Archive for March, 2013

Seeking

We are back in counseling, seeking help with how to be better parents to our crew. I’ve mentioned lately how one of our clan is a bit crazy and disrespectful, seemingly enjoying making the rest of us miserable.

We should never have stopped going to counseling. Hopefully we will learn from this the importance of just staying the course and keeping counseling a priority.

Not surprisingly, the counselor agreed that we are experiencing some major attention-seeking behaviors. And when a child seeks attention, apparently it doesn’t matter if it’s negative or positive attention. (That’s so difficult for me to grasp — why would someone rather me be angry and yell at them than ignore them?)

The answer for now is to ignore (if possible) the negative behaviors and make lots of efforts to give positive attention.

So we’ve been trying to give lots of great attention: play the little hiding games he likes to play, laugh hard at all of his jokes, give lots of tickles and touches, really listen when he’s talking, etc.

I don’t know how long it will take to make a big switch from constant disrespect and annoyance to being a little nicer to his family, but we’ve already made some progress, I think.

We will need to continue to remind each other to ignore stuff and not get all worked up. Apparently any reaction from us is reaction enough for an attention seeker and will just feed the habit of seeking and finding negative attention. So we’ve got to be on the ready at all times to ignore, ignore, ignore.

It’s a never ending process, this parenting thing. I’m thinking we could write a book or 3 at the end of it all.

So… what are you dealing with lately? ūüėČ

photo credit: aarontomberlin.com

Goods ‘n Bads

In yesterday’s post, I explained a plan to see what type of sports program Chloe prefers — guiding her to make a decision in self-determination at age 11. And then I promised to talk about pros and cons of the 2 programs we have been a part of.

I should point out that neither program is a totally segregated program, only for individuals with a disability. Even the more segregated program is somewhat integrated in its population and by its nature.

First, the regular ol’community cheer program that Chloe participated in last year. I already said that what I liked about it is that Chloe was on a regular cheer team with typical peers, and those typical peers were learning to include and relate to someone with different needs than themselves — and I tend to think that young people really need to experience that!! If more kids experienced that, then fewer kids would stare and gawk when we stroll the mall with the wheelchair or the walker. Just sayin’ that inclusion is good not only for Chloe, but for all those other little girls who think the world revolves around them.

I also liked that there was variety to the agenda in this program — some days working on the musical routine, some days working on stunts, and some days working on tumbling. I think the variety and the amount of material was challenging for Chloe in a really good way.

What I didn’t like about the community cheer program is that there were days when I truly didn’t think it was safe for Chloe to be there. The program was set up where parents drop off their child instead of staying and watching. They did allow us to stay (since they were pretty uneasy to have Chloe there without us), but they were not open to our going over to help or redirect or advise. On the days that the team worked on stunts, there were times that Chloe would wander over to another group — I think it is dangerous when flyers are up in the air, 2 or 3 levels high, and Chloe is left wandering. We already know from the stretching and squishing episode that Chloe doesn’t appropriately recognize people’s personal boundaries. I really think someone could easily get hurt.

I also didn’t like stunt nights because there weren’t really many stunts for Chloe to participate in safely. Perhaps if the group were more open to parent involvement, I could have helped create ways to include Chloe. But as it was, Chloe just sorta rolled around on the mat on stunt nights. No one paid her much attention unless she growled her Happy Growl, at which times she might get a strange look. (Those poor girls were frightened of Chloe, I think, since they were not used to having anyone with different support needs included in their classes at school or anywhere else for that matter — a big reason to vote for Chloe’s participation in this program!)

Another thing I didn’t really like about participating with this program is the competition piece. When you’re thinking of, say, an inclusive soccer program, there are ways to pad the team to make up for any weak spots, so to speak. But in something like cheer or dance, the team is scored for grace and movement and timing of the whole of the team, which, quite frankly, makes it difficult to get excited about having someone with a disability like Chloe’s on your team. It’s harder for me to work that piece out in my mind than if she were playing basketball, softball, or soccer. It just seems trickier — again, by the nature of the sport. Not to say there aren’t ways around some of that, but it’s harder to include her in a meaningful way and still remain competitive.

Next up, the program that we’re currently involved in, which is a program especially for children with disabilities. The pros and cons.

I like that it is year-round. One of my greatest pet peeves about most sports for all of my children is that the season is about 8 weeks long, and as soon as my girl or my boys begin to make progress and get the hang of something, the season is over. Ugh. It was true for cheer, for soccer, for basketball …. But this program is every Sunday night year-round. I think that is good for Chloe and will allow for skills improvements.

I like how the support is set up on this team. The staffers are girls from the competitive cheer team at that gym who volunteer their time to support a cheerleader on Chloe’s team. Chloe’s staffer is 6 months older than she is — I like that Chloe is cheering with typical peers. While I think the staffers view it as volunteering and serving, the fact is that they are peers who are learning what it means to support someone with a disability. When I found out recently that Chloe’s staffer was that close to Chloe’s age, I asked the staffer if she had thought there was a bigger age difference between them. She just shook her head and smiled, indicating that she wasn’t surprised; she saw Chloe as a peer. I like it. And, related, I like that Chloe’s team wears the same uniform as the competitive team so that when they are all on the mat, they all look alike.

I don’t like that the gym is 45 minutes away, but that’s beside the point. ūüėČ

I don’t like that the team name is Angels. It literally makes me twitch a little bit when I think about it. I think the name Angels just sorta encourages the stereotypical “special needs kids” sorta pity and feel-good persona. I would rather the name be something different … something that didn’t evoke such pity and cuteness …. (I know, I’m a freak about some of this stuff …)

I also don’t like that the team only has one cheer. The Angels have one 2 1/2 minute cheer that they work on every week all year long. I know Chloe is capable of learning more, and I think she would really enjoy learning more. They do sometimes work for a couple of minutes on tumbling, but I would love to see more to challenge Chloe and the other kids.

