor!

Judah took no fish oil (forgot!), 2 vit d., 1/2 a bethanecol twice, Oxymag and docusate sodium (twice). He also took 1 tablespoon l-carnatine. No Miralax, one poop. No dmg w/folinic acid- still waiting on it to arrive!!! We tried B-6 powder again. It was easily disguised in his almond milk & honey drink. But he still didn't drink it. I tasted it, it was heaven, like a milkshake! Maybe he had noticed that it was foaming out of the spout of his cup periodically? We ran out of l-carnitine today & I called to refill. I was told that it was already ready. Scott went to retrieve it & was told that we cannot get refills on it yet. It's too short of time span between refills apparently. Scott told them that Judah takes a Tablespoon a day! We are really out! The pharmacist said Judah is only supposed to take a teaspoon (they have it wrong on his prescription, uggg!). So we'll have to contact Dr. Green & get it straightened out.

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