September 11                                                                October 2, 2001

            It’s hard to fully understand the impact of the devastating terrorist attacks with the four hijacked planes.  My initial reaction of complete shock gave way to feelings of loss.  A loss of trust in our world.  A loss of trust in strangers.  A loss of the amazing ability we’ve had to move freely around our own country and around much of our world.  A loss of my children’s innocence, that they would have to witness such acts in their lifetimes.

            After a day or so, when I stopped staring at the replays on CNN, I started to think how think how this might affect my own family.  I’m an engineer in the aircraft industry so I’m more than a little concerned how this might affect my co-workers and myself.  I’ll have to see how this plays out over that next few weeks, and months, and years.  But there’s not doubt that the bubble of economic prosperity that we’ve all been riding has, if not popped, at least been deflated considerably.

            But even more personally, I could see the possibility for a major shift in how our country spends its resources.  Rose, and our family, and I’m sure countless others, have benefited tremendously from government supported social programs that until a few years ago, I had no idea even existed.  Over that last decade or two these have been allowed to grow and to reach out to families like us and children like Rose.  The Birth to 3 program in particular has been a wonderful nurturing experience for Rose.  What we’ve seen in what our school has to offer Rose in an inclusive environment is very positive, and certainly go way beyond my few dim recollections of what was offered during my own school days.  My fear is that there could be a significant shift in our government’s spending, from social programs to military.  If any of these opportunities should be diminished or taken away from Rose, and children like her, it would be a terrible loss.  I fear that the not so regular kids like Rose will not be allowed to become the people they have the potential to be.

But fortunately nothing that happens in this world is entirely evil.  Every tragedy has the chance to show the best side of humanity; certainly the rescuers that gave their lives, but more so the impact and change effected upon so much of the world that witnessed the events, priorities shifted in a heart beat.  Chasing careers and the pursuit of material possessions and other selfishness suddenly seemed trivial and gave way to a selfless concern for others.  It was wonderful to see that outpouring of donations, the long lines of blood donors, the call to spiritual reflection being answered, the reaching out to reassure all faiths and nationalities a welcome place in our communities and the need to reach out and touch others around us.  Maybe through all this, the world can change for the better.  Maybe it will have a lasting change.  Maybe.  I hope so.

First School Transition Meeting                              October 11, 2001

            We had Rose’s first meeting with her school team at our town’s Early Childhood Learning Center.  In our town, all of the kindergarten classes as well as the 3 year old and 4 year old special education classes are in the same school.  Katie went to this school as a kindergartner the first year it opened up.  It was a great experience for her.  It’s nice to see a school campus full of little kids.  It’s a little early for us, though.  Rose doesn’t start school until she’s three years old in February, but it’s nice to get started.  Usually the transition process starts 90 days before the third birthday.

            The whole experience was a thrill for all of us.  It’s still amazing to think about all Rose has been through, how far she has come and all she has accomplished.  And just telling Rose about the upcoming school visit a day or two before the meeting, “Rose, we’re going to be going to your school”, was enough to get Rose excited.  She’s been to Katie’s school a number of times.  Cheryl is very active in the PTA there and Rose often goes with her mom on these trips.  She had a pretty good idea that Katie’s school was a special place for Katie.  And she was ready to learn about her special place.

            As we walked up the sidewalk to the front door we told Rose, “Here’s your school, Rose.”

            Rose gave us an excited look and answered, right hand clapping down on her open left hand’s palm, school, then closed right hand tapping her chest over her heart, Rose.  Over and over again; school, Rose, school, Rose.  She was beaming with pride.

            This first meeting was a transition meeting, a chance for Rose’s birth to 3 therapists to meet the school’s team and give a report. We all sat around one large table; Karen T, Rose’s PT and case coordinator, and Jane, Rose’s speech therapist were there, from the school were Rose’s future teacher, PT, speech therapist, psychologist and principal, and of course, Rose’s mom, dad, and Rose herself.  We got to listen in on the reports, meet the school staff, have our questions answered and we gave the school folks a first chance to meet Rose.

            Rose will be joining a class of seven other 3-year-old students.  Three of the kids are regular education.  Four of the kids are special education.  There are 3 adults in the classroom; a head teacher, an assistant teacher, and a para-professional providing one-on-one support for one of the kids.  Rose will be in one of the two morning 3 year old classes.  There’s two more afternoon classes of 4 year olds.  The school day will be 2 ½ hours long for probably 4 days a week, Monday through Thursday.  So that makes Rose one of about 8 special ed kids for her school class year for our town of about 28,000 people.  That’s just one small measure of the uniqueness of our situation.

            This meeting was a little early, but it was nice to meet everybody and get a chance to see Rose’s classroom.  We went with a long list of questions and had them all answered.  In particular, we talked about Rose’s signing.  Both the head teacher and the speech therapist use SEE (Signing Exact English) which Rose uses for most of her signs (with just a few self-made signs thrown in).  The head teacher said she hadn’t had a student signing in a while, but she was looking forward to working with Rose and using her signing again.  Also, the physical therapist volunteered that she would have to learn a few signs so she can understand Rose.  Rose’s spoken vocabulary is still very limited, hopefully that will start improving, but right now it’s just a few words.  “Bah” for “Bye”.  “Mah Mah” and “Dah Dah” (The last two could be anywhere from a single to several syllables repeated over and over).  Although Rose is pretty verbal, doing lots of babbling at various times, and also usually including some kind of verbal expression with each sign.  But Rose’s major communication improvements continue to come through signing.  Now she frequently expresses herself in one, two, or three sign sentences.  Especially when she is comfortable with her surroundings and especially when Rose wants something; either to do something or go somewhere or tell you something exciting that has happened in her day.  It’s amazing how much more of a story Rose can tell with 3 signs.  When special things happen to Rose they make quite an impression and Rose has to tell us about it.

            The visit to the school ended with Rose, mom and dad visiting Rose’s future classroom.  Amongst the many interesting activity areas was one special friend, a large, furry, floppy-eared bunny.  The teacher let the bunny out of his crate, after the door to the hallway was closed, and Rose got to chase the bunny all over the class, sometimes getting close enough for a quick pet before the bunny scooted off for another chase.  Rose enjoyed herself thoroughly.

