Posts Tagged ‘children with disabilities’

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. ❤

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.

Eve

Today at church the children heard the story of Adam and Eve. The story included the apple, the serpent, the fig leaves, and the Garden of Eden.

For the game that accompanied the lesson, the kids dressed each other up as Adam and Eve.

Chloe was Eve for her team. The girls ran around the room, gathering supplies, and quickly decorated Chloe. Within moments she was completely decked out in Eve garb. She wore green crepe paper, a wreath of leaves on her head, and … a cool pair of shades.

This, folks, is what inclusion looks like at church. 🙂

photo

And now, for the rest of the story….

When it was time for the Adam and Eve game, Chloe got my attention and let me know she wanted to play the game. It’s not uncommon for the Sunday morning game to be a running around relay game that she has a hard time participating in. So this time she wanted to make it clear that she did actually want to play.

I happened to be the adult in Chloe’s group for this game so I informed a couple of the girls who were sorta taking charge that Chloe wanted to play this game and be Adam or Eve. They both looked at me like perhaps they didn’t speak English, but knowing that isn’t the case I didn’t restate my message or check for understanding — I thought the request was pretty clear and that it was a fair request from Chloe since she can’t really actively participate in a lot of the activities.

Well, lo and behold, when the game leader went around the circle and asked who from each group would be Adam and who would be Eve, these two girls announced that the two of them would be Adam and Eve. Hmmmmmmm. I guess I should have checked for understanding after all. 😉

I very casually reminded the two of them that Chloe would like to either be Adam or Eve and asked them to decide which of them would give Chloe their role. This time they looked at each other like maybe they didn’t speak English and sorta halfway pointed at each other silently. I gave them about a minute to work it out between them in whatever language they might choose, and then I asked them which role Chloe would be playing in the game. Again, I got confused looks that I finally determined were not looks of not knowing the language but were simply looks of total human selfishness (don’t hate! — we all struggle with it!!) that were just unwilling to budge for another person. I gave them one last opportunity to redeem themselves by giving an encouraging, knowing cue: “Girls, which of you will make a kind choice and be a good friend?”

After no action from either girl besides continued confused, stuck expressions, I let them both know that they were both relieved of their duty of Adam and Eve and that instead Chloe would be Eve, and a little boy on the team would be Adam.

Now before you go calling me a meanie, know that I would’ve done the exact same thing for any child if I saw a rare opportunity for him/her to fully participate. And also know that if I were the parent of one of the confused girls, I would want another adult to step in and help train my child’s heart in kindness and compassion and unselfishness. So no hard feelings, ok? It’s just part of children’s ministry. 🙂

I tell this story to illustrate the fact that sometimes inclusion is natural and friendship is natural and that amazingly cool things just happen in the hearts of children sometimes. But other times, children need guidance, and inclusion has to be guided and staged. But guess what? If done correctly, both types result in inclusion. And guess what else? My kid is blessed in both instances (if done with dignity and taste). And the other kids benefit, too, because which of us could not use a little heart training? Which of us couldn’t use a little “unsticking” when our hearts are stuck in selfish gear?

In the end, Chloe enjoyed getting “decorated” as Eve, and the other girls enjoyed running off, gathering supplies, and decorating Chloe. It was a win-win.

Fight

Chloe and I had our first screaming fight today.

Well, she was screaming. I was watching.

And, ok, it wasn’t the first, but it was the loudest to date.

She’s not feeling well. She had a cold this weekend and stayed home from school today to recover. She sorta went back and forth from feeling good and trying to dance to just feeling crummy and lying down.

Towards the end of the day when we were returning from picking up the boys from school, she was tired. And grumpy. (I’m not talking about her behind her back or saying anything she’s unaware of — she admitted to being grumpy. I mean, who could’ve denied it after the way she acted….)

She had asked me if she could have a turn with my phone. On the way to the boys’ school, I told her she had to wait until we got the boys just in case one of them called me for some reason. I needed to keep my phone.

Well, as sometimes happens, I forgot to let her have her turn with my phone after we got the boys.

So as we pulled in the driveway back home, she quite nastily demanded the use of my phone. I turned around and gave her the look. But the look didn’t have an effect on her. She just screamed again, “Phone! Phone! Phone! Phone! Phone!” signing phone as she swung her head back and forth.

I just watched in amazement, which was not the response she was looking for. So she took it up a notch. She slapped her arms to her sides and let out a holler.

