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.

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.

Whats new at our house

Here are some highlights and random tid bits of life at the Spencer house.

Micah is thriving at school and has begun to string signs together. In stead of grunts and pointing, he will actually sign to me: "I" "want" "milk" "please"! And in some cases he's verbalizing with his signs, which is something we weren't sure would ever happen. Love it.

Now that crawling is old news, Kate is starting to pull herself up to standing. She's not even 8 months old. If she weren't so stinkin cute smiling at me from over the ottoman, I'd make her sit down!

Ashley begged me to give her bangs, and I finally gave in. She loves them and I know its because she secretly thinks she looks like the grown-up Amy at the end of the movie Little Women. (Shh don't tell her I told you.)

Meanwhile Emily is growing her hair long. She looks like such a big girl with her thick, straight hair pulled back in a low pony tail. She's never had long hair, its always been a sassy little bob that didn't fit back into a pony. We also know that she needs glasses and will be getting some soon. Then she's gonna look really grown up and its probably gonna make me cry.

Abby and Mabry are becoming quite the little buddies. Mabry being a little advanced in her speech and Abby a little delayed, they've found this common ground and will hang out together for hours in the playroom in their own little imaginative world of baby dolls, dressed up as princesses, serving each other tea.

When Mabry wants something she knows she's not supposed to have (liiiike, a pen, her sisters' lip gloss, my phone, or anything else 2 year olds find fascinating) her new tactic is to close her eyes and stumble walk away with the assumption that because she can't see me, I can't see her.

Emily's gotten to skype a couple of times with her best friend Lily who moved away several months ago. Its the sweetest thing to see them talking. They discovered that they both got makeup for Christmas (for play, obviously) and they're hoping to have a "makeover skype date" soon.

Kate's babbling a ton. She's saying mama and dada (though not to us) and just before bedtime, she spends about 20 minutes perfecting the fine art of laughing and crying at the same time.

Though he has no basis for his theory, Micah truly believes if he pumps the lever on the toilet, it'll flush faster.

Following in the tradition of our other kids as toddlers, Mabry has claimed her favorite tv show to be "Nats and Wuby" (Max and Ruby). When Max inevitably makes some silly mistake, which is pretty much every episode, she laughs out loud and yells at the tv "Oh NATS! Siwwy." (With a "you crazy guy you" tone)

I wish there was some other news or fun tid bit I could give you about Abby but to be completely honest, the latest thing with her is that she strips naked at like 6am every morning and I don't know why. It doesn't seem to matter if she has a dirty diaper or not. Punishment isn't effective. She just decides she's done. With all of it. I go in every morning and find my little jay bird happily reading books or playing with her toys. She doesn't do it any other time of day. Just first thing in the morning. Lovely Abby. Lovely.

As for me I've been busy helping the kids make valentines for school (68 to be exact) and snazzy valentine boxes, working on the 1st grade art project for their school auction, helping our long time friend/babysitter with her wedding plans, doing some administrative stuff for our church women's retreat, and daily taming the laundry beast. Ya know. Same old same old.

Jake's been preaching in "big church" some recently. Some awesome stuff on discipleship and prayer. He actually preached parts 2 and 4 in a 7 part series (not yet finished) called "Church". You can check those out here and here.

In a couple of months we'll be celebrating our 10 year anniversary.... Crazy.

Anyway, those are some of the latest happenings in our world!


100

I just put the cutest little 100 year old man on the bus for his 100th day of school. :) I wasn't sure he would understand but he definitely did. He walked from the house to the bus hunched over holding his back!








He thinks he's hilarious!!!

"Traveling circus show of cuteness and snot"


If we're friends, will you please read this?

If there is anyone in your life whom you'd consider to be a large family, they probably want you to know this too.

Because I could not agree with this woman more! Every. Single. Point. Taking special note of points #1, 5 and 10. (Although I think #9 is my favorite.)

And to the lady in our church parking lot who literally rolled down her passenger side window so she could hang out of it and yell at me "ARE THOSE ALL YOUR KIDS": Really??? Really???...................................... Really???

C'mon people.

--->12 things mom's of big families may want you to know<---


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