            The next day, Rose and I were sitting side by side on her step, the one between our family room and kitchen.  Out of the blue, Rose had just called me over signing, Daddy – sit – here.  It’s more and more common these days, kind of like being called into her office.  As I sat down next to Rose she gave me her excited “Oh” face.  Then she signed, school – Rose – bunny.

            I answered, “That’s right, Rose, you liked playing with the bunny rabbit. That was a lot of fun.”

            Rose answered again with her “Oh” face – eyebrows raised, mouth making an “o” shape, head tilted back looking up at me – and then her little chuckling laugh.

CDSC Convention 2001                                             October 26, 2001

            A few weeks ago we all attended our second Connecticut Down Syndrome Congress Convention.  We all participated in different ways.  I was able to spend the entire day.  Cheryl, Erin, Katie and Rose joined me at lunch (Katie had a morning soccer game that couldn’t be missed).  Cheryl went to an afternoon seminar and the 3 kids went to day care session.

            First we listened to two keynote speakers.  Ms. Anne Forts, a 33-year-old young woman with Down Syndrome gave a very interesting talk on her life experiences.  She recalled her parents being told by doctors that she should be sent off to an institution because she would be a drain on the family and that she would never be able to do the things that regular kids did.  She told us she was very happy that her parents decided to raise her at home and she told us very emphatically that, “That doctor was wrong. Very, very wrong.”

Ms. Forts went on to recount many other accomplishments, including graduating from high school, working as a teacher’s assistant and serving two terms on the Presidential Commission for Mental Retardation.

            Ms. Forts also told a story about how she first realized she was different from all the other kids she was growing up with.  When it came time to go to school she had to ride a school bus to a different town to attend a special school.  All the kids she knew from her neighborhood went to the local in-town school.  It was a poignant reminder that Ms. Forts grew up in a time long before today’s “inclusive” attempts and a reminder that school is much more than learning about reading, writing and arithmetic.  Childhood friendships are a very important part of how we all connect to the world around us.  All of us “regular’ people that grew up and went to “regular’” schools with all our “regular” friends take for granted how much easier school life is because we have the continuity of all these connections.  Imagine how much harder school and life would be if these connections were constantly broken, how much energy would be expended trying to create some minimal level of social connection, how much frustration and loss would be encountered.

            The next speaker Ms. Kathryn duPree, Deputy Commissioner of the Connecticut DMR (Department of Mental Retardation), spoke about “The Waiting List’ issue.  (Until fairly recently, I didn’t know what either the DMR or “The Waiting List” were.  More pieces of our new lives that we’re constantly learning about and trying to fit together.)  Ms. duPree explained that “The Waiting List” is made up of adults with mental retardation waiting to get into assisted living homes.  Sometimes the wait can be years.  This can be quite a hardship for aging parents as well as for young adults eager to begin a life of some independence.  In some states, including Connecticut that situation had gotten so bad that class action law suits have been filed against the state DMR.  The Ms. duPree said that assisted living is no longer considered just a service, but is becoming considered to be entitlement like inclusive education.  Rose isn’t even 3 years old, but I hope with action today these type of opportunities will be available for Rose when she’s ready.  I know I am only aware of this issue, and probably only feel this way because I’m the father of a cute little 2 ¾ year old girl with Down Syndrome, and I hope she has a future full of as much promise as possible.  Maybe I would have gotten here anyway.  Hopefully more people will accept and support the idea of a diverse population having opportunities to live as fulfilled life as possible.

                I attended a morning seminar on “Oral Motor Issues in Children” as developed by Sara Johnson, and how these issues impact speech production and intelligibility.  The speaker was Lori Overland.  I recognized many pieces of the therapy from different things that Rose’s speech therapist, Jane R, has introduced to us.  The blowing whistles for lip closure and wind strength.  The straws for drinking to encourage lip closure and to get Rose away from a sucking-type drinking motion until she learns to drink from a cup (no sippy cups!).  Biting down with her molars on either side, either on rubber tubing, or hard vegetables, carrots and celery to encourage proper biting and jaw strength.  The side to side, pushing the corner of the mouth spoon feeding to encourage Rose to clear the spoon with lip closure and not having mom or dad scraping the spoon off against her upper teeth.

But, even as much as we have tried to learn all these techniques and work them into Rose’s every day life, Rose still has issues.  Proper oral motor skills are necessary for proper eating and proper speech and oral posture.  Although Rose is getting by fairly well there in still much room for improvement.  Rose’s diet is fairly limited (not that that’s so unusual for a kid her age).  She doe seem to prefer soft foods that she can suck down.  Like pasta, and peanut butter and jelly sandwiches.  And although Rose is signing fairly well her spoken vocabulary is pretty limited.  She’s making soft sounds all the time, but very few are understandable words.  And Rose’s oral posture could be better.  Although she sometimes receives compliments from other parents of children with DS like, “Oh, she’s doing a good job of keeping her mouth closed”, or “she doesn’t stick her tongue out too much.”  (I never would have imagined a world where such compliments exist.)  Of what must be thousands of pictures we’ve taken of Rose, I can’t think of a single one where she has a relaxed, mouth-closed expression.  And if Rose tries to take on even the least challenging task, her mouth drops open and her tongue hangs out.

            The talk was a good overview of the Sara Johnson program for oral motor therapy, Lori Overland was a very positive, dynamic speaker.  She was very resourceful, using a mom and her 20-month-old daughter sitting in the front row for several impromptu therapy demonstrations – I left the seminar feeling grateful that Jane R., Rose’s speech therapist, had introduced us to so much.  I was also somewhat inspired to learn more but also a little daunted by the realization that Rose’s development is so dependent on her parents initiative.  How well will Rose eat?  How will Rose present herself?  How clearly will Rose’s speech be?  How much will her parents learn?  How hard, how consistently will we work over the years ahead?

            Lunch was fun but a little different than last year.  Instead of sitting quietly on our laps greeting a few new friends as that came along, Rose could not be restrained.  She had new territory to explore and was not to be stopped.  Occasionally, Rose would slow down to examine something of special interest or meet a new friend and I could have a brief conversation, “How’s she doing?”, “When did she star walking?”, “Are you signing with your child?”, “Did you have heard surgery?”  By then, Rose was disappearing over the horizon and I’d have to take off after her.

