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Mother in the Shoe…


Until You’ve Walked A Mile in My Shoes…

As parents of special children we’ve all been the recipient of some “interesting” remarks from others whether relatives, friends, acquaintances and even total strangers. It can occur at any moment – as you wait at the shoe store, the local pizza shop, the doctor’s office, shul and anywhere else you can think of. I like to divide them into the following categories:

 

The “Well Meaning”

This category of comments and questions are asked or said by someone who may genuinely mean well for you and your child but somehow many parents are left offended inadvertently or may feel uncomfortable. Some examples of well meaning comments include:

You must be such a special person to have a child like this- I could never do what you are doing…”

Hashem only gives us what we can handle.” (Said by someone who only has healthy children)

You must be such a strong person.” (Said by someone who only has healthy children)

Your child lives at home with you – I give you credit, I could never do that.”

Call me if there is anything I can do to help.” (There is nothing wrong with saying this, but bear in mind, however, that the parent will probably never call you because no one likes to ask for help.)

The people who make the above comments certainly mean you no harm and think they are comforting you. When one says “I could never do that but you can because you are ‘special,’ ‘strong,’ ‘super human,’” etc., what they are really saying is, “You are strong and you can handle it so you have this special child but I am a mere mortal – weak and average and that is why I have ‘healthy,’ ‘normal’ children.” The truth is parents of special children are not angels, we pray that our children are healthy – I don’t think anyone wishes to give birth to a child with a disability. Yes, we have grown and learned so much from our special children. Our special children have taught us to take the time to stop and smell the roses, the power of patience and perseverance and the strength that it gives us. As parents of special children, we realize that every aspect of human development is a truly a nes (miracle) and we are privy to seeing so many miracles with each ounce of progress our special children make.

 

The “Mean”

This category is the opposite of the above. The people who fall into this category have serious issues with bein adam l’chavero, are usually self centered and may be unhappy in their own lives and are inflicting their misery on “lucky” you. There is just nothing constructive about these comments. The following are some examples of hurtful remarks made to parents of special children:

How could you bring this child home from the hospital?” (The best response I ever heard to this was, “The hospital has a no return, no exchange policy.”)

How will you ever find shidduchim for your other children now that you have this child?” (How will you?)

Maybe you didn’t daven hard enough or eat right during pregnancy.” (In an attempt to blame the child’s condition on the parent’s actions, this person feels that they who daven a lot or are cautious with their diet are now “safe” and will not have a child with special needs.)

What is your child’s life expectancy?” (I don’t know, what’s yours?)

Didn’t you and your husband go to get tested at Dor Yeshurim before you got married?” (They went to Dor Yeshurim and so they feel safe that this could not happen to them even though Dor Yeshurim cannot test for many disabilities especially the ones that are not genetic.)

A young woman walking with several young children in a stroller covers her kids’ eyes and said to the mother of a special child: “How dare you expose my children to your child!” (How dare you expose my child to your horrible middos…?)

A worker in a store said to a mother about to buy a nice suit for her teenage son who has Down syndrome: “Why are you wasting such a nice suit on him?” (The mother that this happened to responded, too bad you just lost a sale, I’m going to the store across the street.)

Said by an administrator at a local special needs agency when a parent asked for camp funding for her child through Medicaid Waiver: “Parents of low functioning children are greedy and entitlement oriented.” (Apparently some administrators of Medicaid waiver programs are lazy and out of touch with the needs of the families they serve.)

 

The Meaningless:

These comments are not usually meant to hurt others. Most of these are born more out of ignorance than malice; unfortunately they can hurt as deeply as some of the mean comments.

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!)

 

The Meaningful:

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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