31 for 21: Hello, Old Friend

I hardly read other people's blogs anymore let alone attend to my own blog, but I just saw that my friend Cate is doing "31 for 21" (blogging for 31 days of October) and thought, hey! That might be fun. And, um, challenging? Seeing as how I'm lucky to blog once a month let alone every day for a month. The last time I did this I think I had babies and prior to that I did it for years and years (also with babies) and well, what can I say? I'm getting older and (more) nostalgic.

We also won't talk about the fact that it's October 2 so I've technically already missed a post. Ahem.

I have a lot of ideas about what to write about. The trick will be formulating them into some coherent posts. I don't think about Down syndrome too much these days. Eleven years into this gig, Leo is just LEO. Sure I attend IEP meetings every year and certainly communicate with his "team" at school and teachers more than I do with the other children. But that just feels normal to me. I think having other children has helped considerably, in that I don't pin everything (bad) on Down syndrome. For example, when Leo was a challenging preschooler who ran away from me at every turn and refused to go to sleep at night (Ah, the good old days when I had to hold his door closed while he wailed), I blamed his Down syndrome. Fast forward seven years to TWO "typical" preschoolers who delight in running from me in the parking lot and not going to sleep at night.

Little did I, an inexperienced parent know that he was actually just being, you know, a preschooler.

More alike than different, indeed.

Middle School Trepidation, (Happy) Conference Tears and My Accidental 31 for 21 Post

The middle of October? GAH!

This is the first year since I've kept this blog that I have not participated in 31 for 21 (blogging for 31 days in honor of Down syndrome awareness/October as Down syndrome Awareness month).

I am not happy about this. I miss this blog. I miss reflecting on this crazy life. It's not that I'm NOT reflecting, I just don't have the same kind of time to compose my thoughts on said crazy life.



As I always do, I will blame them.



They are so helpful while raking leaves, said no parent of preschool twins EVER.



Fall is in full swing. Our neighborhood is awash in orange twinkly lights and porches are bedecked with pumpkins, hay and mums. There also seems to be a proliferation of zombie decorations this year (or as the twins call them, "b'zombies," to which I echo, "pastrami?"). Don't ask--this is what happens when you spend WAY too much time with two three year olds.

We are almost two months into school (what?) and this week was parent teacher conferences.



I met with Leo's teacher first. It was...ok.  He's doing FINE. Math is still his biggest struggle and I'm trying to figure out if it has to be this hard. I mean, I'm not looking for some kind of miracle but I have to wonder if part of it is the way it's being taught. We discussed my interest in him using a more visual math program. I brought up (TouchMath) a program I'd heard good things about and was met with blank looks. I will continue to pursue this. One lightbulb moment though: I don't have to help Leo with his homework. In fact, according to his teacher I shouldn't be doing so. I can't tell you how huge this is. Up until this point I've been sitting with him, dictating some words when he asks, helping him form sentences. The teacher's response: Stop it. He can do it himself and SHOULD be. And guess what? She was right. Of course Leo is not happy about this new development but he'll get used to it.


Our annual visit to...the apple farm parking lot. Ha ha kidding. We did go apple picking, it was just so hectic that I forgot to ask Erin to take a picture until we were about to pack it up go home. Be assured it was scenic!

I can't go into too much detail here but I will say that I am getting VERY NERVOUS about the upcoming transition to middle school. Preparations are already beginning. We are touring a prospective school on Monday and another the following week. This is a time I've been dreading for years, leaving the safe, familiar comfort of his sweet elementary school. The rumor has always been, as one of my dear fellow "special needs" moms puts it, that middle school is "where it all falls apart." Let's hope (OBVIOUSLY) that's not the case. Stay tuned.


Ellie is really into Halloween. Talking about Halloween. Drawing Halloween (seen here: haunted house).

Ellie's conference felt decidedly lighter. When I walked into the room, the teacher welcomed me to a little table and announced that "this is a conference I've been looking forward to."

Swoon.

Of course I teared up. I almost always do at conferences. Yes, Ellie is doing well and fine academically. She's reading at grade level. Math-wise, she's right where she should be. But what her teacher remarked on is Ellie's sensitivity and helpfulness, her compassion and innate ability to recognize when other children need assistance. She detailed how Ellie will help another child, but do it in such a way that she's not drawing attention to herself or seeking out commendation, nor does she in any way make the child feel inferior because they need extra help.

Hmm. Wonder where this comes from? Could it be, that all those articles and studies about the benefits of growing up with a sibling with special needs might actually be true?



Another small example: Ellie's teacher told me that the other day she asked Ellie to bring something to the office and told Ellie she could choose a "buddy" to accompany her. All arms went up in the air. Rather than choose one of her little friends, Ellie, by her own volition, picked a child that is one of the most troublesome, who requires a lot of attention (for behavior). And Ellie's teacher thought that was a pretty impressive choice.

Last night Ellie was asking me about middle school (she listens to everything I say. When will I actually digest this?). "Will Leo and I go to the same middle school?" She asked. I told her no, that it wouldn't work out because of the age difference, but then I did the math and realized they could potentially be in the same high school (OMG. HIGH SCHOOL?).

"But we wouldn't be in the same class, right?"

I said no, not the same class. And then I paused and asked her why she thought that was. I wanted to know if she was going to say something about special needs (she does know the term and she does know about Leo's Down syndrome).

"We won't be in the same class because they don't allow brothers and sisters to be in the same class," Ellie announced with certainty and pride and just a tinge of irritation for my not knowing this.

Swoon again.

So there you go. And maybe this is my accidental "31 for 21 post."

The Luck We Get

Sometimes Leo and Ellie will disappear into Ellie's room (where much of the dress-up garb is housed) for a looong time. They emerge, and something like this is the result (styling by Ellie).

"Some luck lies in not getting what you thought you wanted but getting what you have, which once you have got it you may be smart enough to see is what you would have wanted had you known."--Garrison Keillor, Lake Wobegon Days

When I was pregnant with Leo, I couldn't shake the feeling that something wasn't "right" with the pregnancy. It was just three years after the death of my beloved mother, the person who was my touchstone, to whom I looked to for virtually everything. To say that my faith in the universe was shaken would be an understatement. If she could up and die? Then why couldn't there be something wrong with the baby? Anything could happen. Anything was possible. (In my mind, at that point, the "Anything" would inevitably be bad.)

