Small World

In April of 2010, at 11 weeks of pregnancy I had my blood screened. It's a standard screening for pregnant women over the age of 30, and usually comes out completely normal. Needless to say, I was more than stunned when my doctor called to tell me that the screening, combined with the results of the nuchal translucency revealed a 1 in 10 chance of my baby having Down syndrome. What?!

That night, Sean took me to meet his best childhood friend's younger sister, Meaghan. At 26 years old, this young woman with Down syndrome was funny, charming, disarming and down right fun to be around. Her mom, Eileen, was so supportive and kind to me that night (and the weeks that followed). Among the many things she explained to me was that Down syndrome manifests on a spectrum of severity (kinda like autism, I think). Some people, like Meaghan, are high functioning. They go to public schools, they participate in extracurricular activities including sports, they hold jobs and some live independently as adults. Other people may need a bit more intervention as adults, and some are essentially nonverbal. Eileen mentioned that one of Meaghan's friends named Cliff was not as verbal as she.

Fast forward more than two years.

Today Max and I went to CVS to pick up his prescription for omeprazole (Prilosec). At 19 months of age Max's reflux is almost as bad as it was as an infant! Anyhow, waiting in the pharmacy line I noticed a young man ahead of me with Down syndrome. When his mother was finished with her transaction she tapped him on the shoulder saying, "Let's go honey." As they passed she stopped to gush over Max who was sleepily sucking on his binky in the seat of the shopping cart. I could tell that she knew Max had Down syndrome too. When she left I felt badly that I didn't try to make more of a connection with her. I should've gotten her name or something! Oh well, I thought. Next time.

And then as Max and I were leaving the store, the women jogged up to us. "I'm sorry, you probably think I'm crazy, but does your husband work at the furniture store?" "Yes!" I said, and I didn't think she was crazy at all. I was so happy she'd made the effort. Apparently she'd been shopping for furniture at some point with her son, and Sean, being the proud father that he is, showed her some pictures of our beautiful boy. We are a select few families, so she made the connection quickly when she us today. In a short, very friendly conversation ending with hopes to meet again in the future I got her name. It's Celia, and her son's name is Cliff.

Oh, hello, Cliff. It's very nice to meet you. :)

First Three Days of Summer!

There are many great things about being a teacher, but I think most people would agree that the best part is getting the whole summer off.  Max and I haven't wasted one second of our first three days.

Monday

Happy morning. Lots of play in pajamas before Lisa, his physical therapist, arrived. Max has adopted a new gesture to signify excitement. Check out the hands:

What you can't see is the toothy grin on the other side. Music usually does it.

Tuesday

We expected sun, but didn't get any so Max got to spend some quality time with Baby Einstein.

Then on to an art project. Max isn't really into them much...yet. But he loves monkeys so we couldn't pass this one up.

Finally, super hero time! Max did an excellent job fighting off his arch rival--a metal Patriots garbage can.

Wednesday

Crazy hot!! One of those days in which sweat runs down the back while just standing still. Luckily, Max had his first Early Intervention play group of the summer so we got to spend the morning in some conditioned air. After a Max-and-Mommy date for lunch (we had french toast and scrambled eggs at the local diner) Max cooled off in the little pool that Grammy got for him.

He sure loves the water!

Here's to 70 more days of summer!

A side note about swimming:

I have no memory of not being able to swim. Max has Down syndrome and with that comes significantly low muscle tone. We see it every day. I mean, Max is 19 months old and his preferred mode of transportation is combat crawling, but that doesn't mean he can't swim. Sean takes him to pool therapy once a week, and I make sure he gets his face wet every bath. If we keep it up, Max won't have a memory of not being able to swim either. After all, it's really a matter of life or death.

Down Syndrome Clinic

I'm not originally from Massachusetts. I moved here 11 years ago to be near my parents who had relocated from upstate New York while I was studying and working in Colorado. I like to be near family, so I stayed.

And every day since Max was born I am so thankful that I did.

You see, Down syndrome brings with it a host of medical complications, and Boston has amazing medical facilities. One of the coolest medical resources the Down syndrome community in Massachusetts has is the Down Syndrome Clinic at Children's Hospital Boston. (Or rather, Boston Children's Hospital as it was recently rechristened. I know, not very original, but what's in a name?) It's headed up by this magnificent woman, Angela, who has reached near celebrity status among all of us lucky families. To give you an idea of how fantastic and how thorough the program is, here's a play-by-play description of mine and Max's day yesterday.

4:30 am: Wake up, get dressed, and spend extra time on my hair and makeup (gotta look good!). (Yeah, 4:30 is a bit excessive, but that's my normal wake-up time for work, so what's the difference?)

5:30 am: Head to the kitchen to pack breakfast, lunches and snacks for Max and I.

6:00 am: Pack the diaper bag with all the essentials including a few toys and books to keep my boy occupied.

6:20 am: Wake Max. Drink some milk. Have a bath (or rather, splash Mommy and drop all the dripping nesting cups on the floor). Get dressed.

7:10 am: Hop in the car.

9:10 am: Arrive at the hospital's parking garage. It took 2 hours to drive 50 miles.

9:15 am: Check in on the 10th floor in the Developmental Science Center (15 minutes late).

