thespecialparent.comSpecial People Parenting Special Kids

This month’s Ladies Home Journal has a small piece by Robin Roberts of ABC’s Good Morning America fame. Robin, if you were unaware has been recently diagnosed with breast cancer and is undergoing treatment. While obviously this is not a blog about cancer, her message in this piece I think can speak to all parents of special needs children.

She tells the story of the butterfly and how she feels it’s a fantastic analogy for how adversity being a valuable teacher, and how this adversity can leave us stronger than when we started.

Robin describes how the emerging butterfly beats its wings against the cocoon repeatedly to escape. She relates how if the butterfly were to be cut free of the cocoon and not win its freedom through the struggle it doesn’t gain the necessary strength to survive.

I have always thought of my daughter as a butterfly as well. My original theory sprang from the metamorphosis of a caterpillar into a butterfly and the entire struggle they go through to get to that point and emerge this beautiful and graceful creature. I do believe that Robin’s butterfly analogy still applies to all our children.

Each one in their own way may have a struggle, a cocoon from which they will escape. Beating their wings they slowly emerge having overcome one adversity or another. No matter how many cocoons your youngster must fight their way through it will make them stronger.

Let your child break through the cocoon. Be there to cheer them on, but let them be the ones to break through. To cut your butterfly loose from it’s cocoon would not allow it to win it’s freedom and would not give it the strength it needs to live it’s life. As the parent of a special child, sometimes it’s harder I think to watch the struggle. You feel like you need to help cut open the cocoon. You need to facilitate, but the breakthrough must be their own, hard won maybe, but their own.

Without question we are all blessed with some amazing butterflies.

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The other day I showed you the chart we have with Katherine (the smiley face one) that charts certain tasks. We have used charts like that on and off for quite some time with Katherine. We learned about them when Katherine was getting ABA (Applied Behavioral Analysis) therapy. Over simplified ABA therapy behavior modification technique which uses positive rewards to target behavioral change.

This oversimplification makes it sound like bribery which it’s not. Think reward system. You get rewarded for performing well at work (paycheck) – this utilizes a similar technique. This type of system works very well for children with autism, PDD, TBI, ADD/ADHD or any diagnosis with challenging behaviors.

Think about it. People generally avoid negative input. Who remembers asking their parents for a spanking or grounding? Who wants to be yelled at or get a disapproving look from their boss, spouse or parent? While negative input will illicit behavioral change the problem is it rarely lasts long. With our kids concepts and lessons are typically that much harder to teach so longer lasting results are critical.

I don’t know about your child but Katherine thrives on attention. This becomes a problem because she really doesn’t differentiate between positive and negative attention….well to be more specific while she’d prefer positive attention but she’ll take what she can get and negative attention will suit her just fine if she isn’t getting the positive kind. This means we really need to have as many ways to give her positive reinforcements set in place as possible because positive gets more positive. Studies state that reinforcement (positive intervention) works far better than punishment (negative intervention).

Let me say that the training for this is not just for Katherine – it took a lot of retraining on the grownup (Mom, Dad, Stepdad, Grandparents) side of things as well. While I thought I always tried to praise her, I was also quick to punish or give negative input with infractions. The basic idea here is to become a proactive parent, one that rewards rather than reacts to undesirable behaviors. Sounds like a piece of cake – not quite as easy as it sounds but quite attainable. Even us “old dogs” can learn new tricks.

Exceptional Parent actually ran an article about positive parenting in the December 2007 issue. Here are the key things they offered about getting the results you want from positive reinforcement.

1. Catch kids being good – it’s easy to notice bad and take the good for granted. To be successful with this type of program you have to acknowledge and reward what the kids do right.
2. Reward the right behavior – the system should be used to get new behaviors or strengthen desired behaviors. Avoid rewarding behaviors that are already consistently appropriate.
3. Use variety and creativity – Keep it fun and interesting for you and your kids. Make sure your system is versatile enough to allow for creativity while maintaining consistent structure.
4. Avoid costly rewards – if the rewards are too expensive or too time consuming, they are difficult to fulfill and this will often result in inconsistency. One way to incorporate larger rewards is to award pieces of a puzzle or letters to form a word etc.
5. Be consistent in your implementation – The most important key to success is consistency. Develop and share the “rules” of the system and stick to it. Adjustments are fine, but avoid giving in to whining and begging.
6. It’s NOT bribery – You are promising something to your child to induce him to do something illegal, wrong or against his wishes. It’s a reward system and you are recognizing your child’s ability to do something right.
7. Have faith in the system – Give it time to work. Take time to evaluate problems and make modifications accordingly. Just like anything it takes time. Our typical kids will pick up on it faster than our special kids….it’s ok. Keep going. It works and it makes for a more pleasant environment for all.

In this article Exceptional Parent also highlighted a device called the Appreciation Station that might just work to help you implement such a program. I’m going to get one to try it with Katherine.

This is a really visual and tactile way of reinforcing the reward. Shaped like a treasure chest, tokens are used to retrieve capsules that are pre-loaded with any number of rewards – stickers, small items, coupons, puzzle pieces etc. It’s visually bright and appealing and I don’t know about you but my kids love any machine they can put something in and get a reward out of. They love all those little machines that dispense candy, gum, temporary tattoos, or drinks. This device comes with a DVD which offers tips and techniques for using it. It’s $49.95 plus $12.95 shipping. I’ve just ordered it so I’ll report back in a follow up my thoughts on the product and on how it does in accomplishing the goals.