I tried to reassure myself about "the baby." I tried to tell myself that Everything Was Going to Be Fine. After a lot of soul searching, we declined prenatal testing. But then some suspicious markers showed up at the 20-week ultrasound and I was terrified. Of course, I remember thinking, as I stared up at the ceiling in the tiny exam room at the maternal fetal medicine center at Mt. Sinai Hospital. Of course there is something wrong with the baby.

But then then the doctor did a bit more investigating and another doctor peered at the screen. There was blood work. Actually, everything looked fine. Screen negative: Your baby does not have down syndrome.

Bullet: Dodged. Relief.
***
About a week before my due date, Erin and I both read an article in a magazine that mentioned a baby with Down syndrome. It was quite a story, about a couple whose baby had died when the father had inadvertently left him in the car. They went on to have another child--who was born with Down syndrome.

Can you imagine? I asked Erin. Having a baby die, only to have another who is born with Down syndrome? I uttered  "Down syndrome" with such disgust, as if the word itself was contagious and that saying it alone would reach in and add a chromosome to our unborn baby.

"Oh I don't know," Erin replied. (Even back then she was a more highly evolved person than I am.) "All the people I've met with Down syndrome seem pretty happy. It doesn't seem like the end of the world to me. Not by a long shot. I think I can think of a lot worse things happening."

I shook my head in disgust and disagreement. Oh no, I remember thinking. That would be the end of my world, for sure.

But, you know how it goes: "People make plans, God laughs."
***

I named this blog in a rush one day--typing one of the the first things that came to my mind when I thought about what Down syndrome meant to me and before I realized I might actually write here and people might someday, you know, read what I wrote.

In reality, I don't exactly believe that everything happens for a reason. I actually think that life is really quite random.  The whole, "Special babies for special parents," (we heard that one when Leo was born, along with another favorite "God doesn't give you what you can't handle"--to which my favorite refrain is: If that's true then I wish he didn't think I could handle so much!) while being well-intentioned, is to me, merely a good wish. Down syndrome is random. Science has proven it. There is no reason why it happens or why one baby has perfect chromosomes and another has an extra one, or one missing. I've said it before and I'll say it again. If I've learned anything after three pregnancies and four babies and births? It's a miracle any of us are here at all.

You think you have things all figured out, you think you have a plan and then...Down syndrome. Or, I don't know...twins. "People make plans, God laughs," will truly always be one of my favorite quotes.  The lesson in all of this, to me, is not so much that what happens, happens for a reason, but rather to try and learn something from what did happen. To try and make the best of things, no matter how hard or scary that might be. Leo having Down syndrome? If that's not almost the complete opposite of what I thought I wanted, then I don't know what is.

But, look. Here we are. Having a pretty good time if I do say so. And here's Leo, enjoying his life as usual. He almost always knows how to have fun.

January, 2012

And we are so very lucky to have him.

31 for 21: Here's the Thing

Warning: It's not all about Down syndrome around here. In fact, it's hardly about Down syndrome at all. (If anyone had told me, eight years ago, that I would someday write that as a caption for a photograph of two of my four children (Wait, WHAT?) I would not have ever believed them). This just goes to show you: You truly never know what will happen in your life.

I know you are all waiting in rapt suspense to see whether or not I will participate in  this year's "31 for 21" (blogging every day for the month of October in honor Down syndrome Awareness).

I'm torn. Part of me likes it as an exercise in writing (and sticking to something for an entire month is kind of fun). Selfishly, it's nice for me to have one good chunk of writing to look back on, since I don't post here nearly as much as I like to. But then there is the little matter of what to write? I know everyone says "you don't have to write about Down syndrome" but I do feel added pressure to somehow tie in the old extra chromosome, at least in some posts. I've written so much about Down syndrome that there is some level of performance anxiety involved now. Mostly, I don't want to repeat myself and bore you all to tears (any more than I already do-ha!).

And here's a funny thing: I started this blog in 2008 when my oldest son Leo was four, thinking I'd write mostly about Down syndrome, and that's indeed mostly what I wrote about. I started it as a way to process this Big Thing that had happened in my life and also with the hope that I would find a larger Down syndrome community beyond the one I'd found locally (which was fine, wonderful even, but for some things, more is more). I found that wonderful community, in spades.

I feel like I have beaten the Down syndrome horse. I wrote about our struggles with Leo's sleep and his behavior, about the hand wringing surrounding his school placement, about his eyes and ears and his adenoids and his teeth. I wrote about the grief surrounding his diagnosis and the eventual acceptance.

And then Leo graduated from preschool. Then kindergarten. Suddenly the language delayed little boy would Not Stop Talking.

And then his baby sister grew into a little girl.

And then two more little people came along, and then we were six. Then twin babies became toddlers. Life got even busier and more ridiculous (mostly in a good way).

And Leo still (obviously) has Down syndrome, but I think with every year that goes by, the Down syndrome has receded into something that just is. It's no longer at the forefront. All the questions are gradually being answered. Will he walk and talk? Of course.  Will he read and write? Oh yes. Will he stop running off in public places? Yes, thank goodness. Will his speech improve? Gradually, yes. Of course, knock on wood, we've been very fortunate have none of the major health problems that can be associated with Down syndrome. We've had the privilege of relative normalcy. At least, it's what's normal for us.

All of this to say, I think that mundane, not all Down syndrome, all the time can also be a contribution in this whole "31 for 21." Because to this day I remember the feeling of waking up in the mornings that followed Leo's birth, rolling over and looking at the light coming through the window of our little garden apartment in Park Slope Brooklyn, thinking: "My baby has Down syndrome. My baby has Down syndrome. And that's all I will ever think about again."

Because of course that's the farthest thing from the truth.

