Trifecta of Sensory Troubles: Overcome

Leo, age 8: First successful dental cleaning.

Longtime readers know that for years, Leo has struggled with three tasks: haircuts, doctor visits (specifically ear, nose and throat--basically anything that involves the use of an instrument to peer into anything) and going to the dentist.

Well, check, check and check!

In case there was any question, Leo is most assuredly, growing up. Tuesday I took him to the dentist (he was loooooong overdue). I'll admit I rescheduled this appointment a few times. Every time I've taken Leo to the dentist in the past, the most the dentist has been able to do is peer into Leo's mouth. He had yet to have an actual cleaning. And going has just felt like a huge waste of time, though of course I knew we had to keep persevering to help get him comfortable.

You may be appalled, thinking, eight years old and still no cleaning? But our dentist (who has a daughter with Down syndrome, himself) assured me that Leo would be fine, that his own daughter didn't allow him to give her a real cleaning until she was eight (apparently eight is the magic number?). Did I mention what a relief it is to have a doctor who "gets" it? The uninitiated might assume the medical community is compassionate to special needs and understanding of kids who might be more a little more afraid or uncomfortable and who in turn, make the appointments take a little longer. For the most part this is the case, but it isn't always.

And our dentist? Oh boy, does he get it. He asked Leo about his stuffed dragon. He tickled him with the toothbrush and the dental floss. He understood every word Leo said (this was extra awesome--to not have to play translator to every five words is liberating for all involved). And he wasn't even offended when he offered Leo water (he was dying to spit in the little rinse bowl next to the dental chair) and Leo asked instead, for orange juice.

Leo was definitely hesitant. But he never got hysterical and he was reasonable. I would say that's one of the biggest changes I've seen with him in the last year or so: he listens to reason. He can still be impulsive but you can get to his level and talk to him and say "This is what we're doing and this is why" and he might not love it or necessarily want to do it but he eventually says "OK."

I never quite figured out why Leo was so terrified of the haircut, ENT, dental trifecta. I just know that every time we left a hairdresser (usually with both of us in tears) or a doctor's appointment without a proper exam (remember how we had to have Leo sedated to just see if his tubes were intact?), it was like a punch in the gut. You're different. This is hard. Not to mention, all the undue stress it put on Leo, the poor guy.

So I'm relieved to say that I think we are finally closing the door on these struggles. Sensory? I guess. It doesn't really matter. All I know is that Leo finally has consistently, closely cropped hair, twenty-two teeth and I don't break into hives when I have to take him to the ENT (or even the regular old pediatrician).

As you can see, Leo is ready for Halloween, already. His dentist will be happy to know he doesn't even like candy.

I know! What's wrong with him?

Hair Today: Sweet Victories

Before...

Going...

Still going...

Pause to admire handsomeness...

And, gone!

Long time readers of this blog realize the enormity of these images.

Leo got a haircut. And he didn't freak out. He didn't cry. We didn't have to hold him down. I don't have bruised shins. I didn't cry (well, I actually did, but they were tears of joy and pride). I could go on and on.

Still a little confident on the heels of a recent visit to the pediatrician wherein Leo allowed the doctor to examine his ears (the other historical source of hysteria), we decided to revisit the notion of a real haircut. Obviously we've trimmed it here and there as he'd allow (usually in front of a piece of cake with him holding an iPhone while "America's Funniest Home Videos" played in the background, anything to quell Leo's haircutting demons). I used to joke that perhaps Leo was some kind of medical phenomenon, that he had nerve endings at the tip of his hair, he would get that upset and there was just no talking reason to him.

But, try, try again, fail, try again, right? Give kids/babies the chance to surprise you and nothing is permanent (two of my favorite pieces of parenting advice).

All of that, and Leo's hair was starting to look downright silly.

I should also credit Steve Jobs in my little Thank You speech. Getting to use the iPad (Super Stickman Golf to be exact) was the deciding factor in my opinion, that finally allowed Leo to relax enough and be distracted, something no amount of cake or DVDs could ever offer.

