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....
No comments:
Post a Comment