But in the early days, when Down syndrome loomed as The Worst Thing That Ever Happened To Me? I would have given anything to stumble onto a blog that talked about "American Horror Story" (I've decided I'm absolutely too scared to watch season two), the best Thai food in Portland, Oregon, the paper dolls I scored on eBay and Oh My Goodness You Won't Believe The Cute Thing The Babies Did Today. And did I mention my oldest son has Down syndrome? And that it's honestly (most days) no big deal?


If that's the kind of blog you're looking for? Then you've come to the right place.


Grab This Button

Oh, Right. That.

Leo pushes the boundaries, even in his sleep.

You may have noticed a rather glaring absence in my posts lately.

Down syndrome.

Right. I haven't said much about it, have I? In honor of "31 for 21" I am...apparently NOT talking about the good old 21.

Obviously, the arrival of two babies has overshadowed a lot lately. I mean, let's face it. Cute baby picture posts are way easier than longish, heartfelt essays about what a major birth defect has meant to our family.

But I think there's more to the fact that this year I haven't been writing about Down syndrome.

It's that I'm not sure what to say anymore.

I'm obviously over the shock. I'm not grieving Down syndrome anymore. I love my boy and he is who is he is. I don't know him any other way than having Down syndrome. His little quirks? Hates haircuts, loves to love, fancies scrambled eggs and grapes, Ellie, Lucy and Harry above all else: Who knows if they are because of Down syndrome or just because. Everything happens for a reason and at the same time? I also think that, as my dad says, nothing happens for any reason at all.

Here's a little Down syndrome story from today. Ellie and I went to the mall to get some needed items for Leo's Halloween costume. We had a few extra minutes before we had to go home to meet Leo's bus, so we stopped to play at the indoor playground. There was a toddler there, big for his age to not be walking and my "special needs" radar was up. Something was just not quite "right" with this little boy. I examined his profile and noticed he had the telltale flat head (one of the traits of Down syndrome).

And then it dawned on me that it was hard for me to tell if he had Down syndrome because to me, Down syndrome is "normal." I see it every day in Leo, and so I sort of feel like I don't see it at all, if that makes sense.

Worth a Read (Or a Re-Read)

Have you read this?

"I'm Not a Saint, Just a Parent."

Cate reminded me about it and I just reread it and yes, I'm a big ball of hormones right now but wow. It's beautiful. There are so many passages worth repeating. This might be my favorite:

On being a parent:

"Some bits are hard, some bits are easy, some bits are fun, some bits are a frightful bore. That’s true of life with Eddie [writer's son with DS], it’s also true of life with Joe ["typical" child]. But you don’t even begin to break it up into categories: it is the one endless, complex business of being a parent. You don’t gointo parenthood to make sure that the benefits outweigh the deficits: you go into it out of — brace yourself but no other word will do — love."

Check it out.

Giveaway

I think it's safe to say I went on a slight Down syndrome research bender when Leo was born. Well I'm attempting to do some organizing around here and I'm ready to pass these books on.

These are the books I have that are up for grabs (there will probably be more coming soon):

Gross Motor Skills in Children With Down syndrome (A Guide for Parents and Professionals)

Early Communication Skills for Children with Down syndrome (A Guide for Parents and Professionals)

Fine Motor Skills in Children With Down syndrome (A Guide for Parents and Professionals)

The Down syndrome Nutrition Handbook (A Guide to Promoting Healthy Lifestyles)

Simply leave me a comment (your big chance to delurk!) or just email me and let me know where you'd like the book sent. First come, first served.

Mistakes and Miracles

Every night after bath and books, either Erin or I lie down next to Leo in his bed and stay with him until he falls asleep (and no, I didn't think I'd ever be that parent). Leo gets his covers just so, lines his pillow up perfectly straight with the fabric smoothed down, and rests his water bottle on it.

Most nights, it takes about 3.2 seconds for Leo’s breathing to become deep and slow and tinged with a slight snore—the instant indication that he is fast asleep. I’m not sure what they do with him at that school of his but the boy is wiped out. Many a night dinner is eaten with his head almost horizontal on the table, poor guy.

I don’t get up from Leo’s bed right away. First of all, Leo’s bed creaks. As do the wood floors. And the old door. So I wait a few extra minutes, until I’m absolutely certain he is down for the count. And in this time, I often gaze at my boy, the little six year old who, when he sleeps? Looks just like the newborn I held and nursed and rocked. Full little pink lips, slight open mouth posture with the little tongue that, when resting, curls inward like a spoon. I could watch him sleep for hours, there is just something about it that fills me with both peace and pride.



Maybe it’s because when Leo is awake he’s in constant motion. He’ll still allow a cuddle or a snuggle here and there (and he’s actually far cuddlier now than he used to be) but not much slows Leo down. When he’s awake, I can’t drink him in the way I can when he’s sleeping. Those little, slightly curled ears, the crease in his palms, the significant space between his big and second toe on his decidedly flat and wide feet. All of these traits are characteristics of Down syndrome. Those traits, and hypotonia (pronounced floppiness) are probably what tipped off Dr. No Tact to the extra chromosome on that insufferably humid July day six years ago. Not all people with Down syndrome share these features, mind you, but many do.

I find it fascinating, really, how people with Down syndrome can both look like each other (it’s as if they’re all distant relatives, I heard someone say once, and that’s stuck in my mind ever since) but also resemble their families. If you’ve ever been to Buddy Walk or, a child’s birthday party for instance, brimming with children with Down syndrome, you see that it’s true. They all look a little bit like their moms and dads and brothers and sisters and grandmas and grandpas, and a little bit like each other. I remember being so worried that Leo wouldn’t look like me (I know, this sounds pretty narcissistic but you can’t tell me I’m the only mom with a baby with Down syndrome who hasn’t thought this). It was one of my first fears (along with whether Leo's liver and kidneys were functioning properly and whether he was going to die) in those early dark days and it came to me when we were driving home one night from a long, somber day in the NICU.

When I was pregnant with Ellie, I wondered if she would look like her brother. For some reason I was worried they wouldn’t look like siblings.

I think it’s safe to say my fears have been put to rest. That's Leo at about a year old and that's Ellie at about age two.