My eyes just got bigger as I watched her from the front seat while the two of us sat in the van in the garage.

You have to understand that this girl went a big chunk of years showing no emotion; and even more years than that feeling the emotion but not knowing how to express it. But this screaming fit I was witnessing was an example of very well-expressed emotion. And it actually thrills me inside. When you have a child who is stuck in their body, unable to express themselves, and then they learn to emerge and express some emotion and communicate their feelings, it is truly amazing to watch.

That’s what was happening.

“Wow!” I said. “Are you being silly or are you grumpy?” I asked her, pretty surprised at her little show.

“No!!!” she screamed.

I asked again, “No, seriously. Are you grumpy?”

She growled and signed grumpy.

I strongly agreed with her that she was, indeed, grumpy and told her she could have a turn with my phone when we got in the house. But the promise of pleasure deferred wasn’t good enough for Little Miss Grumpy. Sitting in her carseat, she slapped her arms, threw her head all about, and screamed in a mocking way all sorts of nasty words, I’m sure. I just stood out of arms’ reach and watched her.

Knowing it usually helps to put words to her emotion, I explained the situation. “Ok! You’ve made your point! You’re frustrated that you had to wait, and I made it worse by talking to you about it, and now you’re really mad. Will you stop already??”

When she assured me that she was done with her fit, I moved in to help her get out of the car. But she wasn’t done with me. Her arms went to flapping, and her words went to flying, and I went to dodging and stifling laughter. She was really in a tizzy.

When I finally thought I was safe from the fit, I succeeded in helping her from the car and back into the house where she got a turn with the phone after a heart-felt apology.

What??!! Giving into her after throwing such a nasty fit?? Really. I mean, seriously, how could anyone turn down her request after that 5-star performance!?

photo credit: www.empoweringparents.com

Going to Camp

I went to church camp this year. Kids camp. I went to support Chloe so she could experience church camp for the first time.

the whole camp crew

It was no simple undertaking. It had to have the approval, blessing, and commitment of our children’s pastor. (She was gung-ho and actually encouraged/talked me into taking Chloe this year.) It meant Chloe and me having our own motel-type room to make caring for her possible and to protect her privacy/dignity. It meant packing lots of food and supplies – including her bed. It meant putting Chloe on a team with the right mix of kids and leaders who would do a good job at including her. It meant being prepared with knowing which games she could participate in and want to participate in.

Camp is a lot of work. (and I don’t mean for just me)

I went to church camp to support Chloe. That was my role for the whole week of camp – just to be Chloe’s support person. Our children’s pastor instructed me to go rest in our room any time Chloe needed it, to participate as much as we wanted to/were able to, to just enjoy and experience camp.

But if our children’s pastor was so excited about our going to camp, why in the world was I dreading it as much as I was? Why was I nearly hoping that something would happen to make us not be able to attend camp? Why was I nearing total shut-down as the day approached to leave for camp?

I was dreading it because I was afraid that I knew the feeling. And I wanted to avoid it. I had supported Chloe very similarly at Vacation Bible School for several years so I thought I knew the pain that was ahead for me – pain physically, spiritually, and emotionally.

Sounds so weird to say that supporting my child at VBS would be so painful. But it was. At VBS, there is much crazy dancing to loud music. My child who uses a wheelchair and has limited strength in her body needed help with the dance moves and to stay upright. When the motions to the song required jumping, it was me with my hands under her arms, grabbing her trunk and lifting her up in the air. The schedule is fast-moving from one room to the next to the next to the next, and the able-bodied kids always beat us to the next station since Chloe and I had to take the way-out-of-the-way accessible route every time. We were always the last ones to the next room. The night always includes a snack bar that served food Chloe couldn’t eat most nights. VBS was also notorious for bringing in visitors to our church – kids who didn’t know/understand Chloe, which meant my having to intervene and explain and answer questions and educate kids constantly for a week. And the whole activity of the night was just a glaring reminder of the things my girl couldn’t do. And then at the end of the evening, I was left with 2 kids (because Zippy was attending, too) who had had an overload of sensory input, and it was beyond their ability to handle it in the most peaceful way — 2 kids who were up way past their bedtimes and who were exhausted beyond reason. THAT’s what supporting Chloe at VBS was like. It was brutal.

Being Chloe’s support person at VBS, I wasn’t a counselor…but I wasn’t a kid either…I was just Chloe’s support person, and it was weird. I felt alone and weird. VBS week has annually been probably the hardest, most isolating week of my life.

