buddy
New Member
I have been counting the days down to Q coming home. Now in thinking about it being tomorrow i started to worry a little. And I felt something else but can't put my finger on it. I talked with his social worker and it was a different one last night that talked to me and they made it sound different and I said, you realize that all the things you are talking about are things your staff suggested and I said it sounded good. Anyway, we got all that worked out and it was no biggie, in fact his needs assessment only needs a quick update if he needs to come back in within 30 days and priority goes to kids who have been there. They also said that they will support anything I ask for so if anything comes up to just ask. They said that any program they coulld just put him in would not be individualized enough for him so it would be better to just add to what i already have which is great by me, we were talking about going back to private Occupational Therapist (OT) and Speech Language Pathologist (SLP). They want his hippotherapy to continue for sure so that is great.
Still I feel so ?????? I have cried all day on and off. Driving down the road, crying. Pick up the kid and he is "being very rude" and "loud" on the unit waiting for me to come. I talk to one nurse I haven't been too thrilled with and she just said things about he "knows exactly what he is doing" and I had t go to my usual... SO???? There has never been a question that he knows what he is doing at the time. People with brain injuries can't stop it but they know what they are doing still. DUH. I know they are not a brain injury unit but it gets really old.
Then he was in such a mood when i picked him up for the pass and every single thing I said he sounded really annoyed. I asked him to use his nice tone of voice with me. He said (in his usual way) May you please turn on sports on the radio. I said sure and as I was doing it, he said good because other wise I am gonna have to hit you. He just can't keep it in and I didn't turn the station on but I know it just comes out so I do give him a chance. I said when you can ask and keep the words in your thinking bubble then I will turn it on. He just didn't even try. He did great at horseback riding. He got in the car and he wanted me to drive up and down the street to see which restaurants he might want to pick from. (I did, he knows every business sign in any neighborhood and often just likes to go to each one and see what they do so it is kind of a thing he does, not fun for most but it is something he likes and it doesnt hurt anyone). So we decided on Jimmy Johns and I did push him to eat it all there with me. I knwo he is locked into their routine but we need to get back to home routine. So I said...I scheduled your make up riding for Saturday and so yo get to go both days after we go home tomorrow. He was NOT happy. He said that Dr. W said he could stay till Sunday because his favorite nurse was working then and he knew she would be said if he left with no good bye and he would feel sad too. I said, well we will have to talk to drW about that---flashback to when I said that about trick or treating and thought I was gonna get it right there in Jimmy Johns-- but no, he just said, do you mean it? I said, I dont care which day, I am just excited for you to come home. so he then did seem much happier and now I have to confront the doctor on why he didn't just tell him that it depends on his medications but we are planning for Friday. He told the nurse that it was my choice and he woudl keep him till Saturday so maybe we will have to push it till Sunday morning. I would love him to come home tonight but I dont want a dangerous car ride home and that would not be the way to start our time together. If he needs to adjust the medications he has to stay anyway so????
I think, can't believe I am going to say this, I have been shielding my heart and trying so hard to gear up for him to not be the same boy I put in there. It feels like a part of him/us died. I feel like I am pulling myself back from him....I hope we can get back to where we were. It is not a typical family but at least it was moving forward. He talks so threateningly...do it or else I will fight for it....my way or the highway kind of talk. It sounds like a preschooler who is really stubborn but because he is bigger it looks worse. It is really a different tone--All in just two weeks! How can that happen. Please let it be just a response to this situation.
Still I feel so ?????? I have cried all day on and off. Driving down the road, crying. Pick up the kid and he is "being very rude" and "loud" on the unit waiting for me to come. I talk to one nurse I haven't been too thrilled with and she just said things about he "knows exactly what he is doing" and I had t go to my usual... SO???? There has never been a question that he knows what he is doing at the time. People with brain injuries can't stop it but they know what they are doing still. DUH. I know they are not a brain injury unit but it gets really old.
Then he was in such a mood when i picked him up for the pass and every single thing I said he sounded really annoyed. I asked him to use his nice tone of voice with me. He said (in his usual way) May you please turn on sports on the radio. I said sure and as I was doing it, he said good because other wise I am gonna have to hit you. He just can't keep it in and I didn't turn the station on but I know it just comes out so I do give him a chance. I said when you can ask and keep the words in your thinking bubble then I will turn it on. He just didn't even try. He did great at horseback riding. He got in the car and he wanted me to drive up and down the street to see which restaurants he might want to pick from. (I did, he knows every business sign in any neighborhood and often just likes to go to each one and see what they do so it is kind of a thing he does, not fun for most but it is something he likes and it doesnt hurt anyone). So we decided on Jimmy Johns and I did push him to eat it all there with me. I knwo he is locked into their routine but we need to get back to home routine. So I said...I scheduled your make up riding for Saturday and so yo get to go both days after we go home tomorrow. He was NOT happy. He said that Dr. W said he could stay till Sunday because his favorite nurse was working then and he knew she would be said if he left with no good bye and he would feel sad too. I said, well we will have to talk to drW about that---flashback to when I said that about trick or treating and thought I was gonna get it right there in Jimmy Johns-- but no, he just said, do you mean it? I said, I dont care which day, I am just excited for you to come home. so he then did seem much happier and now I have to confront the doctor on why he didn't just tell him that it depends on his medications but we are planning for Friday. He told the nurse that it was my choice and he woudl keep him till Saturday so maybe we will have to push it till Sunday morning. I would love him to come home tonight but I dont want a dangerous car ride home and that would not be the way to start our time together. If he needs to adjust the medications he has to stay anyway so????
I think, can't believe I am going to say this, I have been shielding my heart and trying so hard to gear up for him to not be the same boy I put in there. It feels like a part of him/us died. I feel like I am pulling myself back from him....I hope we can get back to where we were. It is not a typical family but at least it was moving forward. He talks so threateningly...do it or else I will fight for it....my way or the highway kind of talk. It sounds like a preschooler who is really stubborn but because he is bigger it looks worse. It is really a different tone--All in just two weeks! How can that happen. Please let it be just a response to this situation.