Elijah day 8/meeting with doctor

Discussion in 'General Parenting' started by jcox, Feb 24, 2009.

  1. jcox

    jcox New Member

    Day 8… February 24, 2009

    I had a quick visit with Elijah today. We played Uno again for a few minutes. He seemed very restless. He tried to have me walk around with him, but the staff really don't like that. They like families to stay in one of the visiting rooms or the child's room, but prefer the visiting rooms if they are available. When I first got there he told me I could stay as long as I wanted. He told me how he "Touched ladies and doctor said he is going to cut my hands off if I do it again". This concerned me. I told him it is not alright for the doctor to talk to him that way, but it is not alright to touch anybody either. His social worker was at lunch, so I tried to convince Elijah to let me stay for longer because I really wanted to talk with her about this. Just as Elijah had enough of our visit because he did not want to be in the room. He wanted to walk around. As I was about to leave his social worker walked through the door. I began telling her what Elijah told me about the doctor cutting his hands off and then she suggested we go into a private room to speak about this. She went and got the doctor.

    The doctor appologized for telling him this, but was just trying to make it clear to him that it is not alright to touch people that way. Besides the incident on Saturday where he ripped the lady's shirt off, exposed her breast and scratched her he mentioned that there were a few other incidences of him grabbing lady staff's butts and laughing hysterically. He told me clearly that this is called sexual assault and he with Elijah's diagnoses plus level of confusion he was just trying to find a way that he would understand how wrong it was for him to do this. I agree that telling him that it is not okay does nothing to prevent another episode. We have talked and talked to him about this but the behaviors continue. He said he can not release Elijah until he has three days without innapropriate touching. He said whenever males are on staff he will have them be Elijah's direct care workers and that there are safety plans in effect for the female staff saying that they are supposed to keep Elijah atleast an arms length away, and be aware of his touching. He told me he was concerned that Elijah must have been sexually abused to be this hypersexual. So then I went into the whole stories about how something might have happened with my step son who is no longer in the home, and also with his half brother but Elijah was very young then, and also how they both were reported to DCF and the D.A. I also told them how it is not clear if anything happened in either situation. Then I brought up to him how I have read that children with the diagnosis of Bipolar are often hypersexual anyways. Then he left that topic alone.

    He asked me about Elijah's past experiences with medications and if his ADHD has ever been treated. I told him how when he was three they put him on Ritalin which made him have a five hour rage. Then he asked me about when he was tried on the Paxil and Trileptal that did not work either. They all made him rage. I asked him what he believed Elijah's diagnoses were. He told me clearly he is Pervasive Developmental Disorder (PDD), possibly Asperger's but there is a great possibility he is more severe than that. He said he is not mentally retarded as the worst cases of Autism are, but he has some developmental delays especially educationally, that make him think Elijah might be more severely Autistic than Asperger's. This became clear when the tutoring began yesterday and they asked him to read something. Then he said "I can not read". He can not. I did not think anything of it because although he is six-and-a-half he is only in Kindergarten. We started him a year late hoping he would gain more social skills in preschool for another year. The doctor told me that he should atleast be able to sound out simple words and letters one at a time at his age. I remember my girls were reading by his age, but they were also in first grade, not kindergarten. He also believes Elijah is definetly bipolar. He told me because of his Autism, he does not think Elijah would ever be able to get along in the public regular school system, and that he needs to be in a school or program specially designed for Autistic children. I agree with him and asked him to put this in writing for me. He said he will write it along with other recomendations in his discharge summary once the time comes for him to be released. I asked him what the plans were for Elijah when he gets discharged. He said home. I mentioned a partial hospitalization to him and told him the school has recomended this since about three weeks after school started. He said there are only a few partial hospitalization programs in my state, he is too young for most of them because they start at age seven, and the ones that do exist are about two hours away from my house. He again told me that the school needs to send him to a specialized school for Autistic children and that a partial hospitalization would not be appropriate for him because of the reasons stated above. He told me honestly because of the Autism being mixed in with his bipolar, he does not think Elijah will ever be "Stable". He said that he is having a very hard time breaking his mania. He is very manic, hyper etc. He said he raised his Abilify over the weekend, and still has more room to go in raising it before he gives up on it. He said Elijah is at 15 now and he can go up to 30. He also said a Lithium level is going to be checked tomorrow and then he might increase that based on the level. He said that it never got up to the therapeutic level yet so that is why we have not seen results.

