Posts Tagged ‘disabilities’

Choices

As each of you probably know by now, I am a huge supporter and advocate for inclusion — in school, in church, in the community. Therefore, you might be surprised to know that Chloe is participating this year in a cheerleading program specially designed for children with disabilities.

Let me explain my decision.

Last year, I signed Chloe up for a cheer team — just a regular ol’ community cheer team. It was important to me for her to be involved and included in a cheer team open to all kids. I didn’t give the organization a heads-up of Chloe’s disabilities or anything; we just showed up on day one and expected to be able to participate. While we got some surprised looks and weirded out a few girls by Chloe’s not respecting their personal bubbles, she was mostly accepted and participated quite well.

She loved the dance moves and the routine that the team worked on. I was amazed at how well her little body kept up with the other girls. Oftentimes she was either a couple beats behind or stopping for a few beats in anticipation of a couple beats’ moves that she did right on cue with the team. I was impressed. Yes, she stuck out a tad, but she kept up and did well.

Well, there was that one night when the girls were stretching at the beginning of class and Chloe climbed up on top of another little girl who was doing a straddle stretch, squishing the little girl right into the floor on her nose while the little girl just let her body fold tightly in half and remained silent under Chloe’s weight … yeah, that …

… oh, and that one night that Chloe invaded one girl’s space and that girl scooted over into another girl’s space who scooted into another girl’s space until that whole line of little cheerleaders was bunched over on the side like a little football huddle …

yeah, we had a few hiccups …

… but it was mostly successful. And Chloe was cheering with typical kids … and those kids were learning what it means to include others.

Well, over the course of the past year or so I have been researching/reading about different adults with disabilities and their personal opinions on sports and inclusion. I was surprised to learn that some adults with disabilities preferred segregated sports; not everyone wanted to participate with the able-bodied kids. Yes, some of them preferred integrated sports programs, but some did not. The constant factor that I found true of all the adults with disabilities that I read about: they each felt very strongly one way or the other about their opinion on sports!

Learning about this difference in opinion, I really wondered what was best for Chloe and mostly wondered how Chloe felt about participating in sports. Would she prefer to be teamed with like-abled kids? Or would she prefer to be teamed with kids who had no disability label?

I decided that since Chloe is 11 (she was actually 10 at the time), that she is old enough to have an opinion about it. And I wanted to honor that opinion. The problem was, Chloe didn’t have experience with being on a team designed especially for kids with disabilities.

So I made a plan to introduce her to both kinds of sports — segregated vs. integrated sports. And we are following that plan to introduce both types of sports programs to Chloe and then to let her choose.

Please know that I go back and forth on this issue in my head and in my heart since I feel so very strongly about inclusion. Inclusion, inclusion, inclusion! But the truth is, that another thing that is important to me when it comes to individuals with a disability, is the right to choose. The right to an opinion, to speak that opinion, and to have it respected. The right to self-determination. “This is what I want for me!” “Listen to me!” type of right. It’s important for all people with disabilities; and it’s important for Chloe.

So I signed Chloe up for a cheer team for children with disabilities. Each cheerleader has a staffer assigned to them to guide them and support them when needed. Chloe’s staffer is about 6 months older than she is — so she’s a peer — and is on the competitive cheer team at the same gym. These girls stay after their team’s practice and run through the routine with Chloe’s cheer team.

So Chloe is being introduced to this type of sports program. On the mat are some children with disabilities and more than half (the staffers who have volunteered to be a part of this team, too) of the children do not have disabilities.

I plan to sign Chloe up for another regular ol’ community cheer group this fall and then let her choose her preference once she sees the differences in the two programs. I have a feeling my little stubborn one will have a definite opinion one way or the other. And I will strive not to persuade her or influence her decision. I truly want it to be her decision and her choice. I want it to be an act of Self-Determination.

All I know right now is my girl loves to cheer!!!!

So stay tuned!

(While I hesitate to even voice my opinion on the matter since I’m trying to leave it up to her, stay tuned to read my pros and cons of the 2 cheer programs we’ve experienced thus far….)

photo credit: web-dealing.com
Advertisements

How High??

I’ve said a million and one times that my girl would love to sit in the corner and play with baby toys all day everyday. She would also love to convince everyone that that is all she’s capable of.

Chloe is a smart little girl, and she’s amazing at fooling people — and she’s equally amazing at “reading” people.

How many times have I said that if you succeed at getting my girl’s heart, she’ll do anything for you? I’ve said it over and over and over. If Chloe knows you care about her and that you believe in her, then she’ll work for you and obey you. If Chloe doesn’t think you care about her … if she knows you don’t think she can do it, then I can promise you she won’t do whatever it is you have asked her to do. It’s how she ticks!

