Rose Goes to School, Again                                                     July, 2001

In May of this year Cheryl and Rose visited an 8th grade  genetics class taught by Cheryl's friend and girl scout troop co-leader, Dianne.  Here's Cheryl's story:

            Well it’s that time of year at Watkinson School..."Genetics:  The Human Component” and Rose and I were invited back.  I admit I was less anxious about talking in front of the class this year, but more anxious about how Rose would handle all those people.  Many times before Rose has surprised us and this time was no different.

            We arrived for the 1^st class and sat on our blanket front and center with the students sitting around us.  I began to talk about how I found out Rose had Down Syndrome or Trisomy 21 by amniocentesis and Rose began to dig through her bag.  She pulled out her “Runaway Bunny” book and started turning the pages and signing.  Rose was leading the presentation.  I quickly explained that we were learning sign language and that wiggling her fingers on her head means “bunny”.  The seemed very interested and impressed that a 2 year old (with Down Syndrome) could learn sign language.  We talked about low muscle tone and that her speech would be delayed along with her ability to walk.  I brought a dictionary with pictures of signing and passed that along for the students to look at.  I think they enjoyed learning a few words to communicate with Rose.  Rose seemed very comfortable, playful, and active, going from student to student and generally enjoying herself.

            Our next concern was attending an all school meeting.  This is a daily gathering of all the students and staff in the school amphitheater where they share announcements of activities and student accomplishments for about 20 minutes.  Rose and I went to the meeting because 2 of the students, Jenny and Francine,  attend the school and are cadets in our girl scout troop (Diane  and mine) . They were planning to introduce Rose to the school and encourage participation in our troop's sponsored blood drive dedicated to Rose.  We arrived and sat on the lower level.  Rose didn’t want to sit on my lap so she started to crawl around on the floor in front of me.  She quickly headed for the front 2 steps and up onto the stage.  Well, there went any concerns about her being shy or overwhelmed by the crowd.

            Jenny and Francine sat with Rose and introduced her and held up a poster about our blood drive.  Rose continued to be curious, crawling around, waving to students, and being very, very cute (if I do say so myself).  I was so proud to be her mom..

            We had a break after the meeting so Diane gave us a short tour of the cafeteria, staff area, and administrative building.  We met more teachers and everyone was very warm and friendly, and welcomed us.

            We went back to the science room to meet and talk with another class of 8^th graders learning about genetics.  Rose continued to be animated, sociable, playful, and full of surprises.  We played ring around the rosies, she did her little circle dance and even gave out a few kisses.  The students were all very friendly and I hope they have a broader, more compassionate idea of genetic disorders.  

Here's some of the Thank-you's Rose and I received from the students we met:

            Thanks for bringing Rose into our class...it really showed me that kids with disabilities can lead normal lives.

            I feel like you have made a great impact on me.  You both taught me how to love life and take it to it’s fullest.

            It has been hard for me to have a cousin with Down Syndrome but seeing the progress Rose has made I am glad that I can help my cousin in every way possible.

            I was really surprised that Rose could speak sign language.  I don’t think I could have learned so many symbols at her age.

            I found it very interesting that you communicate with sign language.  And I will always remember how to say cracker and bunny.

            My knowledge and my feelings towards M.R. and D.S. specifically have changed and grown as has my admiration for you and Rose.

            Rose is like any other 2 year old.  she didn’t look much different from any other child.

            If I ever have a child someday I will not be afraid of what my child will go through because Rose seems so wonderful.

            I couldn’t even tell at first that Rose had Down Syndrome.  She seemed so smart for her age.

            I learned that Down Syndrome is not a horrible thing and that people with it are still fun to be around, cute, and loving.

            Thank you for coming to our class, and best wishes.

Some advice for Rose from the students: 

            You are an amazing young girl and because of that you have impacted me in a way you could never understand.

            My most memorable moment was when we 3 did ring around the rosie.

            You are a very brave little girl.  I was glad to see my keys attracted you.

            It was really fun playing catch with you, Rose.

            You were really funny when you could find the bunny in the book.

            You made me want to take sign language even more.

           To all the students of Watkinson thank you for your hospitality and the beautifully written thank you notes.  It was Rose and my pleasure sharing our life story with you.

Rose Walking Now                                                                July 23, 2001

            Rose’s favorite mode of transportation is now her own two feet.  Occasionally she like to hold hands, but she doesn’t have to.  Her balance and endurance has gotten a lot better over the last month or so.  Initially Rose was just managing short dashes from one piece of furniture to another.  Today Rose is walking everywhere.  Probably her longest walk so far is four houses down the sidewalk to her Uncle Joe and Aunt Liz’s house.  She takes her time and can get sidetracked as she explores the world along the way, but she gets there eventually.  I was amazed, watching Rose walking on the sidewalk yesterday.  I watched how often she would stumble a little, lose her balance, fall forward, smack the palms of her hands against the cement of the sidewalk, and then pop back up, and keep going, just to repeat it all over again in ten steps or so.  She’s a tough little kid.

