July 11, 2012
Exactly a year ago today I posted on our experience at Mercy Options--our last hope at the time for intensive therapy. I remember it very well, because July 11th is my birthday. We were told by a physician, and Mercy Options staff that our insurance was now accepted for autism services. Ironically, our appointment was exactly the same day a year later. I thought this year my birthday "present" would be the gift of therapy for Aiden. Unfortunatly, I was very wrong. When we arrived today, they didn't have us on the schedule. I cried softly and told them that we had already waited a year. "We already know he is autistic. I just want him to start therapy" I said. The receptionist called someone to come talk to us. AGAIN, I told her our story and what insurance we had. I filled out the paper work AGAIN, and waited to see the doctor (it was our "lucky" day because she had a cancelation).
Aiden and I entered a cozy little room full of toys to play with. Immediately the doctor told us that our insurance was NOT accepted, and we would have to wait the final year for the Waiver Program. "It is very discouraging for parents and therapists" she said. She offered to give Aiden a "creative diagnosis" so he could receive therapy once a week at the office. You want me to label my son again? I thought. "With what diagnosis?" I asked. "Stress, anxiety, behavior concerns..." she said. No thank you. And what are you going to do? Sit on your couch and talk to him about his "problem"? I thought. He needs intensive therapy! Instead, I voiced that children were falling through the cracks even though ALL THE RESEARCH says early therapy is key--especially before 5! "30-35 hours a week proves effective" she said (nice job active listening lady. I learned that in school too). I expressed my concern that Aiden may never get therapy, because he will be in school full-time by the time we are off the waiting list. That would mean 20-30 hours of additional therapy/week. I don't think that is healthy for any of us. We would never be able to leave the house. Yet, programs will not accept you if you don't do at least 20 hours/week. No more weekends away, no more walks at night, no more playdates. We would have to be home for therapy. That makes sense to me if Aiden was sitting in a corner all day rocking his time away, but not when his needs require just a little extra to help him overcome his "moments of strangeness".
"What concerns do you have with Aiden?" she asked. I started to describe Aiden's "moments," but I couldn't continue. I just cried. I was re-living the nightmare I already lived a year ago, and my heart couldn't take it anymore. I thanked her for her time, and walked out of the room.
I will keep Aiden on the waiting list, but my greatest hope is that he overcomes his challenges before that time. Heavenly Father knows best, and maybe Aiden doesn't even need what these programs have to offer. That leaves me waiting and praying for Aiden to continue to progress on his own. It is strange changing his diaper. He seems too old for that. New toys facinate Aiden, and he obsesses over them. If one is lost, it is a nightmare for us. Children his age try to talk to him, but he doesn't respond. He slaps his head and falls to the ground at random. I can write them down now, but somehow I just couldn't tell the therapists these concerns. I don't want them to be made light. Everyone says "Aiden will be just fine". I don't believe that means I should sit around and do nothing for him. It hurts that I can't help him. It hurts worse that the "theories" surrounding autism point the finger at me. Aiden got a ton of antibiotics when he was a baby, and I gave him his shots, so it is all my fault. It is mentally killing me to read about it. Destroying my very spirit so much, that I get down on my knees and pray for guidance and peace. I have decisions to make for Ashton now. I question my every move medically and nutritionally with him. I have little faith in my own eduction or in science/the medical field anymore. Why do alternative therapies vary so much from traditional ones sometimes? Some people have very strong opinions one way or another, but I'm just confused, upset, and frustrated. I want this chapter to be over, but I may have to relive it with Ashton. I keep praying to Heavenly Father to help me. To bless Ashton to be healthy and strong. There is promising research that some children with a family history of autism somehow "rewire" their brains to fight it. Please. Please. Please "rewire" Ashton's brain Heavenly Father. I don't think I'm strong enough to live this again.
No comments:
Post a Comment