Monday, August 27, 2012

The Last Night

I'm working through motherhood. Hmmm...I think that  double meaning is intentional. At this moment in our lives, we cannot live in Massachusetts and sustain our lifestyle and plan for the future on Sean's income alone.  Entering my second year, I still don't know how I feel about it. Dozens of conflicting feelings boil and bubble in my gut. At times, I feel empowered, fulfilled, progressive. At other times I feel sad, slighted, even weak.

Last year was hard. I woke up at 4:30 am every weekday to drive almost 35 miles arriving at working by 6:00 am. I prepped my classes until 7:20 when the school day began, and kept my nose to the grindstone until 2:00 pm when the students left. One more hour of prep time allowed me to leave at 3:00 pm to pick up Max before 4:00. Dinner around 5:30 pm followed by floor play and books, a quick bath and a bottle. Max was in bed at 8:00.

No time to relax. Had to clean up the dishes in the kitchen and the toys in the living room. Lunches for me and Max had to be made. Perhaps a little bit of computer time, a quick scrub of the bathroom or a pass of the vacuum.

I was often in bed but not asleep when Sean arrived home at 10:00. We didn't see much of each other because he also worked weekends so a precious hour or two before sleep was worth the fatigue the next morning. This year looks to be marginally better in that respect, but we still won't have weekends together.

As a result, we parent fairly separately. Communication happens through notes on the counter, text messages and short phone calls. We have to make special efforts to see each other. Thank God for the summer.

I have high hopes that this year will be a little easier, not because our schedules are better--they're not--but because we are used to it. As much as I wish that Sean and I could be Max's sole caretakers, I do think that daycare is good for him. I have to believe that seeing all those other children moving around and doing things he has not yet mastered serves as strong motivation. His teachers are wonderful and the center is very accommodating. Max is clearly a favorite there.

But I wonder if Max misses out on anything because he isn't with one of us all day every day. I'm sure there are many working mothers who wonder the same thing. Am I depriving my child of the best possible upbringing he could have? Or will he be better adjusted than some of his peers because he has been spending time with others since he was nine months old? I have to hope so. I have to believe that we are doing the right thing. We would never knowingly do anything to Max that would compromise his well-being.

I think stay-at-home mothers are lucky. I envy those mothers who are plugged into a network of other mothers. It's sort of a built-in community. As a working mother I feel excluded from that life. I feel it most in the summer when I am home with Max. People say that it gets a little easier when the kids get to school because parents meet each other through their kids. While a don't want to rush Max through this beautiful time of discovery and learning, I am looking forward to his school days and the opportunities it will offer to both of us.

I know you wanted to see pictures of Max. I've got many, but today, on this last night of summer, I needed to unburden myself of these thoughts. This is my public diary entry. If you've gotten this far, I thank you for reading it. Maybe it will help me sleep better tonight that I have for the last few. A purging of sad thoughts and a good cry can do that.

Thursday, August 23, 2012

Fun with Friends

Recently I wrote about feeling like a bit of an outsider in my town, and that awkward, uncomfortable feeling that comes when a stranger finds out that Max isn't quite like her little one.

Well, in the last seven days Max and I have reconnected with great friends whose lives have finally calmed a bit after welcoming a new baby into their lives and a moving into a new house.

Calvin lounging.
 That little guy's older sister was born one month after Max.

Carah mesmerized by cartoons.
This red-headed beauty can jump, and climb, and run, and even has a few words. So where is that twinge of discomfort when she literally runs circles around Max as they both giggle?

"Cooking" together a few days earlier.
Nowhere. It never existed. You see, her mom, Cait, and I were pregnant together. We shared our joys, our concerns, our frustrations. She also knew early on that Max would be born with Down syndrome. Sean and I were very forthcoming about Max's diagnosis with everybody, so when Max was born there was no shock. Our friends and family were already prepared. There was no discomfort, just excitement, support and love

Now, Cait just sees Max as Max. He's not that little boy at the park who's not quite like everyone else. He Carah's friend, and that's all. It's terrific. There are no awkward explanations, uncomfortable silences, or feeling the need to sneak out a little early.

And that's all I really want. Look at that little boy. And look at that little girl. They're not so different, don't you think? I mean, come on, they even have (almost) the same color hair!

Thank you, friends.

Tuesday, August 21, 2012

Max is...

