Parents with special needs children

by Jenny Mathews, contributing writer

We’ve all been there: Not knowing what to say, you open your mouth and something awful comes out. You wish you could shove the words back in and hope no one heard.

There can be a weird gap between our intentions and our words that seem especially wide in our interactions with those who have children with disabilities. I have asked dozens of families in our community, who live with these challenges, to help us respond better and really help them.

The more we increase our understanding, change some of our dialogue and the way we approach our friends living with these challenges, the more we can help these families and their ability to thrive outside what can be a very limited comfort zone.

Parents of children with a disability seem to have one hurdle in common: social situations. The raised eyebrows, the innocent and not-so-innocent comments, the sensitive questions and unwanted advice can be hurtful — adding a whole new layer to the already overwhelming challenges they face whenever they leave the house.

One friend said she wishes her son could wear a T-shirt that says “I have autism” on it every day just to avoid judgment. Well-meaning people, even family members, often assume that her son’s behavioral challenges are a result of bad parenting.

Another friend, speaking of her daughter with a disfigurement, said she wishes more people could see past the disability and see a normal child.

In order to bridge this gap between our good intentions and our actions, consider these five tips that have come directly from the source:

Improve reactions: Check your reactions and help guide your child’s. When you approach a child with a disability, a wave and friendly smile is perfect. If your child makes a comment or asks a question like, “What’s wrong with her?” don’t shush them or whisk them out of earshot. Do your best to explain that there is nothing wrong with her; she was just born with different challenges than you were. Try and insert sympathy and kindness into your answers to their responses rather than panic or pity.

Use loving language: Avoid using derogatory words or phrases that would label the child as anything other than first and foremost a child. For example, “He is autistic” vs. “Sally has autism.” Withhold advice and comments: In the right environment, sincere curiosity and well-meant advice can be welcoming, however, not so much if…

  • The parent is wrestling with a behavioral outburst or meltdown.
  • The child can hear your conversation.
  • The environment is impersonal and hectic. For example, the middle of a playgroup might be less appropriate than at a lunch or girls’ night out where a more serious conversation would be easier to have.
  • There is any hint judgment, assumption or accusation.
  • You are commenting on their appearance. Never say, “She looks normal to me” or “I could tell it was something…”
  • You are criticizing their parenting – even unintentionally. For example, “Maybe he needs more structure” or “She needs more attention.”

Avoid comparisons: They’re almost never helpful. Each child is unique. Having a child with any disability, especially autism or another less obvious disorder such as learning, behavioral or psychiatric disorders presents many complex challenges. Not the least of which is simply defining the parameters of that child’s disorder and specific programs and treatments to investigate. Comparing someone’s child to another child — even if you are simply trying to establish common ground — may have the opposite effect. Chances are it will hurt rather than help.

Offer to help: I asked each family to answer this question: “What would be the most helpful offer besides, ‘Let me know if you need help with anything.’”

  • Include them. They want their child to be treated as any other child — invited for play dates and birthday parties, asked questions about their activities and interests, and treated as an equal member of the family and community. If you are nervous or uncomfortable, let them know and ask what you can do better or differently to make the child happier and more comfortable with you.
  • Offer to babysit. We all need a break now and then. Offering to babysit so the parent(s) can have a little break or run a quick errand was one of the top responses.
  • Take an interest. Express authentic and sincere interest in the child. What are they interested in? What kinds of things make them uncomfortable or what makes them feel safer or more at ease? Knowing you are among those who care and want the child to succeed can mean a lot to the child’s family.

Keep reaching out. One mother said she often has to put the needs of her son first. While she would probably love to attend social gatherings — meetings, lunches, book club, etc. — she often has to postpone or cancel. “I just have to use all of my energy being the most reliable person for my son. Because I love him, and letting him down on even a small thing can set us back months in his behavior.” She hopes her friends will hang in there and keep reaching out.