Did you know that Down syndrome is the only trisomy (each cell in the body has three copies of the twenty-first chromosome) deemed “compatible with life?” That in itself is sobering. Every little bit of Leo is affected, and yet, he’s here. I look at all of Leo’s features-- funny little ears and feet, his eyes, his chubby hands, and do you know what I think? I think that it’s kind of a miracle. Twenty-five percent of fetuses with Down syndrome will either miscarry or be stillborn. Doesn’t that sort of make you stop and think?

I struggle with faith. I do. Sometimes I don’t know who to believe or what I believe in. But this much, I know. I believe in love. I believe in the religion of love and gratefulness and kindness and forgiveness. And I would like to believe in miracles, I would. I try every day to believe that everything happens for a reason, both the terrible and the wonderful. And to trust. Like Cate says (she gave me the fridge magnet too): “Everything will be OK in the end and if it’s not OK, it’s not the end.”

This week, on “Glee,” (ha! Bet you didn’t see that one coming!) one of my favorite shows and if you aren’t watching it start right now, there was a scene that I have not been able to stop thinking about. Sue Sylvester, the often cruel, hard-nosed cheer leading coach shows a softer side whenever she has a scene with her older sister Jeanie, who has Down Syndrome.

In this particular scene, Sue talks about how as a child, she would pray to god to make her sister "better" and it (obviously) didn't work. And so, she couldn’t believe in a god that wouldn’t heal her sister, the sister she admired and looked up and who was tormented by her peers for being different, for having Down syndrome.

Sue asks her sister if she believes in god and her sister responds: “God doesn’t make mistakes.”

Maybe that's too simplistic. Too easy. But the more I live this life, the more I get to know Leo and all the other children that have come into my life because of that extra little chromosome, I believe this. Life usually doesn’t work out how we plan or expect it to. The things you thought you always wanted and needed can leave you feeling empty. The things you thought you never wanted can end up being gifts.

When you think about it, we are all just one chromosome away from being “incompatible with life.” We’re all just one car accident or wonky blood cell away from disaster. Having said all this, I still think Sue's sister is right. There are no mistakes. There are certainly great challenges and disappointments and hard lessons to be learned. But there are no mistakes.

Acceptance

The other night Leo was getting undressed and ready for bed. He sat down on the edge of the bathtub and methodically placed one foot into each flannel pajama pant leg. I was sitting on the toilet (lid closed, ahem), sporting one of my favorite “night gowns,” a super soft and well-worn Buddy Walk t-shirt from back in the day—2004—the year Leo was born.

Leo looked at me and then at my shirt and said, clear as a bell:

“Buddy Walk.”

We didn’t go to the Buddy Walk this year. For whatever reason, it just didn’t happen. I did not teach him that word. Leo can read. I guess I need to accept this already but I still find it shocking.

Oh how I wish someone had told me that little moment in the bathroom would happen, back in 2004 when I held a little two month old Leo and cried through most of my first Buddy Walk, held in New York’s Central Park. I never thought I would see the day that my boy would read (or walk or talk or build hayrides or torment his future baby sister). I never thought I would see the day that I didn’t believe with all my heart, that life was over.

Sometimes (well, all of the time, really), you just have to live through the struggles to find out that it’s possible to come out the other side.

Leo's first birthday, Portland, Oregon, 2005

“Don’t Accept. Expect.”

Pajama Day at Daycare

The same day I wrote my last post, about the joy of seeing Leo fitting in so well with his peers at daycare, I received this email from the daycare’s head teacher.

I admit, when I saw the subject line, simply “Leo,” I panicked. Will I ever stop waiting for the other shoe to drop? Will I ever stop expecting Leo to be excluded or singled out for not doing what he should be?

Dear Maya,

I was so proud of Leo today and wanted to share this with you.

I took the older group outdoors to play various team games today.

Leo followed all the rules and waited for his turn and loved the sports day.

He has come such a long way this year that watching him was sheer delight.

He disappeared upstairs when I was giving all the other children treasure before I left today but I will make sure that he receives his treasure tomorrow.

This brought tears to my eyes so I am sure you will be a very proud mom tonight/tomorrow.

Regards, Ms. N.

By the way, he “treasure” she referred to is a box of trinkets, similar to toys at a dentist’s office, that the children are allowed to choose from for good behavior.

Of course, Ms. N’s email brought tears to my eyes too. It’s such a wonderful thing when someone else sees what your child is capable of, when they recognize him for who can be, when they do more than just “put up with him” for the sake of not discriminating.

I know that I sometimes sell Leo a little short. I mean, I think and know he’s brilliant. He sees the world in a way that no one else does and it’s clear that he’s incredibly intelligent, he just learns a little differently and yes, a bit slower, perhaps. And he has Down syndrome. But what he can do? All that far outweighs what he can’t. And I’m confident this will continue.

Ms. N’s letter came the same day this speech was brought to my attention. Here's my favorite quote from it:

"Life doesn't let us in on many secrets. One of them is, happiness comes to those who do the best with what they have. The more we struggle in our limited, human way, to make sense of things, the more we see that some things don't come with sense included. The best we can do is the best we can do."

The gist of the speech is this: "Give your child the chance every other child gets...Don't accept. Expect."

Sounds simple, doesn't it?

Sure, it's simple, but also hard, when you've been told since the day your child was born what he won't do, that he's different, that he's slow. Lowered expectations + waiting for the other shoe to drop = hard habit to break.

By the way, when I say "Don't accept. Expect," what I think is, be the best you can be. Don't try to be like everyone else. Because really, who wants to be like everyone else?

I think every parent and teacher should read that speech. Scratch that. Every human being should read it: “Don’t accept. Expect.”

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

All I Have

Oh, hello!

It feels like it’s been forever, even though it hasn't. I think it's because I’ve been cheating on this little project with another decidedly not so little project. So yes, distracted is the word du jour. My mind has been charging through in overdrive. There have been loads of delicious little anxious moments and middle of the night wake-ups that involve a bounty of tossing and turning and ceiling staring. Questions range from Can I Do This? to Who the Hell Do I Think I Am? (perhaps my personal fave) to I Have No Choice. OK so the last one is not a question, that much I do know.

