Friday, April 2, 2010

Autism Awareness Month

April is Autism Awareness month and in honor of that, I feel like I should share our story of life with this condition. Every family's story is different, yet strikingly similar because of the nature of Autism. It is a neurological spectrum disorder which encompasses PDD-NOS (Pervasive Development Disorder-Not Otherwise Specified), Classic Autism, Rhett's, and Aspergers/High Functioning Autism. This being said, there is no magic blood test for ASD, you cannot see it on a brain or body scan, it is a diagnosis that you get according to an accumulation of symptoms. Those symptoms are always in varying degrees, which make children with Autism similar yet different. There is no known cure for this, it's cause is unknown, and treatments are often controversial. Parents will often try every imaginable option (clay baths, gluten and casein free diets, supplements, etc) and find some may help and some may not. It is truly unfortunate that this disease is clouded in so much mystery, but the current school of thought is that there is some kind of genetic component that may be triggered by an environmental factor.

Our story begins at Caleb's birth. He was born in 3.5 hours and was perfect in every way. The day after we brought him home, I found him blue on the couch after making a bottle. After a trip to the ER they noticed that he was having apnea, unable to breathe for long periods of time, he was having seizures, and had a heart murmur. We went home with a SIDS monitor, a prescription for Theophylline, and my head in a fog. The beautiful thing was by 6 months, he was clear of everything! He thrived on a night-time routine, and we noticed that he would hum himself to sleep in a very rhythmic way. He hit all his milestones on time. He sat up by 5 months, crawled at 7 months, was walking by 11 months, and was speaking in two word phrases by 12 months. Caleb had such a wonderful, giggly personality that we just loved spending time with him that first year.

When he was 2, his brother was born. He loved playing with his brother and being helpful. He was talking in three word sentences, but started some quirky behaviors and language. He became echolalic, and had a phrase that he memorized for everything. "Mommy, I want some _______, please" and he used it for everything. Clothing became an incredible issue for him, with tags and seams driving him up the wall. Food was almost impossible. He began to smell everything, gagging on almost everything he smelled. Loud noises and lots of people were very bothersome to him and he started being very anxious. His need for sameness was frustrating and hard to continue with. Something that always calmed him down was wheels....

We enrolled him in preschool and it was difficult for him. When things were going his way, things were wonderful, and we thought he was very smart. When he was three, his language had still not improved enough, so I took him to the school for testing. By this time, Caleb was reading street signs and was obsessed with numbers. He was giving little eye contact, but was interested in Mario and Wheel of Fortune. He qualified for speech therapy and the word "hyperlexic" and the phrase "red flags" came up. At this point, I was very concerned. I called my OT that I worked with and asked her to come check out Caleb. He qualified for occupational therapy because of his unbelievable sensitivities and his inability to regulate himself. He was hyper and crazed.

We got on the waiting list for the Meyer Center at Texas Children's Hospital and 8 months later, were in the office. His doctor said that he was developmentally delayed in some areas, but was excelling in other areas and wanted to perform the ADOS test on him. The next month he was tested and he fell one point short of the cutoff for an Autism diagnosis.

At 4, the school recommended putting him in Pre K for him to have some typical children to model and he would continue to receive speech therapy twice a week. Mid way through the year, his teacher reported that, while Caleb was incredibly bright, and was academically ahead, his behavior was problematic and he was, in fact, the most disruptive child in the class. So we went back to Texas Children's, to a new doctor, to find out about trialing him on medication. The doctor told me that I needed to go into therapy, that I needed parenting classes, and that my kid was perfectly Caleb was crawling on his back and humming incessantly. I sought out a new doctor who trialed him on Vyvanse, and he became a completely different child. It just simply worked for him. That in combination with the various therapies he was in and the strategies we used, made us finally able to see a light at the end of a very long tunnel.

By 5, he was enrolled in a mainstream kindergarten, and his teacher was noticing the same issues. We began a 5 month long testing spree through the school. In April 2009, when Caleb was 6, the school held an ARD and confirmed that he was indeed on the Autism Spectrum. Fortunately the school has been fantastic in dealing with Caleb. He has some wonderful modifications, his teachers are all on the same page, and he is academically on target.

Now that he is 7, we are getting better at handling the issues he has. We are trying to find the balance between giving him the input he needs, the solitude he desires, the routine he craves, but still trying to incorporate him into the world that is unexpected, uncertain, and very social. He still need visual supports, he still need routine, he still craves long sleeves and long pants, he still needs lots of physical input, but he is making so much progress.

I wish he would be capable of telling me what happened in his day. I wish he could have normal relationships. But he could be so much worse, and it really makes me treasure the smallest things in life that he does accomplish. This report card, he came home with all A's, he is playing soccer, and he is attempting to make friends. We will continue to support him and push him. He is a fabulous kid that has been the biggest struggle to figure out and raise, and I wouldn't have him any other way.

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