A great example of this is to compare last school year to this school year. Night and day! Last year, Chloe’s teachers were convinced that she knew nothing and was not capable of succeeding. They were convinced that she couldn’t read and couldn’t comprehend. They were convinced that Chloe did not belong in the general education classroom. And guess what? Chloe lived right up to their expectations. The result? A terrible year for everyone and a little girl who did exactly what her teachers expected of her, unfortunately.

Compare that to this year’s absolute opposite experience. The teachers and Chloe’s assistant are convinced that she knows it all. They are convinced that she can do and that she can read and that she can understand and that she can succeed. And they work hard at helping Chloe belong in the general education classroom. And guess what? Chloe is living right up to their expectations! This year miraculously (NOT!), Chloe is reading at grade level. Chloe is writing paragraphs. Chloe is succeeding. And the difference truly is the expectations and the heart of the staff of people working with her this year.

The moral of the story? We must be careful not to sell anyone short. We must always assume competency and act accordingly.

And just know that if you ever tell my little girl to jump, expect her to ask in her own way, “How high?”  And you can be sure that she will jump precisely according to your answer ….

Getting Noticed

I have often said that our family tends to stick out like a sore thumb.

On the best of days, we are at least an inter-racial family which makes heads turn; and we have Chloe who is either in her wheelchair or is walking wobbly, fighting gravity with each step, which also causes folks to look. Add to that the days that one of the children is in a mood or is loud or ornery, the times when we have some extra equipment or whatever, and what you have is a family who really sticks out. We get noticed.

A good thing (I think) is that Paul and I are both ultra laid back so at least our anxieties or noise or activity don’t add to the picture in an annoying sort of way. (Unless folks are annoyed that we aren’t more bothered by our lives!)

But rest assured, our family cannot sneak into any place. No tiptoeing in for us! It is as though our presence is a magnet and the general population’s heads are attached to the other pole of the magnet, snapping them quickly in our direction as the spotlight lands right on us!

I’m sure it was no different today when at lunch time the kids and I walked into Discount Tire, seeking new tires for our van. I hopped out of the car and hurried to be next in line since the store seemed a little crowded. Zippy followed shortly after me and found a seat. Elliot got Chloe out of the car and carried her iPad for her and helped her walk into the tire place.

Chloe had to stop and rub on a couple of the tires on display that had little knobbies sticking up that made her giggle. Elliot stood patiently by and even reached over to see if the tires were everything Chloe was making them out to be. When Chloe had her fill of the knobbies, Elliot led her over to a seat and got her situated to wait — all while I stood in line at the counter.

A few minutes later, I walked out to the van with the tire guy to inspect the tires. As I walked back in the door, an older gentleman held the door open for me, and I could feel him looking intently into my face, begging me to look at him. When I looked up, I saw kind eyes … kind eyes that longed to return a blessing to me.

“I am so happy to see that big brother help his sister,” he said.

“Oh, thank you. He is a great big brother,” I said with a smile.

“He really is! Please tell him that I said so,” he added with sincerity. “He needs to hear that…. And so do you,” he finished.

And as I sat down, I couldn’t help but smile. Yes, we got everyone’s attention as usual. But today at least we were a blessing to one man.

It was interesting to me, too, how for the rest of the visit to the tire store, I was more aware of us being on stage.
I was more aware that people were watching.

Watching me feed Chloe her lunch of refried beans. Watching me sign “I love you” phrases back and forth with Zippy who sat across the room from me. Watching me clean up the floor after Chloe dropped her drink. Watching Elliot tell Chloe not to sit on the dirty floor. Watching my precious children waiting patiently and getting excited when the tire guy drove our van into the big garage. Watching Elliot support Chloe as she walked back outside to the van while I paid.

It’s nice to be able to bless others sometimes. And super nice when they tell us that we’ve blessed them!

So with 4 new tires and 4 happy hearts, we went on our way, continuing our errands.

When Inclusion Works

As you know by now, I really believe in inclusion. I think inclusion is nearly always best! I agree that there are times — very much the minority, in my opinion — when full inclusion is not what’s best for an individual with disabilities. But most of the time, I am a strong proponent for inclusion. I think it’s best for the individuals who live life with a disability and best for the rest of the world — sometimes especially beneficial for those without a disability. It is a win-win, in my opinion, most of the time. (No secrets here … you already knew that about me!)

I have also mentioned before the ironic and terrible issue of people with disabilities oftentimes not being welcomed in church. I know it sounds awful, but churches are not real open to someone who may disrupt the service or the flow or the peace of their Sunday morning for the most part. Most families who have someone who has a disability just do not go to church. Crazy, right?