So. Not to be vague, but I kind of have to be for now. I am that superstitious.

In other news, Bullets. What can I say? It’s all I have. Right now.

-Summer seems to be in full swing. Oh well. Spring, it was nice knowing you for all of, what, 4.2 days? Here in New York City we’re in full-on jungle fever. It could seriously be Vietnam out there (although admittedly I’ve never actually been to Vietnam but hey, I have the ability to imagine torturous humidity when I am indeed experiencing it). Thank goodness my hair seems to have recovered from the big Haircut Mistake of March 2010. I can finally put it back into a pony tail or (yippee!) pigtails! And I know what you’re thinking and no, I am NOT too old for pigtails.

-Last weekend I took Ellie to her first official birthday party where only she was invited—it was for a little classmate of hers at school. Held at a nearby park, there was pin the tail on the blow up donkey (which Ellie insisted was a unicorn because of the pointy hat), and a giant kind of scary inflatable ball that the little kids could climb into (I know) and I was positive someone was going to be suffocated at some point during the party. I jumped at my chance to get my hot dog on (yes I’m one of those vegetarians who deigns to eat hot dogs—real hot dogs made from turkey lips and cow nose and all that).

-In short, the party was general, fun preschool mayhem (as they should be at this age). And it was also at this party that I discovered Ellie is afraid of clowns. Like, really, really terrified, run-screaming-from-said-clown-with-tears-and-a-bright-red pink-face, afraid. This clown was painting faces which I thought Ellie would adore but alas, the clown was too much to get past. Ellie did warm to him later in the party when he made balloon animals and um, other things (Ellie took home a pink balloon “flower.”)

-I also had a pretty big realization at the party: little boys can be really annoying, even when they have 46 chromosomes. I know, newsflash, right? Those balloon animals I just mentioned? The little boys at the party (ranging from nearly three to five or six) took great delight in popping those balloons, literally right after that poor clown made them. And I even thought to myself when I heard that balloon animals were on the agenda, Well it’s a good thing Leo isn’t here because he wouldn’t be able to handle those.

-Oh that clown. He was either heavily medicated or had the patience of a saint or had plans to go home after the party and drink and entire bottle of wine. I'm betting on option #3.

-Party realization, continued: You know those annoying little 46ers I just mentioned? The balloon poppers? They reminded me of how I can be really hard on Leo. I try not to let it show, but I know it does sometimes and I need to really watch it. He might not notice it now, but there will come a day when he will.

-And I tend to jump to the conclusion (as I’ve written here before) that all of Leo’s infuriating, exasperating behavior is because of the Old Faithful Down syndrome, you know, Down syndrome, the reason for all that sucketh.

-Because you know, if Leo didn’t have Down syndrome, he wouldn’t feel the need to stomp in the ginormous mud puddle that he created in what used to be my beloved flower bed (it was nice knowing you, butterfly bush). If he didn’t have Down syndrome he wouldn’t refuse to get into his car seat at the end of the day and instead climb into the passenger seat or scurry to the back of the minivan and dance around and shake his behind (true story—I’m still trying to figure out who taught him/showed him how to shake his booty).

-Right. It’s all Down syndrome’s fault. Because little boys (or little girls for that matter, I need to do a whole other post on the Bargaining and Deal Making and Discussion that exists when you live with an almost three year old girl) couldn’t just be maddening and annoying Why-is-Mommy-banging-her-head-against-the-wall? inducing little creatures, all on their own, without the help of some silly little syndrome.

Hold My Hand

In the last month, I’ve seen on three separate occasions, young men with Down syndrome walking with their families through the streets of midtown New York.

I know what you're thinking. Big deal, right?

Well, I’m a total gawker. I admit it. I see them and I full-on stare. I drink them up. Sometimes I eavesdrop. I want to know everything. How old are they? Are they talking? If so, what are they saying? I’ve always felt we (families of people with Down syndrome) should have a special code word or handshake or wink so that people know we’re not being rude, that there is a legitimate reason for our curiosity.

What strikes me about these young men is how calm and mature they all look. And all three times, they’ve been “spotted,” never once were they hovered over. There was no nervous mother holding a hand with a death grip. Perhaps most notably though, the young men were not charging ahead, glancing back over their shoulders with a cackle and a teasing look as if to say Try and stop me, lady.

Leo is much, much better than he used to be, when it comes to listening and not running off in public places. But he’s still a definite flight risk. At Trader Joe’s and Costco and Target, it’s still cart city for him. When it’s just the two of us (or just Erin and him), he’s almost always a little jewel and I will sometimes (OK, probably not often enough, I'll admit) let him walk independently. But still, the thought of him “free range” through New York City, of not having him strapped to my body? I shudder.

But obviously, right? I mean, he’s five. I’m sure many parents of typical five-year olds would be nervous in New York too (or any city or for that matter, public place). But let’s be honest. It’s a different kind of nervousness. With Leo, there’s a lack of predictability that makes me jumpy (to put it mildly). And I know it’s crazy but there’s a part of me that thinks Leo is always going to be the way he is now. But then I look at those young men and I’m just…hopeful.

And I’m fairly sure there will come a time when I want to hold Leo’s hand, and he won’t want to hold mine, only in that instance, it won’t be a safety issue-it won’t be because I have to hold his hand Or Else. It will be an I’m your Mommy and I want to hold your hand because I love you! issue.

And who knows if he’ll indulge me.

An Irony Not Lost, With a Void

Many years ago, my mother was a special education teacher. And some of her “favorite” students? They had Down syndrome.

Over twenty years later, I still remember little David. He was tiny (well he was only four), with straight, warm chocolate colored brown hair, cut in a bowl shape (give him a break, it was the mid-eighties). You walked into the classroom and David threw his miniature arms around you. Inappropriate? Of course. Sweet and irresistible? That too.

A few times a year my mom would let me skip class and come to her school. I adored these sweet, affectionate little children (it was a “multiply disabled” preschool class, some had Down syndrome, some had other general developmental delays). They could also be scary. They had tantrums and outbursts. Sometimes it was hard to understand what they were saying, and that was the kids who talked at all.