            In the afternoon I attended a seminar on “Teaching Reading to Children with Special Needs.”  It was given by Ms. June Cameron, a special education teacher in a local Connecticut town for over 25 years.  Ms. Cameron discussed the Edmark reading program and various materials she had developed over the years to supplement the program.  Ms. Cameron said she typically worked with 4^th and 5^th graders that had failed at every previous attempt to get them reading.  After a year she had almost a 100% success rate of getting her students to read with a basic vocabulary of a few hundred words.  The program focused on comprehension.  Students were taught to sight recognize the shape of a word and comprehend its meaning and not to sound out words.  The high success rate was encouraging but the late start and the limited vocabulary was a little discouraging.  We read quite a bit to Rose these days, just like we did to Erin and Katie during their preschool days.  Neither of them were early readers, but both reached about the same point early in the first grade when suddenly everything fell into place.  Today both of them are voracious readers.  I’m not sure how Rose will learn to read.  I’m sure it will take some extra effort.  It is a help to know that there are structured approaches like the Edmark reading program available.

            During some of my infrequent internet researching on various topics related to DS, I have come across some brighter success stories.  On the Riverbend Down Syndrome Parent Support Group site  several very encouraging examples were given of kids with DS reading at or slightly above grade level.  These might be the shining stars at the positive high-end of the performance spectrum.  I guess it’s more likely that Rose will fall somewhere between the two.

            Cheryl attended an afternoon seminar on the “Don’t Laugh at Me” program and found it very helpful.  It's a national movement or organization started as a response to some of the more disturbing incidents in our country's schools and inspired by the hit song of the same title.  Peter Yarrow of Peter, Paul and Mary is one of the driving forces behind the Don't Laugh at Me Project and has helped bring attention to the program.  The seminar speaker, Jo Ann Freiberg, gave an over view of the program to Cheryl's group.  The DLAM organization runs multi-day workshops for local educators to help give them a curriculum they can take back to their school and present to their students.  For more about this please go to the Don't Laugh at Me Home page.

Halloween Costumes                                                 October 31, 2001

Here's all the kids dressed up for Halloween.  Erin is a preppy teenage.  Katie is a wizard and Rose is a Dalmatian and an unhappy one at that.  This year she seemed to be a lot more aware of all the crazy costumes around her and she didn't seem too happy about it.  Rose and I went out by ourselves and did visit most of the houses on our street.  She seemed to enjoy that part but didn't quite know what to do with all the candy.  Erin and Katie went out with friends and covered a lot more ground and hauled in a lot more candy and they did know what to do with it.

A Small Step Towards Independence                November 11, 2001

  Last night Cheryl and I went on a dinner date.  That’s unusual enough, we haven’t been getting out that often, but what’s really exceptional is that we were out the door before Rose was asleep in bed.  The few times (very few) that we’ve tried to have somebody other than one of us put Rose to bed it’s usually ended up as a mild disaster, Rose throwing a crying fit and big sister Erin sitting up with her for hours past her bed time.  Rose is fine for Mom or Dad.  Her eyes are practically shut before we can finish singing rock-a-bye-big-girl.  Anybody else, forget it.

            With Erin and Kate we had done a pretty good job of getting baby sitters as soon as the kids had settled into any kind of routine.  It was often a friendly familiar face, like one of our nieces, and they adapted easily and handled it well.

            At first with Rose, and all her medical complications, we were honestly just too nervous to leave her at all.  With memories of Rose’s heart surgery just months earlier still too fresh in out minds, and having had a few g-tubes fall out it took a lot to get us to go out at all.  In fact, it took two good friends getting married (to each other) to get us to realize that we needed to take the big step and leave Rose in somebody else’s care for a little while.  Of course, not just anybody, we needed a team; Karen T, Rose’s birth to 3 PT (it helped that her husband is an ICU RN and they lived just around the corner from us.  Believe me, we considered all this) and also Rose’s Aunt Anne, to help watch the other kids (and just general backup).  OK, in hindsight, it seems like a bit much, but at the time it was just enough to get Cheryl and me to both leave the house at the same time.  And I don’t remember anyone pushing us that hard.  As a group, all of us around Rose, family and friends we’re still somewhere between holding our breaths and too nervous to look away.

            And that first night out turned out OK, despite our exhausted selves.  We saw our friends get married, had a great time at the reception, only called home twice and actually lived a piece of our old “regular” life.  Rose survived under the care of out babysitting team and all was well.

            Over the next two years, Rose’s health improved considerably, her g-tube came out for good and all her heart checkups went well.  But it was a long slow recovery for all of us involved, some more than others.  Admittedly, Cheryl and I especially needed to learn to let go sometimes.  The subtle parenting touch we had with Erin and Kate had left us.

            Especially in the last year or so there have been times Cheryl and I have questioned our approach to babysitting and Rose and our infrequent social life.  We worked out a compromise for a while, we would put Rose to bed at her usual time and then we would go out to a late movie, Erin would baby-sit.  She was twelve at the time and enjoyed staying up late and watching what she wanted to on our lone TV.  But we were still dancing around the main issue; Rose should not be throwing a crying fit every time somebody other than mom or dad put her to bed.  It was behavioral.  We knew it, she knew it (I think).  But we kept putting it off.  I think maybe we weren’t ready to take another challenge, even a small one.  We needed a little push.  So last night we had just gotten back from Erin’s indoor soccer game and Cheryl and I were kicking around plans to go out.

            Cheryl said something like “How about we feed the Erin and Rose dinner now (Katie was at a sleepover), and we go out to a late dinner, after Rose goes to bed?”

            I probably said something like, “Yeah, sure, sounds good.”

            Erin overheard us and cut in, “You know, Mom and Dad, you guys don’t have to wait to go out.  I can put Rose to bed. She’ll be fine.”

            Cheryl and I looked at each other with a look somewhere between ‘where is this coming from?’ and ‘should we take her up on this?’  Erin must have heard us talking about out little dilemma once too often and decided we needed a push in the right direction.

            We checked, “Are you sure Erin?”

            She was all confidence and a little bit miffed in a nice sort of way, “Yes, of course.  She’ll be fine.”

            So we agreed to give it a try.  As we were saying our goodbyes I gave Rose special instructions, “OK, Rose, Erin’s in charge.  She’s going to put you to bed.  OK?”

            Rose nodded her head yes and we were out the door before the spell was broken.

