A Few Thoughts on Parents of Special Needs Kids

Before our little boy was diagnosed with Shwachman-Diamond Syndrome, I never really gave much thought to the needs of parents with kids with special needs. And while I would be the first to say that SDS isn't the worst possible diagnosis (and some would probably argue until the world ends that SDS makes him a true "special needs" kid), it also has given me a glimpse into the lives of other parents that do have truly special needs kiddos.

My Two Munchkins in a recent picture

With our daughter, if she had a cough or a sneeze, I never really had to worry it would turn into something more. (I did, of course, but she was never seriously sick.) If she missed being in the nursery at church one week, she'd be back the next week, maybe with the tiny tendrils left of a cold, but virtually all better.

Now, if my son coughs in the middle of the night--even if it's just once or twice--I wonder if he's coming down with a cold. Or the flu. Or worse. Will he have to be admitted to the hospital--again? How long will he stay?

And, it all runs through my brain in about one-half of a millisecond.

Every special needs kid is different. Whether the kid has SDS (like ours), leukemia, Downs Syndrome, or something else more rare like a muscle atrophy condition, there's an adjoining parent or two who struggles with the idiosyncrasies of their child's disease. With us, we've had to learn to accept the medications given daily (which I think is probably the same with most parents of kids with special needs) and the fact there will always be that "What If?" question in our brains. And the specialists that will have to be involved with his long-term care. And the fact he may not be as tall as his mom when he hits adulthood. (I really hope we're at least at eye-level. I'm a tall woman--5'8"--but I can't imagine having a child shorter than me when they're an adult!)

While most people tend to focus on the kids with special needs, sometimes the parents and sibling(s) get forgotten. If you're in this boat, maybe you should take a minute and give the mom or dad a call just to see how they're doing. Offer some babysitting time. Trust me--it's scary as a parent to hand your kid over to someone when you don't know what could go wrong--then you have the added concerns of medications, and it's nearly paralyzing. Since our son was diagnosed positively, I can count on two fingers how many times my husband and I have left both our kids with someone other than a family member. It's not that I don't trust anyone, it's that I personally feel it's probably overwhelming for someone to know what they need to do, even for something as "simple" as mealtime.

And, maybe I don't want to burden anyone else with the complexities. Who knows.

Question for you: do you know anyone with special needs kids? When was the last time you loved on the parents or siblings?

Until next time,

Harvest

by Foto3116

I grew up in the heart of wheat country--south central Kansas. Harvest is not an uncommon thing for me to witness. I remember growing up, there would be days we'd have to close up the house on nice days because there was a field just south of us, and the farmer was harvesting (or tilling sometimes) and it would stir up dust. My mom is an asthmatic with allergies, so the dust being blown in always caused problems--even with the house closed up.

Still, I love watching the big machines doing their jobs, row upon row being eaten up by that whirling harvester, soon to be turned into flour... or whatever else wheat is used for. Corn, milo, soybeans, and countless other grains grew in my area of the world. I even occasionally saw a cotton field!

Now, when I think of harvest time, I think of not just the big fields with family or commercial farmers in big rigs, but I also think of the small harvest--the one in a backyard. I'm hardly a green-thumb--TMOTH swears I have the ability to kill nearly every plant. He's almost right.

My mom grew tomatoes almost every year for several years. In the height of summer, there would be several weeks go by where she'd can a few days a week. Spaghetti sauce was a big one. While my family isn't Italian, we ate a lot of spaghetti. There's nothing better than homemade spaghetti sauce--with homegrown tomatoes!

I hope one day I can outgrow my black-thumb tendencies. I'd love to learn how to can for myself, and to teach my daughter when she's older. I've gotten a lot of encouragement from several friends, I just need to bite the bullet, get the equipment... and actually grow something worth canning! Then maybe next time, I can have a happy harvest, too.


Today's post has been a part of the ChristianWriters.com blog chain. For links to the other blogger's posts, please go here.

Until next time,

Growing Pains

If you've been around Word Wanderings very long, you know I've got two kids. My first, my daughter, just turned three. And in the last month or so, I've seen her grow up a lot. It's a little sad on one hand, but interesting to watch, too.

Being a typical three-year-old, my daughter is getting a bossy streak. She tries to boss TMOTH, me, the dog, and her little brother. She even tries to tell you where to go when driving. Talk about a backseat driver! There's nothing quite like a little girl going, "No, Mommy, that way! THAT WAY!" when you're out running errands. Usually, she just doesn't want to go home, or thinks we need to go somewhere else. Sonic is her favorite stop--and she knows where most of them in our normal areas of travel. (Of course, we just moved, so those normal areas are shifting.)

Having an independent streak can be dangerous. I've had to really work at stamping down on her independence lately. Not that I don't want her to be an independent woman one day, just not at the age of three! Running through Target or the grocery store is irresponsible and discourteous, and leaving the backyard--taking the dog with you--can lead to one or both getting hit by a car.

It makes me think about how God parents us. We make mistakes, He allows for punishment. It's kind of strange to think of a twenty-nine-year-old being parented (shouldn't I know what's going on by now?) but I've seen it happen. And, while I'm not necessarily sure every time what I'm supposed to learn, I can only hope I learn the lesson--as my daughter learns she can't run through Target or have that mini-Barbie that's in the checkout line.


Next week is my post for the ChristianWriters.com blog chain. The topic is "Harvest". I've been a little negligent about posting reminders about the blog chain, and I've since moved the list from my sidebar to a separate page. If you go here, you'll find the links for every post. We almost have a full month, and this next week is full! I hope you'll check out the posts.

Until next time,