Those few of you in my inner circle know how I write pages for CTMQ. I think about what I’m going to write maybe in the car or shower, gather any materials or websites I’ll reference, sit down and type fast. I write them very quickly; never really proofreading or stopping along the way. I may wait a day or two (or more) before uploading the pictures and formatting the page, but my goal is pretty much just to publish it and be done with it. (I’m a blogger, not a journalist, after all.)
Then there’s these once per year Damian updates. This is my third or fourth go at it over the course of the last six months or so. Heck, I’ve only written two and they really aren’t all that well thought out. It’s just that I actually care a lot more about what I write here than elsewhere even if most people just want to see some pictures of Damian looking cute. (By the way, please poke around the site. Damian is EVERYWHERE.) And that’s fine; it doesn’t bother me a bit. At least it didn’t bother me in the past…
SMS & Damian: The Difficult
Damian is four and a half years old as I write this in July 2010. We have now been living for over two years with the ever-present looming storm cloud of his Smith-Magenis Syndrome. And to be brutally honest – something sometimes lacking in the special needs advocacy community – it sucks. It really, really sucks. Oh sure, the platitudes you often hear do apply. They absolutely apply. But sometimes lost in all the feel-good rhetoric about “small victories” and “boundless love” and “He’s so smart” is the fact that Damian is afflicted with an insidious and incomprehensible genetic disorder with no “cure” (in the conventional sense) and it affects me and Hoang on a constant basis. Every day. Every hour. Every minute. It’s not just Damian who has Smith-Magenis Syndrome… All three of us have it now. Hoang and I are as affected by SMS as Damian is. Now that’s a punch in the gut. And as I said, it sucks.
(Sorry about the language mom.)
What? You’re surprised to read that? See, that’s the thing. It’s often much easier for us to revel in Damian’s ridiculous amount of charm and to get lost in his deep dimples and belly laugh. Those are the stories people like to hear and read about. And, quite frankly, those are the stories we like to talk and write about. They are also the stories we cherish and hang onto and rehash just about every single night. We have to. They keep us positive and sane.
So why all the negative to start this off? I don’t know. We’re actually coming off a “good weekend” and a “good morning.” I’m often struck by what that means in our world. Hoang and I update each other constantly with how each segment of our Damian-day went. Let’s take my first email to Hoang at work today, July 27, 2010 as an example: “Pretty good this morning. He ate all of his breakfast in about 45 minutes and we read a couple books together. Instead of saying just “uh” for “up,” he actually added the ‘p’ sound at the end! I praised him and he clapped for himself, but when I asked him to do it again, he got sore at me, shook his head “no,” and knocked over his juice out of spite. Put on his shoes fine, but when I tried to brush his teeth he ran away yelling and begin punching himself in the head. But he got over it quickly and was fine at drop-off.”
That’s our normal. That’s what constitutes a “pretty good morning.” (Please bear in mind we have just as many “perfectly fine mornings” as well.) When you live that every day, and the quirks and violence of SMS fail to make any more sense today than they did yesterday, you find yourself in a parallel life that you sort of unintentionally shield from the “typical world” and you start falling back on the feel-good platitudes. It’s just easier that way.
But know this: Every parent of a special needs kid, to some extent, lives in this protective bubble. And when that parent has a kid with an extremely rare and difficult to explain syndrome, that bubble is thicker and usually less permeable to the outside world. The outside world often doesn’t want to hear too much of what goes on inside that bubble and the parents get exhausted talking about it. So maybe that’s what this section of the essay is for me today: Catharsis.
Before I continue, let me be very clear about a couple things: There are many, many families with far, far more difficult issues beyond their control. In fact, as far as SMS goes, Damian is actually doing really, really well. Physically, he has no health issues which is fairly rare. Behaviorally, he is trending better than the SMS-norm. He sleeps better than he’s SMS-supposed to. He is on no medications for sleep or behavior, as many SMS’ers are. He does relatively well in his special needs preschool and they love him at the typical daycare at which he spends his afternoons.
In fact, everybody loves Damian. He’s apparently known as the “Mayor” of his school (which goes up to 3rd grade with typical kids) probably for a variety of reasons. Everyone there knows him and to know him is to love him. (This is probably because walking 100 feet down the hallway for Damian could take 10 minutes, after he stops every adult walking by to tell them, in his Damian way, that they are wearing glasses and have a red skirt on. And that makes TWO skirts in the hallway at that moment. “T! T! T!” with two fingers proudly thrust into the air, perhaps followed by a triumphant clap. And trust me, his observation simply must be acknowledged and confirmed. If no people walk by, he’ll be sure to tell his aide that the stairs over there are “Boo”(blue) and they indeed go “Duh, duh” (down) and on and on… It’s part of his charm. )
Backing up to the part where I said some of what I do on CTMQ bothers me a bit. And this is a bit of the “catharsis” thing too… I sometimes feel like some of my posts are a lie. Doesn’t Damian look like a cherubic bowl of cherries in all his pictures here? And even when he’s not, he’s just so darn cute that it doesn’t matter, right? Well… No. That’s wrong. Now, of course I’m not going to post a bunch of pictures of Damian in the throes of his nonsense (as we tend to call it), but I do often ignore it when describing our visits. That’s just not fun to read and it’s not how I want to remember the stuff we do in the future. But I think what bothers me, and Hoang thinks I’m a little crazy on this point, is that if one were to read CTMQ for 3 hours someday they may walk away from their computer not only a much smarter and better human being as a result, but also with the presumption that we just have the perfect little family with the cutest little kid.
