Thursday, January 1, 2009
Tuesday, December 30, 2008
A Family Meeting with CMO, the "Therapist" and the "BA"
Oh boy, oh boy! Tomorrow morning at 10:00 am I have my favorite people coming to have a family team meeting to talk about the lack of help we have been receiving. I look forward to having my daughter join us, she works at a school for special needs adults and hopefully my very vocal sister will also grace us with her presence. It should get rather interesting when the "Therapist" tells us finally what his game plan is to help Timmy. So far he hasn't shared it with anyone, not me, not Timmy and not the "BA" who has a degree in English but has never worked with a child on the Autism spectrum or had any formal guidance or training working with children in general. So this young man is a very nice guy however is he the right person to help Timmy? I don't think so, here we have this nice young man who's heart is in the right place trying to help a child when he has no clue where to even begin.
We have the "Therapist" who isn't helping us and the Behaviral Assistant who isn't helping us coming over to talk about how they are going to help us. Oh and I forgot we have the Family Support Organization person maybe coming too, this is the person who is suppose to be helping provide me with emotional support and guidance through the system, this is the person who calls maybe every 2 months when she remembers us and says "I didn't know Timmy was in the hospital", well lady if you had been doing your job or returned phone calls maybe you would have known. Then when she does call she wants me to give her a 2 hour history on what's been going on, nope not going to do it anymore.
We also have my Child Management Organization Person coming, this is a great young lady who honestly cares about us. She has been supportive and present and keeps trying to get us the help we need. Sad as it is her hands are tied, everything she does has to be approved by "higher" ups and that can add up to a few days to more than a week of delays. I do feel lucky to have her as our worker, I know she cares about Timmy and will always do everything she can to fight for him.
Ok so I have a bit of the glass is half empty going on right now. We are about 8 weeks post hospital now and have basically been on our own. The hospital recommended intensive outpatient therapy for Timmy or 20 Hours of a BA and 5 Hours of a Therapist. The local county agency has granted us 3-4 hours of Therapy and 10 hours of BA. They have contracted this to another agency who is suppose to be doing these services for us. We have yet to even receive that weekly and the 10 BA hours are basically a waste of time. I am training the BA which is a huge mistake since I need help learning how to deal with my special guy, DOH! Oh and as far as intensive outpatient well we have been on a waiting list for the only one in the area for 5 months now, I am told we are still at the top of the list but no openings yet. Yes, I call to the point of where they may put us at the bottom of the list soon!
I don't know, I suppose coming home from the hospital I had unrealistic expectations. I really thought that we would at least get some help and the help would come from people with experience dealing with PDD-NOS in children. Silly Silly me!
I didn't invite the school social worker who is trying to get me to take Timmy out of his current school in the middle of the day to go see more schools that she feels are better for him. Ok let's not forget this child has anxiety issues, I have not looked at the schools myself yet and we have both missed a boatload of school and work with the hospital stays. I even got a nice letter from her stating that it is "normal" to go and see these schools with the child so they can interview us. Ok fine interview us but not until I have seen the place first and I feel there is a chance it may be appropriate for him, then and only then will I pull him out of school to go see another school and start the long process of explaining why he "MAY" be going to another school. Ok, I am digressing and need to get back to the meeting in the morning.
Why can't I be rich like Jenny McCarthy and hire all the help we need to make Timmy as successful as possible? I mean seriously, it's a known fact that the early interventions with Autism have the best outcomes, so why can't we get what we need, where is it? Should we wait until he is a teenager and self medicating because he never was taught the tools he needs? Or how about when he drops out of school or gets violently angry with someone and ends up in jail? Will he get help then or will it be too late?
I really just want to get us the help we should be getting, I don't care if the "Therapist" thinks he is spoiled, but I do care that the BA told Timmy he is a "spoiled brat" and I do care that the "Therapist" call him that also. Timmy has a way of pushing people to places they have never gone before. I get that because he does it to me all the time however it is unacceptable to have his BA or Therapist go there. So tomorrow I will sit with the strong women in my life beside me and demand these people do what they are being paid to do, Help me Help Timmy!
Oh and can someone please come help me fill out all this paperwork so I can get him help from the Department of Disability and Social Security?
A happy moment!
We have the "Therapist" who isn't helping us and the Behaviral Assistant who isn't helping us coming over to talk about how they are going to help us. Oh and I forgot we have the Family Support Organization person maybe coming too, this is the person who is suppose to be helping provide me with emotional support and guidance through the system, this is the person who calls maybe every 2 months when she remembers us and says "I didn't know Timmy was in the hospital", well lady if you had been doing your job or returned phone calls maybe you would have known. Then when she does call she wants me to give her a 2 hour history on what's been going on, nope not going to do it anymore.
We also have my Child Management Organization Person coming, this is a great young lady who honestly cares about us. She has been supportive and present and keeps trying to get us the help we need. Sad as it is her hands are tied, everything she does has to be approved by "higher" ups and that can add up to a few days to more than a week of delays. I do feel lucky to have her as our worker, I know she cares about Timmy and will always do everything she can to fight for him.
Ok so I have a bit of the glass is half empty going on right now. We are about 8 weeks post hospital now and have basically been on our own. The hospital recommended intensive outpatient therapy for Timmy or 20 Hours of a BA and 5 Hours of a Therapist. The local county agency has granted us 3-4 hours of Therapy and 10 hours of BA. They have contracted this to another agency who is suppose to be doing these services for us. We have yet to even receive that weekly and the 10 BA hours are basically a waste of time. I am training the BA which is a huge mistake since I need help learning how to deal with my special guy, DOH! Oh and as far as intensive outpatient well we have been on a waiting list for the only one in the area for 5 months now, I am told we are still at the top of the list but no openings yet. Yes, I call to the point of where they may put us at the bottom of the list soon!
I don't know, I suppose coming home from the hospital I had unrealistic expectations. I really thought that we would at least get some help and the help would come from people with experience dealing with PDD-NOS in children. Silly Silly me!
I didn't invite the school social worker who is trying to get me to take Timmy out of his current school in the middle of the day to go see more schools that she feels are better for him. Ok let's not forget this child has anxiety issues, I have not looked at the schools myself yet and we have both missed a boatload of school and work with the hospital stays. I even got a nice letter from her stating that it is "normal" to go and see these schools with the child so they can interview us. Ok fine interview us but not until I have seen the place first and I feel there is a chance it may be appropriate for him, then and only then will I pull him out of school to go see another school and start the long process of explaining why he "MAY" be going to another school. Ok, I am digressing and need to get back to the meeting in the morning.
Why can't I be rich like Jenny McCarthy and hire all the help we need to make Timmy as successful as possible? I mean seriously, it's a known fact that the early interventions with Autism have the best outcomes, so why can't we get what we need, where is it? Should we wait until he is a teenager and self medicating because he never was taught the tools he needs? Or how about when he drops out of school or gets violently angry with someone and ends up in jail? Will he get help then or will it be too late?
I really just want to get us the help we should be getting, I don't care if the "Therapist" thinks he is spoiled, but I do care that the BA told Timmy he is a "spoiled brat" and I do care that the "Therapist" call him that also. Timmy has a way of pushing people to places they have never gone before. I get that because he does it to me all the time however it is unacceptable to have his BA or Therapist go there. So tomorrow I will sit with the strong women in my life beside me and demand these people do what they are being paid to do, Help me Help Timmy!
Oh and can someone please come help me fill out all this paperwork so I can get him help from the Department of Disability and Social Security?
A happy moment!
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