Al Pacino’s got nothing on TRBL

T w shower cap  Early one evening last week, we were lying down with Timothy in his bed.  Laura was reading to him, and I saw my window of opportunity and snuck out of his room.  I got into the hall and sat down at the dining room table, shocked at the ease of my escape.  Just then T burst into the hall, with his head on a swivel, searching like a shepherd looking for a lost baby lamb.  But actually, no, the look on his face was more like a waiter hunting down a customer who’s just stiffed him on a bill.

And so back to the flock did I go.

T covering face     T walk 2

Speaking of escapes, one of the best lines of a bad Godfather movie comes from Al Pacino when he said “Just when I thought I was out, they pull me back in…”

That phrase sums up us lying down with Timothy in the middle of the night.

He made the transition from crib to bed a few months ago, and fortunately he has been sleeping through the night more often, which is appreciated.

But on the occasional night that he wakes up in the middle of the night, he walks over to our bedroom, in which case one of us returns the baby bird to his nest and lies down with him.  Generally the ‘lie down’ just takes a few minutes until he falls back asleep.  But Timothy has a wonderful sense of timing.  At the very moment that I believe that he’s asleep and I’m preparing to return to my own bed, Timothy often swings an arm over me to block my exit.

And bam, just like Michael Corleone, I was thinking I was out, but the not so sleepy redhead decided I wasn’t going anywhere.

T outside w a drink      T w St Fr

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Timothy continues to work on speaking.  Recently, he’s been making many new sounds and working to communicate — with signs and with his talking board — but he still isn’t saying many words.  A doctor asked us if we’re pleased with his progress, and I told him it’s hard to judge progress without more context.

I explained that Timothy’s speech challenges are like being in a tunnel.

We know that Timothy has made a mile’s worth of progress in the past year, which is encouraging, but we don’t know how long the tunnel is.  It could be a 2 mile long tunnel and he’s on the verge of speaking, but it could be a 20 mile long tunnel and we’re still in for a long ride.

It’s also hard to know what progress looks like.  My view has been that ‘progress’ is simple — speaking words (partly because it seemed to come so easily to our older girls) but we’ve realized that for Timothy there can be many signs of progress before he’s saying words.

Which is why we try to keep the ‘courage and patience’ motto in front of us.

The ‘Patience’ to stay calm, to realize that there’s much we can’t control.

And the ‘Courage’ to keep the faith, to keep working hard on the many many things that we and our wee shepherd can control.

T at chalkboard2  T at chalkboard4  T at chalkboard3  T at chalkboard

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After four years of baths, one day Timothy was in the tub and reached for the soap dish, with a look on his face like ‘Hey, when did you put this thing in?’

When I helped him exit the bath, I noticed that a bar of soap was still floating in the bath water.  Then I realized that our formerly rinsed young boy was covered in soap film.

And so back into the bath did TRBL go.

aDance 26  aDance 2 .4  aDance 3.4  aDance 2

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We were saddened by the sudden passing of the musician Prince.  He seems like a good guy and was a musical genius.  After Prince’s death, people talked about the legendary dance parties at his home, Paisley Park (which was news to me because probably as a result of a computer error, I never got an invite).

Well, we certainly would not compare T to Prince, but Timothy also hosts legendary, impromptu family dance parties (and I AM invited to those, sometimes).

T dance4  T dance2 aT dance19 aT dance16 Similar to Prince, Timothy insists on a strict ‘no cell phone or flash photography’ policy and so these moments are rarely caught on film.

Capturing T dancing is like trying to photograph a rare bird.  Once dancing Timothy notices someone taking pictures, he stops and takes a run at the Paparazzi.

While I don’t know what the Paisley Park dance parties were like, they couldn’t have been much better than the swinging times we have at TRBL Town.

Because just when you think you’re out, our little Godfather will pull you back in.

Grateful,

The Lee’s

Posted in Communication, Sleep | Tagged , , , , | 6 Comments

Tell Picasso to stop licking the dog

T cooking27  T cooking9

Timothy did some cooking last week, making both pizza and chocolate chip cookies.  He had fun and at times was a little bossy pants — he may look like the Pillsbury Dough Boy, but he directs the troops like General Mills (read later in the blog about the general’s pointer finger).

