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Deborah DiVencenzo: Love of family eases struggle with autism

It’s April and Autism Awareness Month. With the numbers increasing, awareness and early diagnosis are critical for children on the autism spectrum. Having a child with autism, or any disability, can be all-encompassing for any family. There are highs and lows; great days and frustrating weeks.

Your heart aches for the struggles your child faces daily. Your body aches with sleepless nights and constant worries. Your spirit is lifted often by teachers, therapists and anyone who helps or interacts with your child; anyone who can clearly see what a wonderful person he can be; anyone who can see beyond the disability.

A few months ago, I was asked to be on a panel with four other women who had a family member on the autism spectrum. One of the women actually had Asperger’s syndrome and of the rest of us, two were moms to a child with autism and two were sisters – one adult and the other middle-school aged. All of us spoke about our experiences, which was tremendously emotional and personal.

Hearing firsthand the experiences of the woman with Asperger’s was both heart-wrenching, for her struggles, and inspirational, for how she has managed to handle her disability and make the most of her life experiences. We spoke to a room full of teachers and speech therapists, trying our best to make them understand how important their jobs are, how important their support of families is and how grateful we are to have their help.

I came away from that experience with such profound respect for the others on the panel; for their struggles and triumphs. Our children are special. They are truly blessings, all of them. Our other children, the “typical” ones, are so often the unsung heroes of the family. They are the kids who don’t always get as much attention because they are able to fend for themselves much more easily. They don’t always get the credit they so deserve because they aren’t fighting the battles that their siblings are.

They are by no means forgotten, for they may voice the typical, “it’s not fair, he gets to …” Then we think, “Really? It’s not fair that you don’t have a disability, but your brother/sister does?” The truth is they do know how lucky they are, but are just craving a little extra attention and love.

Those very same kids are the ones who are so often looking out for their siblings to make sure they are safe, or that no one is bothering them or taking advantage of them. Those same kids who are engaging their siblings in play or conversation to do their part to help the siblings they love so much. Those kids who often tirelessly help take some of the overload from their parents by helping out when they can or by simply making us laugh when we are at a low point.

All of our kids carry some of the weight of the disability, whatever it may be. Perhaps they may even be teased by classmates because of their siblings. It’s not an easy world we live in. But I take heart in the words of those wonderful young women, who expressed nothing but love for their brothers.

I know my own daughter will one day be just like them, for she adores her big brother. She will be shaped by our non-typical family, full of love and empathy and kindness for those who are different, not less. And one thing I know for certain – she will always make us laugh.