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.


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It Just Never Gets Old

Note to self about the above: Never forget how far we've come.

I surprised myself yesterday, at what was, I believe Leo's third "non-freakout" haircut. It's been almost a whole year since he first allowed someone to cut his hair without protest, without huge amounts of bargaining and bribing and brute strength. Longtime readers know, I cried actual tears that day.

And yet...yesterday, as I watched my "big" boy serenley play a Toy Story video game (his first video game--not counting iPhone games--he was in heaven) I still felt a little choked up. A little emotional. I didn't expect to feel that way. I'd dutifully packed the iPad (which is what had originally seemed to relax him, seemed to help him turn that corner of fear and sensory and who knows what else)  and yet, when asked if he wanted to watch a dvd or play a game? Leo chose game. I didn't even have to take the iPad out of my purse.

I briefly wondered if he would be upset when the cut was finished, that he'd have a hard time stopping the game--did we inadvertently add a challenge to what might be a potentially precarious situation? But no. It wasn't a problem. That was the Old Leo. The New Leo simply tossed the cape aside and hopped out of the chair (not before admiring his handsome self in the mirror first). OK, Leo did hug the stylist and tell him he "wanted to marry him" but hey, we pick our battles.

It's such a cliche, but it's true. Seeing how hard certain things are for Leo, knowing how long it takes for him to master certain tasks...it just means that when they do come, when he is successful, well that just never, ever gets old. And I never stop appreciating it. I wish things didn't have to be so hard sometimes, for Leo (and for us as his parents), but what I do feel extremely fortunate for is the fact that all those struggles have led me to appreciate the little, mundane tasks that are now so blissfully uneventful. A haircut. Imagine that.

Yesterday, Leo's biggest challenge? To squelch the giggles. From the tickle of scissors and stray hairs.

All those doctor and dentist appointments and haircut attempts where we exited in tears and knots of stress and grief and frustration: poof. Gone. I know friends who still struggle with this with their children and I know how hard it is and I know how painful it is to see other parents who completely take for granted the simple act of a trip to the dentist or hairstylist.

It's going to be OK, I say. He'll outgrow it. She'll get there. People told me this and I wanted so desperately to believe them. But sometimes? Sometimes the only way out is through.

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?

Too Loud

Say you have an otherwise adorable, mostly sweet little boy who sometimes decides things are “too loud.” And we’re not talking rock concerts or crowded festivals. We’re talking empty restaurants and bathrooms and bedrooms.

Since you are a worry wart, worst-case scenario type who tends to catastrophize (my new favorite word, thanks grandpa , for the reminder), you immediately start Googling “sensory issues” and “delayed autism” and “behavior modification.”

You email Adorable Boy’s teacher, the same one who let him wear headphones in the lunchroom last week because it was pronounced “too loud” and urge her not to make this headphone thing a habit.

Then she emails you back and says she doesn’t think it’s sensory at all, since Adorable Boy refused to go the bathroom yesterday, declaring it was “too loud.”

I believe this is a behavior issue, said Adorable Boy’s teacher.

I have to say I’m relieved.

Or maybe, it’s as Erin refers to it (and leave it to her to add some much-needed levity to the matter), it’s just Leo being a Little Shi*.

Whatever it is, Leo is certainly keeping us on our toes lately.

All in all, his mood is great. Dare I say, back to his old self, when it comes to the day-to-day? I’ve added fish oil to his daily regimen (after hearing from other DS Moms and reading a few studies claiming that it may improve mood as well as brain function-hey it couldn’t hurt, right?).

But Sunday, after a long, exhausting Saturday that included for Erin, supervising the tiling of a bathroom and for me, hosting an extraordinarily lucrative garage sale (all while both of us supervised the hooligans and made sure they didn't escape with any of the garage sale customers), we decided to celebrate by all going out to brunch, which we rarely do.

As usual, Leo didn’t want to leave the house (who could blame him really, it was a dreary, rainy day and to be fair the poor guy is go-go-go all week at school and after care). He was fine once he got in the car and was fine as he walked hand-in-hand with Erin up to the door of the restaurant and then…he collapsed in the entry way, right next to the hostess stand.

“Too loud,” Leo said, covering his ears.

Keep in mind we were literally the first customers of the day. The only people there were employees.

Twenty minutes later, Leo finally came to the table.

Did you know it’s possible to eat an entire brunch with one hand covering an ear?


It is. Just ask Leo.

So I will add this “Too loud” business to the list of things that Leo does that I just don’t understand. And I will tell myself that it’s ok. I don’t need to “get” everything. But I wish I could help him.

And now I'm off to Google Little Shi* Syndrome.

Hair by the Village, Finally Spring and Two Steps Forward And...Well, You Know

1. Leo's hair.

It's so much better than it was! (Please pay no mind to the odd "There's Something About Mary" cow lick that Leo woke up with.) Mrs. E. finally broke out the clippers yesterday (according to Leo's teacher, being a professional, Mrs. E. felt clippers were the only way to really make it look "clean.") Apparently a Zhou Zhou Pet was just the ticket to distract and calm Leo while the clippers were doing their job.

2. After an initial good week behavior-wise (such a good week that we've decided to hold off on the behavior specialist after an email from Leo's teacher in which she pointedly said "I don't think Leo has a behavior issue") Leo's teacher emailed me today to say that he refused to go into the cafeteria for lunch because they arrived late and it was fuller than it usually is and therefore deemed "too loud" for Leo. It took almost all of the lunch period to get Leo into the room and this was only after Mrs. L gave him headphones to wear.

Oy.

I realize this is not a behavior thing. It's that blasted sensory crud. It makes me feel so helpless and frustrated. The thought of Leo wearing headphones during lunch does not make me happy. I mean, I get that you do what you have to do and I'm all for whatever gets you through the day, but really, doesn't he have enough strikes against him? Headphones in the lunchroom? He has to be that odd man out? Filing this under information I sort of wish I didn't know.

3. Enough of that for now.

4. It's finally spring! I'm enjoying the warmer days and nights and reveling in the mild temperatures. The heat can't be far away. Every morning and night on the way to and from the car Ellie has to stop...


and smell the flowers.

I think she's onto something.