But I knew the day I met him why David was my mom’s favorite. He was a charmer. He took you by the hand and led you to what he wanted to do, whether it was books or dress-up or wooden blocks. He was also sneaky. Sure David, you can have another cookie! Oh, whoops, they aren't supposed to have anymore cookies? David didn't speak much, but he never failed to get his point across. And that smile? Killer. Hmm...remind you of anyone?

Of course, the irony is not lost on me, how much my mother could have helped me with Leo, if she was still here, as a special education teacher, and of course as a mother and grandmother (my mother actually went on to teach "regular" elementary ed, but I'm sure she would have had plenty to add when Leo showed up).

Also, I can’t help thinking about my fourteen year old self, sitting in that huddle of preschoolers during story time. I had no idea what my future held, that my fortune held a child not so unlike one of them. Life is funny, isn’t it?

In those dark, early days after Leo’s birth, when I stared for hours at this little unexpected stranger with the extra chromosome, sleeping sweetly in the infant swing, I had countless one-sided conversations with my mother. Why did this happen? What do I do? What will he be like? What is he capable of? What should I expect?

And also? There was shame. Shame that I had not given her the “perfect” grandson.

Obviously I can only speculate as to what her reaction would have been. I think she would have grieved with me, but that wouldn't have lasted. In many ways, my mother was a very no-nonsense person. Not one to linger in tragedy (as I melodramatically viewed Down syndrome back then), her style was more to get up, brush yourself off and figure out What To Do Next. It’s no accident that one of the adages of hers that I repeat in times of trouble is “Every problem has a solution.” (Which is not to say that Leo is a problem, but when he was first born? Down syndrome was a big problem for me.)

Of course I know now that my apologies to her would have been more than unnecessary. There were so many years that she never thought she’d even have a grandchild, Leo was a gift, with or without Down syndrome.

At the worst, I think she would have worried. She would have worried for Leo’s health and worried about the added challenges that we would have with Leo (and that Leo would have). But if anyone were capable of loving a grandchild too much, it would have been my mother, who was unequivocally born to be a generous, doting grandmother.

I look at Leo today and I see the little David that Leo’s grandmother adored. And I also see glimmers of Leo’s grandmother, dancing around in his round little face, on his light brown hair, (grandma’s exact shade) and in his steely blue eyes and his cleft chin, the chin that is just like grandma’s.

She is never far from us, even though I know of course, that she is.

Wisdom in the Snow

It was the day after our most recent snow storm. Ellie was inside with Erin where it was “nice and warm” (Ellie's words, honest) and I was on the back deck with Leo, attempting to build a snow man.

We rolled the appropriate balls together for the body. We found acorns for eyes and buttons and dried sticks for a mouth and arms and a nose. Leo’s hat was lent to our little snow man and he borrowed my gloves.

And, as I often do at moments I want to document (either here or for a photo album or whatever), I whisked the camera out of my pocket and attempted to take a picture.

Leo is often camera shy. He shakes his little fist at me and stomps his feet and yells “NO!” adamantly. I usually respect his wishes (and go ahead and sneak pictures in when I can), but this snow man was so precious and the activity had been such a delight. I wanted to have proof of it.

That’s when Leo pushed the snow man down. Destroyed it. Down went the head. The hat was thrown across the yard. The stick arms were tossed away with total disregard.

I stood, frozen. Not sure what to say or do. It all happened so fast.

To be honest, I wasn’t even angry. Just sad. Why would he do that?

And my next thought was what I often think when Leo does something "bad" and I'm a little ashamed to admit it. It’s because he has Down syndrome. He wouldn’t have done that if he didn’t have Down syndrome.

This is, of course ridiculous. Because who knows? Who knows which of Leo’s behaviors are related to Down syndrome? I mean, I have my suspicions, but again, why does it matter? It’s just an excuse to be mad. Or disappointed. Or depressed. Or to play that giant, stupid, loomy, “What If” card.

And what of all the so called "good" Down syndrome qualities? I won't even go into that list as I don't want to perpetuate stereotypes. I know, I know.

When Ellie won't stop chattering and go to sleep at 10:30 pm, or when she refuses to close the refrigerator door and sit in her chair to eat the string cheese, do I sigh and say, Oh, it's because she has 46 chromosomes? Right.

Back to the snow man.

After what seemed like forever (mere minutes), after the Appetite for Destruction of the snowman incident was over, I just quietly and calmly said to Leo, Why did you do that? Mommy helped you build a snow man and he was beautiful. And I wanted a picture of you two together.

And do you know what Leo did?

He rebuilt his snowman. Every last little body part and limb. Quietly and quickly and wordlessly, he put him back together.

And he crouched down and posed for a picture, without even being asked.

He said "Chee." (His version of "Cheese.")

Oh sure, Leo can be a little hurricane sometimes. And oh does he have a temper. But ultimately, he loves to please. And he knows how to do it. And oh does he know when he’s disappointed you.

This scares me a little, because I know how critical I can be. I’m working on trying to be more patient. Less reactive.


I should take a lesson from Leo.

I think he would have sat for photos for as long as I wanted to take them. He only stopped posing because I put the camera away, finally (and I didn't even get the Geez Mom! expression once!).

When it doesn’t involve food, Leo is one of the most patient people I know.

Questions: Answered Offensively Late, Pt. One

Back in October, in honor of 31 for 21 and National Down syndrome Awareness Month, I opened up my blog for questions. About anything. And I answered a few. And then I totally dropped the ball. And I’m sorry. One of my New Year’s Resolutions is to be more on top of things. To not let things hang. To finish things and be done with them and move on. Yes.

I hope no one was hanging on the edge of their seats waiting for me to answer these insightful questions, which I really enjoyed reading and so appreciate people taking the time to write. And After Words, I especially apologize to you since your question had a bit of a time element, as the child you wrote to me about might already be driving or graduated from college. Sorry for the delay. Sidenote: Did you ever talk to the family? I'd love to know how it went.