T cooking5  T cooking11 T cooking24

T pizza 7  T pizza5  T pizza2

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When Timothy had his ear tube and adenoids surgery last month, they also did one other little procedure (I think they had a ‘buy two, get one free’ deal at Children’s Hospital), which was to clip the frenulum (the piece of skin which anchors the tongue to the bottom of the mouth).  Timothy has never had full range with his tongue and the tongue is an important part of being able to pronounce certain sounds.  We knew that it was unlikely to have a big impact, but it might help and after talking with doctors, we saw no downside to doing it.  A month later, the liberated tongue is enabling him to make some more sounds, but that same tongue is also having a coming of age party.

T at Bas  He’s suddenly licking a lot of things (chairs, toys, his cousin, etc), and while Timothy’s kisses have always been a little on the wet side, the tongue is now a full partner in his smooches.  We’ll need to curb that new instinct, especially when we get a dog.

T cooking26   T cooking7

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I was down in Houston, Texas this week and got a chance to visit with people from two great organizations.  Christina Yaya and some folks are working hard to raise $100,000 to start a GiGi’s Playhouse down in Houston (www.gigisplayhouse.org/houston) to support families with kids with Down syndrome.  I can tell you that as much love and humor and joy as you read about in these blog posts about Timothy, having a child with Down syndrome is a challenge and most families need help.  GiGi’s provides needed services and support for these families.  Timothy goes to a local chapter here for Special Olympics.  It’d be a great help for the families in Houston to get a GiGi’s as well.

And Yes Prep schools in Houston (www.yesprep.org) are serving 10,000 students with a revolutionary model to get low income kids into college.  I met with Lynda Daniel and some of her opportunity coordinators and they are doing great work and are so committed to these kids.  Really impressive and important work.

These are much needed organizations, so please keep them in mind to support.

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T painting  T painting 2

Timothy was doing some painting recently, and while he painted a colorful tableau, it wasn’t easy to tell when he was done with the picture.  That is, until Timothy reared back and gave himself a big round of applause.  That’s when I knew that Picasso was ready for his next canvas.

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T clapping

It has long been debated which finger on the human hand is the most important.

Don’t even ask me about the pinky, which, kinda like ‘Pluto’ is for the planets, is lucky to be counted as a finger.  While the fourth finger showed early promise, it’s never moved beyond being a place to put a ring on.  Angry people would tell you that the middle finger is the best for communicating a clear message, while optimistic people would say that nothing beats a thumbs up for a show of support.

But every day Timothy shows us that the second finger is the MVP of the hand.  And not even because of that foam finger ‘we’re number one’ stuff.

TRBL extends his pointer finger to let us know that he needs ‘one more’ cracker or sausage (though truth be told, more often it’s two or three more that he’s looking for).  He also uses the pointer to direct me to leave the room or to tell me where to  have a seat until he’s ready to see me.

T cooking and pointing          T w7 ith animals 7

But more than anything else, the second finger enables Timothy to regularly ‘shush’ people.  At school, in music class, at home, at bedtime (‘shhhh  dada  shhhh’), T knows that no words can better capture people’s attention and shut them up like a well placed ‘shhhhh’.

I know, I know, we should get him to stop shushing people, but we’ve first got to get the tongue thing under control so that Picasso isn’t licking the dog.

Never more Grateful,

The Lee’s

Posted in Communication, Down syndrome | Tagged , , , , , , | 8 Comments

Sleep and Rock- Paper- Scissors

T shirt cool    For the fifth year in a row, Catherine gathered friends and jumped in the waters of Lake Calhoun recently in the Special Olympics’ Polar Plunge.  This year’s team consisted of 25 juniors and seniors from Edina high school in their teal colored Team TRBL shirts.  Afterward, the group did the traditional pizza party at Davanni’s, where Timothy stood on a chair and made several attempts to quiet the crowd with his trademark ‘shhhhhhh’, and then ended his visit with a group hug and a kiss for each plunger.

Thank you to everyone who jumped in the lake or donated to support Special Olympics!

Polar best group 100  Polar best group 103Polar best group 104                      Plunge91

Timothy has ear tubes (which help reduce fluid build up and ear infections, which can affect a child’s hearing), but those tubes have been in place for over a year and were not working properly, as evidenced by his recent hearing test that showed that he was experiencing mild to moderate hearing loss.  Since hearing is an important part of speech development — it’s hard to learn new sounds if you don’t hear them clearly — those ear tubes needed to be replaced.