    Well today was an alright day. I am glad that the doctor agreed to clearify what he said to Elijah about cutting his hands off, and was glad that I got to talk to him more about Elijah's diagnoses, etc. They said that Elijah made it through a whole day of school yesterday there, and that he made it through all morning today... I got there at lunch so the afternoon sessions did not start yet. They do about three hours in the morning, then do Occupational Therapist (OT), PT, lunch and therapy, then they do the other two hours of school in the afternoon about one. So it shows that maybe if he had the right accomodations at school then maybe he would not have to have a shorter school day. I am beginning to think that some of his delays are the schools fault even though he has only been in kindergarten since September. If they accomodated him better, did not suspend him so much, etc then maybe he would have learned something like how to sound out his letters. They don't seem to want to help him right, but refuse to send him somewhere that can. I have been fighting with them since before school started. I had a hard time getting his accomodations to begin the year off with. They refused to give him an IEP but I researched and found out that he was eligable for a 504 plan so he had one of those with a 1:1 aid to begin the year off with. As soon as he began having a hard time and got suspended his first time I succesfully fought and got him his IEP. I have suggested to the SPED director four times to send him to a school that can better accomodate him, but they refuse to. I know it comes down to money that they don't want to pay. I have spent countless hours advocating for him to get a good education, and now that will continue as I pursue getting him new accomodations for his new diagnosis of Autism. I am not going to give up fighting for him about getting into an Autism school like the doctor recomends. I am glad I will get the doctor's recomendations in writing about the special school , because that should help me alot in my fight that I really think will end up going all the way to our state Department of Education Appeals Unit... but I will go there if I have to. I spend lots of time studying the laws and regulations regarding special education, and will continue to do this so I can be the best advocate for Elijah.

    Today was an okay day for me. No silent tears or watery ones. Of course I miss him, but know that he is where he needs to be until he is atleast a little less manic.

    Thanks for the continues support and prayers.

     
  2. gcvmom

    gcvmom Here we go again!

    I am OUTRAGED at the comment the doctor made to Elijah about the hands. Simply OUTRAGED. It just seems incredibly, INCREDIBLY unprofessional.

    Aside from that, I am glad they have seen what they have in him and are formulating a more specific diagnosis and are working on getting the medications right for it.

    You are doing such an amazing job for him and he is very, very lucky to have you fighting so hard for him. Hang in there!
     
  3. DaisyFace

    DaisyFace Love me...Love me not

    JCOX--

    I finally breathed a little sigh of relief for you...it does seem that know the professionals are beginning to get on the right track for him (although I don't care for that threat about cutting Elijah's hands off--wouldn't they have reported you to CPS if you had said such a thing?).

    I will keep my fingers crossed that the situation will continue to head the right direction...

    --DaisyF
     
  4. house of cards

    house of cards New Member

    I'm very happy that you are getting some eyes on your difficult child that can validate how hard it is for you and him. Now, you just need them to find the medications and support that will help.I would be upset about the hand comment as well but I do like that he was honest with you and didn't try to just cover it up by telling you it didn't happen.
     
  5. Shari

    Shari IsItFridayYet?

    I'd keep an eye/ear on the doctor with regard to the hand cutting off comment, but...we all have bad days. Otherwise, this guy seems to have a handle on him.

    Kudos to you for all you've done for him.
     
  6. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Janice,
    The hand cutting comment would have me so angry. It does seem like they are gaining more knowledge about Elijah which should be helpful. Hugs.
     
  7. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    If I comment on the hands thing my post will be banned and so will I. I have a different take on the care your son is getting. JMO, but here I go ;)
    Who IS this doctor you talked to? Wasn't your son JUST removed from ALL his medications, like pronto, and the doctor expects him NOT to be a basket case while his body gets used to losing THOSE medications and getting NEW medications? I personally feel like these folks in the hospital are NOT good professionals and I wouldn't take a whole lot of what they say seriously. As somebody mysefl who had to go off even ONE medication cold turkey, I was crazy for two weeks, and tried to slam the car into the garage wall. I could not control myself, could not sit still, could not think. Finally I was put back on a milder form of the drug I'd been removed from and I returned somewhat to "normal." It was hell. I can't believe that the drug removal is being disregarded. They can't possibly see what Elijah is like while his body is still in turmoil from all those fast medication chances which in my opinion are irresponisble and poor medicine.
    As for saying "I doubt if he will ever be stable" grrrrrrrrrrrrrr. I had somebody once say that about MY son. The doctor insisted that because he had been drug exposed in utero by his birthmother that my son had Fetal Alcohol Syndrome (FAS). He doesn't, but he he had no qualms about saying, right in front of my four year old son, "THere is nothing we can do about THEEEEEESE kids!" THen when I gasped and said, "How can you say that in front of him?" he chuckled (yes, chuckled) and said, in a condenscending voice, "You can't really think he understands."
    My son is a stable, productive fifteen year old boy today. He does not have Fetal Alcohol Syndrome (FAS), bipolar, ADHD or any of the other diagnosis. he was given early on. He is on the autism spectrum, and there is a lot of hope for that. I'm not saying that your son isn't bipolar or autistic or ADHD or all three, but I do think you should ride out the hospitalization then see a brand new neuropsychologist, unrelated to these people in the hospital. I'd also get a new psychiatrist. I know first hand the horrible feeling of having your medications changed suddenly and quickly and it's not pretty for anybody, especially can't be comfortable for a child. And it takes more than five days to settle once all these changes are made.
    I'm really angry at the folks who are treating your son. His hypersexuality could be out of control because of all those medication changes too--nobody can know what he is really like now, with all that other stuff going on. Another big grrrrrrrrrr...and (((hugs))). Hang in there. Use your mommy gut. It's probably better than their observatioins, even with their fancy degrees. I have sadly learned that the degrees aren't everything.
     
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