It's like almost everything with Leo. Everything has taken longer, been a long time coming (sitting up, crawling, walking, talking). But it all happened. It's all happening. He just does it in his own time. And certain things just don't come easy to him.

And that's what makes these little seemingly simple victories (a haircut, yes, a haircut made me cry happy tears today) that much sweeter.

Away They Go

No matter that Leo's bus didn't show up (hey, you can't have everything, right?) and I ended up driving him.

Leo is off to second grade, Ellie is back to pre-k.

Love these little people to death, but right now I am humming "It's the Most Wonderful Time of the Year."

Happy back to school to all!

Seven

How is it that our baby boy is SEVEN?

Seven years ago today you gave me one of the biggest surprise of my life. The surprises only kept coming with you, and they've only gotten better.

Oh, my Leo. You have the biggest heart of anyone I know. As well as the ability to aggravate me to the ends of the Earth. It's the perfect mix really. I certainly can't say you don't make life more interesting. And you make me laugh every single day.

This year your language really exploded. You're now quite the conversationalist, with little phrases like "I'll be right back" and "I got it it!" and "I'm OK!" (said after crashing down somewhere which you often do, man you are tough--for you to cry means it really hurt!). Come to think of it, you are more apt to cry when your feelings are hurt than when you're injured.

"I don't know" is another favorite, which you say with a sheepish grin when you full well know the answer but decide you don't want to share.

You read. It's so wonderful! Also? Inconvenient. There is no more lying to you about what shows are on TV (you can read the listings on the menu screen) and you totally knew when Grandma and Grandpa's birthday package arrived and it was addressed to you. Darn it!

You still love scrambled eggs and grapes. They are really all you need to survive though you humor me with the occasional carrot stick. Oh and cupcakes. Don't get me started (or you!) started on those. But just the tops. You are all about the frosting.

You love to dress up and make people laugh and I'm pretty certain you have a future in the theater. "Sophisticated sense of humor" is still one of the favorite comments you received from a teacher on one of your report cards.

Whatever you decide to do in life, I'm so glad I get to be along for the ride.

See?

The Long Walk Across the Grass and the Pretty, Big Bed

Have you ever had the thought when you watched a small event unfold, I am going to Remember This? This is momentous.

I could almost hear the shutter in my mind click this morning, as I watched Leo puff up his little red fleece clad shoulders, weighed down by his bulky blue backpack. He marched (a bit wobbly-that darn backpack) down the front steps of our house and across the large swath of dewy grass, looked over his shoulder at Ellie and me, not once, but twice, with a grin reserved only for water slides and wiggling puppies.

He had walked from the house all the way to the bus all by himself and oh was he proud.

He gave a final wave to us, right before he climbed the steps of the little orange bus. He was only across the yard, but he looked so … old.

Leo has been walking to the bus by himself (across the grass) for about a week now. The first time it happened by accident. Last year I always walked him right to the bus’ door (often with a still pajama clad or sometimes half clothed Ellie still in my arms). I clung to the fear of his oft-unpredictable nature and curiosity and predilection for running straight into the street. Sometimes it’s so hard to let go.

But one morning last week in the clamor of hurry-up-the-bus-is-here-and-where-are-Ellie’s-shoes-and-Leo-let-me-wipe-off-your-face, Leo made it down the front steps by himself. And so I stood there and watched him and well, yup, sure enough he was just fine. He made it to the bus, all by himself. Good for him. I know it’s not much when I explain it all out, but it just felt like a milestone.

Speaking of milestones, I give you:

Big Girl Bed Occupant.

I’m a big believer of keep them in the crib until they climb out (hi Leo, who decided to take a flying leap out of the crib when I was 38 weeks pregnant with Ellie and give me a small heart attack. Too Much Change!).

Ellie never did climb or fall out of the crib. She never even tried. But bed times were starting to take a loooong time. Questions about a “big bed” started coming. Since there was already a big bed in her room (Ellie’s room is our old guest room) it was impossible to make any excuses. I admit to being a little teary when I put her in the crib on Friday night for what (I thought) would be the last time.

