Tuesday, July 20, 2010

Change of Plans...Meet Corbett

Corbett is 4 ½  years old. Corbett has been diagnosed with Autism, Tic Disorder, OCD and Anxiety disorder. He was first diagnosed with autism at 3, though he had services for developmental delays for 6 months prior to his diagnosis. All his other diagnoses came about 6 months after his autism diagnosis when we finally found a child psychiatrist who would see Corbett at such a young age.

Any one of those would have been plenty for any parent and child to deal with, but the combination of his disabilities has been overwhelming. It seems the course of therapy for any one of the disorders adversely affects another, so we walk a fine line with trial and error. Our insurance covers NO therapy for autism and sofar has refused to pay for treatment of the other.

Until recently, life used to be filled with doctor appointments. There was the allergist for his dust allergy and immunology problems, gastroenterologist for his GERD, the ENT for his constant ear infections and strep throat, the psychologist that diagnosed his autism, his psychiatrist and his pediatrician. That doesn’t even include the numerous therapists that used to visit Corbett before his state eligibilty for services ran out when he turned three. Some children see their pediatrician a couple of time s a year. We were seeing Corbett’s pediatrician a couple of times a month. When Corbett was 2 ½ , his ENT put tubes in his ears. In January of this year, his ENT took out his tonsils and adenoids. That has made a huge difference.
I cannot stress how important his doctors have been. I owe his pediatrician everything. She has been his biggest advocate and I cannot imagine where we would be right now without her. We have left so many doctor’s appointments in frustration in tears. Our first gatroenterologist was the worst. She said we were coddling Corbett, nevermind the fact that if he laid on his back he would choke, gag and vomit all night. Oh, I wanted to strangle her. Our pediatrician found us another doctor who understood that Corbett was unable to communicate and has compassion for his suffering. I wish I could say that was the only bad experience, but unfortunately it is not. It took us a long time to find the right doctors  for my son and some of that was luck. I will never again stand by  and let my son be treated badly or be demeaned as a parent. I have learned that lesson and it has made me stronger.

I wish people would teach their children to be nice to other children who may not seem “normal.” We try so hard to teach Corbett how to interact with other children and then we will see him try to play with the kids at the park or at Chik-fil-a and so often they will shun him. It breaks my heart every time. I have shed so many tears in public. Sometimes you just have to go to the grocery, even though your child is having an awful day and you have only had 4 hours of sleep and no shower and when someone shoots you the “bad parent of a rotten kid” look, it is too much. 

I wish I didn’t care what other people think, but I do. We have a system now. We only go to the grocery by our house, and during the slow hours. We only go to a couple of restaurants and either eat late or early to avoid the crowds. The mall is almost impossible. We only go to the park when it is not crowded.And there is ALWAYS a contingency plan. We always are ready to pack up and leave if we need to. We have left meals uneaten, full grocery carts and playdates right after we arrive. I dont mind putting up with Corbett’s outburst s and screaming, but I can only take so much social scrutiny before I  crack. I admire people like my sister-in-law (who also has an autistic son), who confront people who are rude to her.

I have learned so much about people these last few years. I have been moved to tears by a stranger’s kind words or actions. There are not words to let these people know how much their kindness impacts us. The man who let us skip line in the post office when everyone was staring as Corbett beat me about the head and screamed while I tried to send in important loan documents is my hero. Another time a stranger who put a hand on my shoulder and said, “Don’t give up” gave me strength when I needed it badly. I have realized that people who give me parenting advice are mostly trying to help, even if they  have no idea what they are talking about. I do wish people would stop telling me about Jenny McCarthy and how she “cured” her son, though.

I have learned much about myself these last few years also. I can go without sleep for ridiculous amounts of time. I no longer care about so many little things I used to care about. I will do anything for my children. I am terrible at arts and crafts. I don’t care if I ever have a career outside of parenting. I am doing the most important job I could ever do and it is fulfilling every day. I have learned to ask for and accept help and learned to cope without it. I have learned that my marriage can probably make it through anything.

We plan for our future so carefully and timidly. We have great hopes for our children and will do anything to help them realize their hopes and dreams.We are having a fundraiser in September to hopefully cover some of Corbett’s therapy expense.  You can find out more about Corbett's fundraiser by checking out Jones SLP services on Facebook.  

1 comment:

  1. What a wonderful post! Thank you for sharing so eloquently the feelings that all parents of nontypical developing children feel. I face some of the same challenges & it is so nice to know that I am not the only one who feels this way.