One of the things I enjoy about summer, apart from the sunshine, the flowers, my vegetable garden, long walks, the beach, and every other wonderful diversion that summer has to offer, is that I get to start my mornings with one of a plethora of morning talk shows. I tend to gravitate toward Today, especially the fourth hour with Hoda and Kathie Lee. It's light-hearted banter allows me to pay attention with half an ear while I putter around the house or play with Max.

Last Friday morning was no exception, and as Max and I were sprawled on the floor putting together the same shapes puzzle over, and over, and over again (he's actually quite good at it) I half-listened to an interview with Kelsey Grammer about his current television program (sounded rather interesting, actually). It wasn't until Hoda or Kathie Lee, I can't remember which, asked about his new daughter--I think she's about two months old--that I really plugged in. I'm a sucker for baby stories!

Most people describe their little ones as cute, funny, active, stubborn, or any number of other  basic, rather meaningless adjectives. I'm no exception. But Kelsey Grammer didn't do that. He said she was kind. Kind? Wow. How could he possibly know that? Then over the weekend I thought a lot about Max in that way, and realized that any parent, all parents, KNOW things about their children that others do not. It's instinctive. It goes with the territory.

So here is my list of adjectives to describe Max, both the basic and the deep. Sean helped.
  • Funny
  • Stubborn
  • Intuitive
  • Kind
  • Empathetic
  • Strong
  • Driven
  • Busy
  • Playful
  • Curious
  • Happy
  • Trusting
  • Extroverted
  • Affectionate
  • Adventuresome
  • Silly
  • Persistent
  • Hungry
  • Easy-going
  • Loving
How would you describe your kids?

Enjoy these pics. I think you might even catch glimpses of some of those adjectives.

Hey, what's this?



 And don't forget...peek-a-boo!

Wednesday, August 15, 2012

Max can walk!!...sort of.

Imagine your grandmother's walker, but in miniature and with wheels. Now turn it around and place a toddler between the handle bars. Step back and give him room!

Today we met Lisa, Max's physical therapist, at Target for a marathon walking practice. The bright lights and wide isles are perfect for a meandering beginning walker. Not to mention, Target has proven itself inclusive of all children, so I thought it was a fitting setting.

Max found the sight of his own feet moving quite thrilling. Lisa kept yelling, "Max, look where you're going!" Here's one of the few times he did:

Our marathon session lasted about 40 minutes with a five minute break for masks in the middle.

 As Max got tired his strong start eventually morphed into hollering, sitting down and occasional tears. Can you blame him? Who likes to work? Thankfully, Lisa doesn't doesn't put up with lazy, and and she successfully coaxed an unwilling Max to the finish line. The cheers and encouragement from his admiring audience certainly didn't hurt.

And into the arms of an exceedingly proud mommy! With every child's question, "What is that Mommy?" or "What's he doing, Mommy?", I thought to myself, "That's my boy! See, World, how fantastic he is? How could anyone not love a boy like him?" I felt like a peacock showing off my colors.

It was truly exhilarating. So much so, in fact, that I joined Max in his afternoon nap!

A quick word about Max's walker:
     About six weeks ago I told Lisa that I really needed Max to walk. He weighs almost 27 pounds (and has since his first birthday), and through picking him up and carrying him all over I have developed tendonitis in my elbows (also known as carpal tunnel syndrome). At it's worst, the pain radiates from my elbows all the way to my fingers and makes it difficult, if not impossible, to grasp heavy objects.
     At Max's recent evaluation Lisa gave us the walker. She recommended that we gradually incorporate it into his routine. As of today, Max uses his walker during transitions--to the kitchen for lunch, or to the playroom for puzzles. He doesn't use it to move around the room in search of toys or other diversions.
     It doesn't roll backwards so it helps to keep him upright. The only potential danger is a face plant, which he has done a few times. But live and learn, right? Now when he falls forward he lifts his head so he doesn't smack his face. Good boy!

Check out these other walking pics from a previous excursion with Daddy:


Tuesday, August 14, 2012

Temporary Struggles

I'm struggling today. Most of the time, having a child with Down syndrome feels completely "normal." Well, for me, it is normal. It's all I know. I don't have any other children, so I'm not plugged into the mommy community. Being a working mother (except during the summers), working far from home, and living in a town where I know virtually nobody means that we don't come into close contact with people who don't already know Max. Even at the playground, conversations with other mothers rarely happen spontaneously. Massachusetts is not known for friendliness.

The playground is actually where this little story begins.  Tuesdays at 3:00 in the summer means an hour with Jennie, Max's developmental specialist. I had our day all planned so that Max would be well-rested, well-fed and happy when she came, but around 2:00 Jennie sent a text reminding me that our hour is rescheduled for Thursday morning. Bummer. What do we do now? The park!

