Learning to play the hand dealt...
It has been a year of new information, new routines and lots of new information. About a year ago, June, we got confirmation that our daughter Millie was not developing typically. She was showing more than a two year delay in expressive speech, and shocking delays in all other areas as well. I knew she was developing slower than her peers, but until I got the evaluation from Early Intervention, I had no idea how bad it was. The word 'autism' got batted around all year, me trying to avoid it landing on Millie and her therapists trying to get me to accept its application to her. On June 24, 2009 Millie was officially diagnosed with moderate autism (closer to the severe end of the spectrum than the milder end). The monster I had been trying to avoid all year had finally and ominously landed on my precious little girl. It felt like the wind had been knocked out of me, like I had been beaten up and left for dead. Well, almost.
Over the last 3 and half weeks I have been trying to figure out how to play this hand I have been dealt. I have realized that Millie is still my precious little girl, she is not her diagnosis. However, there is a monster on her back. I intend to fight that monster, weaken it, and hopefully remove it from her never to return. I'm reading as much as I can about autism, how it is treated and what others have done. I know that I want to get Millie started in ABA therapy, with discreet trials. The problem is getting the money to pay for it. Medicaid will not pay for it, nor will most insurance companies. It is the best therapy for autism out there, will great success stats. So, I have begun the process of applying for disability Social Security supplimentary income. I also intend to go after private funding. Millie will get OT, PT and ST paid through Medicaid. We hope we can try KinderMusic, cranial sacral therapy and horse therapy. All of this depends on finding money. My getting a payroll job is not a viable solution (we'd get more help without it and I don't have time). ABA therapy is usually managed by one or both parents, and it is a full time job in itself. I'm also looking into how we may want to do the school thing, from public school to home school using the Charlotte Mason approach. So much to learn, so little time to do it.
We have also been told that our chances of having another child with autism, because we have one and because she's a girl, are 1 in 6 (25 times greater than the average population). This throws a wrench into our plans for more children. My having had two miscarriages makes that scary enough, but the risk of another autistic child makes it much harder. We both still want more children. We think we are willing to take the risk of having another autistic child. We are praying about it. We are also getting information about adoption. So much to process, no fast decisions are going to be made!
Over the last 3 and half weeks I have been trying to figure out how to play this hand I have been dealt. I have realized that Millie is still my precious little girl, she is not her diagnosis. However, there is a monster on her back. I intend to fight that monster, weaken it, and hopefully remove it from her never to return. I'm reading as much as I can about autism, how it is treated and what others have done. I know that I want to get Millie started in ABA therapy, with discreet trials. The problem is getting the money to pay for it. Medicaid will not pay for it, nor will most insurance companies. It is the best therapy for autism out there, will great success stats. So, I have begun the process of applying for disability Social Security supplimentary income. I also intend to go after private funding. Millie will get OT, PT and ST paid through Medicaid. We hope we can try KinderMusic, cranial sacral therapy and horse therapy. All of this depends on finding money. My getting a payroll job is not a viable solution (we'd get more help without it and I don't have time). ABA therapy is usually managed by one or both parents, and it is a full time job in itself. I'm also looking into how we may want to do the school thing, from public school to home school using the Charlotte Mason approach. So much to learn, so little time to do it.
We have also been told that our chances of having another child with autism, because we have one and because she's a girl, are 1 in 6 (25 times greater than the average population). This throws a wrench into our plans for more children. My having had two miscarriages makes that scary enough, but the risk of another autistic child makes it much harder. We both still want more children. We think we are willing to take the risk of having another autistic child. We are praying about it. We are also getting information about adoption. So much to process, no fast decisions are going to be made!
posted by Sharyne @ 3:50 PM
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