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Igniting the Flame

If you follow this blog, you know I often write about life as an autism mom. This year, our youngest son was also diagnosed with autism after we noticed his regression of skills similar to our oldest child. By 12-15 months, Thing 3 was “talking” on the phone, playing imaginatively, pointing to objects, initiating games like peek-a-boo and patty-cake. All that stopped by 18 months and was replaced with toe walking, repetitive movements around the room, fixation with his hands and fingers, and silence…no sounds coming from our baby except epic meltdowns nightly at dinnertime. In July, we finally had our appointment with the Transdisciplinary Autism Assessment Clinic at Commonwealth Autism. In addition to administering the ADOS (Autism Diagnostic Observation Schedule–an assessment of communication, social interaction, and play), the team included occupational and speech therapists’ assessments. It was a long morning of questions and observations, but we knew what the findings would be.

So here we are, raising three boys with moderate autism.

Part of me was sad. Regressive autism is crushing–to see your child struggle with actions and words that used to be easy. On the other hand, life with autism is normal to us. Around the same time Thing 3’s language and social engagement vanished, there was a workshop on regression sponsored by the National Institute of Mental Health in Maryland that focused on the development of infant siblings of autistic children, but overall the National Institutes of Health grapple to understand the neurological changes, immune responses, and other physiological causes of regression. In an attempt to find answers, our family was evaluated by a genetics team at the University of Virginia. They completed a microarray analysis, which detects possible chromosomal abnormalities, and that revealed nothing out of the ordinary. The next test to be completed is called a DNA extraction using blood samples from Thing 1, me, and my husband. This testing did not exist when we took Thing 1 to a geneticist six years ago, so we are excited to see what it may reveal.

Autism research becomes a touchy subject when people argue for neurodiversity versus “curing” disorders. I accept my children for who they are and wish the world understood their struggles and respected their dignity…but I would be a liar if I didn’t say I would love to take away those struggles. In an attempt to contribute to the body of research, our family signed up for SPARK. SPARK is an online research partnership involving 50,000 individuals with autism and their families attempting to accelerate research, coordinate those findings among medical institutions, and advance the understanding of autism. Over 20 medical schools have joined SPARK, and SPARK provides those researchers with medical and genetic information from participants like us. When we signed up, we completed questionnaires about ourselves and our children, then sent SPARK our saliva samples.

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Special needs parenting cannot only be about IEP battles, inspirational quotes, and memes about coffee consumption. While those are all very true, I want to know WHY my children have autism. I know about ASD and ABA, IEP’s and IDEA, BIP, plenty of SIB’s, IFSP’s, ADHD, OT, SLP, and the whole alphabet soup. But why does this condition impact all three of my children? Perhaps new research will lead to custom interventions and therapies tailored to each child. Will new research explain the systemic medical problems related to autism, like immune deficiencies, seizures, and gastrointestinal issues, and therefore lead to better treatments? There simply is not enough research or funding to answer these questions, and SPARK looks to bridge that gap.

I was shocked to hear many of my friends in the autism community never heard of SPARK. I hope you share this information with other families affected by autism and be the spark that ignites a flame in the lives of others.

 

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