Close your eyes, breathe in deeply, now exhale slowly… That was easy, wasn’t it? Not for everyone…
Asked by a total stranger: “Is your child’s condition genetic?” (My favorite response to this one is to ask if their kids are genetic…)
“So and so’s child is worse off than yours.” (Telling me about someone else’s challenges does not comfort me.)
Told to a parent of severely handicapped child by one of her daughter’s therapists, “I got my three year old off the bottle why can’t you just take your child’s bottle away?” (Of course her three year old is totally healthy and developmentally on target.)
Told to a parent by an administrator at a sleep away camp for children with moderate to severe special needs when the parent of a severely autistic child asked for a scholarship: “Camp is a luxury not a necessity- I only send my children when I can afford it.” (Of course his children don’t have special needs and can attend any local day camp!)
So what is the right thing to say to a parent of a special child without falling into the above categories?
1) The proximity rule– how well do you know the person? A close relative can ask as it may affect them as well but a stranger in a doctor’s office waiting room or a shoe store should not be asking for the child’s diagnosis or whether a child’s condition is genetic. We should respect the privacy of others.
2) When complimenting a parent, don’t tell them that which you could never do. Instead keep it positive and say, “ I am so inspired when I watch you with your child- you are an amazing mother.”
3) When offering help, instead of saying, “Call me if there is anything I can do,” call the parent periodically and give concrete offers of help. For example, ask whether you can send your daughter and her friends to babysit regularly, offer to drive car pool, help with errands, and invite the siblings over for play dates to give the parents a break. If the special child is hospitalized or ill, bring over dinner, offer to make phone calls, offer to take a shift in the hospital to relieve the parents if possible.
4) Don’t compare parenting a typically developing child to parenting a child with special needs. Parents of children with special needs have very different challenges raising their children and need respite and relief. When trying to help, don’t minimize their situation.
5) Agencies, therapists and professionals working with families should be careful not to make judgmental remarks when working with parents of special children. Your role is to be of help and support, and not to inflict them with more pain and suffering. Administrators of programs and schools should make sure to sensitize staff to respect parents of special children.
6) Stop viewing special children and their families as a nebach or pity situation. No one is a “nebach case” we are all created b’tzelem Elokim– in G-d’s Image. When we categorize someone as being a nebach we see him or her as a charity case and close ourselves off from the thought that he or she has what to teach us about life. Just ask any teacher, therapist or camp counselor about what they have gained from working with special children and their families. What is truly a nebach is if one misses out an opportunity to learn and grow and to realize what is important in life.
7) Always try to find the common ground instead of focusing on the differences about children with special needs. “Your son has such a beautiful smile.” “You always dress your daughter so nicely.” When you come across a child with special needs that you know, greet them with a warm smile. If you see a parent struggling with their special child, open a door, offer to help don’t just pass them by. A garbage man once saw me struggling to get my daughter into my van lifted her into her seat and helped me put her wheelchair in the trunk without me even having to ask him for help, I was so grateful. There are so many opportunities to be meaningful towards the special families in our midst and in turn find much meaning in our own lives.
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