            It seems like Rose’s walking abilities have progressed quickly over the past month.  She started cruising last December when she was about 22 months old.  Rose seemed to gain confidence and strength quickly, but then after a while she seemed to be stuck.  It seemed like she was ready to start walking on her own but she just didn’t want to venture out.  Karen T had been telling us for a while that Rose was ready.  She was strong enough, coordinated enough, she was just being cautious.  Karen T thought that Rose might start walking when Erin and Katie’s summer vacation started.  Seeing them full-time would be the example and the motivation that Rose would need.  And of course, Karen T was right. 

            Rose’s first few walking adventures were high energy bursts of exuberance.  Rose knew she was doing something special and the wild grin on her face showed it.  She walked with short, quick almost lock-kneed steps, her hands held up high in front of her.  She’d manage about ten steps before she’d drop hard on her bottom (good thing it’s padded).  We’d say and sign, “More, Rose, more!”  She’s pick herself up and go again.  Actually, for a while, Rose’s stiff-legged gait with arms held straight out had Erin and Katie calling Rose “little Frankenstein”.

            As Rose’s balance has gotten better, her hands have come down.  First with elbows at her side and hands held about chest high.  It kind of made her look a little “T-Rex”.  Now, sometimes Rose manages to drop her hands down to her side for a few steps, she still walks with her feet pretty wide apart, only flexing her knees a little, swinging her legs out on the side for every step.

Rose also over-pronates quite a bit.  Her feet roll inward when she puts weight on them.  I was familiar with the term from my running days but Rose goes beyond any runner I've ever known.  He left foot pronates more than her right.  At first, her ankles and feet were so unstable it made it even harder for her to walk at first.  Se did stand and walk better when she was wearing her very stiff, very supportive high top style sneakers.  Karen T.  encouraged us to let Rose go barefoot as often as possible.  The extra demand on her feet and ankles would strengthen her muscles and improve her over-pronation.  The warm summer weather has helped.  Rose seems to be improving.

Swim Lessons                                                                    August 2, 2001

            Rose has completed another major milestone in her life, her first swimming lessons class.  It was a 2 week Parents and Tots water familiarization class at one of our town’s outdoor pools.  The lessons were late in the afternoon, right after and close to work, so I was able to do most of the classes with Rose.  There were about five other 2 and 3 year olds with their parents, mostly moms.

I think I was a little nervous about how Rose would do.  When we signed her up for the classes a few weeks earlier she was just beginning to take her first stumbling, independent steps.  Now she was doing warm up exercises on the pool deck as part of a class of 2 and 3 year olds.  Actually, Rose fit in pretty well as she has in all her play groups.  Older kids will sometimes ask why she’s not talking or what’s with the signing, but other 2 and 3 year olds are pretty much in their own little world, just starting to venture out, just like Rose.  Anyway, Rose kept up with the exercises.  She could do the reach for the sky, grab a cloud, hug it to your chest and the sit down on her heels pretty well.  Although jumping jacks were a tough.  She had the arm waving down, but no jumping, but then she’d only been walking for two weeks.  There’s time for jumping later. 

After a few minutes of warm ups we headed for the pool.  Actually, Rose would usually head for the pool as soon as we arrived.  I’d have to steer her back and remind her we had to do warm ups first.  Rose is pretty comfortable in the water.  She loves her baths (she gets that from Katie, the two of them love taking baths together, they’d live in the tub if we let them).  Rose has also spent a lot of time in our backyard pools, a little kiddie-size one for her and even in the big kid blow up pool with Erin and Katie, and friends.  In our pools she can touch the bottom.  Her lessons were in the 3 foot end of our town pool, so not being able to touch was a bit of an adjustment.  The kids either had to grab floating things like tubes or noodles, or hold onto mom or dad.  Mostly Rose held onto dad.  After a few songs like “Wheels on the bus” with accompanying hand gestures and water splashing, which Rose was familiar with, we spent time on basically doing little kid playing in the pool stuff.  Rose seems to enjoy being pulled through the water being swished back and forth.  I think she enjoyed the feel of the water rushing over her arms and legs.  After a half dozen hard fast swishes dad would try to sneak a break but Rose would be signing, “More!” 

            The two weeks of Rose’s swim lessons were during a cloudy, cool spell of weather.  I don’t know if Rose was getting cold or not but after about 20 or 25 minutes of the 45 minute class she would start signing excuses to get out of the pool.  Sometimes, “Mommy” over and over again.  Like, “Where’s Mommy?”  I’d explain, “Mommy went for a walk.”  Mom was taking walks during swim lessons to get a much deserved break.  Katie, our 8 year old was taking her swim lessons with the big kids in the deep end of the pool and Erin, our 12 year old, was hanging out at home, too cool to go to her little sisters’ swim lessons.  So signing “Mommy” or “Katie” wouldn’t get Rose out of the pool.  Also, signing “finished” or “all done” didn’t get her out either.  I’d try to talk her into more swim playing, play with some new toys and head to a corner of the pool she hadn’t seen yet, swishing her through the water as fast and as hard as I could.  She’d be distracted and laugh and enjoy it for a minute and then she’d want out again.  Rose does know the sign for “cold” but for some reason she didn’t use it, even when asked.  But eventually Rose did hit a sign that got her out of the pool in a hurry, “toilet.”  Her little closed hand raised and twisting back and forth, while giving you that look in the eye that says, “Yeah, I’ve got to poop.” 

