Posts Tagged ‘Kids’

Being Known and Being Missed

IMG_5296As we entered the building, there were greetings and cheers.

“Hi, Chloe!”


“Yay! There’s Chloe!”

Everyone was happy to see her. And she ate it all up. She waved at her friends and her fans alike as we entered into the cheer gym for the first day of practice for a new season.

What a great feeling to enter a place and be greeted by name by friends who love you and have missed you.

I’m so glad that Chloe has that feeling of acceptance and friendship in several different settings. At school each morning, she’s greeted energetically by sweet friends. At church, folks are glad to see her and greet her by name. And at cheerleading each week, when she enters, the room erupts with excitement.

Chloe over the years has gained confidence and awareness and the mutual respect of greeting others (usually, anyway!). She will look their way or wave or say Hi.

Friendship. Relationships. Being known. Being appreciated. Being missed when you’re not there. Being loved. Being seen and noticed.

Yes, Chloe matters to people. And nearly as exciting: those people matter to Chloe. J



Those who know me know that I LOVE SUMMER!! I love my kids being on summer vacation from school. It is a wonderful time of long, fun, relaxed hours and days together that are really mostly stress-free. I love it! I count down the days til summer finally arrives, and then I laze around and play hard with my kids!

We just finished our first week of summer. It was actually an oddly busy week for me as I had a couple of trainings and meetings. Elliot had a Tech Ed Camp Monday through Thursday so he, too, was busy. Chloe started summer school reading class last week, too, so I was running back and forth taking her to class, taking Elliot to camp, picking Chloe up from class, picking Elliot up from camp … repeat. It was fairly crazy.

But this next week won’t be quite as crazy. Chloe still has reading class for a couple of hours everyday, and I do have a couple of more meetings, but it will be a little more summerish and normal.

Also, next week, we will start our summer limits on screen time and start our summer goals for the summer. This past week, Zippy had unlimited hours on the TV and with the PS3 and wii; he literally could be found in front of one of those screens at all hours of the day. But it was all part of the first week of summer celebration. Hopefully the reality and cruelty of this next week won’t be too much for him to handle. 😉

Our goals for the summer (dare I share them here for all to keep me accountable??) include the following:

  • Weekly library visits (getting cards for the kids, too)
  • Reading daily
  • Keeping rooms tidy (I can hardly type that with a straight face!!)
  • Chores (more on that later)
  • Math/Reading practice for Chloe and Zippy
  • Inviting friends over to play (hopefully every week to keep us from being hermits!)
  • Exercising
  • Getting outside
  • Practicing instruments

We’re starting tomorrow so wish us luck!

Would love to hear how you organize and challenge your children during the summer. I always am looking for ideas and inspiration and encouragement!

Happy Summer! 🙂 Here’s hoping for many laughs and memory making with my kids!!

Stage Fright

Butterflies, cold feet, stage fright, nervous tummy — we’ve all experienced it. I have come to expect that sort of nervousness from Elliot before a big day or before a performance. He feels it, and he talks about how he’s getting nervous, etc. Zippy doesn’t really care that much to get very nervous — maybe he doesn’t even realize the potential of messing up on stage and doesn’t really care that people are watching him…, and Chloe has always seemed like it doesn’t really matter to her since in her viewpoint she’s the only person on the planet — and when you’re the only person on the planet, it doesn’t really matter that you are on stage.


Last night at Chloe’s cello recital, she experienced and expressed nervousness for the first time ever. And it was so severe that she was frozen in her steps!

I must say it was the funniest, most exciting thing I’ve watched in a long time. Stage fright is so amazingly typical for kids on recital night, and quite frankly, Chloe and I don’t have many typical experiences, especially when it comes to her emotions.

You will get the pleasure of watching the video below — just over 2 minutes of video of a girl scared stiff and refusing to hold her cello and her bow followed by her 6-second musical performance on which she did a fantastic job.

I am proud of the job she did! She pulled herself together for her recital piece. But it’s the 2 minutes before her piece that totally fascinate me. Had Paul started the video a couple of minutes earlier, you would have seen her less-than-speedy trip up the 3 stairs to the stage. Her nervous legs and feet were like lead refusing to move. I coaxed her up the first 2 steps, and then she just stopped– a frightened, frozen statue destined to a life forever stuck on the stairwell. The teacher came over and joined in the coaxing, “Just one more step, Chloe.”

She successfully, finally made it to the top of the stairs, both feet planted on the stage, and again she froze. Absolutely frozen stiff in her boots. Fear, anxiety, nerves almost visably wrapped around her skinny little legs, making it impossible for her to proceed a step further. When my coaxing and begging no longer worked, I gently lifted her little feet off the ground and scooted quickly and smoothly to the bench in the middle of the stage where I gently plopped her scared little body.

