Tuesday, January 21, 2014

Departure & Arrival

Today's schedule:
Departure from home - 8:45 am. Drop the boys at school, take Willow to story time at the library, pick up the boys, lunch, directly to speech therapy, back home for 20 minutes, directly to meeting with Donna to talk about Judah's IFSP & back home again arriving at 6:15 pm.

Donna filled us with information on disability law, her personal history & gave us ideas on what to expect as our outcome. She also offered advice and in a polite way let us know that we may be seen as obnoxious for requesting what he needs, she thinks it's 10 times more than what they are going to end up giving us. And obviously we don't want to piss off the party. She also said that the IFSP changes will not go into effect until it is signed. It's not signed until it's done. I hope the next meeting is the final meeting. She told us to have them clarify everything we weren't clear on, to follow up on everything discussed via email & to decide what we really need (3 things) and what we can live with. She's been living the IEP/IFSP for many, many years. Her son is also in the system, but not the same education district. So we've gone from 1 professional telling us to fight for what Judah needs, no matter how ridiculous our "team" thinks it is, to another professional telling us that realistically we are only gonna get a smidgen of what Judah needs & that we're going to spend a fortune on private therapy & that our marriage could fall apart (happens a lot). Now we just have to decide our road. Seems easy enough, right? uggggggggghghgh!!!!!!!

We talked for quite a while with Donna & then I told Scott I needed to put more money in my meter. He was surprised that I had parked at a meter. I told him there were no spots without meters. He said he had found one! He walked outside to find a $40 parking ticket on our car. Our life sucks.

I tried to drive home tonight in the dark after our meeting with Donna. I made it a few blocks & then parked. I don't feel safe at all driving at night. Going to meet with the Dr. who did my eye surgery very soon.

I learned today that our van beeps when we back up & get too close to something behind us. I won't say how I learned this, but I am extremely thankful for it. Our life is chaotic enough.

Willow was very serious through library story time. We never go anymore. This was probably her 2nd time experiencing story time, and it was crowded! She looked around, studying the room, the librarian reading the book and the kids & parents. When the music came on & the kids were jumping to a part of the song, I lifted her up & down. She lit up with smiles, throwing her hands in the air! Greta told me she noticed it from across the room! Willow thought the jumping was fantastic!! I've never been able to do anything to break that frown & silence when we are out in public, especially not in this huge way. Now I know the secret. :) She waved bye to Greta & continued her silence until we were at the exit door. Then her speech came back.

Judah - Miralax twice, .2 mL L-Carnitine, reflux med, vitamin D 2000 IUD, fish oil 1/2 tsp & 1 probiotic. I walked up to him after arriving home & commented on his new Fillmore car. He responded with a really good imitation of Fillmore from cars (the hippy car), by saying "Heyyy Maaan".  ??! Definitely talking more & more responsive. Eye contact this evening was really good. He said many new words today - all or most through imitation. He was across the room, focused on his little cars & looking away from me when I said, "Bye Judah!" just one time. He turned around, waved and said, "Bye!!" He's had wet diapers all day, and obviously no underwear time today. It will take so much longer to potty-train him than it did Sebastian. We need probably 2 weeks of only underwear time before it MAY happen. Haven't seen him hit others in quite a while! He still hits himself when upset, on average probably a few times a day. After school a regular aide took him to wait at the bus instead of by the classroom or on the sidewalk outside of the classroom like usual. I asked the aide why he was there & she basically said because she had to take another kid there (so why not throw off Judah's routine, put him near a bus making him think they are sending him on a bus somewhere, etc.). Sebastian & Willow had been playing on the playground prior to this. We walked over to Judah's classroom to find him 5 minutes before class was supposed to end. Sebastian caught up with Shelley who told him where Judah was (already at the bus!). Judah was very upset, as I had predicted. I had scurried over there & yelled his name as soon as I could see him. The aide said he was upset because a string of Kindergarten students had just strolled by. Every kid in that classroom is probably panic-stricken when their routine is interrupted. They've seen him panic when they bring him out early & he has to wait 2 minutes for me to get there. There was no need to do that to him today, completely unnecessary & mean.

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