Posts Tagged ‘Special education’

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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All in a Day’s Work

How do you prioritize when everything is ultimately important? when everything is #1?blue #1

How do you choose to spend your time when the whole list consists of urgent items?

Do you choose to breathe first or to make your heart beat first? They’re both critical.

That’s how I feel with trying to prioritize what to focus on with Chloe. How do I spend my time and energy when the needs are all so great? Where do I start? Where do I begin? Where do I focus?

Communication is #1 because everything else depends on it. If Chloe doesn’t have a way to communicate her wants and needs…if she can’t relate and give her opinion then what??

But her legs working enough to walk across the room is #1. Remaining functional enough to be on her feet when she wants to be is vital. It’s a skill and ability that we are fighting to keep. The battle against her tightening, weakening legs is one we have to fight with gusto.

black #1Her performing and succeeding in school is also #1. If she’s not successful in school, then her teachers won’t take her seriously. If we don’t work to find ways for Chloe to express what she knows…if we don’t empower her with the ability to express her knowledge, then how…how…? So this ever-growing pile of homework is top priority.

But what about practicing and exceeding in cello? It’s imperative that she grow her talent. It will allow her to be part of a “team” in orchestra in junior and high school. She loves it; she’s good at it. Her playing music speaks to people …speaks to her.

Independence and growing in work/chores/responsibility has to be #1. Self-feeding, personal hygiene skills — It’s those huge skills that will lead her to independence in life. Those skills will pave the way for self-care later in life. It’s ultra important for Chloe’s success.

Encouraging and growing her friendships should be a high priority. She has friends who love and enjoy her; inviting friends over and helping those relationships grow are key. Friendships will deter loneliness.

I. Can’t. Do It. All. There are 24 hours in the day.

What do you do when they’re all a #1 priority?

 

The Joy

I bawled. I hung up from talking to the teacher and bawled.

She called tonight before dinner asking for a paper I was to sign. Even though I had signed it and sent it back today, the last day of school before summer break, she hadn’t seen it. While we talked, she realized where the paper probably was so she said to disregard her call.

Then she stopped. She said, “No. Don’t disregard my call. It gives me the chance to say thank you for my necklace — I wore it today.”

And then she went on to tell me how much Chloe means to her … how much Chloe has changed her … and what a tremendous blessing it has been to have her. “I love Chloe and will always love Chloe.”

She mentioned the note I wrote to her that I stuck in the bag with her necklace. It meant a lot to her; she took it to heart, which is good because I wrote it from my heart.

The phone call was a bit awkward and incredibly emotional (and those who know me know emotion is not my forte!). The words came awkwardly, if at all. I feel speechless and forever indebted for the care this woman has taken of my daughter this school year. I assured her that the note I wrote to her was indeed heart-felt and that I would never be able to express to her what this year has been for our family — for Chloe.

Hoping it’s not too personal to share, I’m choosing to share it here since this is where I share my heart most of all and really paints a picture of my family’s gratitude for the team that taught Chloe this year:

We have no words to express what this year has been for our family — especially for Chloe. To be valued, to be appreciated, to be loved, to be held to standard, to be included, to be listened to and taught … and all the while be healed from past hurts. Your heart for teaching and for my daughter is gold and healing balm for us. Thank you for an amazing year!

Yes, it’s from the heart. And truly understated, if you ask me.

She went on to say that there’s no way Chloe benefitted more than she did this year; the teacher said she was the one who was blessed. And she was so glad that Chloe landed in her room this year.

The end of the phone call with the teacher is what pushed me over the edge to tears and sobs. She said she didn’t know what our summer looked like, but that she would like to write letters to Chloe and hoped that they could be pen pals. She also said maybe she can come over or meet us at a restaurant and hang out while Chloe plays … “so that you can stay connected to teachers who care.”

And I said, “Yes!”

I said that I would like it very much.

And my heart is full. My heart is full and overflowing — overflowing all down my face and dripping onto my shirt.

The crazy thing? Just a few hours before, Chloe’s aide made pretty much the same offer. It’s as though they can’t imagine the whole summer going by without getting to hang out with my kid.

And I’m finally letting myself believe it. After an entire school year of my precious girl being valued and cared for, I’m finally letting it really sink in. It’s trying to sink in as the tears are welling up. My daughter is truly valued, sincerely liked, and genuinely missed by folks who love her at her school.

I will refrain from asking what planet I’m on!! It’s crazy, indeed. Crazy good!!

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!

ChloeClass2013

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!