We don't live very close to the park--we don't live very close to anything--so whenever we go there we have to drive. So I gathered up Max and headed out the door attempting to dampen that spark of hope that burns deep in my gut, the hope that the playground will connect me to another mother in my own town.

There weren't many people there today. Just two mothers, each with one small child, and one left soon after we arrived.

Max doesn't like the park much, probably because he doesn't walk yet. Frankly, I don't blame him. But, following our routine, we went to the swings first. Max seems to like them the best.

After about five minutes he started reaching for me, signaling his loss of interest. From there we headed to the sand box--more of a dirt box--but Max likes to watch the particles fall through his fingers. "Like," however, is relative. He likes it more than he hates it, but as you can see in this photo of a previous playground excursion he is a little less than enthused.

Seriously, Mom. You call this fun?
Now back to the other park-goers. By now there is only one other mother-and-child pair besides Max and me. Uncharacteristically for this park (or maybe any park in MA), "other mother" is friendly and asks me Max's age. "21 months," I say, and I see momentary confusion pass across her face. "How old is your son?" He's a super-cute toe-head who's walking and climbing all over the place, and looks like he about as big as Max.

"15 months," she says.

Feeling a little dejected I say, "Wow, he really gets around."

"Yeah, he sure does. At 11 months he just wanted to get up and go!"

"Max is taking his time."

"Yeah." And there it is. One word says it all. This seemingly lovely woman doesn't know how to handle the situation. And the funny thing is, I don't either. Do I tell her he has Down syndrome and risk making her even more uncomfortable? Do I act like it's not even an issue when it clearly is? (Evidence = it's awkward)

I've never been good at awkward. (I mean, who is? Being good at awkward would paradoxically make it no longer awkward.) And as explained above, I'm a little socially isolated in my little town  here. I don't have a safety net of friends like my husband or Kelle Hampton do. I'm a fish out of water, with a child who has Down syndrome, and nobody less than 30 minutes away to lean on.

So, since Max is showing obvious signs of boredom, I make our excuses and we leave.

What would you have done? I'd really like to know.

Check out this letter. It explains a bit my fears and concerns. Bravo!

Saturday, August 11, 2012

Needless Anxiety

Palms sweaty, heart racing, breath short, and self-doubt. Sound familiar? Anxiety. It can be helpful. Just a little bit before a big presentation or performance and you're good to go. Too much of it, and it clouds your judgment, brings you to false conclusions, and just overall sucks.

A little background:
At 14 months, Max's therapists scheduled an evaluation. We had two choices, one more detailed than the other. Always hungry for more information, Sean and I requested the more detailed one, which they called, "The Michigan."

So what's the Michigan?
Through a series of little tests, or performance indicators, The Michigan determines the developmental age of a child in a number of areas including: cognition, fine and gross motor skills, and language (both receptive and productive). Jennie, Max's developmental specialist, warned me (not Sean; he's not emotional like me) that some parents find these results upsetting and choose the less detailed evaluation in its place. But I thought, "Jeez. I'm a strong woman, and I already know  that Max is delayed. I'll be fine."

Boy was I wrong. As Jennie and Rebecca (Max's speech pathologist) explained the results, tears poured down my cheeks.

Max's 14-month results were:
Cognition: 9 months
Receptive speech: 11 months
Productive speech: 10 months
Fine and gross motor: 7 months

It was those 7-month results that really got to me. It was obvious that Max was delayed. I mean, except for rolling, he wasn't even mobile yet. But, I felt terrible.

Fast forward six months.
A few weeks ago, when Jennie said it was time for another evaluation I was anxious. Once again we had two choices, but I couldn't decide. Finally Sean came to my rescue and chose The Michigan again.

When the dreaded day came you can't imagine the anxiety I felt. The evaluation took about 2 hours, and watching Max helped to calm me some. He was doing so well. Even so, I was prepared for the worst, but it turns out, I had nothing to worry about.

Max's 20-month results:
Cognition: 18 months
Receptive speech: 14 months
Productive speech: 12 months
Gross motor: 10 months
Fine motor: 17 months

Cognition at 18 months? He has Down syndrome--how is that possible? I'm not questioning it, just happily accepting it, and we're doing everything in our power to nurture it. In the next weeks I'll be writing about some these efforts. I hope you find them interesting.

