The Detective

Out of sorts.magnifying glass

Emotional.

Just not right.

Overly dramatic.

Controlling/ bossy.

Out of her groove.

Not herself.

In a mood.

Goofy. <smh>

These are all phrases that I and/or Chloe’s therapist and/or Chloe’s Mimi said about her during her therapy session yesterday afternoon. None of us were frustrated with her. None of us were angry or short-tempered.

But we missed it.

All 3 of us love her and know her well. All 3 of us knew something was up. Was she tired? Not feeling well? Just out of routine since this was the first time to therapy in nearly a month?

We knew it was something. And we all gave her time and we listened. We all comforted and validated.

But we missed it.

Later that night I realized that it was her tummy. Her tummy wasn’t feeling right. She asked for food and more food and more food — much like an infant with tummy trouble. You know… the baby’s tummy feels awful, and he assumes it is because he is starving. Or at least he thinks more milk will help soothe his belly ache. Well, that’s what Chloe was doing so I knew it was her belly.

I got her ready for bed and put her to bed so she could sleep it off.

Then I got a text from her aide at school that she was going to stay home the next day. She was sick with a nasty stomach virus. Her tummy was cramping, she felt miserable, and it hurt to move.

Interesting. I immediately knew that Chloe had the same virus. She was feeling the same way. She didn’t have an attitude at therapy; it just hurt to move. She wasn’t averse to putting her feet on the ground to walk as much as she just wanted to keep her knees tucked up into her tummy where it felt a little more bearable. She didn’t lay back and close her eyes right in the middle of therapy to show that she was in control or to make a statement; she was literally glad to be still and close her eyes for a minute. She wasn’t making up the pain in her shoulder that she was crying about. And she wasn’t forgetting which shoulder was “hurting;” they were both hurting — she was hurting all over.

Poor baby.

We are all 3 lucky she didn’t just smack us across the face for not leaving her alone and letting her go to bed.

detectiveLife with a mostly nonverbal child is challenging. It’s guess-work. Even when I think I know her so well and know what she’s saying even before she “says” it, it is still guess-work at best. I am a constant detective, looking for clues. And I think I’m a darn good one most days. But it’s still guess-work, putting clues together and trying to make them make sense.

I was so happy that Chloe’s school aide was able to put words to how Chloe was feeling. The next morning when I texted the aide to find out how she was feeling (and probably how Chloe, too, was feeling), her answer was, “Like death.” Chloe had told me she felt yucky, but I didn’t realize she was feeling like death. I guess I’ll up my sympathy and carry on. <3

Forever Changed

To some it may have looked like a normal ol’ Valentine’s Day party. But it took my breath away.

I had an overwhelming feeling that I was witnessing history…that the world was changing right before my eyes…that the walls had fallen and eyes had been opened.

I needed to photograph it, to save it, to somehow capture what was happening.

I begged for eye contact with other mothers, searching their face to see if they were seeing what was happening right there before our eyes — to our children. It was happening to our children…to their children.

They were being changed. They had already been changed, actually. At the party they were just living in their change. They were living changed. And it was so natural. So beautiful.

Did the children even notice it? Did they feel it? Did they remember what life was like before they were changed? Did they even realize it happened? Did they understand the magnitude of it? the implications of it? I don’t think so.

It was just their Valentine’s Day party. They were having fun with friends at the 6th grade party. There was food, Valentines, hearts, and cupcakes. There was a photo booth, props, paper plates, and Capri Sun. There was laughter and giggling and pushing and teasing. They were friends.

They. were. friends.

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What I witnessed that day was a changed community. A changed community. 60-some-odd 6th graders who are forever changed. Forever different. And they were changed by my girl.

This group of children does life with Chloe. It doesn’t matter to them that she uses a wheelchair. It doesn’t matter to them that she doesn’t say much. She’s a part of the group, and they’re friends. She does life with them. They know her, and they’re comfortable with her.

They don’t greet her each morning because they pity her. They greet her each morning because she’s their friend.

They don’t get freaked out when Chloe gets intent on a mission and forgets to watch for their toes in her path; instead, they jump out of the way with a chuckle. They don’t stare when she cries out in class; instead, they ask her what’s wrong and encourage her to use her words. They don’t dismiss her when she makes noises with her mouth; instead, they use the context, look for clues, and figure out what she’s trying to say.

