"We are the same on the inside"

My friend Kelly Butler has two amazing children with special needs, Boston and Brooklyn. Her daughter Brooklyn, 7, also has Rett Syndrome. Just like Caroline, Brookie is unable to talk, walk, stand without assistance, or use her hands. This little girl is one smart and tough cookie! In the last year, Brookie started having seizures. She also required surgeries for feeding tube placement and hip reconstruction. And yet she (and her amazing mama!) has shown a level of strength and perseverance that is unimaginable. 

Brookie is a social butterfly who enjoys the same activities as girls her age. She loves school and enjoys learning. Today, Kelly shared with me a presentation she did at an elementary school a couple of years ago to help children understand communication struggles with Rett Syndrome. The point of the exercise was to show that Brookie and other girls with Rett are "the same on the inside" even if their bodies are "different on the outside." I was so moved by Kelly's presentation (and words) that I asked her if I could post it here. 

Kelly shares her children's journey with Rett Syndrome and Down Syndrome on her blog http://specialmommyx2.com/ .  

Kelly and her daughter Brooklyn

Written by Kelly Butler 
March 24, 2010

Brooklyn and I went to Fremont Elementary School to speak to the 2nd and 3rd graders today. It was great for them to be introduced to Brooklyn AND Rett Syndrome. They are hosting a Dress Up 2 Cure day this Friday to raise money for Team Brooklyn. www.dressup2cure.org 

Ingrid helped me with a great presentation - I thought I might share it with you - it is a great way to help explain what communicating with Rett Syndrome is like!

I recorded a "Hello my name is Brooklyn and my mommy and I are here to talk to you about Rett Syndrome" message on her talker to start out the presentation.

I printed out 6 blocks of colors and taped them to Brooklyn's Eye Gaze Board and then a piece of paper with the following body parts (mouth, hands, feet, eyes)

I showed the kids the colors and asked a few one by one to come up and tell me what their favorite color is -- then I showed them how they used all those body tools to tell you -- eye to look at color, hand to point, mouth to tell and foot to walk up...

Then I asked a few to come up and tell me without using the mouth (I crossed off the mouth on the paper) -- then I showed how they still used their feet, hands and eyes --

I then took away hands--- (they pointed with their elbow or nose but one STARED really hard with his eyes!)

Finally I took take away feet -- they get stumped with this one and try to raise their hand -- but no hands! So it ends up being the one to make some noise and latching onto me with their eyes....

I talked about how this is Brooklyn's tool that she uses.... and talked about how they all got pretty ansy and noisy when tools were taken and they had less to work with -- and that is why people with less tools sometimes move and sound funny -- they are trying to use everything they can to communicate --

I then went around the room and asked them their name and if they have a pet, but did not let them speak -- I pointed out that even though they couldn't tell me, that the answer still popped into their head and they know! :-) I explained how frustrating it was for Brooklyn at times - knowing what she wants to say to the other kids around and not being able too!

We then had a Q & A with the kids who asked GREAT questions: Does Rett Syndrome Hurt?, How does she sleep? How does she eat? Does she have a pet? How do you "get" Rett Syndrome? and lots more. It was FANTASTIC.

It would be a great way to start off each year with your daughter's class I think too - to "explain" Rett Syndrome a bit to the kids that will be interacting with your daughter each day in class.

Hugs....
Kelly

Here is Brooklyn's Eye Gaze board that I used along with the sheet with the body parts on it.

A girls' day with Auntie Emily

Auntie Em came a long way to visit us today. Caroline was all smiles and giggles from the moment she woke up from her nap and saw her auntie sitting next to her.

Emily and I took Caroline to the mall for lunch and some shopping. We had a great time!  We even lost track of time and had to rush home so that Caroline could start her nighttime routine.

I couldn't resist getting some cute matching sandals and hair barrettes for Caroline. I like to give her a break from her ankle braces once in a while (usually on the weekends). I imagine her feet must get warm and maybe uncomfortable in the braces after wearing them all day, especially in the summer.

Standing out

Caroline's maturity and cognitive skills are developing on target. Her social-emotional skills are ahead. She's growing up. She's not a baby anymore.

I'm realizing that as Caroline grows up, her "differences" are becoming more obvious to others now. I sometimes catch strangers staring at us. Sometimes, these are curious stares...sometimes, these are sad stares...sometimes, these are uncomfortable and nervous stares. I often pretend I don't notice, even when I'm annoyed or overcome with "mama bear" protective feelings. I guess they notice things I don't really see anymore. Caroline rocks, wrings her hands, vocalizes loudly, and is not ambulatory.

These "stares" don't make me want to hide. In fact, I'm happy to do my part to help society get over their discomfort with individuals who are "different." One of the reasons I decided to write this blog was to help break the stigma against people with disabilities. I also wanted to put a face to a disorder most people know nothing about. My hope is that individuals like Caroline will soon be guaranteed full and long-term inclusion in our communities.

I'm not going to lie though. Life is too short. I prefer spend my free time with people who understand Caroline and don't feel sorry for her (and us). I'd rather be around people who don't make us feel "different." Lucky for us, we are blessed to have such people in our lives.

Caroline's first "wheelchair"

Caroline's bath chair and mobility chair (aka adaptive stroller or wheelchair) arrived last week. The chair will enable Caroline to be lifted onto her school bus in the Fall. More importantly, it promotes better positioning. Caroline slumps and/or slides down in regular strollers.

Receiving this adaptive equipment was bittersweet. I'm incredibly grateful that Caroline has access to equipment that will greatly increase the quality of her life (and ours). But a little part of my heart hurts that she needs these things.

