Friday, February 21, 2014

New Willow, Phenomenally Progressive Judah & Sensory Sebastian!

Sebastian recently asked me why Judah dances in a circle. I told him (I learned this not long ago) that Judah does that because it feels good to him. The world of sensory is interesting. I said, "It's like how it feels good to you to jump and then clap your hands one time." Then he got it. No more questions. Sebastian used to spin. I had asked him once why he did that (before my sensory knowledge). I can clearly remember his answer.  "My body tells me that I'm supposed to do that." That is a dead-on explanation of sensory. He's had some interesting sensory thus far in life. He sucked his pointer finger as a baby/toddler. The spinning was the summer before last. I believe when that stopped the jumping started, just one jump. Now he's added the clap after he lands. He does a very short dance outside the car everyday when I drop him at school. Judah's sensory involves pressure, forcefully running into things, jumping, rolling & likely taste. I understand the pressure one, I have that at times. We all have ways of stimulating our senses. It would be cool to know what other people's sensory outlets were. I'm very curious to know what Sebastian's will be next.. and ten years from now! :)

Tonight we had to torture Judah. Scott & I both felt so bad. Sebastian was a little freaked out & Willow wanted to get all of the same "medicine" Judah was getting. First, the fish oil. That was easy tonight, thank goodness!! I asked him to "take" it and he said, "take". Then he held it for a while, entranced in Sponge Bob television, and slammed it down when I looked away.

Next up- pink, strawberry flavored medicine that he must take orally 4 times a day for his toe infection (doc told us today that it was infected). I approached him gently, as I was very much aware of the hell that still remained for him. To a kid, this stuff is horrible, ten times worse than what it is for us. Willow & I smelled it. I eventually got Judah to smell it. He let me know he wanted my help when I asked him if he did. Willow wanted to drink it. Judah held it some, then gave it back. He was laughing - he always laughs beforehand. Eventually & unfortunately Scott ended up holding Judah's head back & restraining him some. Judah did open his mouth & take it though. I couldn't tell if he liked it or not. I hope so.. that one & the cream (next) will both be 4 times a day.

Judah hates it when we mess with his toe. It probably hurts like hell when we touch it. Every day we clean it & treat it with Neosporin, twice a day. Today the doctor told us it was infected. If the infection doesn't heal on the meds then we will be referred to a specialist who will remove Judah's toenail and "reset" it. Apparently his toenail is growing in the wrong direction. This kid has MORE than enough to deal with already!!!!!!!!!!!! I don't understand how antibiotics could fix this entire problem. But I don't need to understand it, I just need it to work.

We did the cream, he screamed bloody murder. Hopefully the pain goes down so he can tolerate this stuff easier. After that we did his ear drops. We took breaks between these things. We aren't monsters, not completely anyway. Since he is mainly non-verbal we really don't know if his ear, toe & belly are hurting. How can we know everything that we need to be doing to help? I don't think it's possible to know that. Thankfully we haven't had to add suppositories or enemas to his list of parental torment. He would probably load up his Cars backpack with toys & run away at that point.

There was a migraine trying to creep into my head all day. I was able to lay down for a bit while Scott worked in the living room, trying desperately hard to focus with some insanely behaved children running about. The minute I left to take a nap, it sounded as if our children had all scarfed down 10 pounds of sugar & caffeine........... and multiplied.

Sebastian spent a good part of the day asking Scott &  myself when his new friend would walk by, when he would get out of school, if he would stop by, if he should go wait outside, if it would be okay if he went to his house... endless. I don't know if that kid ever came by but Sebastian had stopped talking about him after I got up from my nap.

Sebastian was upset about something after school. He threw a huge tantrum when I went in the door first at home. He wanted to be first. More tantrums came after I told him that he wasn't being nice to Willow. He said that everyone tells him that he isn't being nice.. then he listed off some people. His teacher was included in that small list, I need to ask him about that. But he definitely didn't want to talk about anything hard after school. I hugged him for a long time. I don't know what happened at school or what he was thinking about, but I hope he isn't holding things in. I don't want him to learn that.