So there you have it, folks — my take on comparing the programs. I’ll update you later on what Chloe’s opinions are. But before that, I’ll actually post a couple of photos/video of Chloe’s cheer competitions this year.

As I’ve already said, I waver a tad on this subject because I’m so strongly bent toward inclusion, but I think the points above are valid points for discussion. And I’m standing, unapologetically, by my plan to let Chloe choose which one¬†she prefers this time. I think she deserves the right to choose her recreation.

Stay tuned.

photo credit: shoeboxed.com and maleficusamore.wordpress.com

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

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. ūüėČ 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!

Well, I’m Glad You Asked!

On the Friday before our spring break ended, I had a conversation with Chloe via her iPad Notes app. We pass the iPad between us, typing our conversation. Usually it consists of me asking questions and Chloe answering them.

“Do you want to stay home tomorrow or go somewhere?” I asked, feeling it was a safe question to ask since she’s such a homebody.

“Go,” she replied.

Really? Hmmmm. “Where do you want to go?” I asked her.

She carefully typed and corrected and retyped her response, taking care to get the capitalization and spacing just right: “AG Place.”

AG Place? I’d never heard of such a place. But I was pretty confident that Chloe knew it existed and that it was a real place. And she wanted to go there. Tomorrow.

Hmmm. AG Place?

Stuck, … I googled it. And, of course, google knew the answer. Google knew what it was.

Come to find out, AG Place is what they call the American Girl Store. Seriously?? How in the world did she know that?? And how cute is it that she wants to go there?? (And how unfortunate is it that she can’t afford anything there! ha!)

There on the google page, there were results for the stores in New York, Chicago, and Dallas. I asked her which AG Place she would like to go to. Without hesitation she pointed at AG Place Chicago.

Chicago??!! Seriously??

Oh, me! That’s crazy!

I told her that Chicago is really far away but that I would try to get her to the Dallas AG Place soon.

Closing up our conversation on the iPad, I typed, “I love you, Chloe.”

And she typed back carefully, “I ‚̧ u.” (She actually used an actual heart here, but I don’t know how to do it….)

… and my heart swelled with a very full warmth ….

photo credit: fanpop.com

Here’s Your Sign …

I have wished a¬† couple of times this weekend that I had a collection of signs or tags just to slap right on the front of folks’ shirts. Big signs. Bold print signs.

But then the problem would be deciding which sign to pin on each culprit.

Should the sign read: I’m a jerk, I’m drunk, I’ve been living in a cave for a couple of decades, I like to hear myself talk, I want to talk to you but have no idea how to go about it … or what? I’m not sure.

Oh, you need an example of what I mean? Ok. I’ll give you two of my “faves” from this weekend.

We are staying in a hotel for a couple of nights for spring break. Chloe and I were waiting to take the elevator down, but because the wait was so long, we jumped on it going up. We rode it up … we rode it back down. The elevator then stopped back at our floor and there stands Zippy in a group of people. Chloe and I were at the back of our very crowded elevator.

From the crowd, I say, “Hey, Zippy!”

And from the crowded hallway, Zippy replies, “Hey!” as the elevator door closes.

A tall, thin, black man riding the elevator with us turns to me and asks incredulously, “Do you know him?”

I reply that, yes, he’s my son.

The man looks at me as though I just grew a palm tree right out the top of my head and asks in his booming voice, “Well, how’d that happen??”

(In case you don’t know, Zippy is black, and I’m not …)

I just silently looked at the man as though he had just asked a stupid question … ummmm, yeah,¬† … he had just asked a stupid question.

Very smart alec answers came quickly flooding through my mind as the man and I just stared … now incredulously at each other

…and I said nothing. I couldn’t think of anything nice enough — or rude enough for the occasion. So I said nothing. Literally nothing.¬†

And the elevator door opened, and we all went our separate directions.

Yeah, that guy definitely needed a sign.

And I needed to be able to slap it on him!!

Only a very few moments later, Chloe and I were down in the lobby/snack area of the hotel. Suddenly Chloe had this major sneeze attack. She literally sneezed like 8 times in a row. (carefully covering, thankfully) I, as usual when my kids do something amazing, laughed outloud at her and said something like, “Oh, my goodness!” (You know, the proud mom…)

A man standing near us watched us — me, laughing and Chloe, sneezing –and then got my attention.

“My cousin was just like her,” he said.

I laughed, picturing his cousin sneezing a dozen times in a row. “Really??” I laughed.

“Yeah,” he said. “She was all crippled like that, and …”

Then I must have stared at him like he had a palm tree growing out of the top of his head because he quit talking, and I just walked away, pushing Chloe and her wheelchair out of ear-shot of Mr. SmoothWithWords.

Yes. A sign. I needed a sign. And I either needed to be able to fling it at him with force or to slap it right on him with my fist.

Come on, folks. Seriously.

(Now before you go getting all upset that perhaps it is my duty to educate these folks on an okay way to broach certain subjects. Or before you go¬†feeling sorry for these two knuckleheads, just know that it depends on the day and on my mood. Sometimes I may respond with grace and kindness. Some days I may say something that would hint to my frustrations. Some days I just respond by giving a disgusted glance and walking on. Thankfully I’ve never yet responded with my backhand. Since these 2 episodes literally happened within 5 minutes of each other, I just hightailed it back to my hotel room and locked. the. door. and latched. it. tight.)

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