She sat, growling, with her arms wrapped tightly around the top of her head and refused to touch the dreaded cello which would play the dreaded beautiful music which would cause the audience to explode in dreaded uncontrolled applause. In the video, you will see the teacher and me working hard to convince Chloe to hold her cello and bow. You will see Chloe repeatedly wave Hello to the cello, to the bow, and to the piano, one time even greeting the bow that she’s wearing in her hair — bow, bow … see what she did there? You will see the very expensive and fragile cello nearly crash to the floor; you will see me finally, desperately tell the teacher to just go to the piano and start playing in hopes that Chloe will snap to it. Thankfully that plan worked. Chloe played her piece, jumped up for a bow, and even graced her patient audience with a second sitting bow. Success.

Sweet, entertaining success. I. Loved. It.

And Chloe survived (if just barely) her first solo recital.


Not My Deal, Really

This is not a new thought for me. In fact, the idea was first spoken to me when we still lived in Grand Rapids, MI so the kids would’ve had to have been younger than 3 and 2 years old. And I’m reminded of it now and then. I was recently reminded of it when I was belly-aching about how tough life is for ME.

Oh, brother.

Seriously. It was a day when things seemed especially difficult: I am still doing some of the things that all my friends stopped doing when their kids left the “baby stage;” I am having to carry all these supplies everywhere I go when others only have to remember to grab their kids; I am frustrated and sad that I couldn’t figure out what my daughter was trying to tell me. You get the picture. Just all of a sudden one day I was tired and frustrated and thought my life was so much worse than everyone else’s. I was mourning and fighting that I have such a load to carry. How could I carry on? Poor ME!!

And then I was reminded. This thing — this life, these disabilities, these hardships — are not unique and they aren’t mine. They aren’t mine.

When I remember that I’m just the one supporting my children with disability labels, I also remember that this whole deal is really their deal. They are the ones who really have to carry it. Chloe is the one who is stuck inside a body that doesn’t work like she wants it to work. Zippy is the one whose behaviors are so often out of his control, and then he’s stuck with the hurt that his actions have caused his loved ones. They are the ones who live everyday and every moment with their disability.

It puts it in perspective and helps me not get wrapped up and warped up into thinking it’s all about me and about being the mom of a child with disabilities. Ummmmm, no. It’s not about me. It’s about them, and it’s theirs.

Don’t get me wrong, parenting a child with disabilities is lots of work. It is work that takes over your life, mandates your every plan, highjacks every conversation, and monopolizes nearly every thought. True.

But it does me some good when I remember that it’s not about me. It’s about her. It’s about him. And it’s my job to support them in the very best ways I can. And I need to care for myself so that I have enough energy and emotion left to spend on them. But it’s really and truly about them.

It’s not mine. And it’s not about me. So I’m choosing to get over myself and get back to work.

Photo credit:

The Bigger Picture

I cried several times yesterday after hearing from a friend who has a young daughter who lives life with multiple disabilities. The young girl attends public school and is in a program that educates her in a special education classroom part of the day and then includes her in the general education classroom part of the day. How’s that working for her? Well, unfortunately, my friend received news that it is somewhat of a fail, apparently.

Inclusion. It means different things to different folks. To some it just means sharing the same location or the same room. To some it means visiting now and then. To some it means sneaking in the door occasionally, grabbing the closest desk to the door, and sitting there for a few minutes. To some it means allowing a student to participate in PE or music.

To me, inclusion means to be a part of the class. Not a visitor. Not a “friend from down the hall.”  Not the Inclusion Kids.

Inclusion means to be a member of the group. Equality, inclusion.

I received Chloe’s class picture yesterday. I spent nearly ten minutes looking at it. Looking at Chloe, sitting a little awkwardly next to the teacher, and noticing she’s not the only one who appears a little awkward. 😉 Looking at the teacher who truly adores and values my daughter. Looking at the girls — self-proclaimed friends of Chloe. Looking at the boys and the principal who all just accept Chloe as another one of the girls. Looking at Chloe’s aide who believes in Chloe and is only surprised when Chloe doesn’t succeed on a task. Looking at the class. The group. And knowing Chloe is a part of the group. I couldn’t stop looking.

It made me think of years past when Chloe wasn’t in the general education class photo. I remembered the years when I was surprised when I received Chloe’s class photo. The photo wasn’t what I expected. Chloe and six or eight other kids who receive special education services appeared in a tiny class photo with each other — set apart, segregated, separated, symbolizing how the school truly felt about them … about her. Knowing that the other girls in Chloe’s grade were taking home a completely different photo that didn’t include Chloe.

But this year is different. This year she is included. This year she is truly part of the group. And I couldn’t stop looking at the photo. I loved it. It warmed my heart and made me so thankful — so thankful for the teachers, the aide, the staff, the principal, everyone who has worked hard to make sure that Chloe is a part of the group. I was thankful.