Thankfully, my church is the exception. (And again, I think the number of churches open to those who have disabilities is growing. Thank God!) We have had a great experience with our church as a whole and with the children’s department at our church.

The people at our church know Chloe and accept who she is and how she operates. They appreciate her. They talk to her. They let her hug them or ignore them, whichever Chloe happens to do on any particular day. They enjoy it when she dances in church. And they are okay with her choosing a lap to crawl up into.

In the children’s ministry area, each Sunday, there is an older elementary or junior high girl assigned to Chloe. That helper is to keep her safe and help her stay on task during the service. That helper sits by Chloe during the lesson and helps her participate. Oftentimes, it’s that helper who dances with Chloe during worship. It’s that helper who redirects Chloe when she needs it. And it’s that helper who alerts an adult if Chloe has a need that requires an adult.

Mostly, the people at my church aren’t surprised by Chloe. Mostly, no one is uncomfortable with Chloe. Chloe fits in and people move over and allow her space to participate.

The amazing difference that Chloe’s being included in this part of society is making really came to fruition one Sunday when a family visited our church for the first time. This family had a daughter who was close in age to Chloe. While their daughter had a different diagnosis than Chloe, she presented in many similar ways to Chloe. Their daughter is mostly nonverbal; she needs support when standing and walking; she might tend to wander if not reigned in a little. By the time we got to church that Sunday, a couple of the older girls had stepped in to be this new girl’s helpers. These helpers weren’t scared of this new girl; these helpers didn’t have to stare or laugh at this new little girl; the adult volunteers weren’t at a loss of how to minister to this family. It was very easy and very natural for our church to step in and support this new little girl and her family.

And it was all because of including Chloe. Since they have been including Chloe so beautifully and successfully, it was natural and easy for them to reach out to this new family.

Knowing how going to church can be with a child with disabilities, I am sure that this new family was thrilled and surprised and blessed that their daughter was so easily accepted and cared for.

And it was one of the happiest days of my life. Really.

And it reminds me that the more our children are out and about, the more society will accept them. The reason people get nervous around folks who have a disability? It’s because they’re not used to being around folks with disabilities. Plain and simple.

But if they’re regularly around folks with disabilities? Well, then, it’s no big deal.

Will effectively ministering to all of these families who have disabilities take time and practice? Will it take lots of support and volunteers? Yes, it will.

But I’ve experienced it. And it works.

Praise God! Let all families who have a child with a disability praise God, too, if they choose to!

(BTW, I used the example of a child with a disability in this post, but another huge hole in the church is accepting and ministering to adults with disabilities. The same sort of plan would work for that population, too. Again, the more they are out in the community, the more the community gets accustomed to supporting them. It could prove to be a lovely circle of effects!)

{Do you have stories of how churches have done well or not done so well in this area? I’d love to hear about it!}

I Still Want In

I Still Want In

by Kelly Mastin

I don’t learn like the other kids.

I don’t laugh at your jokes.

Sometimes I make funny noises.

But I still want in.

 

I don’t answer your questions when you ask them.

You think I’m not listening.

I drop or throw my pencil.

But I still want in.

 

I bump into things and make a big mess.

I stumble when I walk.

I need extra support.

But I still want in.

 

I growl or cry or kick my legs.

I push my book off my desk.

I don’t finish my worksheet.

But I still want in.

 

My body frustrates me.

It doesn’t do what I try.

You don’t notice my efforts.

But I still want in.

 

You don’t understand my words.

You misunderstand my frustrations.

You misinterpret me and write me off.

But I still want in.

 

You don’t think I’m learning.

You don’t think I belong.

You don’t think I’m capable.

But I still want in.

 

I still want in.

The Bed Tent Saga — Update

This bed tent saga has been going on now for years . . . .  It is the challenge of trying to keep Chloe safely in her bed all night.  It often takes Chloe hours to fall asleep, and sometimes she awakens in the night and stays awake for hours.  She doesn’t have judgement for what are good choices and what are bad choices.  She doesn’t fear danger and doesn’t seem to care much for what’s safe or not safe.  When she is awake and milling about, she is silent so we usually don’t even know she’s on the move.  She has been known to wander out of her room . . . out of the house . . . .  And we have struggled for years on how to keep her safely contained during the night.

Our story has included several tents, several constructed bed-things, lots of duct tape and caribiners, broken zippers, ripped mesh liners . . . I could go on and on trying to catch you up on our saga.  The photo below of all the tents . . . ummm, yeah, I think we’ve tried about that many . . .

Tents at the camping site at the Lowlands fest...

