real life with down syndrome

The Ups and Downs of Real Life Parenting

Here’s my friend, Sara, writing about parenting a child with Down syndrome…

So, a friend asked me to do a post for her website about being the parent of a child with special needs. She asked me on a good day, so I quickly agreed.

Then, I had a problem.

We had four fantastic days!

I kept wondering how I would write an article about parenting a child with special needs, when he was no different than any other kid.

Then yesterday happened, and I got inspired again…

We have four kids. Our oldest is a 9 year old girl, and then we have an almost 7 year old boy, Simon, with Down syndrome, a 3 year old typical boy, and an almost 1 year old typical boy.parenting with down syndrome

After our son Simon was born, I learned from my new network of parents, that “normal” isn’t necessarily the right term for our other kids. “Typical” is a little more accurate with less negative intonations toward the “special kid.”

Last night we were visiting with a group of friends who were having a gathering at a camp nearby. There were four families there, each with a large number of children in each family.

It was a beautiful chaos to some, and bit too much noise for me.

There were kids running around, kids crying, kids sitting and playing nicely, and so on. You get the picture-kids everywhere.

Part Ninja + Apraxia = Parental Frustration!

Here’s where the reboot came for me.

You see, Simon is a runner. He is an escape artist who I’m convinced is part ninja. He can bend himself in half without flinching, and he’s pretty small for his age, so he sneaks under the radar and sometimes under the counters without attracting too much attention.

Enter my husband. He was the Simon follower for the evening. He just followed him around to make sure he wasn’t getting into any trouble or getting too far away from the group.

Another thing to know is that Simon loves birds. If he sees a bird, he will follow it regardless of where it goes. If it goes across the road, Simon goes there too. No checking for cars, just following the bird. Sigh.

It was a frustrating evening for our family, as Simon shut down at supper time, and it took quite a while to get him up and going again and at the table to actually do some eating. We didn’t know what started the fink, as along with Down syndrome, he also has apraxia. That is a misconnection between the brain and the mouth. He knows what he wants to say, but his mouth won’t necessarily say what he wants.

He uses sign language, an iPad with an app that speaks for him when he presses buttons, and rough verbal approximations to communicate. It’s a complicated process, but he’s sometimes pretty good at letting people know what he wants.

Last night at supper was not a good example of that.

So, what was the most frustrating part?

Was it the fact that he wandered everywhere and had to have someone assigned to keep him from disappearing into the bush?

Was it the communication breakdown and subsequent rebuild?

Was it watching the “typical” kids play nicely?

I think it boiled down to the fact that he’s almost 7 and he still wanders.

Our other friends have kids who wander, but they are usually 2 or 3 years old. In another year or two, they will be able to stick close, and be safe.

We don’t know how long it will take for Simon to learn to stay close to us and not get sidetracked by his feathered friends.

It was a little bit of a burr for me, to be reminded that Simon is the same as other kids, just a lot slower than they are.

I try not to compare, I really do. But no matter how hard I try, it just kind of gets in there. The niggling in the back of my mind, says that other parents have it easier because their kid will grow up.

In some of my previous thought processing, I wanted to put a sticker on Simon that said, “I’m my own person. I will do things in my own time.” But, that is true of all our kids. They all do things at their own pace.

Why is it harder with Simon?

I think we parents of kids with special needs tend to put more pressure on ourselves. We see other kids succeeding, and we want that for our kids too. In a land of Instagram and Facebook, it’s sometimes too easy to see the success of others.

So, I guess the whole point of this long winded article is to say that yes, kids with special needs are different, but, they make progress, and comparing them only leads to frustration.

Day by Day

For my blog I usually work it out really well by the end to avoid being too much of a downer, but I’m not sure I can do that today. I know what I should say, what the Sunday school answers are, but I don’t know if we always need to hear that.

Do we sometimes just need to hear the ugly truth, and realize that other moms don’t have it all figured out either?

I’m going to say yes.

That is where I am going to leave it today. With being frustrated, and knowing that the right answer is out there, but being too worn out from picking battles, and picking up underwear off the floor, and picking noses.

We all have dump days. And that’s okay.

I guess this article is for the moms who need to know that we don’t all wrap up in shiny ribbon and turn out alright at the end of the day.

Some days, we cry ourselves to sleep. And we understand. That’s all.

 

 

Sara is the author of the blog, Going Up the Down Escalator, where she shares the highs and lows of parenting Simon and her other children. But you’re more likely to catch her on Facebook, adding humor and wit to each challenge that comes her way.

 

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