Back to researching autism theories, thoughts, and experiences...
I just completed the book, The Boy Who Loved Windows, a book written by a mother who fought for her autistic son, and won. This book was different from the first one I read. Although it was also a personal experience from a mother's perspective, this woman's journey was slightly different. Her son showed significant sensory concerns from the very beginning. She knew something was wrong, but doctors were no help. The child had trouble breathing, eczema, and digestive issues (he threw up a lot). He didn't gain weight, and seemed to be "uncomfortable" most of the day. GI doctors told her to "feed her son anything" they could, and turned away from the idea that food allergies were a concern. She knew better, and finally, a doctor agreed to test for food allergies. Sure enough, the child was allergic to milk, wheat, and several other foods. Eliminating them made a significant difference in his overall health, but they still had a long road ahead of them. Through her research, she found a program called REACH. The program labeled the child with SID--sensory integration dysfunction, and he began therapy long before his first birthday. Months later, a new specialist would come into play--one that specialized in autism. Although not formally diagnosed with autism, the signs were there, which warranted further therapy. The mother continued to research, and found psychologists who specialized in autism: Rimland, Lovaas, and Greenspan. She was counseled by her son's therapist to be cautious of Lovaas' methods, and decided to turn to Greenspan's approach--20-30 hours a week of "floor time," which is basically intensive play therapy. Despite considerable efforts, the mother was unable to get enough help from REACH to complete all 20-30 hours. So, she did it herself. Day in and out, she researched and "played" with her son. She did this play therapy for hours a day for almost 5 years. She described how her relationships struggled--she lost friends and nearly her husband, and eventually, she almost lost herself. She spent little time with her older daughter, who spent much of her time with friends, family, or in front of the television. But, her son thrived, grew, and overcame all odds. A boy who they thought may never walk or talk walked at age 2, and talked far beyond his developmental age. He was intelligent, active, and happy. Sensory concerns fell away, and by age 5, you would never know that the child had so many struggles. The label "autism" was gone.
I admire this mother's hard work, dedication, research, and love for her son. It made me think a lot about where my priorities and capabilities are. I do a much better job getting Aiden involved in the community and sensory activities, than I do with "floor time". I feel awkward trying to interact with Aiden. He doesn't seem to understand or respond when I try, and I give up easily. Add another child (soon to be 2 more), and significant stress elsewhere, I feel inadequate in my "play" capabilities. However, Aiden is MY son, and much different than this child. I have to believe that God gave me Aiden, because he knew I could give him what he needed and vice versa. There is so much to learn from special needs children!
Unlike the mother in the story, we have decided to go with the Lovaas approach. Aiden remains on the waiting list for 20 hours of therapy a week. In the meantime, Aiden still goes to school 4 days a week half days (where he receives speech and occupational therapy), and he receives extra speech therapy at the Waisman Center. I try to attend play dates as much as possible (which is harder without a car now, and trying to get hours at work). I get him involved in physical activities whenever I can. The other day we spent nearly 2 hours at McDonald's playland because Aiden couldn't get enough. I was happy to see him play "chase" with the other kids, smile, and laugh. He scripted a lot (repeating words from a wide variety of shows), but I was grateful for his moment of complete happiness!
This book brought up even more questions. Why do some children show significant signs early on, and some show few signs until they are 18 months old? Why do some have significant gastrointestinal problems while others don't? For some, sensory concerns are much more prominent than speech delay and vice versa. Why? One thing is clear: the cornerstone of therapy is not diet, supplements, and other alternative therapies (all of which this mother used); it is intensive behavior therapy--period.
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