It was also recommended that he also get his adenoids removed.

T at hospital  T at hospital2

And so we spent last Friday at Children’s Hospital in Minneapolis for these procedures.

As always, the staff at our home away from home were excellent.

Everything went smoothly thanks to Timothy’s great ear, nose and throat doctor, Dr Tibesar.  I’ve mentioned him before in the blog because he has a family just like ours — his oldest is 20 and his youngest is around Timothy’s age — except that Dr Tibesar has 6 more middle kids than we do.

mirror2  Sleddingm

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Speaking of kids, our older girls, Elisabeth and Catherine, are both preparing to go overseas next year – Elisabeth to spend her junior year in college in France and Catherine to do a gap year on a 10 month Rotary exchange in Korea (I’m pretty sure it’s South Korea but we should double check).

It’s exciting to help them prepare for their adventures, and while it will be odd to have a full school year without seeing either of our great girls, we’ll look forward to visiting them both next Spring (especially that 16 hour flight over to Seoul with Timothy).

And so new languages are the priority in our family right now.  As Timothy works on speaking, Elisabeth is at school beefing up her French skills and Catherine is trying to learn Korean (as Cat said, ‘I’ve had 7 years of French, but now I have 7 months to learn Korean’).  Catherine’s enthusiasm for her new language led her to add Korean as a language on my phone, which was funny until I needed to send an urgent text but found myself face to face with a phone keyboard full of Korean characters.

sleep3

Most people are familiar with the concept of ‘dog years’, where one year for a dog is the equivalent of 7 years for a person.  In these parts, where Timothy is no longer restrained at night by the confines of a crib, we have what are called ‘Timothy hours’, which is the real world translation of the sleep you get when lying in the bed of our whirling dervish.

T w hat    sleep2

This is because Timothy often sleeps through the night in his own bed – an occurrence which we used to call ‘normal’ and which we now refer to as ‘heaven’.  But sometimes, T gets up in the middle of the night and makes the 12 foot trek to our bedroom, in which case Laura and I do a quick rock-paper-scissors to see who’s going to return him to his rightful bed.  Once back in his room I’ll lay down with him in his bed for a few minutes until he goes back to sleep, though sometimes a few minutes turns into a few hours.  And the sleep that I get in T’s small, not so supported bed is less than real sleep.  I would put the conversion rate of a ‘Timothy hours’ generously at 50%, meaning an hour in his bed is like 30 minutes in our own bed.  And it’s worse if that’s your second night in a row.

We need to get Timothy to stay in his bed more, or maybe I just need to get better at beating Laura in rock-paper-scissors.

Grateful,

The Lee’s

Posted in Doctor, happy ears, Sleep | Tagged , , , , | 1 Comment

Locked in a Fashion Emergency

Us 5 Best 2

Timothy made the leap from crib to big boy bed this weekend.  It’s a little later than usual to have him start sleeping in a bed, but our math went something like this – wait until he was climbing out of his crib, and then give it another year.  And here we are.

T in crib  T and bed 2

It’s hard to describe exactly what Timothy now sleeping in a bed will be like, but maybe picture the chaos that would ensue if a lion that had been in a cage at the Bronx Zoo for four years was suddenly allowed to roam free in Manhattan.  Actually make that two lions.  Let’s just say that the five day forecast calls for a lot of interrupted sleep for the adults of this house.

T asleep

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I talked with a friend after church last week, and we were joking about the challenges of getting Timothy to sit still for the hour long mass at the Basilica.  She was very complimentary of his behavior and said that she never heard a peep during the service.  I thanked her, but then politely informed her that T was almost never in church during that mass – that he spent 90% of the service running around the church basement and hallways with me – hence the reason that it seemed so quiet on the western front.

T on phone   T at his table

Speaking of quiet, recently it’s been even less quiet around the house, as Timothy has gotten into the habit of closing doors, sometimes loudly.  If he’s in his room and he wants to be alone, he’ll close the door.  It was all fun and games until he closed his closet door, and its 60 year old door handle stopped working.  No problem, except that the door handle was very hard to remove and that closet happens to contain all of his clothes.  Needless to say, it’ll take a few years for Timothy’s allowance to cover the $85 locksmith bill.

