My favorite local mental health agency just called. They have found him a Therapist and a Behavioral assistant. They are going to give us 3 hours of a Therapist and 10 hours of a BA. Now this is not even close to the recommended hours on his hospital discharge but hey it sure beats what we have now, nothing! I can hope to keep him from regressing and hopefully if they also recommend him needing more than what they are approved for currently it will happen. I am not sure when this will start but today isn't soon enough in my eyes. Next week is Thanksgiving which means it's me and my boy from Wednesday 1:00 pm until Monday am without help unless they get these services in place by then. I guess now is the time to plan how we are going to get through this time and figure out how to stay busy in a positive way.
I have to say the hardest part for me in all of this is having a set schedule and sticking to it exactly. This is what I am told he must have this but it sure is the most difficult thing for me. I mean it's even down to when we eat, shower, watch TV, play a game, etc etc....
Any ideas would be welcome,, so far we have Turkey Day with Auntie, A day with our friends, swimming at the YMCA
I find myself pouring out words, it's like someone turned on a faucet. It's been so insane for so long and I am trying to find a way to make it sane again. Is that even possible? Am I looking for something that is never going to happen? What is sane anyway? Is that a day that goes by without a major meltdown with myself or my GS? Why is it that when he is going to be gone during waking hours I just want to sleep instead of doing something productive, like the damn laundry I hate putting away?
Oh and Happy Birthday Daddy, I miss you every day.
Friday, November 21, 2008
Day 6 - Home from the Hospital
After reading tons of blogs I thought it might be a good way to document our struggle to find help. I am a single paternal grandparent raising my 7-1/2 yr old grandson who is now diagnosed with PDD-NOS. Where to begin? I could start with the 10 doctors, 10 psychologist, multiple medications and wrong diagnosis for 3 years. I could start with the struggle to find someone who doesn't want to medicate him into a coma. But I think I will just start with where we are today.
Today we woke up in a decent mood, had breakfast and got on the bus to go to school. Ah school, well the township we live in doesn't want him in their school so they have him at an out of district placement 45 minutes from home. He is picked up between 6:30 and 6:45 in the morning each school day. Now that we know his true diagnosis is this the right school for him? I know he is of average intelligence per his psychological testing, I also know he can't read yet. Is this because they aren't teaching him or is this because he is part of the autism spectrum? We had a meeting on Wednesday and I was told he is at the beginning level of 1st grade. That's what they told me last year too. I guess he didn't learn anything last year, of course that was due to his behavioral issues (per the teacher). Let's not forget this is a school for children with behavioral challenges, they are suppose to have in place programs to help deal with his challenges and still educate him. The latest thing out of our meeting Wednesday is they will send home homework for us to do every afternoon and the district will do an education assessment, which they have up to 60 days to complete. So we are in limbo at school, he isn't learning and we have to sit and wait for another assessment. Meanwhile back at the ranch the new school district social worker assigned to my GS calls me on Thursday and says "You have to come in right away and do a social assessment with me about GS" oh and if you don't do it right away it is going to delay the whole assessment process. This person has who has met my GS once is holding his education in her hands and on hold. She is sending his information to schools I do not want him to attend and ignoring my request for him to be mainstreamed. I think I have quoted "Wright's Law" to her 15 times since she became his social worker. Least restrictive environment and she is pushing for a very restrictive hospital school over 1 hour away from our home since she has a high school student who went there.
Meanwhile at home we are trying to implement the Applied Behavioral Analysis program they had at the hospital he was in for 6 weeks. The local agency who is suppose to put a therapist, BA and a mentor in place for us at home has failed to do so yet. The hospital has recommended he get 20-25 hours weekly with a BA, 4 hours with a therapist and 10 hours with a mentor along with respite for me. I have to come in to work early and leave early to try and keep my hours and keep my job. Thank god for my sister who is helping me with him after school 2 days a week right now. There is no after-school program for him available so when he isn't in school I have to be home. I am not a therapist and no matter how hard I try I really need help to make it with him at home. GS will not sleep in his own room, he will not go upstairs and go to bed unless I go with him and every day my housework gets more behind. I am frustrated beyond belief with the broken system. My GS is starting to regress to old behaviors and the local agency is telling me that getting these services in place "take time". Yes more of the old "take time". It's so hard not to get depressed and angry and have feelings of isolation. I have to apply to SSI for him, I have to apply for the DDD for him, these agencies need documentation beyond belief. When do I have time to fill out all of these papers? Maybe I can do it during my drive back and forth to work, or maybe I can do it when he falls asleep at night and I need to get laundry done. Oh and let's talk about the 100 calls I need to make to keep pushing for help for us during the day. Yes there is another agency that is suppose to "Support the family". They have been basically non-existent to us, anything they promise they don't follow through with, they don't come to appointments, they constantly reschedule every time they are suppose to visit us. Then we don't hear a word from them for weeks and they call and say "hey we are here to help, what can we do?" My response is nothing since that's all I can expect from them.