Saturday afternoon Erin set up the bed rail and a giddy Ellie asked to go to bed at 7 p.m. After three hours and thirty different trips into her room to answer questions and requests, Ellie was back in her crib (she was given repeated warnings that this would be the consequence).

Sunday night was better. There were only a handful of requests, she settled down in the new, big bed fairly quickly, and slept through the night. She’s suddenly intent on “making her bed pretty.” All the animals must be positioned just the right way, the Princess pillow under her head just so, the covers tucked. That takes a while, but is not nearly as challenging as running up and down the stairs at 9:00 and 9:30 and 10 p.m. to the calls of a crib-bound little girl screaming "MAAA-MEEE!"

And the pretty bed? Not sure where she learned that one but it definitely wasn’t from me.

Now We Are Six

But now I am Six,
I'm as clever as clever,
So I think I'll be six now for ever and ever.
--From "Now We Are Six," by A.A. Milne

Six years ago this morning, on a day that was very much like today (insufferably humid, cloudy and overcast) a doctor leaned over my shoulder in the delivery room and told me he thought our baby had Down syndrome. What should have been one of the happiest days of my life had been transformed forever.

In case you hadn’t noticed, I’m a sentimental person. Even though Leo is six today, that fateful moment when Dr. No Tact made his announcement before I even got to hold my baby could have been yesterday. Leo’s birthday still chokes me up a little. OK, a lot. It’s not because I’m sad though. It’s because we’ve come so far in six years. I’ve come so far. I look at pictures of newborn Leo and want a "do-over." I want to hold him again when he is just minutes old and know what I know now. That sure, things might be hard sometimes, or different than I expected, but everything is going to be just fine.

Today I took Leo to school as I do every day. He helped me carry the casserole dish full of cupcakes he’ll eat later this afternoon with his classmates. They are pink and yellow (per his request) and I stayed up until 11 p.m. last night frosting each one. I had to work late and I was tired by the time I got to the little frosting project (thank goodness I had the foresight to make them the night before). The cake that I made along with the cupcakes (for tonight’s family celebration) is a bit of a disaster. I’m fairly confident that it tastes better than it looks though and luckily Leo is not a pastry critic. Yet.

The crooked cake? It really doesn’t matter. Because all I could think about last night, as I wiped the powdered sugar off the counters and soaked the frosting coated beaters was how happy I was. How normal everything seemed. And I thought about how six years ago last night I was oblivious to the roller coaster ride of emotions I was about to take. In the morning, life as I knew it would be over (as it is for any new parent, Down syndrome or not). Now, it's difficult to believe there was a time I doubted I would ever feel "happy" or "normal" again. ("Normal" being a relative term of course.)

Leaving Leo at school this morning, the tears came for me. It was six years ago I cried because my new baby, the baby I was terrified of and grief stricken over was downstairs in the neonatal intensive care unit. In a little more than a month my “baby” will enter first grade. Did I mention that sometimes I really want to stop time?

This has been a huge year for you Leo. You went from a small private school of less than forty children to a huge public school of over 500. You graduated kindergarten. You learned to read and speak in sentences without prompting. You can write, you’re beginning to learn to tell time, count money and you are an expert at coloring. You also really love to draw.

You have a lot of loves in your life and you continue to be a person of extremes. When you enjoy something (scrambled eggs, cake, grapes, watermelon) you enjoy it. But when you don’t want it (pretty much anything green), look out.

You adore your sister Ellie, who you have started calling (along with the rest of the family) "Ellie-Belle." Unlike many words you can say this one clear as, well, a bell. You are a fiercely protective older brother, already. The other day when you two were eating lunch outside and Ellie wandered off to play mid-meal (as she is prone to do), a fly landed on her pizza. You were incredulous. You yelled “My Ellie-Belle pizza, my sister!” Yes, you yelled at a fly.

You value family above everything and get giddy at the mention of “Grandma” (both of them) or Grandpa. You love your home. In fact, most days I think you’d be happy to just stay there, play with your trains and cars and Little People and put blankets on your dog Ruby while she “sleeps.” Sure the zoo and the park and taking Ruby for walks are all great fun but you’re also perfectly content to build hayrides and draw and do puzzles and read books. Lots and lots of books.

