From the heart of a mom: Parenting my children with special needs, Part 1

Sometimes I have to remind myself that I have children with special needs. To me, they're not different. They're them. I don't compare them to others. Why would I? And compare them to what? Their siblings? Kids in their class? Others with special needs? Down Syndrome? Abby's just Abby, that's all. Just like Emily is Emily. Each unique and deeply loved as my children. Each of my six kids requiring different help with different chores, each growing at their own pace, at their own level of development. What special needs? I forget.

Then there are times that I'm painfully aware. Like, pushing your shoulders forward and caving your chest in because your heart is in physical pain, kind of aware. Like, when you open your eyes a little wider than normal and don't blink thinking that it will prevent the welling up tears from falling, kind of aware. Trying to change the subject and make your voice not quiver kind of aware. Painfully. Aware.

Those reminders most often come in public. School. Church. Stores. And sometimes they come at home. When we have guests over. Its in these times and places that I'm jolted back to reality and suddenly see my children the way that {I think} society see's them. I feel the stares. My mind imagines how their minds are judging. And I don't know if I want to hide and cry or go bite someone's head off. I think "Why can't they act the way they do at home? Why can't people see the Micah and Abby that I know and love?"

Its not other people's fault I feel this way. Its not Micah and Abby's fault I feel this way. I just need to deal. 

And there are things I could do to help these situations. Weighted/pressure vests. Earphones. Sometimes these things help bock the sensory input that sends them soaring. But sometimes I forget they need these things. Because at home, they simply don't. At home, they're just hang out. They're just kids.

I forget that in public Micah turns into a slobbering (because he forgets to swallow), laughing-at-everything-for-no-reason, incredible-hulk-strength, maniac. Or Abby puts her thumb in her mouth, finds a happy place and only comes out (when provoked) to grunt/shout a very ugly "NO" or "I don't WANT to" and immediately returns to her happy place.

There's just nothing I love more (note my sarcasm) than when someone says "Hi Abby! You look so cute today! Can I have a hug?" and Abby responds with a very rude and almost angry sounding, "no." Or when she goes into hysterics because Micah put one hand on the stroller she's sitting in. Like the heavy set woman from the movie "Awakenings" would freak out and scream when she would see a pen.

Now, sometimes she doesn't. Once she's in her classroom, safe and secure, she's back to her usual Abby self. That happy, fun loving, obedient, affectionate, kid that is the quintessential stereotype of a child with Down Syndrome. Micah doesn't quite get to that point, but he's better in class. Sort of. Ok, who'm I kidding? Micah's that way from the time we walk out the front door til the time gets home and crashes on the couch from sheer exhaustion.

If you're wondering, they do pretty good at school. Because they're there daily, its a familiar place. With familiar people and familiar routines. Just like home.

*sigh*

This is what its like to be  the mom of children with special needs   the mom of adopted and biological children with Down Syndrome  Micah and Abby's mom. Did you catch that? This isn't a blanket statement. I'm not saying all special needs, or specifically DS, moms feel this way. I'm saying I do, and others could.

I don't want sympathy. I don't want a metal. I don't even want a pat on the back or a "I don't know how you do it". I'm just giving you my perspective. This is my struggle. Its almost like I'm human or something. Its almost like I need to be reminded what my Savior promised me.


And He said to me, “My grace is sufficient for you, for My strength is made perfect in weakness.” Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me.(2 Corinthians 12:9)


Did you catch that? They aren't Micah and Abby's infirmities, they're mine. Micah and Abby are fearfully and wonderfully made. I'm the one who's got issues. I'm the weak one who needs strength. And some day when being in public doesn't make we want to cry or bite someones head off, you'll all know its Christ and not me.


So there you have it. 


And what is part 2?

I want to share the why's of Micah and Abby's behaviors. Not that I'm an expert, but I think if people (all 4 of you who read my blog) understand a little more about what sets them off, it'll help. So that'll be part 2. And last night after chatting with a couple of friends, I also want to talk about the how's. How to react to my kids when they don't act like "normal" kids. If I can even come up with an answer for that, it'll be part 3. We'll see.

Thanks to those who are reading and letting me share my heart. Stay tuned.