It's interesting to go back and look at the blog; when I started it, how hard things were, how hard they continued to be and where we are today.
This week you turned 10 and got the one present you really wanted, an iTouch! It's attached to your fingers and you don't want to put it down. There's so much to say to you but it's been a long time since I have written here and an even longer time since I tried to put everything into words that are inside me. I don't think I will get there tonight just know that I love you and I am really proud of how hard you have worked the past year on yourself.
Friday, February 5, 2010
I have been fighting for over 2 months (my recent battle) to get Timmy the help he needs while he is still young. I have visited RTC's in New Jersey and I am sad to say the population they serve is not for children on the Autism Spectrum. That means the staff is not trained properly to work with these special children nor do they even understand it. The places I have seen were dark, dirty, depressing and not a place I would ever choose to place him. Instead with promises of limited supports I am bringing him home on Monday. It's a really wacky system we have here in NJ. They haven't even begun services yet they are already telling me we will be losing some of them in 45 days. You see it isn't about what Timmy needs to succeed, it's about a numbers game. They are not very happy with me, I have filed a grievance against the Department of Behavioral Health in NJ. There are not following their own published policies, so I filed a formal grievance. I hope for them I receive the response I have been promised. They have 5 days which is up tomorrow. There are laws that protect special needs children and fortunately there are some great groups out there that I will reach out to. I hate to say I will have to sue the State of New Jersey to get them to follow their own documented polices but I may have to. I am not giving up on Timmy or myself!
Saturday, January 30, 2010
i just don't understand why Haiti is more important than our children's future. Keeping the children in the same state with their family isn't always the best or closest option when they need intensive treatment. The agencies refuse to look at a placement out of their own state even if their own policies say they will. It seems that if a child has Multiple Disabilities the appropriate agencies designed to help pass the buck from one to the other. Hey DDD should be covering this so call them, hey Mental health should be covering this so call them, hey the school district should be paying this so call them, wait do you have SSI for him yet? You need to call them, Medicaid should be covering this. It's a viscous ugly expensive circle. Why is there not one single agency that handles our children's needs? Why are we passed around and passed around, it's a merry go round that doesn't stop. I have now written to my Governor, call my senator, contacted my congressman. What do they say, well so far when they have responded? They say call the 5 different agencies I have already called. The devastation in Haiti is horrible and the people of the US including myself have reached into our pockets to help. What the politicians and media don't understand is the devastation happening right now in the US to our own children. Mrs Obama has commercials asking us to help Haiti, why doesn't Mrs Obama do a commercial to help the children in her own country. No we didn't have an earthquake, what we have is a really screwed up fractured system that isn't helping our own special needs children. WAKE UP AMERICA!