Raising a Child with Special Needs
Do not diagnose someone's child
One mom I know had a woman came up to her and yell, "Oh my God! Your child has Down syndrome!" It was incredibly rude and awkward.
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 roundabout 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.
Do not give unsolicited 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?" Such insensitive comments can be emotionally devastating.
Michelle Turner, a movement integration specialist and educator from Peoria, Ariz., agrees: "Just saying 'What a great smile' or 'He has your eyes' would be a brief comfort."
Laura Shumaker, the author of "A Regular Guy: Growing Up With Autism," recalls 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."
One of the hardest aspects is 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," says Michael J. Carrasco of Alexandria, Va. "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."
What can you offer? If you have a family member or close friend with a special needs child, the answer is easy. Have patience. Understand that with countless doctor appointments and therapy sessions, your friend might be hard to reach. Keep calling though, because even an invitation for quick cup of coffee can make a friend feel less isolated.
Also offer to help with meals and free child care for siblings. Parents of children with disabilities may spend hours or days in hospitals and exist on minimal sleep. Send a meal, basket of fruit or dessert to show you care.
Mary Calhoun Brown of Huntington, W.Va., is an autism advocate and parent of a child with Asperger's Syndrome. She says the three most difficult things about being the parent of a child with special needs are accepting diagnosis, accepting that disability is part of your child and coping with the hurtful behavior of others. Her son has dealt with bullying issues, as many children do. Though all parents love to believe their child isn't the bullying kind, it's more common that you think. Even very nice children occasionally give into peer pressure and tease "different" children. If your "typical" child wets the bed or trips in front of a group of strangers, it's the perfect time to discuss empathy.
Leilani Haywood, a mother whose daughter has Down syndrome, echoes a sentiment I have heard from many parents.
"I wish, wish, wish that parents of typical kids taught their kids how to deal with children that are different or disabled," says Haywood. "I think learning these skills would take them far in life with all types of people." Haywood expresses frustration that her daughter 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 15 minutes can have a lasting positive effect. Often, strong friendships form as a result of minimal effort.
Julia Garstecki is a teacher living in western New York with her husband and two children.