(note:  with below zero temperatures, the emergency locksmith asked if we were locked out of our house or this would be consider a ‘non-emergency’ situation, to which I should have told him that if Timothy realized that his threads were locked up, we’d have a four alarm fashion emergency on our hands).

T in sweater

In other tales of destruction, Timothy broke his first window.  It’s impressive that we’ve lasted 4 years without breaking some glass.  T was not hurt and it was no big deal until I popped my tire by backing the car over the broken glass and then slid on the ice into another car while driving to get the tire fixed.  We’ll just add the cost of the window/tire/car incident to his locksmith tab.  This kid’s going to be in college before he sees any allowance money.

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T in front of tree

We’ve talked about the fact that Timothy is still working on talking, but rest assured that wee TRBL has no problem getting his point across, as you can see in these pictures (sprawled out at the Apple Store, requesting that I ‘talk to the hand’, etc).

T on floor of Apple store  T reading 4

When he was playing with his animals and noticed that I was taking pictures, he immediately pointed for me to sit down in the chair and then went back to his animals.

T w5 ith animals 6 T w6 ith animals 9 T w7 ith animals 7

T w9 ith animals 10 T w10 ith animals 8 T w12 ith animals

One night, while Timothy was lying between Laura and me in our bed, Laura whispered that I should move Timothy into his crib, to which T popped off the pillow like a Jack in the box and yelled, ‘No Dada no.’

Breaking doors, smashing windows, talking back to his parents.  It just seems like the boy is ready for the freedom of a big boy bed.

God, please protect the rest of us.

Nervous, but still Grateful,

The Lee’s

Posted in Communication, Parenting lessons -- Don't try this at home, Sleep, Weather | Tagged , , | 4 Comments

Bath Toys and Uber too

 

airport 2It’s great to have Elisabeth back from college for the Holidays.  Timothy has loved having both sisters in the house.

xmas 3    t w susan

Timothy had a fun Christmas, and received his fair share of gifts and accolades.  He also enjoyed ‘liberating’ a few ornaments from our large, lopsided tree and the little figures from the toy manger scene.  The last I saw the baby Jesus, he looked like an Uber driver, in a plastic toy car with a donkey and one of the Wise Men.

 

xmas 2    xmas 5

Timothy is going through a ripping phase, tearing pages in some of his books (someone said that it’s a ‘tactile phase’ that he’s in, but it sure looks a lot like a ripping phase).  We’re working with him to rip fewer things, but Christmas was like hog heaven for this boy.  He got to rip and rip and rip the wrapping paper and at the end of that rainbow was a toy or book or stuffed animal.  What a good deal.

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T bday w god parents 11  T bday w god parents 12   T bday w god parents

Timothy is a reluctant entrant to the bathtub, but once he’s in the water, it’s hard to get him out.  He recently decided to use his little bath scoop to try to bail out the tub (onto the bathroom floor), which was cute for a minute.

He loves to play with his bath toys.  From ducks to penguins to whales, he has a small zoo of rubber bath toys.

He recently realized that these harmless looking bath toys could be turned into a squirt gun and aimed at his attending parent.  This was also cute for a minute.

T w11 ith animals 5

Speaking of bath toys, I remember when Timothy first ‘released’ his bath animals from their natural bathing habitat.  It seemed natural to him that if they were fun in the bath, they’d be even better on dry land.

But alas, there is a reason why these toys have the word ‘bath’ in their name.  Allowing Timothy to play with bath toys outside the tub is like letting him play with water balloons, the result of which is that our hardwood floors are dotted with little puddles of water (‘Umm, did someone pee on the floor?  Nevermind, it’s just the leaky rubber penguin’).

T sledding 5         T sledding 2

We took Timothy out for the first sledding trip of the season, along with his cousins, AJ and Griffin.  T looked adorable walking around in his little snow outfit, and he loved going down the hill.  He just didn’t love keeping his mittens on, which is what he’ll need to do if he wants his next trip to the hill to last more than 10 minutes.

T sledding 3      T sledding

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We think that Colon Tour 2015 T shirts are in order, as Timothy visited Rady Children’s Hospital in San Diego for two days over Thanksgiving in what I’m calling the West Coast swing of his tour.