            Cheryl and I enjoyed a short walk across the center of town to a leisurely two-hour dinner.  We would have rushed our dinner and gotten back sooner but it was one of those fancy restaurants that serves your meal only one course at a time, with long gaps in between, I think that’s when you’re supposed to have conversations.  Seriously, we had a great time, actually relaxed a little bit.  We asked ourselves, like we have in the past occasions, why don’t we do this more often?  But still, in the back of our minds was the question, how is Erin doing with Rose?  Has Rose been crying for the last two hours?

            A ten-minute walk home and we had our answer.  Erin greeted us at the door.  She was tired and was heading up to bed.  After all, she had played a hard soccer game earlier in the day.

            “So Erin, how was Rose?”

            “She was fine, she cried for about ten minutes and then she fell asleep.”  Then with all the wisdom of a thirteen year old she told us, “You know, all you have to do is let her cry a little bit.”

            We may have rolled our eyes just a little bit as we gave Erin her goodnight hugs and love-you's and sent her up to bed, but in our hearts we knew she was right.  We had known it more than ten years ago when we were giving an infant Erin her bedtime confidence.  We’d known it all along since then but somewhere along the way we had lost the strength to carry it through.  But last night that strength came circling back to us, across half a generation.  Something that we did right then became something that Erin did right now.

Going to Grandma's House                                  November 15, 2001

            Well, we made it.  We’re back home again. Ever since Cheryl’s folks moved to Florida last winter, we’d been thinking about trying to get down to visit.  Although with recent world events it was definitely a lot harder to get on an airplane.  Any new developments questioning airline security had Cheryl and I questioning whether we should be or even would be making the trip.  I do know that there is no way we would have gone if the crash of Flight 587 came the week before our trip instead of the week after.  And I don’t know if it was easier or more difficult the fact that it was all five of us traveling together.  Maybe Erin and Katie’s self-centered motivation helped balance out their parent’s nervous cautiousness.  They had never been to Disney World, never been to Florida, and never been on an airplane.  How could they face their friends if we didn’t go on this trip?  OK, they didn’t come right out and say it but as far as they were concerned nothing was going to get in the way of them finally going to Florida.  This was not our ordinary camping trip and we all knew it. 

            Rose seemed to be OK with the whole thing.  We would talk to her about it so she’d know what to expect, mostly about getting in an airplane and going to see Grandma P.  Rose frequently sees airplanes flying over out house, heading in to land at the airport in the next town over.  We’ll occasionally point them out, Rose would look up and spot them and then make the swooping sign for airplane.  But it was Grandma’s trip to our house this summer that really nailed down the concept of an airplane for Rose.  Cheryl took Rose and her sisters to the airport to see Grandma off.  Seeing Grandma at the airport, getting on the plane, the plane taking off and flying out left quite and impression.  From then on, any mention of Grandma, would have Rose signing “Grandma”, and then “airplane”. 

So when we’d tell her, “Rose, you’re going to go in an airplane to Grandma’s house,” she knew what it was about and she’d answer with a confident, knowing nod of her head, “Yes.”

            Overall, the trip went really well.  We had a great time, got to do new and exciting things and got to visit with Cheryl’s mom, but we did have a few surprises.

~

            The first surprise, and only bad one was when we were boarding our plane to depart Connecticut.  The flight attendant pulled us aside and asked to inspect the child car seat we had brought along for Rose.

            She told us, “I need to check your child safety seat to make sure it’s approved for aircraft use.”

            I gave her a surprised look and she said, “Yeah, maybe only one in ten flight attendants will know enough to look, but I know about it and I am obligated to check.”

            She flipped the car seat around and read the information molded into the back, “Yup, says right here ‘For Automotive Use Only,’ you’re going to have to check it.  You can’t use it on this flight.”

            “Are you sure?”

            “Oh yeah, actually she’d be safer having you hold her than having her use a safety seat not approved for the aircraft.”
            She went on to try to explain some technical fact about the difference between aircraft and automotive seats.  I was looking at Rose’s car seat with it’s 5 point restraint safety harness and I was thinking ‘there’s no way me holding her on my lap is safer than this car seat.’  But I could see also see there was no way I was going to win.  Grudgingly, I gave up Rose’s car seat.

            Of course, everything went fine.  I did hold Rose on my lap for take off and landing, but she was just not going to accept sitting on my lap for the whole three hour flight.  Rose “sat” in the middle seat between me, in the aisle seat and Erin, in the window seat.  I use the term “sat” very loosely because Rose was in almost constant motion; crawling over Erin to see what she’s looking at out the window, climbing onto Dad to get some of his snack, or peaking back between the seats to play games with Mom and Katie.  I was a little frazzled from Rose flying unrestrained for most of the flight but she really seemed to be enjoying herself.

            We arrived at Orlando International Airport with no other problems.  The aircraft safety jitters that Cheryl and I had faded into the realization that we were actually on vacation in Florida.  Erin, Katie, and, I think, Rose, were all thrilled to have completed their first airplane flight. 

We all worked together to collect our bags and find our way as we maneuvered our considerable pile of luggage through the airport and out to the curb where the Hertz car rental bus waited. 

The bus was nearly empty as we climbed on board.  The five of us made it to the back of the bus and spread out in all the empty seats.  The kids were enjoying the freedom of trying out all the different seats as we waited for the bus to fill up. 

Shortly after us another family of five entered the front of the bus, parents about our age, three kids, somewhere between Erin and Rose’s age.  Their kids started the same routine that our kids had just gone through, trying out every available seat, searching for some elusive seat quality. 

As they moved to where we sat in the back of the bus, I noticed one of the kids, a young girl, about the same build as Rose, but maybe a head taller, walking with balance and confidence, with her bangs cut straight across, long blonde hair falling to her shoulders, a smallish nose and mouth, and those distinctive almond shaped eyes. 

I looked at Cheryl, getting her attention with a questioning look towards the young girl.  Cheryl answered with a small nod of her head, yes.

            I was taking it all in, thinking about the odds of our chance meeting and trying to decide how to tentatively broach the subject.  The little girl’s mom caught up with her daughter.  They both took a seat near us.

            I offered a cautious, “It’s a small world.”

            She looked at us, taking us all in, Rose sitting in the bus seats between her Mom and Dad.  She smiled a tired smile, “Yes, it is.”