Chloe’s Valentines

Anthropomorphic Valentine, circa 1950–1960

Anthropomorphic Valentine, circa 1950–1960 (Photo credit: Wikipedia)

I had the list of Chloe’s classmates, two boxes of Valentine’s cards, and 3 packages of heart pencils. I had a black Sharpie for me, a red pen for her, and some tape. I ended up having to grab a pair of scissors since some of the Valentine’s card were quite unyielding and stubborn.

We sat in Chloe’s room with our supplies. I personally dread this particular activity every year — having 2 children who really struggle with handwriting having to write their name 22 times in a tiny space … grrrrr.

And I wasn’t sure how Chloe would react to this particular activity this year — she had been ill for a few days and wasn’t feeling up to par.

But I gathered our supplies, pretended to be excited, and we set to work.

I presented Chloe with the list of her classmates and asked her who she wanted to do first. After quickly scanning the page, she picked a name immediately and pointed to it with precision.

The name: Chloe M.

Oh, sheesh. Of course she chose herself! I forget that this precious child still often thinks she’s the only person on the planet. Or at least the only one who matters! 😉 I laughed and crossed out her name, explaining that she would get cards from the other kids tomorrow.

I again encouraged her to pick the name of the person she wanted to do first. She chose a name. She chose the other Chloe in her class. Did she choose it because she particularly likes that girl, or did she simply choose her because she likes her name — that wonderful name — Chloe?? Who knows. Who cares. Let’s just do Chloe’s card.

Chloe chose a Valentine card and a pencil for the other Chloe. I wrote the To section on the card and taped the pencil to the card and instructed Chloe to write her name on the From section of the card.

We went through her whole class list this way. She chose who to do next; she chose a card; she chose a pencil. I taped the pencil to the card, wrote the classmate’s name, and handed it to Chloe for her to sign her name.

She loved it. How do I know she loved it?

Well, you mean besides the fact that she did her Happy Growl the whole time?

I know she liked it because she continued to read that class list every time, and she continued to carefully and deliberately chose a name, a card and a pencil. She loved it. She participated to the very end.

I will add that she lost motivation toward the end. I’m not sure if she was just tired after writing her name 22 million 22 times or if she didn’t have the motivation since these last few classmates were her least favorites, or what.

When we were done, there were 3 Valentine cards left. We made one for her homeroom teacher and one for her aide. She enjoyed making those and acted a little bit like she was disappointed in the selection of cards and pencils for them — maybe she felt like she was giving them the sludge and wanted something better for them, I don’t know.

When we were done with her class and her teachers, there was one Valentine left. I showed the very last Valentine to Chloe and asked her if we should give the last one to Mrs. L (our next door neighbor who loves her very much and takes care of her several times a week) or if we should give the last one to Chloe.

Not surprisingly, she pointed to herself. She was pretty tickled that she was getting one of her own Valentines after all! 🙂

So on the last one, I taped the final pencil and wrote To: Chloe. Then I wrote From: Mom. And I gave it to her.

She was thrilled, let out a Happy Growl, read the card and studied the pencil several times. It was certainly turning  into a very Happy Valentine’s Day!

Homework

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!

Butterfly

As I’ve already said, Chloe is having such a great year of school this year. The team of teachers and aides supporting her are amazing and inspiring! I truly am very thankful for them for blessing Chloe and for teaching Chloe. Such a beautiful change compared to the last two years.

One of her teachers especially seems to have enjoyed connecting with her. This teacher was telling me today about their special relationship. She explained that Chloe really wants to please her and doesn’t like to disappoint her. If Chloe does something loud — screams out or slams her book — this teacher just quietly tells Chloe that that noise really frightened her or made her worry and asks her to do it more quietly next time. And Chloe is responding beautifully to her. (And what a lesson that I want to her learn across settings: her actions affect other people! She’s not the only person in the world!)

When I arrived at my meeting with this teacher today, she asked me, “Is Butterfly not with you today?”

“Excuse me?” I asked her, assuming I had misunderstood her.

And that’s when I learned that this special teacher has a special nickname for Chloe. She calls her Butterfly. She went on to explain their sweet relationship and how they relate to each other and ways that she shows Chloe that she values her and appreciates her input.

“We have a close relationship; that’s why I have a special name for her,” she explained with a smile. “And when I call her Butterfly, she smiles really big.”

Thank you, Lord, for this teacher! Thank you, Lord, for special relationships and sweet teachers who give my sweet girl special nicknames!

Today’s meeting sure did my heart some good. 🙂

Photo credit: themusicroom.net.au
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