Today was definitely a day of PROGRESS. Willow started saying some new things on her own, really making her opinion and decisions known. None of it was to gain attention & she wasn't copying others (she does these things a lot). It was so neat to see that side of her - she is growing up! Judah, oh my god, Judah. His school speech therapist came by this morning to teach us some Star Program speech therapy tactics. She didn't show us much that we didn't already know, but her info was good reinforcement. She gave us a few papers to keep & her motivation was obvious. She even asked if we wanted to do some Star Program training with the autism specialist & herself at our house. The time with her was also an opportunity outside of school to ask different questions regarding Judah. Judah was excited to see her & tried to leave with her, telling us bye, waving & walking out with her hand-in-hand with a big smile on his face. Willow followed.. in her bare feet. Judah was progressing after she left & even when she was here! He called me to his room, FROM his room several times to help him with his racetrack. "Mommy!!!" was heard very clearly through the house each time. That was pretty cool. Usually he approaches me. He said "not cool" to her when she asked him if he wanted to do work.  haha! He was saying different things & interacting while she was here. He sat down with us for a while. He crossed his arms on the table, just like Rachael was doing, haha.

As soon as Rachael left I tried the "I Want ____ _____ _____" laminated strip on our fridge with Judah. I held it up & he said (without me saying a word) "I want Cars", pointing to each word!! Give that boy some Cars! I gave him a car, but learned quickly that he was talking about the movie, duhhh. He said the same sentence later when I was forcing him to watch his music therapy session video on the computer. There was a row of videos that he had recently watched on the screen as well. He kept pointing at them and saying "cars!!" I told him that I wanted to watch Judah. Eventually he said, "I want cars" and yes, I turned on one of the Cars videos. He definitely gets rewarded for sentences! That is HUGE!!

When I was getting ready to leave & pick up Sebastian I asked Judah if he wanted to go with me. At first he told me "cars" because he was watching Cars on the computer. So I gave him options - stay, watch Cars or go get Sebastian. I'm a confusing mom. He said, "nope" to all of them. Then he said, "stay" Wow! Then he said, "bye" Haha! Then he made a kiss sound when I leaned in to kiss him on the cheek. While I was searching the house for my shoes (ironically I had my keys & phone!), Willow walked by Judah and said, "hi Judah" and waved. She is so cute. Judah wasn't looking at her. He was still very focused on the cars on the computer screen, but he still said, "hi" right back! Today was just phenomenal for him. He hasn't had the folinic acid for a few days now since we ran out. That's the only change in supplements.

I asked Rachael about supplements & speech - she seemed completely oblivious to these things that are all over the Internet & very talked about by people who work in the field of autism, like she does. Maybe she just isn't supposed to promote or negate it? Food allergies, same thing, no clue. She DID however give me a possible reason why Judah's voice sounds strange most of the time. The process of learning to speak involves a phase where you are listening to the different sounds your voice make. At this point your voice tends to go up or down but isn't really stable. This is the only time someone has given me some kind of valid answer to this question. It's a question that I've even had to answer in paperwork, yet no one could ever explain to me why this was happening, if it will change, if something is wrong, etc. She could be wrong, of course, but I really appreciate her sensible answer! I quickly & accidentally debunked her information about the steps we go through while learning to speak. I told her that my friend's kid started speaking overnight (there are numerous stories online about this type of thing.. maybe she doesn't have the Internet? haha). So obviously this kid didn't go through the steps. She seemed shocked.

One of the best Sebastian lines I heard today was.. "My brain was squishing and turning and it wrote out a message." Hahahaaa! I love that. The message was to do something that involved another kid.. I can't remember. He was probably talking about the neighbor kid, haha.

Scott had the Bluetooth on in the van while he was taking the kids to pick up Judah's medicine. I texted him using a curse word in the sentence. I had no idea I was on speaker, a very loud speaker by the way. Apparently the Bluetooth in the van played my text, not once but twice, back to back. That's good parenting. ;)

Judah had 7.5 mL L-carnatine, 1 probiotic, 2000 i.u. vitamin D, fish oil, ear drops twice & new meds one time - cephalexin 250/5ML, one teaspoon. Mupirocin (Bactroban) Cream 2%. He had a large, mushy poop in his diaper, still wasn't enough to pull him away from the Cars videos though!! haha.

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