            On the bus ride out to the car rental place we had a nice little talk about out unique shared life experiences.  Her daughter, Taylor, was now 5 years old and doing well.  She had the same heart defect and repair as Rose.  Taylor had done well.  We hinted at the excitement that Rose had put us through.  Taylor had started talking around 3, and now at 5, her Mom felt she did a good job of expressing herself.  We mentioned that we were signing with Rose and she was doing well with it.  The mom said she never felt the need to take up signing because her daughter was always so verbal, with lots of blabbing, before she started her first words around age three.  I just accepted what she said and didn’t debate the point.  I’m learning to respect the difficult life choices that families can be faced with.

I do hope Rose starts adding a few more words to her limited spoken vocabulary as she approaches three years old.  “Mmmaah”, and “Bye”, and “Wow!” are a pretty limited selection.  And I hope Rose is speaking quite a bit at five years old.  But I am already very grateful for all the times Rose has been able to clearly express herself to us through signing.  In a world without signing, our perception of Rose’s wants and needs, of her personality, of her sense of play and humor would be entirely different.  I fear it would be much more limited. 

And I wonder how each spark of communication has benefited Rose, encouraged her to reach out and try to figure out how she connects with the world around her.  Rose started signing when she was about 18 months old (I think we may have started earlier but the G-tube and feeding issues were close to all we could handle at the time).  Since then her signing vocabulary has grown to over a hundred words, her signing sentences are frequently 2 or 3 signs or more long and we’ve had thousands of conversations with her.  We didn’t have to wait for her to talk to know what she wanted to tell us.

~ 

            We spent the first night in a hotel in downtown Orlando so we could get an early start and spend the whole next day at Sea World, our first vacation destination, before we headed up to visit Cheryl’s mom.

            Sea World was a lot of fun.  We all had a great time (Erin is now considering being an animal trainer for Sea World when she grows up).  The stadium shows, with dolphins and killer whales racing through the water and leaping high into the air were a thrill for all of us.  Although the rock concert level sound systems at one of the shows was too much for Rose.  Whenever the sound would get cranked up, Rose would start crying and burrow into Mom or Dad.  

            One highlight for us was the dolphin petting pool.  There is something inherently trusting and friendly about dolphins.  All of us, including Rose, took turns feeding them.   We would draw them in close to the edge of the pool with offers of small snacks of fish and then sneak in quick rubs and pets of their wet rubbery chins before they swam off to their next snack.  

One hard part about our day at Sea World was how much I ended up carrying Rose.  Rose was in a stroller (she’s walking well, but there was no way she was going to be able to keep up with her determined family of tourists aver a vast, sprawling amusement park.  Most of the shows and exhibits would not allow a stroller even though they were set up to allow wheelchairs to roll through.  By the end of the day, we were all generally exhausted, and on top of it, my back was ready to give out.  Constantly lifting Rose in and out of the stroller had taken quite a toll. 

We were headed up to Cheryl’s mom’s house to spend a quiet weekend in a retirement village, but I was determined to do better on our trip planned for Monday to Disney World.  A friend of mine from the CDSC had mentioned that Disney did a good job of taking care of families with children with disabilities.  After Sea World I needed help, I knew that any more amusement parks wouldn’t be very amusing if we didn’t get some.

            We were all pretty tired from our day at the amusement park and we were ready for a quiet weekend at Grandma’s house.  I honestly don’t know how people can do more than one day in a row at one of those theme parks, never mind a whole week.

           ~

We spent the weekend with Grandma exploring her new surroundings.  Saturday afternoon found us on the crowded sidewalks of an arts and crafts show in the nearby town center’s square.  

            As we squeezed our way through the crowd, from one booth to another, I was keeping an eye on Rose.  She’s still a little wobbly on her feet, her balance is not quite perfect yet, and she’s still very attracted to bright, shiny curious looking things.  For the most part Rose was just looking but occasionally she’d try to grab something to get the feel of it, say, some $700 lawn ornament that definitely wouldn’t fit into the airplane’s overhead bin. 

After just catching her a few times and reminding her, “Don’t touch, just look.”  I got tired of the game, realizing that, sooner than later, Rose would out-quick me and I might be the new owner of something I didn’t want and couldn’t afford.

            We headed out, away from the crowd, towards the center of the square where a large, bandstand gazebo stood.  Rose looked like she was interested in the challenge of exploring up and down and through the gazebo.  She hadn’t had many chances to walk or climb in the last few days and she wanted to move.  I sat in the corner of the gazebo and kept and eye on her, occasionally looking up to spot Erin’s bright orange shirt or Katie’s bright green hat as the girls wandered with their mom and grandma through the craft booths on the edge of the square.

            After 5 or 10 minutes, Rose and I had an unexpected visit.  A woman, maybe my age, maybe a little older, approached us, accompanied by a teenage girl.  At the time, Rose was playing near me as I sat on the gazebo floor with my back against the railing. 

The older woman spoke through the railing, “Hi, we saw you playing and we thought we’d come over to say hello.”

Rose stopped playing and looked up.  I turned and looked at the woman and her young friend, shorter and heavier than her, with a close cut pageboy haircut and almond shaped eyes looking shyly about.

I answered, “Oh, hi.  This is Rose, and I’m Chris.”

I reminded Rose, “Rose, say ‘hi.’”  Rose gave her hand wave sign.

The woman introduced herself and then said, “This is my niece, Dacia.  We just wanted to some over and say hi.  Dacia, do you want to say hi?”

Dacia looked down and didn’t say anything.  Her aunt answered for her, “She’s feeling a little shy today.”

I don’t know what Dacia was thinking, I’ll never know.  She might have been feeling shy or she might have been thinking some typical teenage thought like, ‘I can’t believe my aunt dragged me over here to talk to these tourists!’  I’ll never know because I was feeling shy that day, too. 

It was a wonderful gesture on Dacia and her aunt’s part to approach us.  It was a wonderful, open offer of support.  But I wasn’t ready.  For some reason, all the chance acquaintances we’ve had have been with families with children about Rose’s age or younger.  Those questions and the shared experiences are becoming a little more familiar. 

This was our first contact of the random kind with an older person with Down Syndrome.  I was caught off guard.  We talked for just a minute or two and then we wished each other a nice day, but I never asked or hinted at asking all the questions that I would like to ask an older Rose.  ‘Do you like school?’ ‘What are your favorite books?’ ‘Do you have friends?’ ‘Are you healthy?’ ‘Are you happy?’  Maybe next time.  This time it was just like a quick hug offered in understanding and support.  It was very nice of them to reach out to us.

 ~

The next night, Grandma took us out to eat at Cheryl’s Dad’s favorite restaurant.  Even in the 3 short weeks he lived in Florida before he passed away, he managed to find a few favorite places.  Dinner was fun, the five of us sitting with Grandma around the table in a busy but friendly pub. 

We had managed to order a kid-friendly meal for Rose; milk in a covered cup with a straw, along with a bowl of macaroni and cheese with a few of her big sisters’ French fries thrown in when she could get one. 

I was sitting next to Rose, doing the usual give and take.  Talking and signing to Rose, “Rose, do you want pasta and cheese?” (We use the sign for spaghetti for all kinds of past including the macaroni that goes with macaroni and cheese) or “Rose, do you want more milk?” and variations of those.  “Rose, more milk?” or “Rose, more pasta and cheese?”  (We must sign her name to her hundreds of times a day).  Rose would often answer with an affirmative nod of her head or sometimes initiate her own, “drink!” or “milk!” or “more pasta!”  I’d insist that Rose use her manners, “Rose, say please.”  She would answer with her left hand wiping across her chest like she’s trying to clean something sticky off her hand. 

When Rose was done with dinner her message was pretty clear.  My inquiries were answered with a firm head shaking, “No!”  When I didn’t get the message and kept offering food, Rose answered definitively by putting her two hands together and plowing the macaroni and cheese back across her placemat towards me.  Her body language can be pretty expressive, too.  Anyway, eventually I got the message. 

This is the kind of conversing that goes on, back and forth, between all of us and Rose, overlaid throughout our normal dinnertime conversations.  It is a bit like carrying on two conversations at once, talking to Rose somewhat slowly, trying to pick words that can be matched to our still limited signing vocabulary and then talking to each other at a normal talking cadence with our full speaking vocabulary. 

Admittedly, while we sign most things we say to Rose, we don’t usually sign what we say to each other, even when Rose is there.  I think this is because signing is still not second nature for us; it does take quite a bit of concentration and requires an effort that we cannot sustain for very long.  Some days, when the world has worn us down more than usual, it can be a real struggle as we stumble through trying to find the right sign to match our spoken words.  Other days, most days it fits well into the flow of our lives.  Sometimes we’re eagerly picking new signs out of our SEE (Signing Exact English) dictionary, looking for signs we thing Rose must have to express this moment in her life.  And sometimes, we are rewarded with a special moment; Rose using a sign for the first time on her own.

This day and this dinner was a particularly good one for us.  We had enjoyed a relaxing day with Grandma and we were all almost fully recovered from our Sea World marathon.  And Rose was feeling especially social.  Somehow, she had spotted an elderly couple that was sitting at a table directly behind her highchair.  She spent a lot of time twisted completely around in her chair so she could engage them with big hand “hi!” waves and her big smiles.  And they were giving her plenty of positive encouragement, like only experienced grandparents know how. 

The couple finished dinner before us.  As they were leaving they stopped by our table.  The woman said, “You know, I have to tell you, you have a beautiful family.”

Cheryl and I tried to sound humble, “Thank you, that’s very nice of you.”

The woman continued, “I hope you don’t mind me asking but I saw you signing to your daughter.  Is she deaf?”

This is the most common side effect of signing to Rose out in public, but we’re used to it. (Actually, the only time I was really surprised was when one of Katie’s 4^th grade classmates saw me signing to Rose and asked, “Is she blind?”  I didn’t have an answer for that one, but we do laugh about it from time to time). 

So I answered with my routine response, “Oh no, Rose isn’t deaf.  Her hearing is fine.  But she does have Down Syndrome and she is speech delayed so we’re teaching her to sign until she can talk well enough.  It’s actually easier for anyone to learn to sign than it is to talk and she’s doing well with it.”

“Oh, okay, thank you,” The woman answered thoughtfully and then went on, “Our daughter just had a little baby boy with Down Syndrome.  He’s about three months old now.”

“Oh, congratulations,” we answered to the ‘little baby boy’ part, and then asked about the ‘Down Syndrome’ part, “How’s he doing?  Is he healthy?”

“Yes, he’s doing well.  He seems pretty healthy but he does have some kind of a hole in his heart.  He’s going to have to have an operation, but I’m not sure when.”

“Oh okay, Rose needed heart surgery, too.  It was a little tense for a while but she’s all recovered and healthy now.”

The whole conversation didn’t last more than a few minutes.  We ended by wishing each other well.  To someone else, it might have sounded like just a pleasant conversation between two families in a crowded pub, but it was more than that.  It was our lives touching their lives for the briefest of moments, allowing some quickly shared common experiences and reassurances.  I know I felt a little better hearing their expressions of open acceptance for their grandson.  Hopefully, their attitude is an example of how Rose will be accepted as she lives her life and moves through the world.  And hopefully, on this day these two nice grandparents found some reassurances in the playful conversations they had with an almost three-year-old little girl, from watching the five of us enjoying a family dinner with grandma and from our few words of comfort.

 ~

The next morning we left Grandma’s place early and drove back down to Orlando to spend the day at Disney World’s Animal Kingdom, the consensus pick we all agreed upon for our one day at Disney. 

We are not big vacationers or big on theme parks, this is our first vacation in over ten years that didn’t involve setting up a tent, so we had attempted to pick a day when the crowds would be light.  We even took Erin and Katie out of school so we could have a long weekend during the slow season.  But if this was the slow season I don’t even want to see the peak season. 

Even on a Monday, a school day in November, after all the post-September 11 paranoia and with rain clouds from Hurricane Michelle bearing down over our heads, the crowds were still considerable.  I can’t begin to imagine what the crowds would be like during peak times.  But on this day we did well and enjoyed ourselves. 

I remembered the advice my friend from CDSC had given me about Disney.  I asked at the ticket window and they directed me to a window just beyond the ticket booths called Guest Relations.  Cheryl had to take Erin and Katie to the ladies room after the hour plus car ride. Rose and I headed to the Guest Relations window.

One window was open and we stepped up to talk, I was pushing Rose in her stroller ahead of me.

I started tentatively,  “Hi, I’ve heard that you have special passes for people disabilities.  My daughter has Down Syndrome.”

“Oh, hi.”  The woman answered and then leaned out over her desk to take a look at Rose, I think it was more of the reflex to take in and admire the sight of a young child then it was to double check that Rose really had Down Syndrome.

“And how are you?” The woman asked

Rose answered, Hi, with her big hand wave.

The woman answered, “And hello to you, too” and then settled back down in her seat.  “Let me see what I can do for you here.”

Her tone was pleasant but noncommittal in a professional sort of way.  I still didn’t know quite what to expect.  I wasn’t even sure what I was asking for.  Maybe she would just send us on our way with some minimal concession.

After a minute of shuffling through some papers on her desk, she pulled out a small card, stamped it twice and started to speak, “Your daughter’s name, please?”

I answered, “Rose McAuliffe.”

“How many in your party?”

I answered again, “Just the five of us.”

“How many days are you going to be at Disney?”

“Just today.”

She wrote the information down on the small card.

“Okay, here’s what we can do for you.”  She handed me a blue and white 5X3 card labeled Guest Assistance Card, and went on to explain. 

“Just present this card to the folks at the entrance to every attraction.  This will do two things for you.  First, it will let you use your stroller as a wheel chair.  For all the attractions that have wheel chair access you would just keep her in her stroller and go with the wheel chairs.  It will also let you bypass most of the lines.  You can use the ‘Fast Pass Return’ line instead of the ‘Stand By’ line that most people will use.  That will save you a lot of waiting.”

I mumbled, “Thank you.” as I took the card.  Rose and I pulled away from the window to go look for Cheryl and Erin and Katie.  We met up in the courtyard area behind the ticket booths.

“Any luck?” Cheryl asked.

“Yeah, here.” I showed Cheryl the card.  Relief was starting to settle in, no lifting Rose in and out of her stroller, no carrying Rose through every show, no long waits in lines.  I think I was almost dancing as the five of us joined the crowds heading into the park.

The first ride we hit was one of the more popular ones, The Safari Adventure.  I showed our blue and white Guest Assistance Card to the Disney host at the entrance and they let us enter the long empty chute for ‘Fast Pass Returns’.  We were laughing out loud as we almost raced through the empty chute grateful we weren’t in the jam packed, slow moving, ‘Stand By’ line that crowded along side.  It was a giddy relief, that could have been us with the hour-long wait, but it wasn’t.  No energy spent cajoling the kids to settle down and be patient, okay, not the kids, it’s me.  We could see the tone of the whole day changing. 

In less that a minute we were parking our stroller (this ride was not wheel chair accessible) and getting ready to board our safari bus.  As we stood in the very short line waiting to climb on board I noticed a few other families with a similar blue and white Guest Assistance Cards.  Maybe this was a new experience for them too.  Maybe they were starting to realize the same sense of relief; that impending sense of being on the start of an actual vacation.  We were on the edge of a day where much fun was going to come easy to us.

And the rest of the day lived up to that promise, the Disney folks were wonderful host.  Even on the few rides that Rose couldn’t go on, (she’s nowhere near 42” tall) Cheryl or I would take turns waiting with Rose while the other one took Erin and Katie on the ride. Without the Guest Assistance Card, we might have been looking at Rose waiting 2 hours for us and we probably would have decided not to go. With the card, we were through 2 rides in less that half an hour and then we were onto the next adventure.  

 ~

There was one moment when I thought our better than possibly can be believed day was finally coming to an end.  We had just gotten out of one show, quickly checked our Disney map with the show schedules and saw that we had about 2 minutes before the much regarded ‘Birds of Flight’ show was to start.  We were already starting to learn to take advantage of our no-lines, no waiting access so we headed off for the show at a fast walk, Rose was already in her stroller from the last show and ready to roll.  We arrived at the show just as it was about to start.  I flashed our blue and white card to the Disney host at the entrance, hoping to quickly roll past and catch the beginning of the show.

He held his hand up, asking us to stop and wait.

I was confused and started to thing maybe we can’t use the stroller here, maybe we need to wait, maybe our privileges are over for some unknown reason.  I tried to blurt out something defensive, but he wasn’t listening to me, he was busy talking into his headset.

In a few seconds, another Disney employee appeared out of the show stadium and walked quickly up to the host.

That host asked him, “We have a family of five here.  Can you see what’s still available?”

The second employee answered, “I think there might be a few spots left.  I’ll double check.”  And he was gone again.

In a moment he was back.  He called to us, “Follow me, please.”  He lead the five of us into the packed stadium, down the main aisle, to a spot in the front row just to the right of center stage.

“Here you go,” he motioned to a spot kept open for a wheel chair, “You can park your stroller here and sit here.”

He motioned to a open bench along side the stroller parking spot where we could sit with Rose.  In less than a minute we had gone from feeling that maybe our perfect day was starting to fall apart to being back on top, literally sitting in the front row, in the best seats in the house.

As we sat down and settled in the exotic bird show started.  Herons swooped across the audience, just clearing our heads, Flamingos and eagles paraded across the stage, just a few feet in front of us.  Once again the Disney folks had done a great job of making us feel welcome.

There’s something about being lifted out of your daily routine, leaving your cares and burdens behind, so you can be refreshed by a pleasant sight or experience.  Honestly, there are too few of those moments in our lives these days.  Whether it is the urgency we feel in trying to raise our three children, or whether it’s all the unknowns, especially about Rose, that we are struggling to make some sense out of I don’t know but all too often we press too hard, worried that if we let up for even an instant we’ll fall further behind some imagined self-imposed timeline of expectations. 

On this vacation it was nice to have the world stop for a little while and allow us to step outside the routine of our daily lives to enjoy these simple wonders.  I know this day, or the wonderful success of this day, wouldn’t have been possible without the special considerations Disney afforded us.  We would have tried, but after a few long waits in lines our patience would have started to give out, after carrying Rose once too many times, we would’ve been physically exhausted.  We would have done a few things, caught a few shows, went on one or two rides for Erin and Katie, but at some point we would have had to work out a compromise of what we wanted to do as a family and what we were capable of.

But on this day we didn’t have to make any such compromises, in fact, with our blue and white card, it was quite the opposite.  Everything came easy to us.  All the shows we wanted to see and rides we wanted to ride fell like dominoes.  We were caught up in the ease of it, barely even stopping for lunch, ice cream cones for everybody except Rose (Cheryl had packed Rose’s favorite lunch, peanut butter and jelly sandwich, Keebler Munch’ems Sour Cream and Onion crackers and milk).  By the time the end of the day parade rolled around at five o’clock, we had covered so much ground, done so much we were all almost out on our feet (or stroller).  We had covered an amazing amount of ground and seen more then we had imagined possible.