We were out there to visit Laura’s sister, Mary Ann, who recently got re-married, and her awesome kids and cool new family, the Eibels.

t and Fritz

Like when we went to Children’s Hospital in Minneapolis in October, Timothy was having serious stomach pain, and once again it turned out to be an infection in his colon.

We’re big fans of Minneapolis Children’s, and we were very impressed with the staff in San Diego.  Everyone was very professional and easy to work with.

hospital hospital 4 hospital 2

We were pleased to get discharged from Rady’s on Thanksgiving Day, in time for some of us to eat turkey and stuffing with Mary Ann and her family.

The good news is that we’re learning more about this issue, and what symptoms to watch for.  And the advantage of having been in two good hospitals is that we’ve heard a few different perspectives on the issue and its possible causes.

hospital 3        T asleep 3

We still have more conversations to have with doctors, but more than likely it is a chronic colon issue that he/we will need to manage for awhile and possibly for his lifetime.

T mustache        T sledding 6

All in all, Timothy is doing great and we’re super grateful that we have the help of our amazing girls and a strong support network of family, friends, doctors, therapists and teachers who help us in so many ways our little redhead.  Thank you all!

We’re grateful for our many many blessings and wish you and your families and friends an awesome Holidays and New Year!

The Lee’s

Posted in Colon, Doctor | Tagged , , , , | 4 Comments

The Abominable Snowmonster

T on stoop2   T on stoop4

There is nothing more that Timothy loves than a good group hug.  When he’s leaving a gathering, our little rush chairman will often reach out to different people to circle up.

This is one of the cutest things he does, especially when he gives each person a kiss on the cheek (and then kisses himself on the hand).

But recently, he’s given it a little 3 Stooges twist and when it’s him and two other people, he likes to knock the two heads together and giggle.  Ours is probably the only house where there’s a fine line between a group hug and a head butt.

T in backpack 2  T on swing

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Timothy spent 2 days at Children’s Hospital recently with an infection in his colon.  Timothy was a champ, especially considering that the active kid was tethered to an IV for 36 hours.  As always, the nurses and doctors at Children’s were outstanding.  He has bounced back well — after two weeks of taking the worst tasting medicine on the planet.  The doctors believe that this is a continuation of his earlier colon condition called Hirschsprung’s disease, which is what led him to have surgery when he was 5 days old and to have a colostomy bag until he was six months old.  It means that the little guy’s plumbing isn’t working as well as it should and could be more susceptible to infection, which is not ideal, and so we’re working with doctors to better understand it.

T in hospital4  T in hospital2

Sometimes when Timothy is lying on his back getting his diaper changed, he just clasps his hands behind his head and smiles.  It’s his way of chilling out and saying ‘It’s okay, man, I’m not going anywhere.’  Even when he was in the hospital attached to the IV, the kid looked like he was relaxing in a hammock.

T watering bucket3  T watering bucket2  T watering bucket4

Last weekend, Timothy demonstrated his three approaches to raking leaves.

  • While I rake, he runs into the garage and gets a watering can and adds water to the pile of leaves. Then he quietly walks away.
  • He grabs a big handful of leaves. He hauls the leaves thirty feet to the north and drops the leaves on our neighbors’ driveway.  Then he quietly walks away.
  • He grabs three smaller handfuls of leaves and carefully places each handful into the big bag of leaves. He knocks over the whole bag, and the leaves come pouring out.  Then he walks quietly away.

What a big helper.

T w leaves3 T w leaves5  T w leaves2

 

We all know that everything is better when covered in yogurt.  I realized this in the 1970s, when someone found a way to get me to eat raisins by dipping them in yogurt.

That might have been on Timothy’s mind as we recently scrambled to clean up for an expected dinner guest.

As the Laura and I ran around the living room removing clutter with a combination of cleaning and slight of hand, Timothy sat in his high chair, quietly spreading vanilla yogurt over everything within reach, from his hands and face and hair to the eight Matchbox cars arrayed in front of him

Within a few minutes, the Abominable Snowmonster was rushed off for an unplanned bath.

 

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We are so saddened by the senseless tragedy in Paris last weekend.

