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I recently did my first radio show on the BAM! Network. The topic was Autism and I was joined as a guest by Clarissa Willis. Clarissa Willis is is vice-president of publishing for Gryphon House Books. She was formerly an Associate Professor of Special Education and the Associate Director of the Center of Excellence in Early Childhood Learning and Development at East Tennessee State University. She is the author of five books including: Teaching Young Children with Autism Spectrum Disorder.
Clarissa had some great information for parents in about 13 minutes. Oh, yeah, and don’t mind the mispronunciation of my last name :). Everyone seems to mispronounce my last name for some reason…Plow-man. Click here to listen to the interview.
In light of this interview, I thought of my friend Diana. Diana and I went to college and sang in university and show choirs together. She is a Babywise mom, and she has experience in this area. I asked her to share her story in hopes it might help someone out there, and she graciously agreed. Here it is:
My son C. was diagnosed with autism shortly after his second birthday. At the time I was receiving a lot of criticism on my parenting. My son was “out of control”, threw violent tantrums, wouldn’t eat, wouldn’t talk, and he certainly wouldn’t respond to anyone. He stopped calling me “mommy”, and he stopped responding to me. He used to get so much joy from playing with his little friends, but even they couldn’t excite him. All he was interested in was watching “Finding Nemo” all day, every day. If I turned it off, it was the end of the world. His screaming fits made me crazy, and I was afraid to go anywhere with him. I had a six-month old baby at the time, and my doctor assured me that C. was just acting out because of the new addition. I was very frustrated when I left the doctor’s office, and I was determined to find a new doctor that would listen to my concerns. My baby was six months old! Why would C. be acting out now?
One day, I was watching an episode of Oprah, and Jenny McCarthy was on talking about autism. I remember holding my little boy and sobbing. I knew that this was the answer. I found out that one of my friends had family members with autism, and I asked her about it. To my dismay, she told me she suspected C. had it, but didn’t want to say anything. She told be about Early Access, a program where teachers will come into the home and screen your child for developmental delays and offer treatment for free.
I called and told them my suspicions. They sent a teacher in right away and she confirmed my fears. She told me I needed an official diagnosis from his doctor in order to get the ball rolling, but that he needed speech therapy as well as developmental therapies.
I made another appointment with C.’s doctor, and I was determined that she listen to me now. Luckily, I was the first appointment of the day, and the doctor called in sick, so would I mind seeing another doctor? I knew my prayers were answered. The doctor I was asked to see instead was a specialist in child development. Even though she had to “squeeze” me in, she sat and listened to my concerns for over an hour. Then she screened C., diagnosed him with a developmental disorder, and referred us to an autism specialist.
Two months later, we were given an official diagnosis of PPD-NOS or Pervasive Development Disorder- Not Otherwise Specified. He had some autism, but he didn’t fit all the criteria to be considered autistic. The doctor told us that she had every confidence that with treatment he could recover from it.
By this time, Early Access had already sent in two teachers to work with him. Three months after beginning treatment, C. started saying simple words again. His first word was “more.” It was the most beautiful sound I’d ever heard. Instead of throwing a tantrum when he wanted something, he learned to say, “more.”
I wanted to help as much as I could. I researched different treatments. I read Jenny McCarthy’s book and cried through the whole thing. Her story was all too familiar. C. even had the scary febrile seizures like her son did. I joined groups, read about other parents’ experiences, and I read books on special diets and other treatments.
I tried gluten-free diets and enzymes. But how could I get a kid who wouldn’t eat to eat this special diet? After a couple months or so of draining our food budget on these specialty foods, I gave up. I didn’t see any sort of change except that he was eating less, and that scared me.
We had to get C.’s hearing tested to make sure that it wasn’t the cause of his sudden loss of speech. During C.’s hearing test, the audiologist said that his ear was blocked with wax, so she asked the ENT accross the hall to clean out his ear. I rolled my eyes as I thought of how torturous that process was going to be. I didn’t realize that the ENT was going to diagnose the cause of C.’s autism.
He looked in C.’s throat and said, “Those are the biggest tonsils I have ever seen!” He proceeded to ask me if C. had sleep apnea. I didn’t really know what that was, so he explained that it was when a person stops breathing for a few seconds several times while they sleep. He asked me if C. slept a lot. I told him that it was the only thing I could get C. to do. I always attributed his good sleeping habits to the book On Becoming Babywise. C. would sleep fourteen hours a night and take a four hour nap during the day. The doctor asked me if he snored a lot. Yes, he did, and it was awful! He told me to take C. home and watch him sleep to see if he had apneas. Sure enough, during his nap that day, my husband and I watched him stop breathing several times every few seconds. His tonsils were so big, they were cutting off his breathing!
We researched sleep apnea and found that it can cause developmental delays in children because the lack of sleep affects how the brain forms. We also found that his lack of good sleep caused him to have sensory sensitivity which explained the tantrums. A few months later, we had his tonsils removed. His naps stopped, but his vocabulary exploded. The tantrums stopped, his seizures stopped, and his personality emerged. There was no end to the benefits. Unfortunately, the damage was already done. He still needed to recover from the scars of autism. We have kept him in treatment, and now he is five years old. He will be starting Kindergarten in the Fall at a regular school with regular kids. He no longer needs Special Education, but he will receive coaching for his social development. He has a few quirks that tend to turn some people off, but he has become a very bright and intelligent, helpful, and loving little boy.
I have to say that routine really plays an important part in treating kids with developmental disorders. I try to vary our routine a little every so often to keep him from getting too comfortable in case there happens to be a circumstance where we can’t stick to the routine. That is one reason why he loved Preschool so much. Kids really thrive on structure, but I try to keep our structure flexible in case something unexpected sneaks up on us. For example, we went to church last Sunday and C.’s teacher wasn’t there. He refused to go. While this is something I couldn’t help, had I known his teacher wouldn’t be there, I could’ve talked to him and prepared him about it. Still, despite the preparation, he may have responded the same way. I have to be extra patient with him. He does a lot of verbal stimming where he’ll say the same word over and over, and this can get very annoying to people, especially me. It breaks my heart to see him get rejected by other kids because of his quirks. Thankfully, there are those other kids out there, like my other son, K., who enjoy those quirks and think they’re funny. I occasionally get a mean comment or dirty look from another parent at a playground when C. acts out against her child, but I simply say, “Tell your kid to get out of his space.”
I’ve learned through all this that a mother’s instinct is not to be ignored. We know what’s best for our children. While advice is necessary, in the end, we need to fight for what we know is right for our children.
Isn’t that beautiful? Thanks so much for sharing Diana.
If any of you have any autism comments, please feel free to share.