Wednesday, August 7, 2013
I know I am not alone in this battle of rights and treatments for Autism for our children. It is a hard road to travel and just hearing other moms and their stories really does help keep the strength to fight.
My boy has come out of his dark place and is the happy full of life boy I knew. It is the scariest thing to see your child slip away and not know if he will return.
It is a humbling experience and you enjoy all the time, no matter how hard some days may get, that they are happy and here in full.
We are still jumping through so many hoops and doors are closed in our faces when trying to still seek services. In a moment of I don't know where else to turn, I tweeted Jenny McCarthy for help. She actually retweeted my plea and I am so hoping that we are connected with someone out there that will care to listen. We have paid so much money to high end doctors, therapist and still we are getting no where. It puts us on another list, or okay try this number or we will get back to you. All we want is a professional ABA therapist to join our family and help our boy in school. It doesn't seem that hard but yet we live in the worst state that offers educated ABA professionals. There just aren't enough practicing here to go around.
It is all about name dropping and who ya know. We have been put on waiting lists to get to a list for appointments with doctors, but we have found that if you drop the right name, all the sudden we are moved to the top of the real list and instantly get in to see the doctor. It is unfair to all of the families dealing with this. Once you are moved to the top you feel horrible for the person you knocked off. Just because we know a name makes us more important???? How wrong is this?
Today will be another day of phone calls to government programs and long wait times. I would love to just stop for one day and go shopping and lose myself. But taking just one day off could prove crucial. We are running out of time. They say you have until the child is 5 to really get the help you need. My child turns 5 in less than 4 months. And I know to take time for ourselves is also very important, but not having family or friends here to jump over and babysit, and we have also been told we are not eligible for respite because we have not been in the program long enough, UGH!! it is not easy to take a day for us to regain strength.
I am writing this and will tweet it out for hope that someone will come to help eventually.
If you have friends that have special needs children, offer to help. It could do so much good, more than you could ever know for that family.