Rose’s toilet training started about a year ago.  When she started telegraphing the obvious signs that she was getting ready to go, we’d ask her, “Do you have to go on the toilet?”  We could tell she did and eventually she started nodding her head yes.  She was very small then and we’d have to hold her on the side edge of the toilet seat.  Quite often we were successful.  As Rose learned to sign over the past year, she picked up the “toilet” sign and would answer our question with the toilet sign or sometimes sign the request of her own. 

So in the rushed exchange before swim lessons, Cheryl heading out on a walk, Katie and Rose and me heading into the pool, I’d often miss the report from Cheryl on whether Rose had pooped yet today (and how considerable, and what quality...it’s a parent thing) so Rose had me right where she wanted me.  When Rose would sign “toilet”, I’d pull her out of the pool and head for the rest room.  Rose was wearing a swimmy-type diaper but I still didn’t want to take any chances.  After less than a minute of sitting on the toilet with nothing happening Rose would sign “all done”.  I’d get her back into her swimmy-diaper and bathing suit and tried to head back to the pool but Rose would use any excuse along the way as a chance to play.  Eventually, I’d get Rose back in the pool.  We’d swim for a few minutes until Rose would sign “toilet” again and we’d start the whole thing over again.  Okay, eventually I figured it out.  Rose was done swimming for the day.  Actually, she did this for a few days in a row until I finally talked to Cheryl about it and realized the game Rose was playing.  Rose looked forward to, and enjoyed swim lessons, but 20 or 25 minutes was enough for her.

            Anyway, while Rose and I were going through this, our exchanges in the middle of the pool were pretty animated, me talking and signing, Rose signing back.  Some of the moms in the class knew Rose from a library play group but most had not met her before, including the two young lifeguards leading the class.  After a few signing/talking exchanges with Rose I tried to explain.

            “Rose has Down Syndrome.  She is speech delayed.”

            “Oh.”

            “She’s learning sign language to help her communicate.  It’s easier to learn sign language that to speak.”

            “Oh.”

            They were nice but pretty quiet about it.  Later, at the last class, I asked Rose to do her version of flash cards for them.  I ran through her sign vocabulary list; family names, foods she eats, places she goes, and on as Rose answered each with a sign.  It was pretty quiet, Rose wasn’t distracted at all so she was really on her game, doing about 30 or more signs rapid fire, and they were impressed.

            “Wow, she knows a lot.  How old is she?”

            “She’ll be 2 ½ in August.”

            But no other questions or comments.  Maybe they were just quiet kids, still pretty young, late high school or early college age.  But as I thought about it later I realized that maybe the reasons for their lack of comments was a lack of experience on their part.  They may have never met anybody like Rose before.  She was their first contact.  The first person they met with Down Syndrome. The first person they saw sign.  The first person they saw with the scars from open-heart surgery peaking out from her swim suit.  The first two year old they saw walk with that stumbling determined gait.  But one of many kids they’ve seen enjoying their swim class.  Hopefully, next time they find themselves in a similar situation, they’ll be able to say, “I knew this little 2 year old girl and she could...”  

        Here's a set of pictures from our third and longest camping trip of this summer.  The first one was just a weekend stay over down the road to Hopeville, the second one was a more ambitious weekend trip to New York that lasted less than 12 hours.  We drove 3 hours after work on Friday, set up camp in the dark and in the rain, went to bed and woke up at 4 AM when Erin started throwing up, packed up first thing in the morning and drove back.  Turned out, Erin had appendicitis but that's another long story.  She's doing fine now.  Our third camping trip was out to Cape Cod.  A good 3 plus hours in the car that was a little challenging.  When Rose gets bored she likes to pull Katie's hair.  Despite the hair pulling incidents we still managed to have a good time, camping out in Brewster and visiting one or two beaches a day.

Rose loved playing in the tents with her sisters and she quickly picked up the sign for tent as in "let's go play in the tent".  She also picked up the sign for camping and fire (as in camp fire).  An enjoyable, memorable experience really motivates Rose to learn the associated signs.

Erin's helping Rose get her backpack on.  It holds her favorite doll with the related toys.  Rose looks very cute walking around with it on.

This is at the observation platform at Marconi Station on the Cape Cod National Sea Shore.  Sometimes when Rose wants to take a break from walking and standing she'll drop down, almost sitting on her heels with her hands on the ground between her feet.  Erin and Katie call her "spidergirl" when she does.  Here they are copying here.

Sitting on the steps of a gazebo in the center of Chatam.  I need to take smiling lessons from these kids.

Here's mom and the girls at the end of a day on one of the many Cape beaches we played on.