The local county mental health agency wanted to put him in a "group home" just so they wouldn't have to deal with us. This is the same agency who is suppose to advocate to keep a child at home. He is 7 years old, how can it be better for him to be away from his family after being abandoned by his own parents? Oh and let's also not forget New Jersey has the highest rate of autism in the country. I think I could write a book about what's happened to us the last 3 years....
Today we woke up in a decent mood, had breakfast and got on the bus to go to school. Ah school, well the township we live in doesn't want him in their school so they have him at an out of district placement 45 minutes from home. He is picked up between 6:30 and 6:45 in the morning each school day. Now that we know his true diagnosis is this the right school for him? I know he is of average intelligence per his psychological testing, I also know he can't read yet. Is this because they aren't teaching him or is this because he is part of the autism spectrum? We had a meeting on Wednesday and I was told he is at the beginning level of 1st grade. That's what they told me last year too. I guess he didn't learn anything last year, of course that was due to his behavioral issues (per the teacher). Let's not forget this is a school for children with behavioral challenges, they are suppose to have in place programs to help deal with his challenges and still educate him. The latest thing out of our meeting Wednesday is they will send home homework for us to do every afternoon and the district will do an education assessment, which they have up to 60 days to complete. So we are in limbo at school, he isn't learning and we have to sit and wait for another assessment. Meanwhile back at the ranch the new school district social worker assigned to my GS calls me on Thursday and says "You have to come in right away and do a social assessment with me about GS" oh and if you don't do it right away it is going to delay the whole assessment process. This person has who has met my GS once is holding his education in her hands and on hold. She is sending his information to schools I do not want him to attend and ignoring my request for him to be mainstreamed. I think I have quoted "Wright's Law" to her 15 times since she became his social worker. Least restrictive environment and she is pushing for a very restrictive hospital school over 1 hour away from our home since she has a high school student who went there.
Meanwhile at home we are trying to implement the Applied Behavioral Analysis program they had at the hospital he was in for 6 weeks. The local agency who is suppose to put a therapist, BA and a mentor in place for us at home has failed to do so yet. The hospital has recommended he get 20-25 hours weekly with a BA, 4 hours with a therapist and 10 hours with a mentor along with respite for me. I have to come in to work early and leave early to try and keep my hours and keep my job. Thank god for my sister who is helping me with him after school 2 days a week right now. There is no after-school program for him available so when he isn't in school I have to be home. I am not a therapist and no matter how hard I try I really need help to make it with him at home. GS will not sleep in his own room, he will not go upstairs and go to bed unless I go with him and every day my housework gets more behind. I am frustrated beyond belief with the broken system. My GS is starting to regress to old behaviors and the local agency is telling me that getting these services in place "take time". Yes more of the old "take time". It's so hard not to get depressed and angry and have feelings of isolation. I have to apply to SSI for him, I have to apply for the DDD for him, these agencies need documentation beyond belief. When do I have time to fill out all of these papers? Maybe I can do it during my drive back and forth to work, or maybe I can do it when he falls asleep at night and I need to get laundry done. Oh and let's talk about the 100 calls I need to make to keep pushing for help for us during the day. Yes there is another agency that is suppose to "Support the family". They have been basically non-existent to us, anything they promise they don't follow through with, they don't come to appointments, they constantly reschedule every time they are suppose to visit us. Then we don't hear a word from them for weeks and they call and say "hey we are here to help, what can we do?" My response is nothing since that's all I can expect from them.
The local county mental health agency wanted to put him in a "group home" just so they wouldn't have to deal with us. This is the same agency who is suppose to advocate to keep a child at home. He is 7 years old, how can it be better for him to be away from his family after being abandoned by his own parents? Oh and let's also not forget New Jersey has the highest rate of autism in the country. I think I could write a book about what's happened to us the last 3 years....
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