Image via Wikipedia

And this whole bed tent / special needs bed / safe sleep for children with disabilities has remained the number one way that people find my blog.  It is a huge need in the disability community.  And in the past years, our options have been few.

I have not kept you updated on our bedtent saga lately because I was not at all excited about where it was and where it was headed.  Everything we have continued to try has failed miserably.  My precious girl has continued to get out of her bed, have a little party in her room, and get very little sleep.  Very. little. sleep.

Very little sleep doesn’t make for a good day at school.  Just sayin’.

I, too, have continued to lose sleep from checking on her numerous times each night and worrying about her every night.  Paul and I and our sitters have continued to try creative ways to keep Chloe safe at night.  But most nights we have failed miserably, and Chloe has gotten out and proceeded to party as mentioned above.

Thankfully, most of her middle-of-the-night parties have stayed in her room lately, which has not always been the case.  Safety has not at all been guaranteed.  And that really affects a mama’s sleep!

And very little sleep doesn’t make for a good day for a mama either.  Just sayin’.

We repaired the Nickel Bed Tent over and over and over.  The flimsy mesh of the tent continued to just rip to shreds.  I had to sew a piece of fabric over the door after Chloe completely ripped it up.  And when she tore that up, I finally had to cover the whole door in duct tape.  (I didn’t take photos of any of this because I was NOT having fun and wasn’t in the mood to talk about it.  Sorry.)  The zippers continued to break . . . .  Paul kept fixing them and rigging them.  But finally we admitted that it was time to put the Nickel to rest for good.

But now what?

Well, Paul bought a little 2 man camping tent from Walmart, and we put Chloe’s mattress on the floor of the tent.  This worked for a while.  I was never wild about the arrangement since camping tents are mostly canvas (or whatever that material is) with mesh only on the windows and doors for the most part.  I didn’t like the lack of ventilation — I was always worried that she would be hot in the tent.  Also, most nights instead of sleeping on her soft mattress, Chloe would sleep on the plasticky canvas by the door of the tent beside her mattress!  It drove me bananas.  Every night I would remind her to stay up on the soft mattress. . . . Ugh.  I did not like using the camping tent at all.  I didn’t feel that it was a very safe option for Chloe.  And the zipper broke before too long, and we found ourselves having to rig the thing up every night, hoping that the tent would contain her and keep her safe.  But most nights it did not.  She escaped and escaped and escaped.

It is very difficult to relax and sleep when you are not sure that your daughter is safe.  Don’t know if you’ve ever experienced that or not, but trust me on this one.

Knowing that so many of you experience the same. exact. scenario. every. night, I really wished I could come up with a wonderful and safe solution for our children.  But each night that Paul and I were defeated in our struggle, it got more and more frustrating.  And it is simply a terrible feeling  not being able to ensure your child’s safety.

OH, but friends!!

I have some news for you!!  For a week now, we have put Chloe to bed and then turned and walked out of her room, knowing without a doubt that she was going to be right there safe in her bed when we woke up in the morning.  For an entire week, I have not checked on her one time!  Not once!  I seriously cannot ever remember going even a night without checking on her multiple times!  I am excited to share the news with you about what we discovered!

(But if I told you about itnow, this post would be TOO LONG!  So you have to come back here and read about it tomorrow.  And I will try to be patient and not spill the beans before then!)

International Day of Acceptance

I am bogged down with emotion as I prepare for another meeting with Chloe’s school today. My heart, my resolve, and my brain are all very tired and stretched thin. I would love your prayers today if you think about us.

Today, January 20th, is International Day of Acceptance. I was going to attempt to write a wonderful post about what this day means to me and to my family this year. But, as I said, I’m a little emotionally-spent right at the moment.  But in re-reading my post from last year, I have to concur that that is what International Day of Acceptance means to us.  You can reread it here.  🙂

We all have our Wheelchair Heart t-shirts to wear today — even my dad has one to wear this year!

Today we are celebrating and embracing Zachary just the way he is … for it is his disabilities that make him who he is  … that make US what WE are.  And the more I can educate the people around us on his hidden disabilities, the more he will be accepted and embraced and empowered.  Really.

Today we celebrate Chloe just the way she is. . . for it is her disabilities that make her who she is.  She is a strong girl with a perseverance that just won’t stop.  She has a tender heart that has room to love a million more.  And the more I can educate the people around her the more she can live her life to the fullest without being held back or pitied.  For it is pity that will slam on the brakes to her success.

I wear my t-shirt proudly today.  I’m very proud to have Zach and Chloe in my life.  I’m very proud to be a part of the disability community.  I’m very proud to have many friends who live life with a disability.

Educate. Embrace. Empower.

(Again, read last year’s post here.)

%d bloggers like this: