A real hero

I found this message over at My Life with Gabriel.  I couldn’t say it any better so I’ll quote verbatum:

I am certain that you have most likely heard of Andrea Roberts and her passionate mission and work through Reece’s Rainbow. Currently, her organization is now in the running to be voted “Hero of the Year” through People magazine. The prize is $10, 000. I believe that Reece’s Rainbow is one of the most deserving organizations to be granted this money.

Andrea and her team at Reece’s Rainbow help to find forever families for international orphans with Down syndrome. Most, if not all of these children, are shunned by family due to cultural pressure as well as economic strife, into orphanages. By age five, if the children have not been placed with a family, they are then transferred into mental institutions.

Since 2006, Reece’s Rainbow has helped 130 orphans find forever families. (Stat taken from the website.) It takes a lot of fundraising (and creative ideas to raise money!) for Andrea and her team to make this organization work but more importantly, save lives.

I think if everyone spreads the word about the People Hero of the Year Award and Reece’s Rainbow, the organization would have a greater chance of winning. Let’s help Andrea with her mission! And keep spreading awareness about Down syndrome!!!

VOTE NOW & VOTE OFTEN! :)

Thanks Lianna for bringing this to our attention!

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Finding out

Warning, this is a long post.  Grab the big mug of coffee.

Brooke’s post on finding out about Jonathan’s diagnosis of Down syndrome brought back memories of that surreal period; when we found out we were not on the road we thought we were on.

For me, everything was clicking into place.  I was a late bloomer.  I spent my 20’s skiing, rock climbing, and mountain biking in the mountains of New Mexico and the California Sierra.  When Brooke captured my heart and dragged me to Green Bay, Wisconsin, only then did I get serious about my career.  While she worked as a news anchor, I raced to complete my degree.  Following school, I landed a job as an analyst and began a very successful second career.

***

Perfect Charlotte was born 18 months later and while I was contemplating graduate school, Brooke was contemplating another child.  I was on the fence.  I was wary of the risks.  But we are a team, and it was important to Brooke.

My career was progressing well but it was clear to me that I was not going to realize my goals without an MBA from a top school.  In the spring of 2002, I applied to the University of Chicago Graduate School of Business to attend the weekend program.  This was the only competitive part time option for someone in NE Wisconsin.  I waited for acceptance.

In July, I received the news:  Accepted!  In the fall, I would begin taking classes on Saturdays in downtown Chicago.  I don’t think my feet touched the ground for 3 weeks.  For me, this wasn’t just acceptance to a top school, but a personal achievement; and acknowledgment of my capabilities.  This meant A LOT to me; this ski bum turned businessman to be accepted to a highly competitive top five program.  It also opened the door to dreaming about what the rest of our lives might look like in terms of salary, location, status, and on and on…

Can you tell I’m competitive and ambitious?

***

So floating on this cloud, I followed Brooke into the doctor’s office for the ultrasound.  These are nervous visits because when you go due to “advanced age” you know there is a more than small chance that you might get news you don’t want.

I can’t describe the vibe in the doctor’s office better than Brooke did in her post.  Something was not right.  When the geneticist finally came in with the stats “…hole in the heart…chances of Down syndrome….pinky finger curved…markers…”  vision blurring, ringing in the ears, no. no. NO!  this is not happening, I am not hearing this!

We needed… I needed certainty.  The only way was an amnio.  The Doctor assured us that by monitoring the procedure with the ultrasound it was very safe for the baby.  I needed to know.  We wouldn’t know for 10 days.

I recall this was late in the week, and we were heading to my family reunion the next day.  I said to Brooke, “let’s go now.”  So we called in sick and headed to western Michigan via the northern route.  When you head to the other side of Lake Michigan, you can go through Chicago, or go across the top of Michigan.  People, or no people.  We didn’t want to see anyone, so the desolate north was a unanimous vote.  We were less likely to see anything that would remind us of how ugly and cruel the world can be.

The pity party begins.

I have a nephew with significant birth defects.  Before age 2 he had countless  surgeries to reshape his skull, fix his hips, and on and on…  To this day he remains significantly delayed and requires assistance for the most basic tasks.  Caring for him has been a terrible hardship for my brother and his wife, affecting all aspects of their lives.  It was this extreme vision I had as I contemplated a child with special needs.

The doctor warned us off searching the internet to find out about Down syndrome due to the few, but very misleading sources of information.  So at this time, we were clueless.  We told our family what we were dealing with–official results wouldn’t be known for a week.  They were sympathetic, but no one knew how to process it.  First, it’s not official so lets remain hopeful.  And even if the baby had Down syndrome, no one knew what it might mean.  We salvaged the week.

***

When we received the official results, I was devastated.  I couldn’t see the future.  All the dreams I had, the vision of where my life and career would end up was shot.  (Remember my vision of special needs.)

I moped for several weeks.  I let close friends at work know.  Many said they were sorry.  They were supportive, but no one knew what it meant.  I reassessed graduate school.  I decided that since the baby was due in December, I could at least complete, or nearly complete one quarter.  So at least I would have that experience.

***

I can’t tell you how distinctly I remember this…and I hope it always remains vivid.

I popped into one of my co-worker’s cube and after some small talk, and during the update on the pregnancy let him know that the baby had Down syndrome.  Without hesitation, he said “Congratulations!  Those kids are awesome!”  I was literally shocked at his sincerity.  He didn’t say this to make me feel better, he said it because he believed it.  After a moment I asked “oh yeah? How do you know about this?”

“I volunteer for Special Olympics every year.  You have to get involved.  I love these kids.  They’re great!”

Over the next 24 hours I made a transformation that hasn’t reversed.  I thought, maybe it will be great.  All the odds of the health issues; what if (besides the heart issue) he wouldn’t have any issues?  What if he is at the high end of the cognitive spectrum instead of not? Perhaps my own life–our lives, our plans–wouldn’t be interrupted as I feared.

I decided that until proved otherwise, I would assume that having a child with Down syndrome would be great.

Now I won’t pretend that I don’t have bouts of doubt and worry, but for the most part this attitude has carried me through.  Of course, Jonathan makes it easy.  Not a day goes by where he doesn’t fail to make me laugh out loud.  His smile is infectious.  His unembarrassed love for his big sister, mom, and friends causes me to pause and think “I need to be more like Jonathan.”

***

The tag line of our blog is Spreading awareness about the blessings of Down syndrome. This may seam odd to some.  How can this be a blessing?  Time will tell if we conclude that it is a blessing for Jonathan, but for those that know Jonathan, it is a blessing.  Jonathan teaches us to love, to smile frequently, to see the beauty in all people.  Don’t we all wish to have a memorable and positive effect on those who know us?  Jonathan is seven and already has that box checked!

Jonathan has made me a better person.  He has taught me patience.  He has taught me to value the gifts that everyone possess, not just the standard measures of intelligence, status, education, job title.  He is teaching me to be kind.

I’m still pretty ambitious.  I finished graduate school.  My career has taken off and I have reached many of my goals.  Along the way, Jonathan has caused me to add other goals:  to have a positive effect on others; to serve.  These boxes are not yet checked complete.

If I were to have the same positive effect on someone that Jonathan has had on me, I would consider myself a pretty special person.  One of the ways I try to do this is to say to every parent of a child with Down syndrome:

“Congratulations!  Your kid is going to be awesome!”  …and you know what?  I’m right!

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Happy Birthday to Me! …and finding out about Jonathan

Well, Phil let the cat out of the bag – yes I am celebrating a BIG birthday this weekend: THE BIG 5-0!  Today is my actual birthday, but the festivities kicked off on Friday night with a surprise birthday party in our backyard featuring the perfect combination of family, friends, food, champagne  – and gifts.  (I can’t believe everyone brought presents– and not a package of depend undergarments or any other aging gag gift in the bunch – thanks, guys – I’m so grateful to see all of you are not giving up on me just yet! :-))

Thanks to all of you, I have actually been able to embrace this big birthday and call a truce with my age.  You see, for years, I didn’t divulge my age.  I didn’t actually lie about it.  It just rarely if ever came up because people other than very close friends and family assumed I was years younger.  (I have young children – a younger husband – she’s got to be younger than Phil, right? :-))  So, heck, I just went with it – if they were going to erase five – or even ten years, why shouldn’t I?  And, as a former female news anchor,  I learned that increasing age is not always a desirable job commodity – there is always a less experienced, but less expensive,  ingénue waiting in the wings to take your job – I know this, I’ve been her, too :-))  So age was always just a number for me.  Until Jonathan.

Phil and I got into the procreation game pretty late.  I was 35 when we got married.  We weren’t even sure if we wanted to have children when we strolled down the aisle.  But shortly before the big 4-0 my clock started ticking – BIG TIME!  And thankfully, fifty days before my 41st birthday, Charlotte was born.  I was the typical older career mom who embraced the idea of being able to decide exactly when I wanted to get pregnant and was confident nothing would ever “go wrong” because nothing ever did.  I was blessed with a wonderful husband, a thriving career, great friends, great health, lots of energy and lots of resources.  And when I made up my mind I was going to have a child – or two – by God, I was going to have a child – or two!  So almost a year after Charlotte was born, with me now fifty days shy of my 42nd birthday, there Phil and I were, ready to take a peak at our second child, with the same ultrasound tech we had when Charlotte was in utero.

And this was when the reality of my age first kicked in.  Within minutes of looking at this second baby, it was clear the ultrasound tech wasn’t up to joking around like he was when he took a look at Charlotte.  With Charlotte, it was like having Pee Wee Herman do the ultrasound.  With this new baby, it was more like Russell Crowe.  Russell was stern, Russell was silent and Russell raced out of the room with Gladiator-like quickness to grab the perinatologist and the cardiologist to deliver the news that our baby had a congenital heart defect seen in 40 to 50 percent of children with Down syndrome and that there were other markers of Down syndrome on this baby as well.

And here I am – 41 years old thinking I only have myself to blame for this state of affairs, because as youthful as  I may look or feel, and as willing as I may be to not spill the real truth about my age, my aging eggs do not lie.  And now, the statistics that I’ve read about but never really worried about  (but  Phil  DID worry about)  are racing through my head – and his as well.  What were they?  – oh yes.  At 35, your chances of having a baby with Down syndrome are 1 in 350, up from 1 in 1,200 at age 25 and up from 1 in 2,000 at age 20.  Let’s do the math now – yes,  at 40 when I had Charlotte the odds were one in 100 – dodged that bullet didn’t I?  Okay – so now I’m 41 and it’s one in 80 and by the time I have this baby at the age of 42, it will be one in 70.  The stream of consciousness panic stricken thoughts continued – what was I on crack? thinking I was going to get away with this – that I was never going to have to answer for the date of my birth or the arrogance of thinking that there would be no consequences for that baby boomer birthday?  When Phil and I left the clinic that day, I was actually apologizing to him in the parking lot about my age.  And there it began – not a birthday party, but a pity party.  Grief, shock and worry started to settle in.

I’m not proud about the way I felt that day or often during the weeks and months thereafter – but I know now it is the common reaction to the unexpected news your baby has Down syndrome.  I also know now that eighty percent of children with Down syndrome are born to younger mothers, since younger mothers are having most of the babies.  I also know now that when Jonathan was born – ninety days after my 42nd birthday, I can honestly say it was one of the happiest days of my life.

During my pregnancy, I was blessed with the gift of certainty and preparation – and time.  Time soon became my best friend, instead of my worst enemy.  We decided to have an amino to confirm we were having a baby with Down syndrome and that allowed us time to learn more and to wrap our heads around the idea.   We tried to learn everything we could about this baby before it was born.  I even found out (because a nurse let it slip) that we were having another girl. However, Phil was adamant he did not want to know the sex of this baby.  (He wanted to savor the one last thing we DIDN’T know about this child.)  So I kept the secret to myself – I went through the motions of picking out a boy name for the baby – we chose Jonathan .  It means “gift of God” in Hebrew.  It is also Phil’s middle name.  The girl name was Faith.  For months, I had a running mantra in my head, “You’re having a little Faith!  You’re having a little Faith! – Don’t worry – Just have a little Faith!”

So talk about faith!  Imagine my surprise when JONATHAN was born!

The clinic nurse who had spilled the beans about “Faith” came by the hospital room to apologize – says she was sure we were having  another girl – probably because we had just been there 17 months before-having a girl. She kept muttering she was sorry, but I actually thanked her for helping to provide the biggest birthday surprise of my life.  It came on Jonathan’s birthday, not mine, but I don’t think anything or anybody will ever be able to top that surprise as long as we’re both here to celebrate birthdays.  Jonathan, this baby we supposedly knew everything about – Down syndrome, congenital heart defect – was a HE and not a SHE.  We had a boy!   And suddenly I wasn’t mad at my aging eggs anymore.  I was just grateful that I was still able to have a baby and yes, that I was able to have THIS baby.  Jonathan has been pleasantly surprising me since the second he was born – and continues to do so to this day.

And now, with Jonathan ninety days shy of his eighth birthday and me celebrating (yes celebrating!) my fiftieth  – I’ll just come out and say it, “Happy Birthday to Me!”   Under the BIRTHDAY BABY heading  in the newspaper today it says, “You have an eye for WHAT WORKS and WHAT DOESN’T.  You will not give into FAILURE.  You are PRACTICAL and PATIENT.”   So , Happy Birthday to me, the BIRTHDAY BABY, but also to all the other mothers with children with Down syndrome – both the older mothers like myself and the younger ones as well.   Because we all know that WHAT WORKS is raising our children to be included, to be accepted and to become full participants in society.  We know what DOESN’T WORK are the outdated notions of low expectations, stereotypes and isolation.  We also know we will not give into the FAILURES of the past, when most of our children were shunned or institutionalized and not allowed to reach their full potential.  We know that by being PRACTICAL and PATIENT, perceptions – and lives- will change – for the better.  We also know that no matter how great the gifts we may open each year on our birthdays, we will never receive a gift as great as our children with Down syndrome.  Jonathan, and all the other children with Down syndrome are indeed, gifts from God.

HAPPY BIRTHDAY FROM A VERY GRATEFUL MOM.

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We’re still here, just mostly there

We haven’t dropped the blogging, life simply took over.

It was a busy week.  The kids had their first week of school.  Both kids have wonderful teachers.  Most of Charlotte’s buds are in her class.  Jonathan has moved up to first grade and is doing well so far–he received four “super stars” for exceptional behavior.  We are pushing him hard to develop good homework habits.  Fortunately, Charlotte has always come home from school and completed her homework straight away.  So to Jonathan (hopefully), that is normal.

On Tuesday, Brooke went to the doctor and nipped a respiratory infection with a z-pack.  And good thing because…

I was out in Los Angeles completing a sale which has consumed work life for the last year.  Between meeting with employees and dinners with the buyers there was no extra time….except to sneak few calls to Publix to order party platters, and emails with neighbor Katie who was helping me plan Brooke’s surprise birthday party.

I took the red eye back Thursday night, slept for few hours, then began running around town to pick up party stuff and to buy her a new video camera.  (Her old one took one to many sandstorms at Tybee.)

I took the family to dinner to celebrate the deal.  This was the first time to Bella’s cafe.  We will definitely be back.

Jonathan with the full Italian napkin tuck-in...for chicken fingers.

Meanwhile Katie, Steve, and Brooke’s brother Thad set up the party in our backyard.  We came back from dinner to backyard FULL of people.  I think she was surprised, but in any case we all had a great time.

I last saw your kid over there.

Steve and Jason guarding the coolers

The Meekers and Dr. Steve (and Karen glowing in the background.) You might recognize Dr. Steve if you watch Ruby.

Thad had everyone put a birthday greeting on the camera then gave it her with a request to do another film project.  I know that surprised her.

Happy Birthday, Brooke!

Good times

Brooke is working on a post related to therapies for Jonathan and I’m working on a post on why Down syndrome is a blessing.  Have a great weekend!

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On style

Several months ago, Jonathan became aware of image and started lobbying for a new haircut.  I’m not a real style conscious person, but I have to admit I was glad there was another in the family suggesting a different haircut.

Let’s face it, though adorable, the dutch-boy haircut is at the low end of the hipness scale.

Jonathan at the Special Olympics in May

Jonathan would frequently come to me with his hand covering up his forehead as tell me “Daddy, I want hair like yours.”

"Daddy, I want hair like yours."

Though honored, I was a bit concerned about his sense of style.  Seriously, who wants a folliclely challenged mop at the top of a forehead with similar measurements to a plantation?

The vast open spaces

So where does a young man go to decide what kind of hair style he needs?  Where else, to the gallery of Mii’s in his Wii video console:

So the next time Jonathan went to the barber and the stylist asked him “how do you want your haircut?”

“Like one of my Mii characters!”

That’s helpful.

After thumbing through a people magazine-no, I don’t want to look like Zac Efron-Jonathan decided he wanted a hair cut like the stylist had.

So, in all his handsomeness, and with a bit of bedhead, Jonathan, with hair off the forehead.

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A very productive meeting

I have never been more proud of my local Down syndrome support group than last night.  Lowcountry Down Syndrome Society (www.ldssga.org) has done some amazing things in its only five years in existence.  The group has raised a lot of money through a very successful Buddy Walk, which last year drew more than 3,000 participants.  That’s a pretty impressive crowd for a city of Savannah’s size.  Because of the success of our Buddy Walk, we’ve been able to launch some great programs that hopefully will only get bigger and better in the years to come.

A couple of our moms just wrapped up the second annual Buddy Camp, which pairs up our children with therapists for two weeks in the summer, allowing our kids to keep their skills sharp before they head back to school. In June, we kicked off our first ever NIGHT OF CHAMPIONS, celebrating the achievements of six area adult workers with Down syndrome and other intellectual disabilities and their employers.

So as Down syndrome groups go, we are active, we are creative, we are passionate and we are successful.  But I have to say, I believe the group’s biggest success lies in the personal connections we have made with each other and the support we can offer new families who seek us out.  And that brings me back to last night.

We had a regular general membership meeting where the Buddy Walk was the major item on the agenda.  The beauty of our meetings is that parents are encouraged to come with their children in tow – all their children – not just their children with Down syndrome. (The meetings are great fun for Deedah as she is getting to know a great group of other children around her age who also have brothers or sisters with Down syndrome.  I picture this group becoming great pals as the years go on.)

Usually for our meetings, a babysitter is hired to keep the older children entertained in one room, while the adults and the babies hang out in the main room where the business is conducted.   Throughout our meetings, though, children are running in and out and sometimes it is chaotic and loud and you have to wonder how we get anything done, but we always do.  :-) And the children are a lovely audio and visual reminder of our mission.  We’ve also found that for our new parents, it is inspiring for them to walk into a meeting where you are likely to see probably more children with Down syndrome all assembled in one room than you have ever seen in your life.  And to see how beautiful and “normal” they are – and to see how much their parents love them – and to see that these are just regular families – who just so happened  to be brought together by an extra chromosome.

Last night, the mother of an eight month old girl joined us for the first time.  I personally was proud and happy that she came.  And I have to thank Jonathan for that.  The woman had dropped by our church on Sunday following services to thank our pastor for helping out her family years ago during some tough times.  She wanted to let him know that things were better now.  She had an older boy and girl with her and was carrying a baby girl whose face was buried in her mother’s shoulder.

During the time she was talking to our pastor and his wife, she saw Jonathan running around the church grounds with the pastor’s kids.  (Our pastor and his wife watched Deedah and Jonathan this weekend while Phil and I went away to celebrate our anniversary. :-) ) The woman said to our pastor, “Who is that boy?”  My pastor said, “Oh – that’s Jonathan.”  She said, “But he has Down syndrome and he’s running around just like any other boy – just like my boy.” My pastor replied, “Yes that’s what Jonathan does.”  :-)  And then the woman flipped around her baby and said, “My baby has Down syndrome.   I never thought she’d be able to run and play with the other kids like that.  And talk like that boy.”

My pastor told her she had to meet Phil and me and get to know the other parents involved in Lowcountry Down Syndrome Society.  Thankfully, he got her contact information and  I called her the next day, and the day after that, there she was – sitting at our meeting with her  beautiful baby on her lap and her older children  running around with Deedah and Jonathan and all the other  older kids.  At one point Jonathan ran in and she said to me, “I can’t believe your son.  He is amazing.”  I thanked her and joked with her that she better watch her baby because Jonathan is quite the lady’s man and he may want to marry her daughter some day.   :-)  We laughed , but then I also added  that Jonathan does seriously talk about wanting to be married and that I certainly hope he finds love, just as I hope Deedah does.  She spent part of the meeting flipping through our annual calendar that one of the moms gave her, smiling at the gorgeous pictures depicting the children’s wonderful achievements.  That for me would have been enough – the fact that she made the effort to come, the fact that she would go home with a calendar, the fact that her older kids would meet some nice new friends.

But then the meeting became in my mind our support group’s proudest moment.  Why?  Well, because before the meeting  and after the meeting,  almost every parent there came up to this woman to introduce themselves, offer their congratulations and to ooh and aah over her baby!  I know it’s a simple gesture – I know it happens in Down syndrome support groups around the world everyday, but it is powerful, meaningful and potentially life-changing.   You will certainly never forget the first people or person who extended you kindness, support and understanding following the birth of your child, or in my case, when Jonathan was still in utero.  In this case, it came at a meeting eight months following the birth of a beautiful baby girl.   That is a long time to wait to be surrounded by people who know better than anyone else the joyful journey this young mother and her family will take –  and who will understand the bumps along the road as well.  I’m so grateful our support group was there last night, and I hope we will continue to be there for this mom’s ride.  :-)

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Regrets, and the giving tree

In Savannah, we are blessed to be surrounded by majestic live oak trees.  These trees lose their leaves in February, but immediate grow new leaves such that trees are never bare.   Their limbs reach for sunlight and lower branches will grow horizontally 75 feet creating a cantilever that defies belief.

We have several live oaks in our backyard, the largest of which must be 100 years old.  It sits just to the south of our back patio, and provides wonderful shade.  From one of its limbs hangs a tire swing…or, I should say, hung a tire swing.

This swing was the worlds best swing.  It hung from 20 feet of rope which created an arc extending over the neighbor’s fence.  The neighbor kids would line up for a push.

My little thrill seekers loved this swing.  Charlotte would screech in delight.  Jonathan would emit an uncontrollable, adrenaline induced chuckle:  hu-hu-hu-hu-hu.  I would push them by running under the swing so the take off point was 10 feet up.

Jonathan would hug the rope and grin with such pleasure.  His face a picture of rapture.  Every time I pushed him, I could see a video, the Talking Heads “Wild, Wild life” playing in the background.  Jonathan swinging in slow motion, spinning, grinning.

My regret: I never took that video.  I have the memory, but that will fade.

A month ago, the branch cracked, slowly falling into the neighbor’s yard.  Our tree swing forever gone.

The tree people came and cut up the branch, leaving a pile of logs.  Although we will never swing there again, that branch will continue to give.

The logs will provide a humor filled afternoon as the menfolk gather to split them.  And on some cool January evening, the neighbors will gather in the front yard around the fire pit.  The same logs, now dry, will entertain for hours, dancing and popping, while we talk about our kids, crazy things we did in college, and plan the next sailing trip.

Posted in Deedah, Jonathan, neighbors | 1 Comment

Hygiene and routine

I’ve always said, “Marriage is the death of hygiene :-).”  But after today, I think I can add another item to that list – summer.  It occurred to me when I was chatting with my neighbor who was mentioning that her children’s open house is tonight and that they start school tomorrow.  AND that it might be nice if the kids took a shower – AND that by the way, she couldn’t remember the last time that had happened. :-)  I, too, had to admit that my children have not exactly been one with the body wash lately. That’s not to say they are filthy –you could argue that frequent trips to the pool are a good summer substitute for a shower.  And there’s no way they would hit the beach without coming home and rinsing off.  (Same with my neighbor whose kids are heading back to school tomorrow.)  But I have to admit to being pretty lax lately when it comes to the whole nightly bath time thing.  And as long as my kids don’t have any plants growing from their limbs, 😉 (ala the girl in Mrs. Piggle-Wiggle who refused to take a bath), I’m pretty much okay with that.  For now.   Because hygiene equals routine – and frankly, I’m not ready for that just yet.

Our summer starts to come to a close when our neighbors start flocking back from vacation.  And I do mean flocking.  Just like the swallows returning from Capistrano, the family whose children start school tomorrow return from their summer sojourn, heralding a new season around here.  Their children are greeted back to the ‘hood like rock stars – there is lots of screaming and hugging and jumping up and down when they finally open their front door and run into the street.  Before that “big rock star reveal”, my children and others on the block are under strict instruction not to knock on their door because they may be jetlagged and need their sleep.  After the mini rock star reunion, there is a quick perusal of haircuts, shoe sizes, nail polish colors, silly band quotas and teeth that have grown in and teeth that have fallen out.  All the things that happen in the life of a kid over the course of a summer.  After checking each other out, the clock starts ticking on an almost constant play date that will only be interrupted in about a week with the realization that it will soon be necessary to get back to the shower – and back to school.

I’m grateful my kids live in a neighborhood where it’s okay to get dirty, hang out in a little pack and run in and out of each others’ homes  – supervised by a group of parents who look out for the children and for each other.  It’s been that way since we moved here three and a half years ago.  In fact, my first introduction to what a great deal we have here was our moving day.   It also happened to be my kids’ first day of school here in Savannah.  (Yes, they both took baths in the hotel room the night before – I’m pretty sure at least. ;-))  Anyway, our new next door neighbor saw our moving truck drive up and came out to introduce herself to Charlotte, Jonathan and me.  (Phil was at work.)  She asked when Jonathan was getting home from school that day (he was in preschool at the time) and would the moving truck still be there when he returned?  I said he got out at noon and that yes, the truck would still be there.  She said, “bring him over to my house when he comes home from school and he can play with my kids until the truck leaves.”  And yes, at this point, I’m going to mention Down syndrome for the first time in this particular post.  Here was a woman who had just met Jonathan and yet she didn’t treat him any differently.  She embraced him instantly as “just another kid on the street” – a new playmate for her children.  I thought, “Wow, This woman is awesome!  What if EVERYBODY could instantly see past the “disability?”

But right now, as MY kids get ready to head back to school (in about two weeks from now,) you’ve got to see past the dirt.  J    And I know it’s definitely time to get scrubbing.  While my friend’s two children (all freshly showered and ready to get back in the game) headed to their open house this evening, Jonathan, Deedah and I ran a few errands.  At our second to last stop, Jonathan made an announcement I’m pretty sure almost everyone in the store could hear.  (Proud parental moment of the day;-))

“Mom,” he said – “I need a bath really, really bad.  I’m super dirty.”  No need to call Mrs. Piggle Wiggle – I’m on it.  Time to get back to hygiene and back to routine – ready or not.

Posted by Brooke

Posted in Deedah, Jonathan | 2 Comments

A better parent than me…

Last Friday night we witnessed this exchange.

Charlotte ran up to the adults and complained “Jonathan hit me on the back with boogie-board and it wasn’t an accident!”

(I quietly congratulated myself for not buying the boogie boards with knives attached.)

Jonathan was summoned to work it out and after finding of facts were complete, was deemed guilty.  We told him he was wrong to do that asked him to apologize.

“Sorry sister.”

Sorry doesn’t help, Jonathan,” yelled Charlotte, clearly disappointed with the severity of the punishment.

Jonathan stepped forward with body language clearly implying Charlotte was about to take another whack from the board and yelled:

“SORRY DOES HELP!”

It takes a better parent than me to not chuckle at that conclusion.

Until next time, Phil

Posted in Jonathan | 4 Comments

On profanity, and pride

Phil and several of you challenged me to blog – so here goes!

I am so moved by the comments we’ve received about the film, my children and our family – I can’t even begin to express it.  I, too, am grateful for the wonderful  Deedah “shout out” from the incredible Kelle Hampton.  What I love so much about Kelle is her ability to, not only inspire, but to also, “keep it real.”   She has a great sense of humor that will serve herself, her children and now so many others well through her blog.

The fact that her favorite part of Deedah is when Jonathan says “s**t” puts a huge smile on my face!  I, do, however, have to correct the record because my child’s salty vocabulary is actually not as sophisticated as Kelle’s blog entry gives him credit for.  The actual word that Jonathan says in the film is “Dam*it”, which just so happens to be an abbreviated version of my profane phrase of choice – “G** Da**it!”  Yes – another proud parental moment!

I don’t have to wonder whether Jonathan picked up that word on the playground or at a friend’s house or at karate because “GD”- just like my father before me- happens to be the phrase I use on the rare occasions I go nuclear and you’re wise to clear the room.  I think I’ve said it in front of my children twice and clearly that was all it took for Jonathan to embrace it as his own. :-)

The day the camera was rolling on the miniature golf course and he unleashed the D-bomb was, as far as I know, also the last time he said that word.   (He only needed to be told once – “Say that word again and we’re going home.” )  But although he was reprimanded for using the word, of course, as a parent, I had to chuckle.   And as a parent of a child with Down syndrome I had to chuckle and then smile with the knowledge that I had captured on camera what I think of as “Down syndrome Gold.”    That’s because our children are often so stereotyped that I sometimes feel when people are describing them – (and it is almost always well-meaning and so I’m not trying to be negative here.)   But when people say, “Those children are ‘so loving’ and sweet and cuddly, etc…”  I sometimes feel like they’re describing a golden retriever puppy and not my son.

For Jonathan, like all children, has his golden retriever moments to be sure, but he also has his Doberman days.  (Great – now I’m stereotyping DOGS!!!)   Anyway, what I hope the “Da**it!” does is show that our children with Down syndrome are individuals, who are as capable of displaying their emotions and frustrations as the next kid.

As for why we bleeped out the D-word, leaving it to the viewer’s imagination, we found in early screenings of Deedah that the word got such a knee-slapping response that people (especially children) were laughing so hard that they missed the next part of the movie.  We also had a response from a local principal who was willing to show Deedah to her entire school, including parents, but was concerned that a few parents might have problem with the D-word.  Although I was initially a bit resistant, (stop censoring my art, man! :-)) it surely makes perfect sense that no principal wants to take a phone call from an irate parent saying, “why did Susie learn a new word in school today that certainly wasn’t on her weekly vocabulary list?”

We agreed to bleep out the “Da** it!” in the final version of the film because one of our goals is to show Deedah to school children, school staff members and parents.  We were grateful for that local principal’s willingness to show the film and we didn’t want one possibly offensive word to prevent that from happening.  That’s how the “Da**-it- less” Deedah came to be.

So here we are – more than a year after the “Da**-it!” clip was shot.  I’m happy to report that Deedah, thanks largely to Kelle, is gaining traction.  Since the miniature golf meltdown, Jonathan has added more choice words to his vocabulary.  He is particularly fond of “Dang it” right now, which I find irritating but I guess, at this point, is a reasonable compromise if used in moderation.  He is also partial to the word “awkward,” so much so that at one point this summer I threatened  to start charging him 25 cents for every time he said it.

As for “S**t”, I will join Kelle in saying that that is still a goal for Jonathan, as it is now for Nella.  Jonathan’s  speech  has improved astronomically since the film was shot, but alas, we are still working on the “sh” blends.  I know for a fact he couldn’t have said “s**t” when the film was shot because just the other day on the way to karate, he was looking at cloud formations in the back of the minivan.  He shouted out, “Look mom ,  a camel and a sip.”  “A what?”   “A sip!”   “A WHAT?”    “A SIP – A PIRATE SIP!!!”    And looking up at the clouds I saw it – a huge two humped camel standing right alongside at pirate sHip.

Oh – s**t – I’m so proud ! :-)

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Posted in Deedah DVD, Jonathan | 12 Comments