Today I had to drop off some paperwork at Carson's Ped to be filled out for the state. We got some great news last week that after two and a half months of dealing with four social workers and more documentation than I have ever seen - Carson was awarded priority status by the state of Michigan for a Children's waiver. What this means is the state of Michigan will cover his OT, PT, Speech, Music Therapy, Art Therapy, and Respite care. This waiver is not based on income and is solely based on the child's needs/diagnosis. This is a huge blessing and one that we did not think we would even be considered for. Honestly, when the social worker was telling me about the program she told me that the wait could be over a year. The state only gives out so many and you have to wait until one opens up. We applied and I figured it would be a year or never when we finally heard anything.
In the mean time, I was moving forward - full force on another program. This other program is based on diagnosis and the parents income. Since Jay and I make more than the top qualifying income (really not that much at all) we had to do a full financial disclosure and appeal the process. This program wanted 1,200 a month to offer our child services that could greatly improve his life. After two and a half years of out of pocket, we simply could not afford the 1,200 a month. I was in the process of another appeal when I got the call for the waiver last week.
So, long story short...I had more paper work to drop off to have filled out. I made an appointment with the ped. office manager as, I did not want any errors to be made to ruin our chances of this waiver. While there she asked me if I would mind talking to one of their nurses who's grandson was just diagnosed.
Wow. It was like reliving the past two plus years. They just found out. Her daughter can't even say the word - autism. I know how that feels. They are deal with insurance, case workers, IEP programs, etc. It is so overwhelming. As a grandmother she is worried about her grandchild but also her daughter.
Let's just say my 10 min appointment turned into an hour. I can't tell you how much I hate that this world of autism is getting smaller and smaller. As the epidemic grows, I am meeting more and more people affected by this. I hate that!! Three years ago, it was the last thing on my mind. Now I know other moms, dads, celebrities and am even starting to feel more like an experienced autism mom.
It hit me like a ton of bricks that this person was asking me advice. I still feel like there is so much for me to learn. Jay and I just do what we think is best for OUR kid. What works for one might not work for another. That is what is so hard about this disorder.
The greatest blessings are seeing it all pay off. I am seeing my "true" son more and more. I am seeing him get a sense of humor and learn how to control his emotions. I see him trying to interact with other kids more and more. I see him having more joy and awareness of his surroundings. For these things, there is nothing I would not do.
So, I fill this grandma in on all that we have tried and the hoops we have jumped through. I realized that by the time I left, I was really pumped up. I called Jay before I got out of the drive and was telling him about the conversation. It is strange how we don't even know her grandson but feel pain for he and his family. This world of Autism is becoming too common. With each person I met affected by this, I am comforted to not feel so alone but at the same time, I am pissed that any of us have to deal with it in the first place.
Jay and I always count our blessings - we know it could be so much worse. I follow other blogs of families going through things I never want to think about. I have talked to other parents at therapy centers and heard horror stories, I have seen young children alive but in a shell of a body caused by autism. No connection, no emotion, no communication.....nothing.
What makes this world of autism so painful is that - you see the disconnect in your child's face. You see the fear in them that you cannot take away. At times, you even see a glimpse of their "real self". The person on the inside that is not able to get out. To me, that is what hurts the most. Knowing that he is in there - somewhere - trying to get out - trying to communicate- and just not finding the words or way. That is my job. I will find it for him. My voice will be his until he can do it all on his own. I know he will someday! I have 100% confidence that my Carson will live a happy and productive life. I will never give up providing every opportunity for him to do just that.
For all the other moms and dads - keep the faith. We all have a burden to carry. Ours might be this world of autism, for someone else it is somthing else. I don't have pity parties feeling as though we are unique. We are not. This is just our battle. But anyone with a child will tell you - there is NOTHING you would not do to help them. Everyday - that is all Jay and I are trying to do!