They listen to her. They know she has something to say, and they listen to her.

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And these 6th grade boys and girls? They will someday be Chloe’s next door neighbor. They will someday be her doctor or her boss. They will someday be Chloe’s pastor. And they will know her. They will be comfortable with her. And they will listen to her.

They will stand up for her and will speak up for her … because they know her and they know what she’s saying.

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These 6th graders aren’t like the kids at the mall who stop and stare at the sight of a girl using a wheelchair. They are no longer like the children in the store who act afraid when Chloe approaches them.

No. They are changed.

They are changed because they know Chloe.

Ask me if inclusion works. Ask me if I believe that all students benefit from inclusive education. Ask me if I think it will change the world.

Yes. Yes, yes, yes.

I just watched it happen. It happened over the last two years right in front of my eyes.

They. are. changed.

…Forever…

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And these 6th graders? When they see a girl at the mall who uses a wheelchair? Will they stare? Will they be frightened if the girl smiles at them or acts interested in something they’re holding? Nope. I’m pretty sure they will smile at her and say, “Hello.” And I’m guessing a good number of them will shake her hand or give her a high-five. They may even stop to listen to see if she has anything to say. Because they are forever changed.

Our Castle

Recently while driving home after having gathered the kids from school one afternoon, Zippy surveyed our van and smiled. Then in a self-reflective way, he slowly thought aloud, “This is like our little house, isn’t it?” He was referring to our van.

Strewn around in the van were backpacks filled with books and homework, shoes and socks that are always stripped off after barely getting the van door closed, snacks and empty snack wrappers, and a variety of office supplies and beauty supplies–because I tend to keep my car stocked with supplies we may need at some point.

“Yeah, this is like a little house for us, isn’t it?” he repeated, his wheels still turning.

We had each other, we had entertainment that we enjoyed pouring from the speakers of the van, and we had comfortable furniture to relax in. That sounds like a house…like a home.

Even though I had already twice agreed with him that, yes, this van is like our little house, he repeated his thought again because that’s what he does. “This is like our little house. We could live in here. Especially if the wheelchair wasn’t in the back.”

Our van keeps us warm in the winter, cool in the summer, dry whenever it ever decides to rain in Texas, and shields us from the sun and other elements. It is one of our safe havens where we spend more time than most families probably do.

“Elliot and I could sleep in the back even,” he continued thinking.

I agreed every time and smiled with him every time. It was like a little house. It had everything we really needed.

But in the end, Zippy decided he’s glad we don’t live in our van. He’s pleased that we have a much bigger house than our van is. In fact, comparatively, our house is a castle.

So, yeah, we’re both glad we have a castle to live in. :)

 

Close to Home

This week Chloe’s school has had a very scary, sickening chain of events. Evil and grossness and vile intent have hit way too close to home.

Read the story here.

The teenager was a classmate of Chloe’s. For 13 weeks, a pedophile sat in class, posing as someone he was not. With the sole purpose of gathering new, innocent, young victims.

Sickness.

Our elementary school community is devastated.

And our family was forced to have some really yucky conversations that no parent should have to have with their children. Conversations that no child should have to listen to, respond to, or think about.

The chances of Chloe being involved in any wrong-doing is slim to none since she has an aide with her most of the school day. But still the ugliness and the knowledge of such close evil has been a very hard pill to swallow.

We are left feeling vulnerable and violated.

Fear has found a way into our home. It has crept in and sneaks into our thoughts. And it fuels our imagination which, in turn, feeds the growing fear.

We wonder what else and who else are not what they seem. It’s pretty hard not to go there with your thoughts.

While the world went about its ways today, it was hard for our school community and our family to think about anything else.

It’s not fair that our children have to think on such things. It’s not fair that the school counselor had to spend her day talking to frightened students and parents.

At Elliot’s school, he was surprised that the topic only came up once. It was in his computer science class. Someone mentioned it, but the teacher was unaware of the grueling story. So the teacher pulled up the news story on his computer, and the class watched the news story together.

During the news story, Elliot said some of the students were laughing about it. They somehow found the deception and evil humorous. Elliot was appalled and spoke up about it. He explained with emotion that it’s not funny — “for 13 weeks my little sister sat in class with a pedophile!”