On the bright side, Caroline seems to really like her new chair. She is calm and happy in it. Her involuntary movements seem to decrease too.   

Getting this chair has made us realize that we need to start the process of getting a handicap placard. There isn't enough space to get Caroline out of the chair and into the car if there's another car parked next to us. 

Caroline in her new Convaid Mobility Chair 

Unfortunately, the bottom piece for the bath chair doesn't fit most standard bathtubs. 

Caroline is drinking from straw cups!

Caroline has learned to drink from straw cups! We've been working on this skill for more than a year now.  We started training her with the honey bear straw cup, which is designed for children with special needs. I have to credit Mike for helping Caroline achieve this recent milestone.

Below are pictures of Caroline showing off her skills to her abu (my mom)

Talking to young children about Caroline

The following post is written by my dear friend Sherry. She is one of the most supportive and generous people I know. I also look up to her as a mother. She always knows the right things to say, no matter how sensitive or difficult the issue. I especially love the way she talks to her children about Caroline. I recognize that it's not easy to talk about Rett Syndrome to young children, but Sherry does it with such honesty and kindness.

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Written by Sherry

My kids, JJ and Daisy, have known Caroline practically since she was born. My son always says, “Caroline is so pretty and sweet. “ He has such good taste.

We get-together with Caroline’s family regularly.  At the museum, puppet theatre or one of our homes, we cherish these playdates.

Recently, Marta asked me to write a blog post on how to talk to young children about Caroline.  I felt unsure at first.  What do I know that can be helpful to others? I am still learning, too.  I felt honored at her request though, and embraced the opportunity to do something for Marta.

It’s amazing how perceptive toddlers can be about the world.  They are curious and love to explore and engage with their friends.  Questions about Caroline have popped up in house, even at 3 years old! I imagine my kids’ questions will only increase as their relationship with Caroline grows.  

While I don’t claim to have all the right answers, here are a few nuggets from our experiences I can share with you.

1. Always respond to your young children’s questions directly, and perhaps with a question.  This helps kids make sense of their world. Here’s a recent conversation I had with my son, JJ (3 ½).

JJ:   Is Caroline a baby?

Me: Caroline is the same age as your sister, Daisy. Is Caroline a baby?

JJ: No, she’s a little girl like Daisy.

2. Age-appropriate honesty. It’s hard to know how much information to give, but in our conversation below, I didn’t think JJ was ready for more.  Instead, I wanted to focus on how Caroline expresses herself.

JJ: Does Caroline not talk because she’s shy?

Me: No, Caroline loves to laugh, smile, and hang out with her friends.

3.  Young kids want to explore and learn about Caroline’s world. That means learning about and touching (with close supervision) Caroline’s special equipment that helps her get things done. Her hand-made arm brace and little lamb shoe inserts were of special interest during our last visit.  Marta patiently let my kids hold the foot inserts and ask questions. 

4. Finally, speaking from the heart will take you far.  Try to answer questions in a way that strengthens a connection between young children, rather than sets them apart.  It’s pretty easy to talk about Caroline, JJ and Daisy’s similar interests: hearing stories, seeing puppet shows, drinking smoothies, listening to live music, or simply holding hands and rocking back and forth on the bed together.

Most young children share a love for music. I hope one of our next excursions with Caroline will be to Jammin Java to hear some Tot Rock.

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Written by Marta

I value the way Sherry encourages JJ and Daisy to find things in common with Caroline to show that they are more alike than different. I often watch in awe as she takes various opportunities to demystify Caroline's condition. JJ and Daisy are incredibly sweet to Caroline. They approach spending time with her as they would any other child her age. Caroline LOVES them (she is all smiles and giggles around them!).

I greatly appreciate Sherry's willingness to share her experience. It meant a lot to me. I hope others find it helpful. 

The International Rett Syndrome Foundation has a wonderful children's coloring book explaining Rett Syndrome. Please click here to download the short book.

Below are some pictures of Caroline's friendship with JJ and Daisy.

JJ meeting Caroline for the first time (January 2010). Daisy is in the picture too!

Caroline, Daisy, and JJ watching a video (January 2011)

Caroline and Daisy smiling at each other (May 2011). This picture was taken  a year ago when Caroline started quickly losing skills. She was diagnosed with Rett Syndrome a couple of weeks later. 

Busy weekends=Happy weekends

A happy weekend for Caroline is usually a busy weekend filled friend visits, brunch outings, and trips to the grocery store. Trips to the grocery store? Yes, a trip to the supermarket or Target usually brings out lots of smiles and giggles (who knew?). Caroline thrives on social interactions.

This past weekend, we visited a Rett family near and dear to my heart. Their daughter Alice is a smart and beautiful 6-year-old who happens to look a lot like Caroline (they could be sisters!). Alice is just the sweetest. She's got such a great sense of humor too! Spending time with Alice and her family felt like therapy to me. I'll never forget the way her mom generously extended her friendship and support when Caroline was diagnosed with Rett Syndrome. I've said this many times, but meeting my fellow Rett mom friends has been a real lifeline.

Caroline also had a playdate with JJ and Daisy. I've known their mom for a very long time. Sherry has cheered for me during the good times and held my hand during the tough times. When Caroline was diagnosed, Sherry encouraged me to contact Girl Power 2 Cure as a great resource for family support. When I was finally ready to take that step, I contacted Kelly Butler who put me in touch with the families in my area.

I am very thankful for these friendships (old and new!).

Caroline and Alice :-)

 

JJ serenading Caroline

Caroline and Daisy