Forums April 23, 2010 - Stand Up for Your Health I am tired of getting all this false hope.

I am tired of getting all this false hope.

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Icon_missing_medium bensonsforever 1 post

I have a 12 year old child with down syndrome and autism whom we love very much. He is mentally age two and has been in the terrible twos for a long time.  I am tired of getting all of this false hope.  The system doesn’t watch out for children with special needs.  My husband has a good job and we have good insurance.  We are struggling with our son because he has oppositional definate disorder, anxiety, thyroid problem etc.  The physcologist recommended he be in a impatient program.  We called our insurance and they said they could help treat those problems but as soon as they found out he had downs syndrome they said, “Sorry we can’t help.”  In the meantime he is on medications for his behavior (which only takes the edge off, but is very necessary for him), which make him gain weight, which in turn throws his thyroid medication off which in turns makes him hungry and he gains more weight.  The only hope we have is to try and manage him until he is 18 and has programs available to him, which is unfair because for the next 6 years his behavior is only going to get worse as well as his health.  Before anyone tells me how bad of a mother I am, know that we have searched high and low and we have even had a meeting with his case worker, the dept. head of Human Services for our state and the head of dept. of disabilities.  You can’t go higher than that. The bottom line we were told is that there is no money unless you are in poverty or rich enough to pay for services yourself.  They did give us the options us putting him in the fostercare system.  I was never so offended and heartbroken. We will always still lookout for his wellbeing and keep trying, but I am just tired of these stories which are one in a million.  I am so grateful these families have had sucess, but it is not the norm.

 
Icon_missing_medium dannette 3 posts

My heart goes out to you. I also have a child with Autism – ADHD it is not an ease job we have, but dont give up hope. We have had alot of bad times too I can’t tell you how many teachers have told me my son was Oppositional Definate. We have made alot of head way if you can get this book THE EXPLOSIVE CHILD by ross W. Greene, Ph.D. it helped me into his head. Like with all books I dont agree with all of it, but it helped. Kids with Autism have sensory problems this book helps interpret and gives you interventions to use. So many behaviors problems are do to sensory issues. Asperger Syndrome and Sensory Issues BY: Brenda Smith Myles.
My son had so many behaviors problems they said he would never be mainstreamed. They wanted to him in a EI class we said no the school had a behavior specialist come in to work with the school and us. He is mainstreamed and doing great. Do we still see oppositional behaviors yes, but only 5% of time when he had been 95% before. Good luck.





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Forums April 23, 2010 - Stand Up for Your Health I am tired of getting all this false hope.

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