Tuesday, September 9, 2014

Positive Changes in the System

Sebastian woke at 6:30 with a temp around 100 or 101. I gave him ibuprofen & he seemed fine by 8:45, when it was time to head off for school. I think he struggled through the day. I called the school & left a message for the teacher- telling her he had been sick & to let me know if he started to feel badly again. They never called. He seemed okay after school, but still not a lot of energy. When we got home, he tried earnestly to go through his routine of asking the aide 500 times when they were going to go outside, asking me if he could go outside by himself in the front (NO) and teasing his sister as many times in one hour as possible. The teasing was a decent attempt, but after being outside for a bit he was saying he was really hot & seemed uncomfortable. He never came out again after I told him to go inside and change into "play clothes". He barely had the energy to change into "play clothes". Then it was couch, Alice In Wonderland two times in a row & more medicine.

Sebastian said he felt like he was going to explode at school today because his shorts were too big & there was nothing he could do about it. He was able to tighten them in the bathroom. He said it was a rough day (due to this) & that he will probably have another rough day tomorrow. ? I reassured him that we will make sure he doesn't wear those shorts again. I don't want these things to happen to him, it makes me so sad for him. However, I am very grateful that he shares these thoughts & experiences with me. That's obviously very important. His problem today didn't sound like a huge deal, but it was definitely a huge deal to him. I got a very clear impression that this experience was highly stressful for him. I felt like he was telling me the entire story - I think we just forget the things that children get stressed out over. It's important for adults to respect & validate a child's feelings.. It's important to take their problems (whatever they may be!) very seriously - because again, it is a huge deal to them. When you view a kid's problems as minor speed bumps in life & shrug them off, it only makes that kid feel worse.

Judah and I acted out parts from Alice In Wonderland as we watched the movie. I also sat behind him on the floor and moved his body around to fit the actions, sounds & story of the movie. We did that with both Cars & Alice. He loved it. He dragged me to the TV when Alice was on & began trying to somehow force my body from standing to sitting on the floor, so I could move him around to the movie again. Every time I tried to get up he wouldn't let me go!

Judah was super playful with his sibs today, initiating & interacting hugely. They played chase around the living room. Willow & Bastian are so in love with him. Willow & Judah watered flowers together outside. Judah was able to give Willow a turn with the shopping cart when I could see that he really wanted it. He was able to willingly hand me the I-pad after I asked him for it when his meltdown seemed to be nearing an end. Judah had confidence & eye contact with his communication today. He responded to directions & said many things that were appropriate & easy to understand. His eye drop really seems to be helping his "lazy eye". I haven't noticed it for quite a while! In the past I would see it all day long every day!

Judah requested juice this evening. He had the fridge open & kept pointing to a certain area of the fridge while making his juice request. I dug through the fridge, certain we had no juice. He was very persistent every time I told him we were out. Finally I found it, in the far back corner, in the direction he had been pointing. I had hidden it there a while back to keep it cold for outings. He waited until nearing the end of the day when the aide was gone before he did this. How in the world did he know that juice was there?!!!

While pushing Judah on the swing the aide helped him practice sentences & body parts. For every push she said a word. "I like to swing!" That was 4 pushes in a row, one for each word. That was a good one. She would push his knees telling him "knees" and do other body parts as well - he gets a kick out of that. (as Granddad would say)

Judah and his helper went to the park today.

Apparently Phoenix is experiencing a flood - how bizarre, how bizarre. The aide ran up to me when she saw this on her phone, showing me pictures of swimming cars. She's also from PHX. We couldn't believe it.

Judah attempted for a very short moment to poop on the toilet today. The aide ran out to tell me what was happening, she was so excited. Unfortunately it was short-lived & he soon wanted a diaper. He also needed the I-pad and privacy in the playroom so he could poop. This is his routine - the I-pad has somehow been recently incorporated into his routine, completely his doing of course, smart kid. His new teacher encouraged us to send him in underwear to school. That was such a relief! Because he is fine in underwear nearly all of the time - he just has to get past the bowel movement routine & brave the toilet when it's time to go.

We went to Judah's new school, met his new teacher & 3 aides. One of the aides is from his old classroom. She was the only familiar face there. His new teacher has taught in early intervention classrooms for 10 years now. She did so in Washington and has just started teaching here. She was able to explain the Star program to us in a way no one has ever been able to. She was enthusiastic to get the year started & seemed very genuine when she talked about the importance of parent/teacher communication.  Meeting her was a big relief. She seemed to be on planet "Let's remember what we are doing here." rather than, "What does the policy say on that??"

Judah is there Tu/Wed. The schedule is changed for WESD this year. Monday is "family day". This is the day that we can have trainings, home visits, etc. (whatever we have requested). WHAT?!?!!!? We had to fight for hours & hours at meetings to get these things last year!! Obviously they are crucial, but the school has never seemed to think they were of any importance. They always seemed to think more along the lines of school being a private manner & shouldn't be shared. Friday is the day for meetings among teachers, therapists, etc.

Judah will have both his school OT and speech therapist that he had last year!! His speech therapist called to touch base today. She is going to be shocked when she sees his progress, SHOCKED. I told her on the phone a lot of what had been happening over summer break, as far as his progress & therapy. She was very interested in the Qigong and how his progress shot up after we started it. She wants to consult with his private speech therapist. Again, something else we had to fight for last year (communication amongst therapists). We had to write this into his IFSP for it to happen last year! We had to do the same for the trainings & home visits. His school speech therapist is eager & knowledgeable - it's relieving to know he will have both his OT & speech therapists again this year. They're both good.

After a month I can volunteer in Judah's classroom. His teacher requires the kids to have a "communication notebook" in their backpack. WHAT?!?!?! Yes, one more thing we fought for at meetings - we ended up getting them to agree to a checklist (also in his IFSP). The communication notebook the teacher gave us today is a folder where his school work, school notices, etc. will go. It is kept in his backpack. This folder is sent to school with him in the morning & back home at the end of the day. It will serve as consistent communication between us & his classroom teachers. I'm not sure if the aides will actually write down what happened that day, but I do know they will at minimum fill out our checklist. We'll be doing the non-preferred food again - we explained that to her today.

Judah starts school tomorrow!!!

Willow is doing awesome, sweetest thing ever. Some of her sentences that were used a lot today were, "Thank you. You're welcome. Sorry Molly." and she would say, "Okay" when agreeing to a request from me. Angelic little doll. :)

Judah had one big bm.

He did not have Iron Up, vitamin b-6 powder or skin rash med (not needed). He only had a little Oxy-mag - we ran out. He had one dose Miralax. He did not have sleep med (we're out). We missed his shot tonight, darn!!!

He did have everything else - including beta twice, nebulizer & fish oil.

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