It is my favorite city in the world by a good margin, and we have close relatives (including the family of Timothy’s namesake) and dear friends (including my Godson, Tristan, and his family) who live there.

And while it worries us a little that both of our two girls are considering studying overseas next year, we really believe that education and building mutual understanding is critical to improving so many of the issues we’re seeing in our own country as well as around the world.

We are keeping our friends and relatives and all of the Paris victims in our prayers.

Grateful,

The Lees

Posted in Doctor, Eating, Parenting lessons -- Don't try this at home | Tagged , , , , , , | 1 Comment

Timothy and the Ten Pins

T in wagon 8T in wagon 10T in wagon 3T in wagon 7

At the birthday party of a classmate, Timothy was enjoying knocking over the bowling pins that were set up on the floor of the gym.  I would set them up and Timothy would immediately knock the pins over.

Fast forward to later that day when I carried Timothy into a liquor store (T knows just which wine to drink with different entrees).  I was talking with the owner, holding Timothy and standing next to a display of Skyy vodka.  Timothy realized that the blue bottles on display were just a prettier version of the bowling pin game that we’d been playing earlier that day, and so he took a swipe at the bottles.  Chaos ensued, and I stretched to save a few bottles and fortunately an alert store employee caught the rest of the dominoes.

hOMECOMING 3

Fresh on the heels of that near miss, Timothy received a large religious snow globe at one of his birthday celebrations.  It was a gift from the family of one of his Godparents, and inside the globe was a little religious statue.

But that snow globe never really got a chance to be part of the family, as the next morning, Timothy took out a broom and cleared everything off the dining room table, and that snow globe never saw it coming – hitting the floor and shattering into a thousand pieces.

It’s hard to say whether these two glass incidents mean that Timothy is getting more destructive or is just improving his aim.

T on shoulders     t on trike 2___________________________________

Awhile back, Timothy learned to put his pointer finger in the air to signal the number ‘one’.  Not long after learning ‘one’, he realized that if he was asking for one of something (one last cookie, etc), he might as well put up a second finger and try to get a second one.

So when we tell him that he gets ‘one’ more video, he immediately puts up a second finger and cocks his head cutely to the side and appeals for a double.

And not just with our family.

T was visiting his ‘extra’ set of grandparents, our neighbors Jim and Peggy.  Timothy was asking for a cracker and Peggy put her pointer finger up to signal to him that he could have one cracker.

Timothy shook his head, walked up to Peggy, grabbed her hand, and lifted up a second finger so that she was showing two fingers instead of just one.

Whether or not he can speak, the kid is finding ways to get his point across.

 

t w teacher and l        T with gnome

In addition to his other talents, Timothy is quite a mediator.  Catherine and I were engaged in a healthy father-daughter exchange of ideas when Timothy rounded the corner slowly, hopping curiously up and down.  We looked down to find that both of his legs were squeezed into the same pant leg of his shorts.    Catherine and I burst out giggling and agreed to a cease fire.  I then helped Timothy reroute his legs into their own proper pants leg — which was probably appropriate since I had been his tailor for the earlier errant fitting.

t, c and l watching downton

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Team TRBL The walk 2

We raised money today for the Down Syndrome Association of MN (Laura is a board member) by walking in Como Park in St Paul.  It was a beautiful day and there were several thousand other walkers, many of whom had made funny shirts (‘Keep Calm and Carry On – it’s just an extra chromosome’) to show their support for a friend or loved one with Down syndrome.

All 20 of us were wearing our blue ‘Team TRBL’ shirts, anchored by Catherine and a dozen of her friends walking with us.

T asleep      On the drive home, Laura and I were exhausted and ready for a nap, and Timothy looked sure to fall asleep in the car.  When I looked toward the back seat, he was awake, but seemed ready to doze off, and then he started smiling and very quietly saying ‘Dada’.  And then he quietly said ‘Baba’ (mom).  It was adorable.

He then said ‘Dada’ and ‘Baba’ again, but a little louder.  And then again, louder.  And by the time he lapped the track for the fourth or fifth time, he was shouting out our names and it was getting slightly less endearing and slightly more clear that this boy was not going to fall asleep.  Oh well.  It was still pretty cute.

But we had a great time at the walk, and we want to thank our donors and all of the members of Team TRBL!

