It Isn't Easy - Raising A Child with Special Needs

A preemie parent explains that the difficulty of special needs parenting is hard to understand.

By Pat Linkhorn

Being the parent of a child with special needs sure isn't easy. It's hard work to make our children appear acceptable to the rest of the world. We don't dare confess how hard some of our days are, because then it would be too simple for all the people who deal with our children to say, "It's even hard for this child's parents to deal with him/her." So, we learn to smile, when we'd rather grit our teeth, and we answer questions patiently, even if they're stupid.

Some days it would be nice if we could be totally honest with everyone and tell them just how difficult our days really are. But I'm sure we'd all be committed, plus, we'd never be asked how our days were again! Wouldn't it be nice to be able to say, "I'm so sick of my child controlling my life," or "I wish my kid was normal." But these words are definitely not what people want to hear, nor are they words we could say without feeling pangs of guilt for days afterwards. The cold, hard fact remains though. We think them, and because we think them, we feel stressed out because we can't say them.

When you're fighting for inclusive educational settings, like I am, the last thing you want to do is admit that your child is difficult to spend a whole day with. You don't want to demand that they get special treatment, because, after all, you're also asking that they be treated just as the typical kids are. Deep down though, you know that they do require more attention, more patience, more of just about everything. But you also know that the time and energy you give them is demanding and not everyone is capable of being as diligent as you are. You won't always be there for them so they have to learn to survive in the normal world, even if it can be a cruel place. Add that to the demands they place on you and you've got a lot to deal with.

It would be nice if people understood what it's like for us, but that's not something that can be easily understood. We wouldn't understand it if we didn't live it. Many people might say they understand, but so much of the time that phrase is simply empty words. I don't doubt that the people who say them don't think they do mean them. But the fact remains... twenty-four hours a day, day after day, can only be understood after you've pulled about three months worth of them yourself.

So, it seems as if parents of children with special needs will always have this extra burden to bear. We'll always be expected to be smiling and upbeat if our children are to be accepted. We'll always have to downplay the stress and demands they put on our lives. We'll always have to go that extra mile to ensure that they are included.

But, on the upside, we're providing some positive models for our children to follow. Whatever your child's problem, much of what they learn is from the parent. And some of the most important things are implied, rather than taught. You don't teach attitudes, you live them and your children absorb them.

Pat Linkhorn is the author of the excellent kindle book, Off the Fence : Disability Advocacy.