(As is sometimes the case, I feel like I need to add something here. My church has been amazing. The people have always included and valued Chloe – it has been a work in progress. But I need to say here that it wasn’t anyone’s doing or wrong doing that made the week hard for me; in fact, I’m guessing my church friends who read this will be shocked that I felt that way. I tried to hide my hurt and suck it up so my kid could enjoy VBS, and quite honestly it wasn’t until recently that I was able to put into words some of the reasons why VBS is such a difficult experience for me. And a side note: Over the years, Chloe has progressed to the point that she was able to enjoy the snack 3 of the 5 nights this year! And also this year I requested that someone else support Chloe so I could volunteer elsewhere. It wasn’t as painful a week for me this time….)

And that’s why I was dreading camp. I figured it was like VBS –only worse since camp is 24 hours a day!

But I was pleasantly surprised.

We ended up having a really good time, and it was much easier physically and emotionally than I was expecting.

the orange team!

First, camp has some downtime built into it. While VBS is nonstop fun and activity for 3 hours a day, the week of camp has some downtime, making it way more doable physically than 24 hour VBS would. Second, I was recognized and treated more as a leader at camp. (I think because there was time to do it!) When leaders were sitting around talking, I was one of them. When the leaders went first at one of the meals, someone grabbed me and included me. Third, Chloe could do as much of the camp activity as she wanted to. Free time was exactly that – she got to choose what we did. And fourth, it was very obvious to me that Chloe’s participation at camp had been thought out – from lining up the golf cart to take her back and forth … to her small group leader having their meeting over on the couches which made it easier for Chloe when she was tired at that time of the day … and many others.

Chloe had a ball. She loved the dancing and worship. She loved the mud pit and the giant slip n slide. She loved the water balloons and the swimming pool.

Chloe inching into the mud pit

The two of us having a motel-style room worked out perfectly for us. She had her bed, her privacy, a place to relax when she needed it, a private shower/bath, a little fridge to store her food and drinks, etc.

She made new friends and hung out with old ones. She had kids praying for her, greeting her, and hugging her. People were genuinely glad she was there. And I think she was, too. And, again, I think part of it was that there was time for that to happen.

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The camp itself was glad to have Chloe there, I think. The camp director was a paramedic and was interested in Chloe and welcomed her. Most of the campus of this particular church camp was accessible for Chloe’s wheelchair. (Although they could certainly stand to do some work on their thresholds as most of them were difficult to maneuver over – one time I even sent Chloe flying out of her chair when she forgot to buckle up. Oops!!)

Overall, camp was a great experience for Chloe, and I’m glad that both Chloe and I got to experience it. I think we would both be open to going to church camp again in the future!

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!

Chatty

For those who don’t know, Chloe, my youngest is mostly nonverbal — meaning she doesn’t use spoken language to communicate usually. Instead, she uses sign language, gestures, a communication device, and any other means she comes up with to get her point across.

She’s brilliant. While you and I and the rest of my family easily form the words, create the sentences and spurt it effortlessly out of our mouths, Chloe has to create a way to communicate with the person she’s trying to reach. And she amazes me.

I told you last week about her bargaining for more pudding. Well, she continues to make strides in her communication. These strides come slowly usually since she’s so laid back — usually a good trait, but for her it sorta cheats her out of communication since she’d usually rather just do without than to put forth the effort.

But yesterday before school she made me smile with her communication efforts again. She ate breakfast very very slowly. She was sleepy and moved in slow motion all morning. The result — no time for pudding after breakfast. (What??!! You don’t give pudding as a breakfast dessert to your kids?? Poor things!)

When she asked for pudding after breakfast, I told her that no, there was no time for pudding. And instead of just accepting my answer or throwing something or any number of responses, she said, “Yes! Pudding!”

Oh. my. gosh. She’s arguing with me now! Classic! Am I the first mom of an 11-year-old girl who celebrated the fact that my daughter was arguing with me?

Then this morning … Hmmmmm. Just realizing all of this communication is centered around food — particularly pudding. Seems it’s quite the incentive currently!

This morning, I offered Chloe a pudding that I opened last night. Since it was open, I put it in the fridge overnight. Chloe isn’t accustomed to cold pudding so we discussed the temperature of the pudding while she gulped it down. When it was gone, she signed and vocalized, “More cold pudding.”

Yep, she just communicated a whole sentence, a very direct and specific request, included an adjective, and didn’t say please!!

I love it!

I love my girl!

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