Grateful (if slightly tired),

The Lee’s

Posted in Down syndrome, Sleep | Tagged , , , | 3 Comments

Was that Timothy who just ran past the window?

1 - smiling    b day 2

Timothy turned 4 years old last weekend, which he continues to celebrate with a series of tasteful celebrations.

2 -- t cakeb day cake b day

We all enjoyed a trip to Indianapolis to celebrate the wedding of Laura’s sister, Mary Ann and her fiancé Fritz, which added a few more fun cousins to Timothy’s family tree.

c --The Boyz

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Last Friday morning, we were reminded once again of the age gap of our kids (19 years old, 17, and …….………… 4).

After spending fifteen minutes helping clean up Timothy’s very messy diaper, I walked outside before work and spent another fifteen minutes starting to clean up our very messy front yard, whose trees were covered in toilet paper after our house was teepee’d to congratulate our daughter Catherine for making the varsity soccer team (congrats, Cat!).

Teepee'd 2      Teepee'd

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Timothy has a good arm.  When handed a ball, he immediately throws it.  Last week, he threw Catherine’s iPhone into the bathtub (amazingly, it still works).  And recently, he’s been throwing his little toy cars into the plants next to our patio, which means that in the Fall, when most people are looking through their gardens to harvest red and green peppers, we’ll be looking through the hosta plants behind our house to harvest red and green Matchbox cars and trucks.

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pickle ball  T on swing

Laura and I were talking in our bedroom last week, and I looked out the window and saw something going past.

-Me: ‘Was that Timothy who just ran past the window?’

-L: ‘No, he should be in his room.’

-Me: ‘Well, a short red flash just went past our window.’

(whether considerate or sneaky, the flash remembered to shut the screen door behind him when he went outside)

After seeing Timothy glide past our window, we decided that it might be a good time to better secure the sliding glass door (what 4 year old has his own sliding glass door in his bedroom?  One whose parents did not expect to be converting the family ‘office’ into a fourth bedroom.)

music class    chalk 5 chalk 2

Anyway, I put a tougher lock on the sliding glass door, and used a black Sharpie to make a little sign to remind the taller family members that we’ll need to unlock the door twice.  I put the sign on the door and then walked back into the living room to find a black Sharpie cap without its pen.

Now, on its own, a lonely black Sharpie cap is no big deal.  But if the other person in the room is under the age of five, then it’s like finding a grenade without a pin.  You’d better find that pen, and fast.

In my case, the artist formerly known as TRBL had had enough time with the Sharpie to draw a map of Florida and some of the Florida Keys on our hardwood floor.

sharpie 3 sharpie  Sharpie 4

Fortunately, I grabbed the pen before he was able to complete Key West.

______________________________________

It’s important for us to keep Timothy’s speech issues in perspective.

We have friends who are unfortunately in serious battles against deadly diseases.

Timothy’s speech delays are a challenge, but are not even close to that level of gravity.  Not even close.

At the same time, this is a real fight for us and we would be unwise to take it lightly.

Apraxia of speech is condition where the brain seems to be fine and the mouth seems to be fine, but the connection between the two is not working, and so the person has trouble speaking words.  It’s a really stubborn condition that requires a lot of work and focus to overcome (and some people never really overcome it), and it’s a much tougher fight when the Apraxia is paired with a disability like Down syndrome.

When talking about Timothy’s speech challenges, a friend asked me ‘are you scared?’ (about the possibility that Timothy may not ever really speak).

First of all, I’m confident that we’ll make progress and that he’ll communicate well.

But the reality is that we thought he’d be speaking well before now, and we don’t know what will happen, and so yes, that is scary.

But we’re Irish, and so we like a good fight.

And as a redhead, Timothy doesn’t give up and has more fight — some would say ‘piss and vinegar’ — than your average bear.

t orange  T at playground

T tongue  GREAT T eating w glasses -- 1-15

And I love the words of Nelson Mandela, who said, “May your choices reflect your hopes, not your fears.”

Our fears may be with us for awhile, but we’ll focus on our hopes for the bright future of one of the world’s newest four year olds.

We just need the little redhead to be as tough on the Apraxia as he is on our hardwood floors.