After Words asked,
Do you think it's appropriate if a stranger on the street asks you about Leo's DS? If yes, what form would you prefer the questions take?

I have an acquaintance with a son whom I believe has DS. There's no particular reason I need to know either way--he's a lovely playmate when we run into him at the playground--but I always find myself wondering when we see them. Again, I don't know what would change about our interactions if I knew the answer to the question, and it seems gauche to ask it. What do you think?

This is a tough one. Part of me wants to say, go for it. Ask away. I would rather people be honest than sit and stare at Leo and wonder. There is also the education factor. Leo doesn’t have to be the Down syndrome Ambassador of the World, but there is a good possibility that Leo might be the only person with Down syndrome that some people meet. I don’t want people to forget him (and hopefully they’ll remember him for good reason, not bad!) and I want people to learn something from him (hopefully something positive, that he’s not a monster, that he’s just a smart little boy with a great sense of humor who takes a bit longer to do certain things).

Having said all that, I admit that after over five years parenting a child with Down syndrome, I am still terrified to ask a parent if his or her child has it. I am serious when I say that I sometimes just can’t tell.

I chalk this up to the fact that I am so accustomed to Leo and his peers with their extra chromosome that seriously, they have started to look “normal” to me. Oh sure once in a while I’ll catch Leo with that look, and it’s unmistakable, but honestly, I think it’s sometimes really not safe to assume. It’s the same idea as never asking a woman if she’s pregnant (what’s that joke about how it’s only okay to ask in the delivery room?). You’d really hate to be wrong.

So Afterwords, here’s what I’d do. I’d ask the parents where the little boy goes to school (assuming he’s school aged, keep in mind many kids with DS start school as young as age two in an early intervention program as they transition to school-age programs). That will undoubtedly get the the ball rolling towards more info on the little guy. It seems to me it would just naturally spring from there.

Obviously some parents are more open, some are more guarded. Probably no surprise to hear that if you met me at the playground I’d talk your ear off and you’d be sorry you ever asked me anything.

I hope that helps.

Gratuitious photo of Mr. Handsome and me.

And Leo and his classmates, from a bulletin board during the holidays at Leo's school which I have titled "Visions of Sugar Plums And Other Things."

From a Syndrome to a Son

It’s hard to write about Down syndrome every day.

I know that’s not the rule during 31 for 21, but I feel obligated to at least address it, as much as I can.

And like others have said before me, I think the fact that I can’t write about it every day says a lot.

Yes, Down syndrome is a part of our life, it’s a part of who Leo is, but it doesn’t define him.

This wasn’t always the case. There was a time when I thought about Down syndrome nearly all the time. There wasn’t a day that I didn’t wake up, roll over and think “my baby has Down syndrome.” And yes, I was sad about it. I'll go ahead and say that I was full-on depressed about it. I woke sad and I went to bed sad.

In the mothers pushing the designer strollers through my Brooklyn neighborhood, I saw everything that I lacked. I didn’t get the “perfect” baby. While other babies started to sit and crawl and pull up, mine wasn't doing anything when he was supposed to. And I wondered if he’d ever do anything. Or if I'd ever feel like my old self again. Or if I'd ever think about anything but Down syndrome and how much I hated it.

But somewhere there was a shift. And I credit Leo for much of this. Sure Leo is challenging sometimes (what kid isn’t?). His language delay certainly complicates our communications. He gets frustrated. We get frustrated.

I hate that Leo requires annual blood draws to check his thyroid and CBC, that he has a 20 percent chance of developing leukemia, that for a few years we had to take him to the ENT every six months, eliciting hysterical cries from him when he had to be held down and examined (I think I still have some bruises from those brutal appointments). I hate that he had to have eye surgery at age three. I hate how raw and red his cheeks get in the winter time. I hate that Leo is five and he still often runs away from me in public places. Yes, I attribute all these things to Down syndrome.

But ultimately, I think the good outweighs the bad. And Leo is just Leo. He is a champion hugger. He loves to laugh and entertain. He is turning into a great little student who works hard in school and delights in pleasing his teachers and therapists (he's way better behaved for them than he is for me!).

Leo is a boy who happens to have Down syndrome. When you first get the diagnosis, whether it’s prenatal or you’re staring down at this foreign little newborn, it feels like all they are is a diagnosis. The baby is just Down syndrome personified.

And somewhere along the line they become people. With strong preferences and opinions. With senses of humor and preferred people and places and animals. The babies who love frozen blueberries and vanilla yogurt and crinkled up newspaper become little boys who love scrambled eggs so much that they eat them with their eyes closed. They become little boys who like to zoom around the house in a super hero cape, and play “Murderball” with a doll stroller. They become little boys who like to bake pumpkin bread and take their dog on a walk. They become little boys who flat our adore their little sisters (because teasing and torment is a sign of love, right? Right?).

Now when I wake up in the morning, I’m just grateful if the kids are still asleep (anything that will buy me fifteen minutes of peace to make breakfasts and lunches) and that the dog didn’t have an accident in the dining room and that I remembered to buy half and half for my coffee.

Most days, Down syndrome is really the last thing on my mind.

Asked and Answered, Round One

In my call for questions last week (the floor's still open if you think of any), Suz at (S)mothering Suburbia asked:

“We have some good friends who have a daughter with DS (she is Leo's age) and I don't want to offend but am interested in how their daughter is doing (just as I am about their son who does not have DS). I feel a little uncomfortable only because I don't want to hurt anyone's feelings - do I ask about the DS specifically, or ask generally how she's doing?”

This is a great question. I definitely think it depends on the person who it’s being asked of. I’m a very open person, sometimes probably to a fault, but generally speaking, I like talking about Leo. I appreciate when people want to know how he’s doing, what he’s up to. While I don’t feel that I need to be the “poster parent” for Down syndrome, I do feel a bit of a responsibility in the sense that I know there are a lot of misconceptions out there about Down syndrome. Leo might be the only person with Down syndrome that people ever meet. This is not to say that Leo needs to stand for every person with Down syndrome, but I like the idea of Leo putting a human (and pretty darn cute, if I do say so) face to something that is so often feared and thought of as a tragedy.