Literally not an hour later, I heard from my friend who gave me the news that broke my heart. Her young daughter, who on paper was “included,” as it turns out was not truly included. She was not a part of the class.

It seems that on class picture day, the general education teacher asked the special education teacher if her class could take a photo with my friend’s daughter and a photo without her.  And so it happened that a photo was taken with her, and then (again symbolizing the teacher’s heart for “inclusion”) a photo was taken without her — a more accurate photo of her class.

And to make it worse, my friend’s young daughter heard the whole thing and was aware that she was left out of one of the photos.

To be honest with you, I hardly even know this friend’s daughter. I’ve only been around her a handful of times. Why in the world did I cry as much as I did if I hardly know her?

I think the answer is that when you believe so hard in something — like equality and inclusion and dignity for individuals who have a disability — and then you see it so totally fail … it tends to absolutely crush your hope. That blow means we are still so far away from reaching inclusion, from reaching a society that accepts my daughter and accepts my friend’s daughter.

I was crushed. I cried again later as I told Paul the story of the two class pictures.

Having so little hope, where do I go from here?

I pray that this teacher … and other teachers who are still completely in the dark about what it means to include a human being simply because she’s a human being … would be changed. I pray that something would happen to change them.

I know my advocacy and my speaking up will help with some change. I have dear friends who are speaking up with me and advocating with me. We will make our voices heard. But we are so few … and stories like this make the effort seem utterly hopeless.

I really want this world to be different for my kids!! I want it to be different for my grandkids!

My heart hurts — literally aches — from stories like this one. But I have to believe that my/our efforts will pay off. They will make a change.

I have to believe it. I do believe it. I believe that change can and will happen. I believe that situations and hearts and beliefs will change.

It happens. It sometimes happens. Doesn’t it?

Yes, it does. In fact, I have Chloe’s class photo to prove it!


I will continue to fight and advocate and speak up. And if I have to look at Chloe’s class photo everyday as motivation, then that’s what I’ll do!

Painful, Tear-Inducing Conversations

Sounds like this might be a tear jerker, eh? Well, believe me, it was practically a tear jerker for me, but thankfully we were able to laugh together in the midst of the pain …. 😉

I’m not positive that all parents experience this — I’m hoping y’all do — but it seems like Paul and I experience it all too often. Those conversations that you have with your children in which they appear so clueless, so … not-with-it-all, so …what-the-heck-is-going-on-here …. I obviously don’t know how to explain it. But as usual, please tell me I’m not alone here …

The scene: Paul checked out the graphic novel of The Lightning Thief for Zippy. Zippy, very excited, began reading it immediately. By dinner time he had read a couple of chapters. Below are some painful snippets of our dinner conversation:

Zippy: Elliot, is Luke in The Lightning Thief?

Elliot: Well, yeah! He’s like one of the main characters!

Zippy: I know that, but …

Me: What??? What do you mean you know that?? You just asked if he was even in the book!!

<shaking head>

Zippy: Elliot, does Luke fight Aries for the lightning bolt in The Lightning Thief?

Elliot: (with a how-could-you-be-so-stupid tone) It doesn’t have anything to do with the lightning bolt.

Zippy: (genuinely) Then why does he fight him?

Elliot: (frustrated) Because Aries was trying to get it!!

Silence … as Zippy and I just look at each other … stunned, … confused.

Me: (amazed at where I think this conversation is headed) Trying to get what?? (I nearly hated to ask…)

Elliot: (with his now-Mom’s-being-stupid tone) The lightning bolt!

Me: But you just said it had nothing to do with the lightning bolt!!

<shaking head, fighting tears>

Then Elliot informed Zippy that Rick Riordan (the author of the original novel) didn’t even write the graphic novel. I jumped in and informed my know-it-all teenager that Rick Riordan’s name is, in fact, on the book. Elliot was surprised and stood corrected.

Zippy’s response was a genuinely confused yet interested, “What book?


And that’s when I started screaming and yanking out clumps of my own hair.

How do I do it? And why do I have to do it? And how do either of them have intelligent conversations when I’m not there to help??!!

As I said, we all had a good laugh at their … their … odd and clueless … amazing … weird … clueless …. Oh, sheesh. I guess I have no words. Just shaking my head.


Not to disappoint, but this (surprisingly) isn’t a rant!

It is actually quite the opposite. 🙂

I already told you that Chloe has missed a lot of school because of absences. That means make-up work to complete at home. And she’s been doing great work!

She’s been doing great work at school and at home, actually! So proud of her and so in love with her teachers who are encouraging her to step up to their expectations.

The other day Chloe was completing a social studies project at home that she had missed at school. She needed to type 4 sentences about the Kawakana indians. (Ever heard of them?) She was copying the sentences directly from her social studies textbook. I videoed her working, and wanted to share it here. What a hard worker!

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