The real Santa Family!

I have not posted since November 7th and I have many good reasons why I have not done so! The biggest reason is every time I've been on line in the past couple months most of my on line time has been spent researching the best way to be an advocate for my kids! Since school started August 24th Trevor has really had a hard time. On September 20th he went in the hospital at Shoal creek for acute care for meds change. He spent 7 days there and came home very stable. I kept him home for 3 weeks and all was well he was the most stable he has been in 5 years. Then I sent him back to school. And low and behold he started going down hill very fast. I had letters from his doctor at the hospital and his regular doctor asking the school to place Trevor in a small self contained classroom with low emotional stimuli! You would think that with two letters from Drs. that the school would go sure we will do that for Trevor because it is what he needs to stay stable. But no the school system does not work that way. They refused to the placement after one ARD that was 2 1/2 hours long and the second ARD was 3 hours long ending with the assistant director of special ED saying just sue us! So still trying to be an advocate for my son Doug and I decided to hire a law firm to help us advocate for Trevor. We ended up in mediation with the school district (only 300 mediation's happen in a year in the state of Texas) so it was a big deal to go through mediation. Mediation ended with the school offering "homebound" schooling for Trevor. That was on November 22. The following week we started "homebound school with our new teacher Ms. Fair" was wonderful. We got her 6 hours a week 3 hours on Tuesday and 3 hours on Thursday. Also that week Trevor got to start horse therapy out at Spirit Reigns. He loved it. So once again we started to see major stability going on for Trevor. Then the bottom dropped out again. While at his well child check at the pedi the doc noticed that Trevor was doing this weird thing with his mouth. Come to find out it is a major side affect of one of the new wonder drugs that he was taking. This was on December 9th on December 10th I called his regular doc and explained the symptoms and waited for him to call back. At 7 pm that night he called to say that yes the med had to be stopped at soon as possible we were to take away one dose in the AM of the 11th and hopefully come off of it over the next 6 days. But that was not to be. We took away the morning dose at 6 am on the 11th and by 11 am all hell had broken loose in Trevor's poor brain (like I said the drug was really helping) I ended up having to call Doug to come home and help me transport Trevor to the Children's Hospital ER where they were able to give him a med that calmed him down enough to get control of himself again. Then we had to wait for one of the psych hospitals to have a bed ready for him because we knew at that point that no way in hell were we going to be able to wean him off the med at home. 30 hours later he was transported by ambulance to a hospital in Belton (about an hour away) Were he spent 10 days doing a whole med switch (back to the old meds that do not work nearly as well as the new ones were) So I feel like we are back at square one. We left the hospital being told that Trevor needs three major things to make his life more livable 1. The right med. (ok docs give us something good) 2. Structure and Routine anyone in my life knows that Structure and Routine is a 24/7 thing in the Santa household! 3. Homeschool so he does not have to be in the over stim envirorment of the school system. I am so upset that because of the choices of his birthmom that this is what the poor kids life revolves around now so that he can live a "normal" life and for him it is a whole different "normal" than for my 5 other kids. FAS really sucks and if anyone thinks that drinking even a small drop during pregnancy is ok then come live Trevor's life for 24 hours. So I have never posted any of this on my blog but in not doing so I have left out a big part of what family life is really all about when you have a child with FASD. And Trevor is my child and he deserves the best chance he can have and if that means mommy being an advocate and hiring lawyers and knocking on every door for the right services for him then that is what he will get it just means that sometimes the happy happy joy joy blog that I have been doing for the last 2 years is going to have to take a back burner sometimes to the real world happenings of the Santa Family.