From the heart of a mom: Parenting my children with special needs, Part 2

For the record, I'm writing this post for four reasons. 1) For anyone who knows us personally. Understanding my kids a little better might be interesting/helpful to you. Or maybe not. :) 2) For my own reflection. Its always interesting to me to go back and see how far my kids have come. Special needs or otherwise. 3) For other moms who walk this road with me to feel normal. 4) For moms who have just started this journey of parenting a child (or children) with special needs, to prepare for what it might look like in their own family. This is our real life, day to day, story.

So, I told you that I'd share the why's and how's of Micah and Abby. But how do I explain something that I don't even fully understand myself? I can tell you that much of it is sensory. Sights, sounds, even social situations- its all very overwhelming for them. Another factor is structure. Many kids with all different special needs have a hard time when things aren't structured. When they don't know or understand what's going to happen next. Which leads to- difficulty with transitions. Its hard when they don't already know what they're transitioning too. Does that make sense? Also, crowds are... too much. Its really over stimulating. Abby doesn't do well with loud music. Its scary to her. The difficulties aren't limited to sensory, structure, and transitions. But these are some of the main elements for Micah and Abby specifically.

Like I said before, home is just home. When its just our family, its pretty low key.

I'd like to interject something for just a minute: Jake and I have said before, we wonder what people think our house is like. Because when company comes over, its definitely a mad house. Everyone is excited to see friends, show off rooms and toys, and the energy level explodes. But when its just us, we just hang out. For having six kids, even I would think that it would be louder or... something. I mean, we have the typical tantrums toddler boundary testing or the occasional fight argument over a toy. :) But for the most part, it really is pretty chill.

But back to Micah and Abby.

I don't feel like there is very much at all that's different about Micah and Abby at home. Yes, Abby can throw tantrums when she doesn't get her way. But so does Mabry. And Micah doesn't talk to express his needs, he signs. No biggy. They are both held to their developmentally appropriate expectations as children in our house. Share, be nice, no yelling, no whining, no hitting, say 'please' 'thank you' and 'I'm sorry', and if you don't eat what's served, you don't eat. Its no different for them than for their siblings. Abby might do silly things like hang her tongue out more or repeat everyone while they're talking, but... she's loved. She's accepted. Micah is more different because he's a boy than because he has Down Syndrome! He plays rough, eats twice as much as any of the other kids, and he thinks its funny to make fart noises. :)

But as I said in the last post, its when we go out that its hard. Not that we go out much. We don't eat out a whole lot (like maybe once a month), and we shop with them even less. Its been a long time since we've taken Micah and Abby into stores. Jake and I tag team shopping on his days off. One of us shops, the other stays home with all the littles. And when we do eat out, its usually our whole family, and we sort of tag team that too. We each take a big, a middle, and a little. (Like I take Ashley, Abby and Kate, he takes the other three. Though Ashley and Emily are really like, the assistants.) And by "take" I mean: make sure they aren't under the table, dumping out salt, coloring on the table or have something in their mouths that isn't food. Make sure they are eating and being quiet.

But that's not anything special, we did that when we just had two kids and none with special needs.

And at school they do okay. At least they do according to their teachers. No complaints. Micah was apparently a "pinball" the first couple of months of school, bouncing all over the room, but now he's doing great. Sitting at his desk, raising his hand, staying in line in the hall. Both are loved by their classmates and thrive with all of the structure that a school setting provides.

The hardest place... is church. I'll be honest, its not fun. And its totally not because of the church its self. We have a wonderful church that loves us and loves our kids. I'm so grateful for the people there and the ways they reach out to us. I don't know how people do it who aren't a part of a great church. Its just a ton of activity and commotion for Micah and Abby.

The sanctuary freaks Abby out. Its loud, its scary, and the vibration of the drums and instruments throws her over the edge. The hallways are intimidating because there's a whole lot of people who know her a lot better than she knows them. And they all want to tell her high. (But please don't stop telling her hi! More on that in part 3 of this fun filled series. :)) I mentioned in the last post that Abby does better in the classroom. And I really feel that that's true. I pick her up at the end of each service, paranoid, thinking there's no telling what stories I'm going to hear or what parent I need to track down and apologize to. But almost every Sunday, they tell me she was one of the best kids in the class. Well mannered, sweet and outgoing. For this reason, Abby's in a typical classroom setting. She's (as far as I know) the only child in there with any special needs. But back out into the hall way, is back out into sensory overload. And she's not a huge fan.

Micah on the other hand is just thrilled to be at church. So thrilled in fact, that walking slowly and patiently through the halls, waiting for each of his sisters to be checked into their classes, just makes no sense to him. Walking with Micah is more comparable to escorting an untamed baby chimpanzee than an actual human child. He's climbing my legs, the stroller,  hugging random strangers' legs, pulling to go into every classroom we pass, stopping to take his coat off, then his shirt... you might think I'm exaggerating. I'm really not. Now he might be still and quiet for small periods of time (if you have a nonverbal child, you'll understand that sometimes they can still manage to be the loudest) but in those moments he's usually huffing and puffing with exhaustion, chewing his tongue, deep in thought, concocting his next plan of attack. Its all great fun to him. But when he's in a hallway packed with people, many of them stopping to say hi to him, he's so far beyond sensory overload that he has no idea how to react other than pull on my arm, make growling and roaring noises (through smiles), and sometimes "pppttthhhhhh" in their face and laugh. Or if he really likes you back, he might throw his shoe at you.

Ok, so if I try to step back and read this through the eyes of someone who didn't live this, I think I would think "Um, I just wouldn't go to church any more!" But to put it in perspective, its only a couple of hours, once a week. And really, its just getting in and out the door. Micah IS in a special needs classroom with a one-on-one "buddy". And after I've dropped him off, I know they've got it.

But its still hard. Trying to keep Abby from being stressed out, keeping Micah walking normally...

and dealing with a 2 year old...

oh and a 7 month old...

its a lot.

I need to give some credit where credit is due. Ashley and Emily are a huge help. They totally hold hands for me when I need them too. And so long as we don't encounter too large a crowd or pass a room with really loud music, Micah and Abby will let them hold their hands so that I can hold Kate in one arm and Mabry's hand with the other. And unless we get the "wow, are these all your kids" comments, they're pretty unaffected by Micah and Abby's behaviors. They just sweetly hug them and try to comfort and calm.

~~~

To other moms of children with special needs, I know your pain. I've read your stories too. Lets hang in there together. Acceptance, empathy, and respect. They are the unspoken code of this club we didn't ask to be a part of, aren't they?

Another thing I keep reminding myself of (and a friend commented about, in the last post I think) is that so much of the craziness I deal with, everyone deals with. Its just the story of having kids. And its amplified when you have several kids. Please don't think I'm complaining when I talk about the difficulties. Or boasting when I tell you of the good parts! I'm just sharing what its like. This is what its like to raise the Spencer kids. :)

I'm fully confident that Christ has equipped me for every thing He's called me to do. My biggest call right now is raising children who love the Lord with their whole hearts and serve Him in all they do. Who are self sufficient as individuals and act as involved members of their community. Its no small task. For any mom. But with Christ in me, I'm up for the challenge.