But maybe until you feel it close to home, it’s not real enough to be serious– at least to a roomful of high school students.

And tonight, life goes on. Hopefully victims are receiving comfort, teachers and administrators are having a good cry and a break from the media and the outraged public.

And hopefully time (and God) will do its work on lessening wounds and memories.

And what will likely remain and outshine the nastiness is the power and strength in community. In family.

A Birthday Celebration

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A birthday is certainly cause for balloons.

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Today was my dad’s first birthday since he died 4 months ago.

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The kids and I commemorated by writing love notes on balloons.

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“Happy Birthday!”

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“I love you!”

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“I miss you!”

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“I wish you were here!”

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“HBD”

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“I love you, Papa!”

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We took them outside….

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And then we counted down. 3-2-1-Go!

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And set the balloons off up to heaven.

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Happy birthday, Papa!

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We love you!

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Just … Forever Ago

Four months ago today, I prank called my dad when I called to wish my mom a happy birthday. Faking a weird accent, I asked to speak to the birthday girl. He didn’t understand my words and asked me to repeat them. I repeated them, but my accent mixed with my fighting back laughter made him unable to understand me. He declared that he could not understand what I said, apologized, and hung up on me before I could identify myself.

Later when I called back and confessed that I was actually the accented caller, we both laughed and laughed. “You got me! You sure got me!” he kept saying, tickled at himself for not knowing it was his own daughter being silly. He couldn’t wait to tell Mom the story. He got such a kick out of it.

After we laughed about the prank call, he told me he loved me, called me Baby, and hung up the phone.

It would be the last conversation I ever had with my dad.

The last “I love you, Baby.”

The last shared laughter.

And one last memory of a man I love very much.

It seems like an eternity ago. But it seems like just last week. How can that be?

It was the last time I heard his voice. And as usual, he made sure to let me know that he loved me, that he’s my greatest fan, that he believed in me, that he enjoyed me, … that he thought I was funny.

So many times in the last 4 months, I’ve wanted to call him to tell him about what’s going on. I’ve yearned to talk to him, knowing he would have some advice or encouragement for me. I’ve missed his too-loud smooch in my ear each time I leave Mom and Dad’s house.

I miss that man.

Friendship

I recently watched a video about a boy with Down syndrome who was included into a general education setting. The video gave a nutshell picture of the successes and the challenges of such a placement for this student.

I cried at the lunchroom scene the film included. The student, who had some “behaviors” that were worsening in 6th grade sat at the lunch table with a group of other boys. Without warning and quick-as-lightning, the boy reached over and grabbed another student’s roll right off his tray. The breadless boy and another student demanded the return of the dinner roll, telling the boy that “you can’t take someone else’s food!” But the boy held the roll tightly in his fist and refused its return, ignoring his friends’ pleas.

Finally, the breadless boy and all of the other boys got up and moved together to another table, shaking their heads in disgust and frustration. The boy was left at the table all alone with his stolen piece of bread still clenched tightly.

It was heartbreaking to watch. The boys tried to reason with the bread thief; they tried to be patient; they reminded him of the social rules. But in the end, they got frustrated and left.

And you can’t blame them. They are kids. Hungry kids. And their rights had been violated, basically. No, you cannot blame those boys at all. I mean, who knows what else the boy may snatch before they have a chance to eat it. And who knows how many items he’s snatched from them over the years while he struggled to control his impulses. And even the best of friends, the most patient of saints, has his limitations and feelings.

I don’t exaggerate when I say that only one day later I got word from school that Chloe had snatched her BFF’s cake pop at lunch! Yes! Seriously. Snatched it quick-as-lightning right from her lunch bag. And… and… and licked it!!! I’m not kidding! Tell me it isn’t so!

The movie played out in my head: all of the girls getting up, angry, and leaving Chloe at the table to finish her lunch alone.

I’m so grateful to report with a very full heart that Chloe’s BFF simply snatched the cake pop back, wiped it off, and ate it. Because that’s what BFFs do. And because Chloe’s BFF responded like she did, no one got up and left, and no one got angry. (Although I’m guessing Chloe was the recipient of several lectures from her friends about behaving appropriately and respecting others.)

But you can be sure that I’m terrified for the day Chloe’s BFFs run out of patience. I am still very much aware of that possibility. And it makes me sad.

But today: grateful. Grateful for friendship.

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