Grateful and Four,

The Lee’s

Posted in Communication, Down syndrome, Parenting lessons -- Don't try this at home | Tagged , , , , , , , , | 3 Comments

Dancing Zeus meets the monster

T in cowboy hat  According to Greek mythology, Zeus used to throw thunderbolts down to earth.

I thought about that when we had a loud thunderstorm a few nights ago.

In the summer, our daughters usually sleep in the basement room right below our bedroom, because it’s cooler downstairs.

T with rocks 3  T with rocks 2  T on shoulders 2

Maybe Timothy was disappointed that his sisters had likely missed the loud claps of thunder while snuggled in their basement abode. But the next morning he was in our bed at 7am when he started dropping his toy cars, one by one, behind our bed.

As each Matchbox car hit the hardwood floor, it made a loud sound in our room, and I can only imagine the resounding ‘boom’ that the girls heard down in their bedroom below. Probably sounded like a thunderstorm (or like an energetic little brother just trying to wake them up).

It was sweet of our little red headed Zeus to recreate the drama for his sisters.

T at slide 8T at slide 5T at slide 3T at slide 2 Speaking of drama, in any good horror movie, there is a climactic moment at the end of the film where the heroes have finally dispensed with the monster, and look at one another, exhausted but relieved at their victory.  Happy music begins to swell in the background…. but all at once the picture of calm is shattered as the monster suddenly appears to once again menace the heroes.

T dance 2T dance 5T dance 7T dance 8 Now, I would never call Timothy a ‘monster’ and I certainly don’t believe he’s seen many scary movies, but he knows the script…

It was a dark and stormy night at a Hampton Inn in Connecticut in April, where we were staying as part of a college visit for Catherine.  Timothy was not going to sleep easily.  So Laura took on the task of lying down with him while Catherine and I huddled together in the bathroom watching on my iPhone as Notre Dame lost at the last second to Kentucky in the NCAA basketball tournament (I told you that this was a scary story).

After an hour, the bathroom door cracked open and an exhausted Laura snuck in to take refuge, having succeeded in her quest.  We hugged and high fived her, as she breathlessly explained that Timothy was now safely asleep in his portable crib, secured by the forbidding three foot high, reinforced nylon crib walls that he had never been able to scale.  We were safe.  Our long Connecticut nightmare was finally over.

At that moment, I realized that I needed to get something from the other room, and so I quietly opened the bathroom door, but turned back toward the bathroom to whisper something to Laura.

Suddenly, I froze as I felt something touch the back of my leg and then heard those chilling words —  ‘Da da’.

He was back.

T dance 12T dance 10T dance 16T dance 17 Whether he’s throwing thunderbolts at his sisters, escaping a porta-crib to scare his Dad, or dancing with his refection in the mirror, this boy certainly has a flair for the dramatic.

Grateful,

The Lees

Posted in Sleep | Tagged , , , | 6 Comments

Every day is kids’ day

GREAT  t w Cat 8 -- 1-15  Last Sunday, on the morning of Father’s Day, Timothy had a very dirty diaper and lived up to my last blog entry by bringing his hands in to help with the diaper clean up.  That diaper was so dirty that we decided to put him in the bath for a final clean off.  He was in a great mood exiting from his short bath, and our naked red head walked into his room and motioned to me to take a seat in the rocking chair and replied with an enthusiastic ‘yesssssss’ when asked if he wanted to read some books.  We read some of his little books and he was being quite the charmer, and then he gently grabbed my right arm, brought it up and bit down hard on my pointer finger like it was a hot dog at the ball park.

t in sweater 3  with glasses 1-15

I quickly set him down on the floor, said ‘no bite’ and walked out of the room to show Laura the revised version of my right pointer.

When we walked back into Timothy’s room 30 seconds later, he had already found a way to top the bite by peeing on the floor of his room.

What’s more, he had positioned himself so that he peed only on his red shag carpet and missed the hardwood floor entirely.  Impressive.

t at comm center  4  -- 1-15   t at comm center -- 1-15

Long ago, when I was a little kid myself, I asked my mom why there was a Mother’s Day and a Father’s Day, but there was no ‘Kids’ Day’, to which my mom didn’t miss a beat, replying, ‘Every day is Kids’ Day’.

Happy Kids’ Day, Timothy.

The Lee’s

Posted in Teething | Tagged , | 1 Comment