You could also play ball for an entire day, I’m pretty certain, and did I mention you have a fabulous arm? Really, people comment on it all the time.

Your stubbornness (when you don’t want to do something you don’t want to do it) is matched only by your incredible sweetness and sensitivity. I’m pretty sure that if your Grandma Eleanor was here she would say that when you are good you are very, very good and when you are bad you are horrid (see above regarding extremes). But don’t worry, she said this about me too sometimes.

You have a sharp little sense of humor and you love to make people laugh.

You continue to teach me to see the world in a way I never thought I could or would. You have introduced me to patience I didn’t know I had and have brought grace and compassion to my life. I did not know what these words really meant until you.

You surprise me and make me laugh every single day. I am so very proud of you and you are only six. I can’t wait to see what else you do! And even when you throw dish towels at me and cross your arms and scowl when you don’t want to do something, I love you.

Love,
Mommy

Goodbye, Hello and the Winds of Change

For the record, today, the last day of August was the first day in a long time that we all needed jackets. Light, jackets, but still. I’m sure we’ll still have many more hot days this year, but autumn is in sight.

And so is change. How’s that for a not very smooth transition? Let’s just hope the actual transition is a bit more graceful.

So we all know that school begins (for us) next week. Today marked the last day for the kids at the “old” daycare. It felt a little strange, we’ve been going there for over two years. When Leo began there, well, there was no Ellie and Leo was not yet three and definitely more like a toddler. Now, he’s all little boy. And speaking of…

We had the first lost tooth this weekend!

Yesterday afternoon, Leo emerged from the basement playroom where he was enjoying some “alone time” while Ellie napped. We noticed a suspicious white substance around his mouth and upon further inspection, determined it might be caulk from a project Erin had been working on downstairs in her basement workroom (adjacent to playroom). And don’t ask me what would inspire Leo to get into the caulk gun, just don’t. Anyway, it was then that we noticed the missing bottom tooth! And by missing I do mean missing as we have no idea where the actual tooth is. Oh well, Tooth Fairy. You’re just going to have to trust us on this one.

Back to change. I’ve been coaching the kids about the new school. We talked about it again this morning on the car ride to their last day at the “old” daycare. When I talked about how they were both starting new schools and that soon, Leo would be taking the bus again, they nodded their heads with such bright, round eyes and sweet enthusiasm. Let’s just hope what sounds so fun in theory is the same in practice. One promising sign: I came home on Friday to a message from Leo’s teacher. She called me at home to find out how Leo’s summer had been and just to, you know, chat. This is a first. Even at Leo’s former, tiny school that was so hands-on, I never received a pre-first day at school phone call. And yes, I teared up a little.

I had a minor freak out this weekend (OK, major) when I opened the letter from the transportation division of the school district and learned that Leo’s bus would be picking him up at 7:25 AM, from the daycare. For the past two years, Leo has caught his bus at the daycare and had about a ten minute ride to school (because of my commute to work, it just worked out better for him to leave from daycare). Well, goodbye to all that and welcome to the rough and tough world of public elementary, bigger school, more kids, longer bus ride. But back to the freak out. Having Leo get picked up at 7:25 would mean we’d all have to be at the daycare at 7:15. Did I mention Ellie is usually still asleep at 7:15?

Thankfully, a quick call to the school district this morning remedied the situation. Leo will be picked up by the bus at home at 7:45 which is much more tolerable though still cutting it close on my end in terms of catching my bus into the city, but I’ll make it work. That will mean a shorter bus ride (school starts at 8:35) and the thought of only taking one kiddo to daycare in the morning? Well that sounds downright luxurious to me.

I realize the minutea of all these little bus details and school starting times is about as exciting as reading about paint drying, but trust me when I say this is huge to me (and Leo, of course).

The "new" daycare is closed this whole week for cleaning and "teacher prep" (grrr) so we're getting a little creative about childcare. I'm fortunate enough to have a childcare center in my building at work that allows for employees to bring their children a certain number of times a year. So tomorrow morning the whole family will load up the van and head into midtown Manhattan for quite a little adventure. We'll do the same on Wednesday and then I'm taking the rest of the week off.