~

We were happy but almost stumbling as we made our way back to the rental car and then back to the hotel to check in.  After a short rest the five of us headed out again, looking for dinner.  Downtown Disney was a short walk from our hotel so we headed there hoping to find a quiet place to eat.  After much more walking and searching Cheryl and I eventually figured out that the only place to eat that was even close to out family budget was the Rain Forest Café. 

We added our name to the waiting list and endured our first long line of the day.  About a half an hour later out name was finally called and we tiredly made our way to our table amongst the falling rain and the roaring gorillas (Okay, not real rain and not real gorillas but just as noisy).  It was after 8:00 when dinner finally arrived; very late for us and starting to push Rose past her bedtime. 

We were all pretty tired from the day’s adventures but Rose, in particular, was exhausted.  As the meal went on she shifted from tired and cranky into full meltdown mode, which is rare for her, but it does happen.  We had just pushed it a little bit too far, Rose had missed her nap in addition to keeping a pretty good pace all day with her mom and dad and two older sisters.  And now Rose was letting us know it.  Despite our spoken and signed pleas to Rose to eat or drink something, she just refused and got crankier. 

As noisy as the restaurant was, Rose was doing a good job of being unusually loud.  Eventually we figured out just how tired she really was and shifted into survival mode; everybody-eat-as-fast-as-you-can-get-the-check-and-get-the-heck-out-of-here. 

As we were going through this I noticed a couple sitting at the table right next to ours, maybe they were in their mid-thirties, no children with them.  The woman was sitting diagonally across from me.  A few times, when I was talking and signing to Rose, unsuccessfully trying to get her to eat at least a few bites of pasta, I caught the woman watching us out of the corner of my eye and I had the distinct feeling of being stared at. 

This was something new for us.  We are definitely used to being noticed and it’s something we’ve welcomed, but this was different.  I’m not sure what the distinction is or where the difference lies.  Maybe being noticed is the first step in somebody offering some kind of personal connection; a smile, a nod, a few words, a conversation, all gestures of friendship we try to welcome.  Maybe being stared at means being judged by somebody that has no interest in getting to know you in the least. 

Or maybe I’m just overreacting.  Our family was very tired.  The woman at the next table may have been tired as well.  Maybe on a better day, we all would have the energy and the wit to make some kind of connection and we all would have been better off for it.  But on this day, at this time, I just let it go, we had already switched into survival mode: we-ate-dinner-as-fast-as-we-could-we-got-the-check-and-got-out-as-fast-as-we-could.  Back in her stroller, and headed back to the hotel, Rose settled down.  Normally Rose can’t sleep anywhere but her own crib.  This night, Rose was asleep in her stroller in about two minutes.

 ~

The flight home the next day was uneventful.  This time the flight attendant didn’t catch on to the fact that we were using an “Automotive Use Only” safety seat for Rose.  Rose didn’t seem to miss the freedom too much.

All in all, we had a great time over our six days of adventure.  We spent time with Grandma.  We got to see her new house in faraway Florida.  We saw some amazing vacation sights.  Erin and Katie got to fly on an airplane for the first time.  They reminded us often that Rose had already flown to San Francisco.

Honestly, maybe I’m guilty of setting my expectations too low but for us just getting down to Florida and back in one piece felt like a huge accomplishment.  Doing all that we did and meeting the people that we did just makes the experience that much more special.

When I think back on this trip now and I reflect upon all the chance meetings that we had with so many different people, I start to realize that there’s so much more to Rose than I had ever known, or ever probably understood.  I should have had some inkling of this before but I didn’t fully appreciate what we were experiencing.

Rose is very well known in our small town.  Whenever Cheryl or I take her to the store, or to the library or to one of her sisters’ sporting events or one of their school events, we receive many spontaneous greetings. 

When I am out with Rose, I frequently hear voices I don’t recognize and faces I’ve never seen calling out, “Hi, Rose!!”  I’ll turn to be warmly greeted by people of all ages, from younger siblings of Erin and Katie’s classmates to parents of friends Cheryl and I have made.  Although, I say they greet us warmly, the truth is, much more often than not, people are drawn to Rose alone.  They focus right on her, talking to her, prizing any connection they can make.  Often younger children will sign greetings to Rose, learned from their last meeting with her. 

All these expressions of kindness, these reachings out, these human touches, these invitations to include Rose in their lives are a joy and comfort to us.  Our friends, our community, our everyday world reaches out to Rose in an unconscious, spontaneous embrace.  Initially I thought that this was just a response of reassurance for Cheryl, myself, Erin and Katie.  But I’m starting to realize it’s a lot less about us and a lot more just about Rose herself.  There’s some quality, some essence of Rose that seems to bring out the best side of the human nature of people.

This vacation out of our comfortable everyday world has opened my eyes to a greater truth about Rose.  I used to think that maybe people didn’t notice that Rose had Down Syndrome, maybe people just thought of her and accepted her as a regular kid, whatever that is.  Maybe somewhere buried in there is my own reluctance to fully accept Rose as she is, buried deep in my own high expectations and hopes for as much of a regular life as possible for Rose, whatever that is.

The truth is people readily notice that Rose is different.  With every stiff-kneed, side swinging step, with every soft expression on her low muscle tone face, with every look from her almond shaped eyes, with every silent answer to, “So what’s your name?” her closed hand tapping over her heart, Rose, Rose, with her every action, with her very presence, she tells the world she’s different.

Different in a way that makes you look at yourself and question how you perceive people, question how unfairly you judge them, and question how you can decide what somebody is capable of when you don’t even know what’s possible.

Different in a way that makes you realize that old priorities in your life no longer apply, makes you realize that the differences that keeps people apart are usually more your perception than reality, and makes you realize that while you’ve been blind to it many people have known this long before you.

Rose has been a bright shining beacon of difference across the path of our lives.  She has illuminated for us actions and events and emotions and connections we would have never seen without her, making us see and understand .  The greater truth here is that because of Rose we have all seen people that are the best of humanity.  Even in people we already knew, she’s shown us, magnified for us, the best part of their human nature.  

(Just a note: I apologize if this is too emotional or too over the top.  I think I'm still trying to sort through the impact that Rose has had on our lives and continues to have today.  I did have a bit of a realit