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Lia Spiliotes, CEO of Community Health Programs, with her son James Crawley.

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By Saturday, May 12, 2018 Life In the Berkshires 1

As the mother of an adult son with autism, I have a special appreciation for Mother’s Day, and for the son who has gained me entry into a special sisterhood of mothers. We moms of children with autism – and our wider families – have an entirely different experience of motherhood than do many of our fellow moms. This is so true for mothers of any child with special needs, not just autism.

The particular challenges we and our autistic children navigate run the gamut from frustration to joy: from helping our small children to get dressed when they don’t want to be touched, to helping our adult children to interact among adults in a world that doesn’t “get” autism. We moms need to call on an extra-deep well of internal compassion, understanding, patience and heart.

When our kids are small, the hardest work can be in the morning, before we even leave the house for school. Daily logistics at home are just the beginning and require our most intimate advocacy. Outside, our attentions become more interpersonally broad: We serve as bridges between our children and those who find our kids socially awkward or remote: relatives, playmates, teachers, store clerks and restaurant staff. We take pains to help others understand who and how our children are in the world. We are heartbroken and angry when our children are isolated or bullied by others because they are “different.” We walk the line between encouraging independence and mother bear protectiveness. As moms, we have all experienced isolation and judgment by others who live far outside of our experience.

Years ago, I wrote an ongoing blog, “A Mother’s Voyage: Wanderings in the Wonders of Autism.” It was my way to share my experience about my parenting a child with autism. One such entry “Do you know me?” was a message to others who might not understand autism:

“I am the little boy with hair so long I look like a girl. Sensory issues make haircuts painful for me and my Mom is willing to pick her battles, hair is not one of them. I am the little girl in a spring cotton dress when I need to be wearing winter clothing, but I cannot stand winter clothing. Trust me, Mom makes me wear a coat outside, so don’t remind her that my dress is wrong, she knows.

“If I am verbal, I might speak in a monotone voice and repeat lines from my favorite movie. When I say, “See a need fill a need” my family will know I am happy. If I cannot speak, I might look past you or reach up and touch your mouth as I try to understand why mine will not work like yours. I mean you no harm; I am trying to understand my world and how to make it work. I might buzz or chirp. If I am on the higher end of the spectrum, I might amaze you with my knowledge of the planets, yet I cannot answer you when you ask me what I want for Christmas.

“I might spin in circles or flap my hands as I jump up and down. I might carry a baby toy that I should have outgrown years ago, or a strange object like a hairbrush. I might need to count all the ceiling tiles in the restaurant before I can sit at the table. I may need to touch the glass window over and over and over, so please don’t tell me to stop, I really wish I could. I might talk too loud and say all the wrong things to the lady taking our order. I might burst into tears when my plate comes because the French fries are too fat and I have a meltdown.”

Like every other parent we find joy in our children’s successes, interests, breakthroughs and self-awareness. We are gratified with the growing understanding of autism and with stigmas that seem to be breaking down.

Still, no mother of an autistic child can go it alone. I encourage moms like me to form a squadron of support: Friends and family, educators, support groups, and most important, moms like us. There is nothing like a sympathetic parent who can offer the best, encouragement, humor and understanding. We must create cocoons of understanding for each other where no explanations or apologies are needed.

If you are unfamiliar with autism, or unsure how to be friends with someone with autism, please reach out to us moms. We can guide you toward a connection with our “different children.” We can help you get to know our kids, and to meet them on their unique terms.

My son, James, is now 24 and living outside of Boston in a semi-independent setting with supervision and support. He is an amazing man, and I treasure my time with him.

The best Mother’s Day gift we can receive is the gift of understanding, genuine interest and connection to and for our children with autism, no matter their age.

________

Lia Spiliotes is the chief executive officer of Community Health Programs.


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  1. Karen W. Smith says:

    What an incredibly beautifullly written real life love story. I am honored to know you .

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