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I ran across this article last night and just had to take the opportunity to share it with you. Gave me lots of ideas about things we can all do (and me in particular) to make it so that our kids can participate more fully in the community.

The Seattle Times did an article on a special Boy Scout Troop 419 based in King County, Washington. This scout troop is comprised of 17 members with a range of developmental disabilities. The usual scout troop age cut off of 21 is not applied to this special troop. Merit badges are specially tailored to the groups abilities and they work as a group to earn them.

While I’d love to see these boys and young men as a part of a mainstream group I applaud these parents for making a “typical” experience something that could be tailored to them. Honestly there are plenty of times I don’t think Katherine would manage as effectively in a mainstream setting and maybe that’s what these parents see…..other times, Katherine outright blows my mind away with her ability to cope when adequately motivated. And don’t ask me what motivates her because I swear it changes on a dime. Except for one thing – MUSIC.

This springboarded me into remembering another article that spoke to me in Exceptional Parent Magazine December 2007 (free registration required) It spoke to something I had experienced first hand which was the benefit of our special kids participating in community based theater. Katherine LOVES Annie. Knows the show inside and out. Anyone within a five mile radius of Katherine knows how the sun will come out – Tomorrow! When I saw our local theater group was going to be putting on the stage performance of Annie I contacted the director and let her know I was interested in having Katherine try out. I spoke with her about Katherine’s special needs. I told her I wasn’t looking for preferential treatment but rather an opportunity to know that she’d be given a fair chance. I was assured she would.

Katherine practiced and practiced for her audition – she had to sing for them, a song of her choosing – she wanted to sing Tomorrow – I chose something from the Sound of Music. I didn’t need her thinking that when she wasn’t picked for Annie it was because of how she sang the song. We turned out the day of auditions and the line was out the door. Apparently it wasn’t just Katherine who dreamed of being the sappy sweet orphan or one of her perky cohorts. Katherine waited patiently. Honestly she did better than a number of the mothers there that night.

They told all the girls that they needed to be prepared that not everyone would be chosen – there were just too many auditioning. In total well over 100 kids tried out and Katherine was eventually chosen as one of 16 orphans. It was a proud moment for all of us. The teamwork of a theater group is something I had fond memories of and wanted for my daughter. I think she got many of the same things I had years ago from her experience.

Theater is someplace that pretty much everyone can fit in. It’s a totally different atmosphere unlike anything I’ve found elsewhere in the “real” world. There is camaraderie in a theater group that’s especially wonderful for a special needs child. As Barbara Roy wrote in The Exceptional Parent article noted above:

Inevitably, due to the extremely collaborative nature of theater, people who are involved in plays, whether in a school or a community, develop a sense of “the group.” Usually, this is a very deep and committed group, almost like a family. Becoming a part of this network of friends extends into other parts of the school and community such as classrooms, cafeteria, sporting events, or walking down the street. You are my friend; we were in the play together. The other side of this is the audience member who recognizes you from the play. Hey, you were in that play; you did a great job! Ask anyone who has ever done any amateur theatrical activities, and they will tell you this is true.

Also, rehearsing a play is a chance for laughter and fun. (Even serious plays!) At first, nobody quite knows what is going on or what they are doing, and in order to find out, everyone has to take chances. Here is where the individual with special needs excels. They are accustomed to taking chances and putting themselves out there. They do it every day. Sometimes they succeed, and sometimes they fail. But they keep trying. This is the best way for an actor to think. The rehearsal environment should be nonjudgmental so that everyone feels free to fail. The best directors make sure of this. In addition, the rehearsal atmosphere should be full of humor. By the time the play has been rehearsed and is in production, the cast and crew will have laughed thousands of times. The little jokes known only to cast and crew add to the spirit of camaraderie. And the best part is, they will have laughed WITH each other, not AT each other.

My biggest recommendations for us stage moms is be involved in the process – but not too involved. These people are all volunteers. They are doing it for a love of the art. They don’t need you harping over little Susie’s lighting. Make sure if your child needs to learn lines or lyrics you are working on them often outside of the rehearsal setting. If they need specific props or costumes and you have a lead on a prop or know how to sew – volunteer! The director for Annie assigned a specific “orphan” to be Katherine’s shadow so she could be as “normal” as the rest of the girls and I didn’t have to be backstage with her (probably best for both of us)

While the article in Exceptional Parent says to bug out and leave your kid be, I don’t necessarily agree with that. I think that’s really dependent on the situation. We always had someone present – just outside of wherever they were rehearsing so if there was a problem someone was close by. We gave her the freedom to be on her own with a big safety net Many times Katherine wasn’t even aware someone was there.

Overall, its probably one of the most exceptional experiences Katherine has had. In the past couple of years we’ve also delved into other experiences in the community, some of which were better than others in my experience but each gave her the opportunity to bond with people who have become a support network that surrounds her when I can’t. We are always running into someone who knows her from Henry Players, from Softball, from Horseback Riding in the Special Olympics, from the school talent show (yup she sang!) It brings Katherine into the community like you and me. To belong – Isn’t that what we all want for our kids? Tell us about experiences you have been able to involve your special child in. Maybe it can give us all another idea for involving our kids into the community.

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