Showing posts with label special needs kids. Show all posts
Showing posts with label special needs kids. Show all posts

Wednesday, June 16, 2010

Mom? Can I ask you a question?

When this phrase tumbled out of Shea's mouth last week, I realized that I had never heard him say it before. Hard to imagine, I know.

Most kids ask questions and chatter non-stop...unless, of course, they have verbal communication difficulties then questions come for their eyes and hands and word approximations. Parents intuitively learn a whole new alternate language so we know how to communicate with our kids. But what about the big old impatient world?

This week, I was one of 24 field trip parents for Shea's Kindergarten visit to the Pt. Defiance Zoo. 40+ kids, 2 teachers and many, many very involved parents made the trip together on a big school bus. We were blessed with a wonderfully brief bus trip, but as we bounced along three to a seat, I heard all around me Shea's peers talking, telling jokes, sentences just rolling of their tongues, all of them taking speech very much for granted.

I wish that those usually easy to roll off the tongue sentences and phrases didn't get stuck, stilted, dropped. For Shea, sentences don't just naturally flow; each word is a labor and putting them together is a juggling act with a seemingly long drop that takes great patience for him and the listener.

Honestly, it is hard to hang in there with him to the end. I holler at Molly when she finishes his sentences because he needs to just bang through it, to practice. But I do it too. Usually in my head but sometime out loud when I can tell he is loosing the thought and getting frustrated.

The other day he said, "Remember when that was ice?" pointing to a tarp in the back yard with icky mosquito water in it. Yes, indeed, there was ice in there last winter and that he mentioned this sort of floored me.

I don't think he has ever said "Remember when..." before and I am thrilled that he is beginning to do it now. How wonder how he see his own struggles with speech?

Sometimes I say, "Shea, you are such a good talky-talky now. Do you remember when it was hard?" Wish he would answer me but he doesn't. I wonder if he will look back and think, "Talking was hard for me when I was a kid." Or will it be much more present, "Talking is hard for me and has been that way since I was a kid."

In the early days, I used to have bittersweet dreams about Shea where he was talking and saying words. Just being able to hear his sweet little voice felt like a gift.

Now, I dream about having a real conversation with Shea where he tells me what he is thinking or dreaming of or imagining or hoping to do. A conversation that is not Wii or Fudge pop related.

I hope that happens some day.

Life is not fair. They say it and I say it because it true. It isn't fair that for some kids talking is excruciatingly hard or that for some kids walking, focusing, socializing, breathing, listening is excruciatingly hard. A magic wand would be nice but all we have is our individual ways of coping.

So, no, life is not fair but I remind myself yet again, there is room in the world for Shea and all the other kids who have to work so hard to do the things that are so much easier for their peers. There is room for of them and they will be stronger, more patient, more adaptable people because of it.

I sure hope so.

Saturday, August 22, 2009

Grief and coping: learning to say good bye to the child you did not have

Whether hoped and prayed for or a big old surprise, each child is a miraculous gift. Each one deserves to be wanted and loved, needs stability, kindness and understanding.

Never are we more human or dare I say mammal as when we give birth. Strong instincts takes over as we perhaps blindly rush into the life long adventure of parenting. This is not only true for birth parents; adoptive parents go through all this too and should not be excluded.

We all know how this story is supposed to go. Your darling baby boy or girl, in every way perfect, growing up, changing, developing, eventually not needing you so much, becoming strong, independent, happy people.

When we first realize that our darling bundle is different and has special needs, we are understandably terrified. Mourning that child you did not have is a necessary part of acceptance. Is it the most gut wrenching situation for a parent? Perhaps. It certainly is right up there.

The first realization is the worst and questions abound. “Will he ever be “normal”? Will we be able to mainstream him in school? Will he be teased? Will he have friendsl? Will he ever go to college, get married, have kids?” These thoughts and so many more rocket through your noggin at a dizzying pace.

Despair can set in; suddenly the sky isn’t so blue and the trees are just not as green. There is a pall over your world and family and honestly there is not much to be done. It is hard on marriages and siblings. There is a lot of self blame and guilt. Finances, patience and emotions are stretched. Depression is common.

Grieving for this child you did not have is understandable and probably just needs to happen to run its course. Although, it can last a long time. Each time you see your child next to a typically developing peer, the reality bites you hard. Another wave of grief fogs your stockpiled hope and gathered optimism. Bouncing back from that is a learned thing, only getting easier with time.

I wish I knew how to make it easier. Unfortunately, its just plain old not easy. But, we can try to be pragmatic if not completely optimistic. We can learn to be dedicated despite our fear. We can teach acceptance and tolerance to our families and our communities. We can do what ever we need to do to make our special child’s future as bright as possible and be thankful for what we have.

We can also forgive ourselves and our fate. We can learn from the challenges and revel in these uniquely beautiful children. We can learn to accept them for who they are.

There is a place in the world for each one of us, no matter what.

Related Posts with Thumbnails