Encouraging the Parent of the Special Needs Child

AS many of our readers know, one of our children has many special needs. You will not encourage the parent of the special needs child by delivering this cliched homily, "Well, really, all children are special, aren't they?"

I promise you that every parent of a special needs child does realize that all children are special, but as a parent of both 'normal' and special needs children, I am telling you there is a huge difference, and it's not encouraging to be told there isn't. The difference shows itself both in the details of every day life and type of long-term commitment required.

It's not that we don't love and value our children. It's not that we don't think they are precious. But sometimes the parents of a disabled child needs a shoulder to lean on. When people dismiss the parents' concerns or weariness, it's like yanking that shoulder out from beneath a weary, limping soul and saying, "you're not as footsore as you think you are." Of course, nobody would do that, would they? Or wouldn't they?

Do you want to know how not to be dismissive? Don't pretend this is normal. So many times our desire for an understanding ear is dismissed by wellmeaning, kindly intended friends who will respond to some description of our childrens' behavior with, "Well, I'm like that, too. We all are." No. You're not.

For instance, I might say, "The Cherub was a real handful today. She never goes through the kitchen without grabbing a handful of food she's not allowed to have, and she gets very indignant when we take it away."

And a nice friend will chuckle and say "I'm like that, too, really we all are. We want what we want, and we object to not getting our own way."

Really? Do you snatch food that gives you hives, that gives you stomach ache, and that gives you burps that smell like sulfer from hades? When people try to keep you safe do you really try to kick them? Scratch to the point of drawing blood? When the mother of a disabled child is reaching out for a sympathetic ear and some understanding, she does not need her frustrations philosophized away by people who really don't have a clue what she's talking about. You're talking in an airy, dismissive way about general human nature, she's talking in a very concrete fashion about the very real specifics of her day. There's a line, of course, between seeking understanding and a shoulder to lean on and whining, grumbling, complaining, and just generally being a negative, grouchy soul. A good friend will not encourage the latter. But if you don't understand the differences between what the parent of a disabled child deals with and what you deal with, you won't be very accurate in discerning the two.

While it is true that even the profoundly disabled are just like the rest of the human race in many areas, there is a difference in intensity and duration. Let me instead give an example.

Our Cherub is developmentally about two years old, more or less. Like most two year olds she likes to tease and argue to get her own way. She likes to play silly tricks on people. She thinks it's funny to hide the Equuschick's favorite pillow, to find a book the HG or I are reading and lose our place. She likes to bite down on the toothbrush when getting her teeth brushed. Those of you with two year olds know what I'm talking about, or you think you do. It's kind of funny. And like your husband's jokes, it's kind of funny for about the first thousand times.

Now imagine your two year old doing those things every day for a year. Then add another year. Now add another year. And another. And... Our Cherub, you see, will never, ever outgrow those things. Imagine a two year with no capacity for boredom. If The Cherub could talk I do believe she could play the 'did too, did not, did too, did not' game until she lost her voice, and then she'd still be shaking her head.

Another way people reject the parents of the disabled and demonstrate an unwillingness to understand them is by refusing to accept the disability itself. I can't tell you how many people meet us for the first time and are instantly ready to diagnose the Cherub for us. They tell us she's probably not retarded, or at least not as retarded as we say she is. They tell us she understands more than we think she does, and that probably she really can /read/count/sign more/insert skill of choice here/speak, but she just doesn't want to.

This reaction is a very subtle rejection and it's easy to fall into. I find myself doing it in other situations- we all just want to help so much, and we think we can help by noticing something nobody else has. But it's not very humble to assume that five minutes with a family makes you more informed about the disabled child than her parents.

Reading this over it all sounds very negative, and I really don't mean it to. Let me close with some positives.

Listen to your friends when they express discouragement, weariness, or frustration. Acknowledge those feelings (that must be hard, that does sound frustrating, would you like some chocolate?)

Acknowledge that dealing with a disabled child is hard, but don't treat the disabled child like a different species- don't offer to babysit the healthy, normal children but explain you can't take on the disabled child. Either offer to help watch them all or don't offer at all. If affection is welcome to the disabled child (some autistic or retarded children are defensive about being touched) hug them just as much as you do the other children. On the other hand, don't act like the disabled child is a higher order of being than the other children, either. She's not more angelic just because she's developmentally delayed.

Ask questions about the disabilities the child has- not personal, none of your business questions ( it's not true that there are no bad questions- how did she get this way, how do you feel about that, why did you have other children after having a handicapped child, is it genetic, what's her life expectancy, how much does her therapy cost, etc. all really are dumb questions because they are not your business). Good questions include things like, "What should I expect from her? She seems to be telling me she's hungry, what do you want me to do? Is there anything I should or should not do with her? Please tell me if I'm doing something wrong."

Be sympathetic, quick with hugs, warmth, and understanding.

Update: For a post about how not to act, many of our readers will enjoy this post we put up last May.