Kids + waking up earlier than usual + driving into Manhattan during rush hour + parking + me sitting at my desk all day knowing my children are downstairs in the same building as me + driving back home during rush hour ...It should be interesting. I'm trying to keep an open mind, but it could get get ugly. Although you should have seen the look on the kids' faces when I asked them if they wanted to "go to work with Mommy."

The rest of the week and holiday weekend we will be drinking up the last few days of summer, having lazy, crazy play dates, seeing how many hours we can log in the kiddie pool and how many Popsicles we can eat.

It should be rough.

5

So when I wasn’t looking, this little noodle

Also known as this medium sized noodle

Became this big boy.

Happy Birthday Leo! Today you are five.

Goodbye baby, goodbye toddler and preschooler.

Hello, kindergartener? Gulp.

No doubt about it, you are your own person and you always have been.


Leo, there are so many things I want to say about you, so many things I want to say to you.

I’ve never met anyone like you, and I’m not just saying that because you’re my son. I’ve never seen someone experience life as intensely as you do. When you are happy, you positively glow. You beam like a small planet. I’ve said it before and I’ll say it again, it’s fascinating to know someone whose “default” setting is so stubbornly set to “happy.” You just seem to want to love life. Of course, you’re also human, and you’re not always smiling. And when you are not, well…

Look out.

Mostly, you are a "roll with the punches" kind of guy. And with the right distraction, you recover quickly from hardships, such as not being allowed two kinds of crackers for snack.

I give you full credit. You are a boy of few words (for now) but you know how to get exactly what you want.

You can be infuriating, baffling, hilarious and extremely clever. I'll admit, some mornings, when you wake up at 4:57 a.m. and then also wake your sister up, I do briefly consider selling you on Craig's List. But then you flash me that "I'm happy to see you" grin and throw your little arms around my legs, and I change my mind about the selling.

You surprise me every day, and most days, they are the good kind of surprises.

And now, for the record, a list of things that at the ripe age of five you love (in no particular order):

1) Scrambled eggs
2) Dora (god help us all) and Diego and your latest discovery, Mickey Mouse (you like the oldies though, not the new cheesy Disney Channel computerized crap. You call him “Dee-Bow.”
3) Books. Books are one of the few things you will sit still for. It is wonderful to see, and many a night you fall asleep like this:

4) Going to the store. Any store. You are my little shopaholic. A true boy of the suburbs, I think you love Costco most of all. For the samples? Maybe…
5) Your favorite color is yellow. You will choose something for the color. Your favorite yellow “thing” is a lemon Popsicle.
6) And maybe the one that makes me happiest of all: Your best friend is Ellie (you say it frequently, and without coercion). I’m not sure how long this will be the case but I treasure it now, even when you are pushing her down and stealing her baby and trying to hide her bobby (pacifier) from her.

Happy birthday to you, my big boy. You are growing up so fast, it terrifies me.

Thank you for teaching me patience and faith and for the daily reminder that sometimes, a smile really can fix everything, at least for a moment.

Dee-Dee

When I was pregnant with Leo, Erin and I decided she would be "Mama" and I would be "Mommy." One of Leo's first words was "Mama," and he has gone on to say many things, but he still hasn't mastered "Mommy."

Instead, he calls me "Dee-Dee."

I'm not sure if this is something that a speech therapist could explain--is there something about the formation of the word "Mommy" that's difficult to say? It's a bit of a mystery. I guess I could write his ST a note in his book and see what she thinks. At this point it's just sort of funny. I'm Dee-Dee. Of course I am.

Over the winter break Leo had a bit of a communication explosion. This sounds a little messy, so perhaps "breakthrough" is a better word. He became That Kid. The one who is constantly tugging on his mommy's pant leg, calling to her from the backseat, yelling to her from the couch, shouting to her from the bottom of the stairs: Dee-Dee! Dee-Dee! It was as if he was saying, "Mommy, look at me! Look at what I'm doing/what I did/what I'm going to do!" And since he can't always tell me what he's doing, I often have to stop and look so that he can show me. It could get a little annoying, but it was also wonderful. It has also forced me to take on a very zen tone in the house. I sometimes want to get exasperated at the 90th "Dee-Dee" of the day. But I am also overjoyed. Leo is talking. Leo wants to talk to Me. Who cares what he calls me. He knows I'm his Mommy.