9:20 am: Meet with the dentist. Max HATES the dentist. If you haven't ever taken a toddler to the dentist, this is how you do it. 1) Place toddler on parent's lap, facing parent. 2) Sit, facing dentist (who is also seated), knee to knee. 3)Lay toddler's head in dentist's lap. 4) Allow dentist to poke around in toddler's mouth. 5) Sit helplessly while toddler screams for the duration of the exam.

Outcome: Max has great teeth.

9:45 am: Meet with the nutritionist. Less eventful, but quite informative.

Outcome: Continue to share our meals with Max, hoping he'll eventually like them.

10:00 am: Meet with the physical therapist. I loved this one. After two hours in his car seat, and another being held by me, Max was thrilled to move around. He literally did laps (on his belly) across the room for ten minutes to burn off some of that energy and frustration. Then another 10 minutes playing peek-a-boo behind the hospital curtain. And finally, a very well executed display of his formidable standing and cruising skills. 

Outcome: PT believes Max will be walking soon. (How soon is soon?)

45 minuted break in the waiting room for crawling, eating, drinking and mingling with the several other families there. Ava's a beautiful 2-year-old with platinum hair. Her mom is creating a database of all of the families in Massachusetts like ours. We are a small community--we have to stick together! Jack, also 2, is quite a climber. He enjoyed showing off his confident walk, and all the words he's practiced with his mom.

There was also a couple (Dad was Todd, but I can't remember mom's name) with a tiny 3-week-old boy named Justin. In addition to his Down syndrome, Justin was born with a complete AV canal defect (congenital heart defect), just like Max. They reminded me so much of Sean and I at Max's birth. Dad, wide-eyed and talkative. Mom, exhausted and overwhelmed. Both of them very much in love with their son. I gave them my phone number. Sometimes it's nice to talk to someone who has already gone through it. I hope they call.

11:30 am: See the pediatrician. Dr. Davidson is wonderful. She's gentle, soft-spoken, kind, and above all, very knowledgeable. For most of the visit we discussed Max's health and his care. She answered a number of questions I've had, and showed me some terrific resources online. I'll share those another day.

Outcome: Max looks great. Keep doing what we're doing.

12:30 am: Head back to the car. Immediately fall asleep.

First, the binky falls out of the mouth.

Next, a mild head tilt.

Finally, complete head slump.

 90 minutes through heavy traffic and we finally make it home. I don't have the heart to wake him so we drive for another 30 minutes until Max's eyelids begin to flutter.

Our next visit to the Down Syndrome Clinic is on February 7, 2013. Can't wait!

(If you live in or near Massachusetts and would like to contact the Down Syndrome Clinic, let me know. I'll put you in touch.)

 

Separation Anxiety

There are quite a few perks to being grown up. One of them is understanding that when a loved one leaves the room, they're not abandoning us. In fact, it's likely a fundamental piece of maintaining stable and healthy relationships.

Max doesn't know this yet. The interesting thing is that until recently, abandonment was the last thing on Max's mind. We could come and go and at most Max might holler to show his disappointment, but then he'd just belly crawl right after us. "Don't think you can get away that quickly, Mom!" This weekend, though, things changed.

In my previous post I talked about Max's play date. If you remember, I mentioned Max's anxiety every time I stepped out of the room. He literally began to cry every time. I'd never seen that before. I assumed it was a function of his apparent fatigue, coupled with a new playmate. Then last night, our whole family went over our friends' house to meet there their brand new baby boy. (What a beauty with strawberry hair! I forgot how tiny the new ones are!) His older sister is a month younger than Max, and someone Max has played with (or rather, beside) several times. But like the day before, every time I stepped away Max began to cry. He was irritable for much of the night, so I assumed that he was simply a little bit off. But then we got home, and as soon as he sat down with his "Mr. Wiggles," as Sean calls it, Max was all smiles.

I guess this is our new phase.

Play Date

Ah, the play date. That sacred time when baby is occupied and mom gets to have a conversation with a grown up. Max and I rarely pass up a play date. During our first few, Max played on the floor right next to his little friend, completely oblivious to his or her presence. Now, though, it's a whole new game. Max, the perpetual charmer, chats and smiles and give's high-fives. I love it!

Today's play date was special. Max got the rare opportunity to play with another handsome little boy with Down syndrome, which meant that I got to chat for 2 whole hours with another mom who...well, who gets it. I have to admit, though, at first it looked a little iffy. Both boys seemed nervous and uncomfortable. Max demonstrated a rare moment of separation anxiety while I installed a gate (or tried to install a gate--a virtually impossible task in a house without 90 degree angles). It looked like our little date might be a bust, and then in a flash of genius, I suggested a snack. There is nothing like sharing a meal together. And it worked! A few dips into the snack bowl, and the boys were as happy as could be. And that left us moms time to chat.

Can't wait to do it again.

PS--Photos would be an awesome addition to this post, I know, but it just wasn't in the cards today. There will be future photos, however, so keep checking!

Beefcake

That's what Sean calls our little man when he's showing off his shapely arms:

Notice the definition. Any bodybuilder would be green (ha ha) with envy. And the redneck overalls bring the whole look together. Move over Brad Pitt, you've got some serious competition!

This was taken on the last day of our weekend visit to Sean's parents' house. What a terrifically relaxing couple of days we had. The weather in New England was dreary and wet--very uncharacteristic for June--so we slept and read and watched movies. In between naps Max played like a champ. As you can see, his little dog, Scout, is never far away. See how much Max loves him:

How could anyone not fall head over heels for that boy!