Monday, August 6, 2012

Scratching the Surface

With the exception of Thursday's rather short, and photo-less post, I've been remiss in my efforts to keep you, my faithful readers, up to date. In my own defense, life has been...eventful. Let's see, a two week visit from my brother and wife, Max's eight-day fever, two nasty stomach bugs, a one-week curriculum workshop, and the passing of my grandfather. It's been busy, but I'm feeling renewed energy and inspiration. Being on vacation doesn't hurt! I have several ideas for posts that I plan to publish in the days ahead.

Sports are a way of life in my household. You can't live in the same house as my husband, Sean, and not be affected. Fanasty football drafts; Celtics, Red Sox and Patriots games; multiple sports commentator programs; and now hours and hours of DVR'd Olympic competitions--the testosterone level is high. I've learned more about beach volleyball in the last week than a girl from the northeast could ever need. So it's no surprise that when Sean's boss gave us tickets to the New England Patriots Training Camp last week we were there.

A friendly fan offered to take this pic. Max doesn't seem too thrilled! Actually, he had a great time hollering and clapping right along with the crowd.
Cool view, huh?
As exciting as the practice was to watch (getting a look at Tom Brady is pretty exciting too), there was something even more exciting to experience. It's gonna require a little background info.

A few months back, Sean attended a fund raiser for work. I don't really know the details, but there was a young man there, probably in his early twenties, named Bobby. Bobby has Down syndrome.  Sean, an extrovert, got talking to his mother, Elena, and they swapped contact information.

Somehow (probably using that contact information) Sean knew that Elena and Bobby were also going to the Training Camp and arranged for us to meet. What an experience!

Elena is exuberant and larger than life. Her passion for her boy and for the Down syndrome community is infectious. I mean, not only did she bring her son, Bobby, and his friend, but she also brought one, two, three (at least) people who work with the Special Olympics in some way (along with several more family members and a few friends). Bobby had an entourage.

If I understood correctly in the chaos of the cheering crowd, one of the individuals, Clete, was the director of Special Olympics (at least on the local level). Sean, with sports flowing through his veins, is like a kid waiting for Christmas about Max joining the Special Olympics. According to Clete, hat long anticipated day looks to be sooner than expected.

As it turns out, the Special Olympics allows children as young as three to join. I believe they don't compete until age six (probably a wise rule), but the little ones can play and get involved. In addition--this is the REALLY cool part--some communities have programs for kids even younger than three, and our community, being so heavily involved in Special Olympics (who new?) might be one of those places. In Clete's words, our community "has a lot going on." That's so exciting!

So, I started thinking, what do I do now? "Clete, how do I found out about programs? Do I just go online to the Special Olympics site and search around?"--a potentially daunting task. "Well, you could," he said, "but---" and then the woman in front of me, Donna, turned and handed me her business card. She's the office manager. What luck!

And it really is luck. When school let out in June, I had so many plans to get more involved with the Down syndrome community this summer, but, you know, life gets in the way. We're already in August and I've done virtually nothing. That night was exactly the unexpected encounter I needed.

We are just scratching the surface.


Thursday, August 2, 2012

Interesting Encounters

In 20 months I expected to have a number of, I guess, uncomfortable "Down syndrome moments." I haven't. I shouldn't be surprised. Not much of this experience has been even close to what I imagined while Max was in my belly. Having him in my life has brought me boundless joy, and the most fulfilling responsibilities I've ever had.

I should clarify my initial statement. I've had a few "Down syndrome moments,'--the immediate and honest reaction that a stranger has at the moment he or she realizes that Max has Down syndrome. I've had a few, but they've never been uncomfortable.

A week ago, Sean and I were at Sears, trading in our broken Blu-ray player. While waiting for a call back from someone higher up, the friendly manager who was helping us took a good look at Max. It wasn't clear if he could see the Down syndrome or not, but here's what he said:

"You know, they are all such blessings. It's sad that so many crazy people can have kids and don't realize the blessings that they are."

Sean asked me later if I thought he was referring to Max's Down syndrome. I think he was, and in his way he was singing his praises.

Today, Max and I went to Michael's looking for supplies for a picture board (details to follow in a future post). In the checkout line the woman in front of us turned, took a long look at Max and said,

     "Does he have Down syndrome?"

    "I'm sorry, what?" I said.

    "Does he have Down syndrome?"

    "Yes, he does," I replied.

    "Oh, I'm sorry for you."

And this was the moment of truth. What comes out of my mouth unfiltered reflects how I really feel. And what I say is thrilling:

      "Well, I'm not."