Smarty

Sometimes I think that I don't give Leo enough credit. It's not that I think he's dumb, I just, well I think that sometimes I set the bar low, so I won't be disappointed. Also, I don't know quite what to expect of him. I like to think that he's high functioning, and all signs so far seem to point towards this, but I don't want to get too comfortable. Will he keep going at this trajectory? Will he have some huge plateau and just stop developing at age five? Maybe that sounds silly, but I just don't know. Maybe it's a protective measure--if I expect little or nothing, then whatever I get is gravy. For years I've been reading about how parents of children with Down syndrome celebrate the little victories, the tiny accomplishments. It's really true. So I've just come to expect little things. And of course, to celebrate them.

Well, he is just full of surprises. And never ceases to amaze me, really.

Two recent things:

1) Leo is very interested in opening packages (making it impossible to put any presents under the tree this year but that's another story). Last week a box arrived for me. It was a small box containing shoes that I was not sure I was going to keep so I didn't want to bother to opening them. Well Leo had other plans. We've received a few gifts via the mail recently so I'm sure he thought it contained something for him. I told him that No we weren't going to open the box right now, and proceeded to begin my evening coming home ritual of hanging up coats, unpacking lunch boxes, going through kids' papers, starting dinner. It was after a few minutes that I realized Leo was being suspiciously quiet. There were no pleas for "Dora" (which is usually the first thing he asks for when I pick him up from school.

That's when I spotted him. He had gone into the junk drawer to retrieve a pair of scissors, which he had seen me use (bad modeling) last week to open a package. Before you call Children's Services on me I keep those scissors way in the back of the drawer but yes, it is troubling that he reached them (note to self, move scissors). There was Leo, sitting on the mud room floor, attempting to open my shoe box with the scissors. He had thought through the opening process and realized he would need a tool, knew where said tool was, and got it. His attempts were quickly dashed by me, but I still thought the whole thing was pretty great.

2) During the weekend's playing in the snow fun, Leo wanted me to pull him in the Red Flyer wagon. There was way too much snow for wagon pulling, so I explained to him that it would not be possible to pull the wagon because it would get stuck in the snow. That's when he climbed out of the wagon, bent down and began digging the snow out from under the wheels of the wagon. Again, he thought through the problem and thought up a solution (that's him, pictured above, trying to dig the snow out from under the wagon tires).

Leo, you are quite a guy.

The Obligatory First Day of School Photos

Here's the annual First Day of School Photo in Front of the Tree Out Front.

It wasn't Ellie's first day of school, but she did start in the toddler room last week, so I'm glad I got a picture in of her around the time that she "moved up." Here she is with the cute little box that her new shoes came in (doesn't she look like she's going somewhere important?) That white stuff on her cheek is sunscreen. She likes to carry bags/purses around and say "bye-bye." Speaking of her new shoes, I am love with See Kai Run shoes and I love them even more now because they have a new line called Smaller, for babies 12-18 months. They are very soft soled but still shoe-like and ideal for new walkers. Leo's fatty feet never fit this brand (they even make cute boy shoes). Ellie seems to be liking her first "real" shoes (though I still love her new Mary Jane Robeez which I found at a steal at an outlet mall in Oregon).

And here they are, the two hooligans in a rare, still moment. They look a little guilty. Sorry for the head chop-off, Leo. You guys are just to fast for me.

A Face. By Leo.

This weekend Leo drew, what looks to me, to be a face. Complete with all the fixins--eyes, nose, mouth. And this was done completely without suggestion. Just all by himself. I know, bad photo, and really ugly countertop, but Cool!

Five

Here's another fun milestone. Ellie learned how to "give five" this weekend. And I caught her and Leo doing it together. You can in these pictures see how patient he is being with her, trying to get her to do it. And then when she does it he is so proud.