jcox
New Member
We have gone to visit Elijah twice. Yesterday when we went we met with the social worker assigned to his case. She just asked questions about him. When I answered them she said everything I mentioned were Aspergers or Pervasive Developmental Disorder (PDD) things. They are strongly thinking he is Bipolar and Aspergers. They also told me his always seeming confused is from the Autism. They told me it is like trying to put a square block into a round whole. It will not happen unless you change the whole to accomodate it better. She said that is what we and the school need to do for Elijah. He did not eat anything yesterday and said he would not until we came. When the worker left the room he told me he was nervous in there because it is too busy. I explained to the social worker and the nurse and they talked with him about what they could do to make him more comfortable. When we got there in the afternoon he ate a few bites of sandwich, a cucumber, a couple chips, and a few bites of fruit. Then said he was done. He seemed happy to see me greeting me with big hug. He kept asking all the while during my visit with the social worker when could see he me. Then I visited with him for about fifteen minutes. They asked me to tell him he needed to eat so I talked with him about that. Then he said he wanted to go lay down. So I tucked him in and he said "Mommy you can please go now" so I left. About ten minutes later on the way home I get a phone call saying a few minutes after I left he began crying saying he wanted me so they let him call. They have been letting him call when he wants which is really good. They are helping him with all the things I was worried about. Yesterday he would not participate in the groups they have. Today we went to see him again. My hubby came this time. He did not go yesterday because he does not like to get upset and was not sure if he should or not because sometimes he gets frustrated with Elijah. He never does anything wrong to him, or loses his temper with him, but his body language might state he does so he decided not to go. This morning Elijah called and said "Mommy when you come today can you please bring daddy"? So I did. He agreed to go today. We get there during group time. They knew when we were coming, but still had him go to group. He gave us hugs and said "I have to go back in my group so I can get home better". The worker told me how they explained to him about the groups and told him he needed to participate so he could get home. So we let him go back in. We walked around the hospital for about twenty minutes and then went back up where he was waiting for us. He did not finish group. They told me he made a friend today at lunch time and did participate some at the groups today. He ate breakfast and lunch today. We visited for about ten minutes if even that long with big hugs. Then he told us "I'm tired. Want to go to my room"? So we talked to the nurse who tried to convince him to play a game with us etc. He did look excessively tired today we told them. He did not nap like he usually does at home so I think that is why, or it could be the medication changes. We went and tucked him in. I asked him if he wanted me to stay while he rested and he asked why. Then he said twice "You can go now. Love you." So we left. Seems crazy to drive an hour and forty minutes away for a ten minute visit, but I am sure those few minutes mean a lot to him.
Yesterday while meeting with the social worker, the nurse came in. She said that she wanted to set up a consult with the nutritionist because Elijah's triglicerides and cholesterol were both very high. A couple hundred higher than what they were supposed to be. That is scary because heart disease runs in my family. My grammy died in her fifties from it... my mom's mom. My dad had aneurisms before and clogged arteries, my mom's brother has a pace maker since his fourties... not good.
The psychiatrist raised up his Lithium last night because he was not near the therapeutic level. He added another 300 mg at bedtime. So now he is on Lithium, Abilify, Clonidine only at bedtime with the other three doses eliminated, and Cogentin for the side effects. They also have a prn order for Risperdal, but he has not needed it. He has not shown them the Elijah that the school and my family know. He has not had even one behavioral issue in there. He usually has a honey moon period at new places until he feels comfortable. I don't know if they will see the Elijah we all know or not. They can not call the school this week because of vacation, but did contact his psychiatrist at Tufts and talked with him. No idea when he will be home. The nurse today mentioned to me that he should be home soon if he keeps eating and doing the groups, but did not mention when soon is. I don't want to rush it because I know he needs to be there right now. They are taking good care of him and the rest of the kids. It seems like a good place. I am comfortable with them taking care of him. He does not seem upset about being there as I thought he would. He seems alright, but nervous and tired. I am actually not as sad and heartbroken as I thought I would be. I do miss him dearly with all my heart, but know I did the right thing. He is where he needs to be.
Thanks for all the continued support and prayers.
Janice