I think a general, “how’s x doing in school? Where does she go? What’s the program like?” is a good start. I imagine the conversation will take off from there and it should be easy to gauge how open the parents are to talking about their child. Some people are more open than others, Down syndrome or not.

Suz also asked:
“In a broader sense, what types of questions do you think are offensive to ask a parent of a child with DS? What do you wish people would ask?”

My all-time number one, most hated question is without a doubt:

“How severe is the Down’s?”

Just, yuck. And also? Please don't call it "Down's." Or "the Down's." I've even heard medical "professionals" refer to it as such, in fact they do so a lot. It's Down. After John Langdon Down.

And I have been asked the "how severe?" question a lot. And I know that people mean well, but it is not a good question to ask. It's impossible to answer since most kids with DS have an incredible range in their abilities. Leo happens to be speech delayed but he can write his name and sight read dozens of words. And he can run like the wind (trust me). So how do I answer the "severe" question? And really, who cares?

Another question people like to ask, which does not bother me but might bother some is “Did you know about the DS in advance?”

It’s a totally fair inquiry, maybe bordering on a tad personal, but nonetheless I have been asked it many, many times. That would be your call, not sure how close you and your friend are.

Which brings me to another “what not to say.”

Do not ask, "if you’d known about the DS, would you have had him/her?"

This actually happened to me. And it upset me for weeks afterward.

Sometimes, I’m convinced that people Just. Don’t. Think.

And also, I like People First Language. It can get a little cumbersome and annoying and overly PC-sounding sometimes, but I just appreciate the idea that people are people before they're "labels."

Jane is not autistic, she has autism. Leo is not a "Down syndrome boy" or a (even worse) "Down's child." He is a boy with Down syndrome. He is a boy, first. You know what's funny? Those aforementioned medical professionals are some of the worst people with this. They love to label. I'm sure because it's quick and easy for them to use shorthand with everything, even people, but come on. Take the time and use the extra few words.

Do you know what no one has ever asked me that I really wish they would?

"What do you wish you had known after Leo was born that you know now?"

For that question, I think I could write a book.

Thanks for the questions everyone! More answers to come.

The “H” Word

While waiting in line to park the car at the game on Saturday, the esteemed parking attendant took one look at smiling, waving, grinning, about to burst with I’m Going to a Real Football Game Excitement Leo and said:

“You should get a handicapped permit. For the kid.”

I know she was just trying to help. I don't think she meant to be rude. But for some reason, that advice? It just hit me right in the gut.

It sounds silly, but I think there’s a small part of me that often thinks people don’t notice Leo has Down syndrome. And really, I’ve had many people even say that if they didn’t know, they wouldn’t have, well, known.

Sometimes I think the Down syndrome is completely obvious. Other times, especially in photographs with other family members, I’m blown away by how much Leo looks like us. The whole adage “more alike than different,” it’s really true. And I see it in other children with Down syndrome too, the faces of their family members, comingling in their faces, along with yes, that "extra."

In other instances, I really see the Down syndrome. I mean, yeah, Leo has Down syndrome. I’m pretty much done with that game I used to play, when at a large gathering with other DS folks, I’d compare (but not really in a "good" way). Does Leo look “more” like he has DS or less? I know, silly. Like it matters. I mean, an extra chromsome is an extra. It’s done.

But the “H” word. Handicapped. I don’t know why it stings like it does. I mean, technically, yes, I guess Leo is handicapped. And like the old Seinfeld saying, there’s nothing wrong with that.

Certain things are harder for Leo. He needs a little extra help. No big deal and it’s just the way it is. It’s just like how I barely passed high school math and to this day know that if pressed there is absolutely no way I could do my own income taxes. And don’t even get me started on trying to put together anything made by IKEA.

I guess it’s just that when I think of Leo, I think of all the things he can do.

Leo can:

-Say the alphabet
-Sight read (what IS sight reading? Don't we all sight read?) I think, 50 words. Some examples: see, ball, horse, car, yellow, pig.
-Breaking News: He can read a sentence! "I see a yellow horse." I just discovered this tonight. I almost cried! My boy!
-Write his name (first and last)
-Count to 20
-Torture his little sister in innumerable ways
-Drive his moms batty
-Turn on the television and put it in a DVD All. By. Himself.
-Go into the refrigerator and choose what he would like to eat. A recent meal request was: grapes, orange soda and eggs. Don’t ask.
-Put on several paris of pants at once. This morning he woke up early and put on not one, but two pair of swim trunks, then proceeded to put his pajamas back on, over the swim trunks. When I asked him if he was having a fashion crisis, he answered “Yea.”
-Be very afraid of thunder, lightening and the dark. I think it takes real intelligence to be afraid.
-Be extremely patient. Sometimes I don’t understand what he’s saying and he will calmly repeat over and over the word until his slow Mommy understands him.
-Be extremely impatient. When he wants grapes or Dora, he wants them NOW!
-Water the garden. He loves anything involving a hose.
-Help out around the house. He loves to take out the trash, throw garbage away, set the table.
-Get really, really aggravated with the amount of pictures I try to take of him. Case in point:

-And the list goes on and on.

And that just doesn’t sound all that handicapped to me.

Will we get a parking sticker? I don't think so. I think it would be more fair to save those for the people who really need it. Leo loves to walk. He also loves to run. Quickly and away from me.

But that’s a whole other post.

To Come: A Solid Month of My Rants (At Least That's the Goal)

A chill is in the air (here in the tristate area it feels like we went straight to winter!), Pumpkin muffins and lattes are on the menu and scarecrows and pumpkins are out and about in the 'burbs. And this morning marked the start of having to wrestle my children to the ground just to get the coats on. I forgot how fun fall and winter can be!

All of that to say...

Must be time for 31 for 21!

For the next 31 days I will do my very best to blog daily, in honor of Down syndrome, sometimes about Down syndrome, sometimes about the latest pair of shoes I'm coveting or the television show I once again didn't get to see (although thank goodness for the DVR which means I'll watch it, someday) or perhaps I'll just be naming the price at which I'm willing to sell my children.

I hope you'll join me!