Thursday, April 17, 2014

Chasing Chaos in the Rain

Definitely more speech with Judah. He seems to be enjoying saying the "I want" sentences and was very proud to hand me my phone today and say, "all done!" with a smile on his little face. James the train was on the floor. "I want taaa" Even though he could reach him I think he was just trying to show me that he could do other sentences! I told him "all done" and set the Angry Bird down after we had been using it for Star Program work. He smiled & said, "all done". Star Program work went much better than usual. I decided to do it after his sleep med while he was getting comfortable in his bed. I went slowly. When I assisted him with 'hands down' I gave him his reward - the Angry Bird. He threw it across the room shouting, "Hi-yah!!" This was motivation to do this again. I said, "Ready?" and he would say, "Ready!" He only did the hands down twice on his own, but he was enjoying it. Twice is a lot more than usual! I cleaned his room while he rested in bed. Sebastian came in later, I told them goodnight and left. They stayed in bed for quite a while! I had time to clean Willow's room. Then I went to the bathroom and the dog started whimpering outside of the bathroom door. Judah got up right after that, then Sebastian. Scott put them back down & I took over the job of getting Willow down, just like we always do. I think we can see a few parts of tonight's routine that could work, but still not completely right yet.

The support group meeting was kind of surreal tonight. A handful of parents & 2 grandparents talking about all of the specific endeavors currently going on in our life. ALL of our current adventures & obstacles were brought up. Insurance coverage, Dr. Greene, Mickey at Western Oregon (???), constipation, poop chart, writing down daily progress, GI specialist, Super Bounce, questioning what will happen this summer (we chose to be our focus for next meeting), FB autism groups (they have created one!!), "i want" sentences, social stories (I'm going to make at least one tonight).. just lots of stuff! But it was lots of talking, I could barely get a word in, so I just wrote in my notebook mostly.. which will help a lot.

Willow is repeating Sebastian's "baby butt" comment that they both think is so funny. During the car ride home she was sitting behind Scott and says, "Daddy.. Daddy!" Scott says, "Yes Willow" and she yells, "Baby butt!!!" It's so hard not to laugh, I can't do it. Last night she yelled it and threw her hands in the air as if she was proclaiming "baby butt" to the world! She's pretty hysterical.. and of course her bff Bastian is constantly teaching her & egging her on.

Rainy day so we played in the garage. Apparently the lady at Western Oregon that we have been in touch with recently found a student for a guy in our class & support group. She was only able to find one apparently, but our friend says it is working out well! I was surprised how many people in our group pay for their kids to be in day care just to get the extra socialization. They were talking about which day cares were good with special needs children. Also at the meeting, we picked up a dentist name that may work for Judah, and tips on cutting his hair!

The kids played in the childcare rooms during the meeting. Sebastian was almost in tears at first, so he joined us in the parent meeting. Halfway through our meeting he went to play & had fun. Judah pushed me out of the room when we first got to the childcare area, saying "Bye!!!!"

Judah was trying hard to poop today, it never happened. I stopped the Miralax for the lab, but may fore go that rule tomorrow. We can't do the lab until he poops! And doing a sample after an enema is probably not a good idea... and we don't want to do an enema anyway. And it's pretty crucial that he have regular bowel movements. The probiotic helps with that - but that has been stopped due to lab preparation as well. He wasn't great about going to the potty when I asked, but the timer helped! He was in diaper all day because he needed to poop. I made sure that he washed his hands after every toileting experience.. since they wrote that he didn't do that one day at school. That's always been an easy routine for him at school, we need to keep it consistent at home!

Speaking of school...
Judah likes to run to his classroom & get far ahead of Willow & I. I caught up to him at the ramp that leads directly to his classroom and was greeted by today's substitute teacher (his real teacher hasn't been there in weeks!). She told me her name (Laura) & then let me know that they were going to send him back home because the staff had not been trained on his epi-pen. WHAT! I informed her that he was able to go to class on Tuesday. Then I looked at her and said, "He is going to be upset". I told him the news and tried to get him to head towards the van, instant tantrum. It's raining, Judah throws himself on the sidewalk, the substitute quickly walks away (thank you so much) and I look over to see Willow wandering off towards the parking lot. Earlier she had tried to stand behind a van that was getting ready to back out! I look in the other direction to see aides from his classroom waiting at the bus, watching us. I ran to Willow, leaving Judah, who began screaming, "Mommy!!! Mommy!!" Staff continued to watch from a safe distance. I put Willow in the van, but forgot to lock it. I ran to Judah, who then began running towards the classroom..  an aid opened the classroom door wide & welcomed him in! I yelled at her, "He can't go in there.. He CANNOT go in there!" running after him. So now the situation is even worse - he's in the damn classroom. He ran through the classroom, flying past the aids. I tried to get him but was stopped by an aid waving a cordless phone in my face.. because apparently now was a great time for a phone conversation??? The school nurse was on the line. I told her.. "I can't talk right now. Unless you are going to say that he can stay, otherwise I need to go." She kept talking!! I ran out in the rain with their phone & locked Willow in the van. The nurse wanted to know what the epi-pen was for and she finally agreed to let him stay. I made sure the aid was feeding him something that was egg, gluten and casein free & showed another aid his extra pants (he was soaked from the rain). She never changed him. His pants were wet all day.

I got back to the van & just cried. I felt like I couldn't keep my kids safe when Willow ran away and I had to leave Judah. I didn't handle the situation with the aids very well. I was a wreck. I called Scott. He came to meet us to pick up Judah later. He wants to file a complaint with the school.

I talk to the nurse on the phone after I get home. She had only found out about his epi-pen this morning. I had informed the school a week ago - 3 different people were on that email & none of them had written back. On Tuesday he went to class with no epi-pen, Shelley was there for 2 seconds & she said it was fine. I told the nurse all of this. I told her they have known about his egg allergy all year. I answered a bunch of questions for the nurse as she filled out his plan of action. She told me her name multiple times for some reason.. ?

Shelley (his teacher MIA) calls later to reschedule the 6 month review. She had forgotten to send us the new date and now they were changing it again due to someones schedule. We set up a new day - the 24th. The OT won't be able to make it, but that's fine with me.. she just makes me confused. I told Shelley about this morning. She said the sub should never have told us to go home and that they should have called her back (she had called with the epi-pen info this morning). She said he should have gone to class with no epi-pen just like he has done all year long. That would be to cover their ass, but obviously not a care given to Judah's life on Earth.

Judah had 1 tablespoon (one dose) of the doctor prescribed L-carnitine. He had 2 doses of Docusate Sodium, 2000 i.u. vitamin d, three tablets 125 mg folinic acid with b-12, 1 tsp fish oil and no probiotic or nose drops (waiting to do lab). He had no Miralax . He took the sleep supplement, 5 - HTP (100 milligrams) - he took two tonight since last night didn't seem to be superbly effective. He also took 1/2 a pill of Bethanechol in the morn, & the other half in the evening.

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