What do you want family members or strangers to know about raising a child with a disability?

A screaming child in a grocery store, an anxiety ridden child refusing to speak to other kids at the park, or watching your child scream when the lights go down at an overpriced children’s concert. For most of us, these moments (Thank God) are rare. For some families, however, these “moments” are daily struggles as a result of raising a child with special needs. In conjunction with physical and/or behavioral issues, some families of children with disabilities also know the challenge of well meaning (and not so well meaning) people offering advice. As most people truly want to help, here are some tips parents of children with disabilities would like to pass along:

Please do not Diagnose My Child

One mother shared an experience of being in a store when a woman came up to her and yelled, “Oh my God! Your child has Downs Syndrome!” Guess what? She already knew! Another father shuddered at the memory of a complete stranger telling him his son looked autistic. The best thing to do if you are curious is to ask. My son has Apraxia, and it can confuse people. When polite strangers ask, usually in a round about way (He’s so cute! Is he a shy guy?), I relish the opportunity to share information about his diagnosis. This usually leads to the stranger bending down to my son and complimenting his smile. My son will beam and start laughing, and we all walk away from a positive experience.

Unsolicited and Unhelpful Advice

Telling me you could straighten my child out is not helpful. Neither is telling me my child needs a good spanking, or that I am spoiling him. Equally off putting are questions such as What’s wrong with him? Why does he look that way? Have you contacted a lawyer? Isn’t autism just the correct term for poor parenting? After some such comments, one mother left the store and sat behind her steering wheel, crying for thirty minutes. It can be a devastating blow.

Michelle Turner, Movement Integration Specialist and Educator from Peoria, Arizona, agrees. “Just saying ‘What a great smile’ or ‘he has your eyes’ would be a brief comfort.”

Laura Shumaker, author of A Regular Guy: Growing Up with Autism shared a moment when her son was struggling in church and she managed to quiet him. “A woman behind me tapped me on the shoulder and said, ‘I admire you so much.’ I’ll never forget it.”

Reach out to Me, Even though I May Not Ask

“One of the hardest aspects I believe…is that of isolation. The feeling that you are the only one who is facing this because others just don’t understand. I am the father of three children, the oldest has autism. I am always concerned about giving attention to all the priorities-my wife, my job, my community, my children, my friends, and myself-in my life without becoming emotional and physically spent, which has happened to me on occasion.” Michael J. Carrasco and other parents also mentioned the exhausted efforts with therapies, insurance companies, and the extra cost of having a child with a disability. What can you offer? If you have a family member or close friend dealing with this issue, the answer is easy. Patience. Understand therapy sessions might be rearranged at the last moment, money might be tight, or the child might be having an off day. Keep calling though, because even the invitation makes us feel included!

Another way to reach out is offering meals and free child care for siblings. Parents of children with disabilities may spend hours or days in hospitals, run around crazy with therapy, and/or exist on minimal sleep. After spending another scary night in the hospital with her child, one mother came home to a basket of muffins and fruit on her porch. The love and support she felt from such a simple gesture was immeasurable.

Teach Empathy!

Award winning author Mary Calhoun Brown is a parent of a child with Asberger’s Syndrome. “The three hardest things about being the parent of a special needs child: 1. Accepting the diagnosis. 2. Accepting the disability as part of your child. 3. Dealing with the thoughtless, hurtful behavior of others.” Her son has dealt with bullying issues, as many children do. While all parents love to believe their child isn’t the bullying kind, think again. Many parents had heartbreaking examples of very nice children giving in to peer pressure and teasing “different” children. If your “typical” child wets the bed, or trips in front of a group of strangers, this is the perfect time to discuss empathy.

Leilani Haywood echoes a sentiment I have heard from many parents. “I wish, wish, wish, parents of typical kids taught their kids how to deal with children that are different or disabled. I think learning these skills would take them far in life with all types of people.” Her daughter (who has Down Syndrome) has not been invited to parties and/or play dates, which is a common issue children with disabilities face. Many parents of special needs children will happily explain why their child may not be able to play basketball, but they can play video games, or tell you that even though she isn’t talking to you directly, she is still enjoying your company. A play date as short as fifteen minutes can have a lasting positive effect. Often times, strong friendships form as a result of minimal effort.

So there you have it! Four simple things you can do to help a family in need. When you get right down to it, it’s about seeing everybody as an individual. While some children might have a disability in one area or another, it’s not their definition. My son has Apraxia, he is not my Apraxic son, and yes, there is a difference!

Julia Garstecki

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