And that bothers me for some reason. I’ve become a bit of an advocate recently both within the tiny and tight-knit SMS community and in the world at large. I no longer sit passively if someone calls someone or something “retarded.” I want people to know about Damian and about SMS. Neither Hoang nor I ever felt embarrassed about it at all, but I just feel like hey, this happened to us and it can happen to anyone and let’s all learn a little bit about something you never considered before today, okay?
Hoang and I have just reached the point of being comfortable with all this. Yes, it took a couple years and no, it doesn’t mean it won’t change soon. Believe me, we worry about what will happen as we all get older and Damian gets bigger and stronger. I made a promise to myself a few months ago that I’ll stop ending sentences about Damian with “for now,” but really, we’d be foolish not to worry about the future. And we’ve come to grips with other aspects of our shared future.
Another SMS parent has written an excellent piece on her own blog about her transition from the diagnosis to getting comfortable with it. I thought this bit really captured something that hit us hard – and something that people, for whatever reason, feel the need to argue about:
[Re: The SMS Diagnosis] “That was our family’s defining moment. The day we became different from all of our friends and family. That was the very instant we lost our adult son, the man we thought would be Garrett. Little league, driver’s ed, high school prom and college graduation were all past dreams. We lost our daughter-in-law and our grandchildren. The sadness was overwhelming.”
“Oh, you never know, he could…” say the well-wishers. No. That’s the thing: We DO know. Damian will never drive or go to college or get married and have children. He will never live unassisted. Personally, I always daydreamed of hiking, playing hockey and going to UConn football games with my son. While I will probably do all three with Damian, it won’t exactly be as I’d imagined. This isn’t me being pessimistic – this is me be realistic. And being realistic, for us, is very important.
Along those lines, Hoang and I spent several months earlier this year with an excellent financial planner who specializes in special needs planning. To any parent in our situation reading this: Please, get off your duff and do this! It’s imperative. Setting up a Special Needs Trust gave us our first real sense of peace regarding Damian. Instead of having the mindset that we must take care of our child for 18 years plus college, we have had to shift to realizing that we have to take care of our child until he dies, which will very most likely be after us. It wasn’t fun, but it still felt good somehow. A real will, two individual life insurance policies, and a Survivorship life insurance policy that funds the Special Needs Trust. As long as we keep up with the premiums, Damian should be okay, even if this paragraphs bored him to sleep (to the right).
If anyone has questions about all we did, just shoot me an email. I can’t emphasize enough how important I think this is to do for families in similar situations – and how much misinformation and bad decisions exist out there.
Phew. I hope I haven’t ruined your day. I think the main reason I procrastinated so long with this page was because I knew I wanted to “keep it real” but didn’t know how to do that. Perhaps it’s time to brighten things up a bit…
SMS & Damian: The Good!
Damian is the best thing in the world, the best thing to happen to us and fills us with a love beyond description. Despite everything above, he never fails to make us smile. We’ve invented a new word in our house to describe an emotion heretofore unknown to us: To “smy.” Smy: verb An almost indescribable facial expression and emotion characterized by an upward curving of the corners of the closed mouth and indicating pleasure, sadness, amusement, struggle and joy. This happens when Damian does something cute but perhaps more age-appropriate for a 2 year old. Or when we hear a story from daycare (and this is a true story) where the teacher was reading “Five Little Ducks” and when the 5th little duck gets lost, Damian absolutely lost it; crying and sobbing uncontrollably and reaching out for comforting adult hugs because the Mama Duck lost all her baby ducks. You see, you probably just smied a bit.
It’s not something we have gotten used to quite yet.
This is one of OUR favorite pictures of D. (He’s totally goofing around making faces, not sore.)
Damian, as is common with SMS’ers, has an incredible amount of empathy. Of all the quirks of SMS, this is one of the most fascinating to me. Like the story with the ducks, he’ll often cry along with another random kid who doesn’t want his mom to leave or if Hoang is watching some lame chick movie and the character on TV is crying. What’s weird is that he doesn’t do it for physical pain, only sadness – he knows the difference somehow. I broke my toe a couple months ago and yelled out in pain and he ignored me. But when I got our town tax bill in the mail, opened it and I fake whimpered, there he was by my side on the verge of tears offering a hug.
I figure this unedited empathy of his is directly related to his unedited temper. Somehow, in some crazy way, missing that tiny part of his 17th chromosome not only gives Damian flat feet and a heavy brow line, it also gives him the permanent emotional control of a toddler. (Not to mention the wacked out sleep disturbances, lack of speech and a whole litany of other stuff you can read on the other SMS pages linked to the right). It’s crazy.
Hoang implored me to recall some funny Damian stories for this page. That’s hard for two reasons: One, there are so many and two, they are all very subtle and difficult to explain. SMS is a devilish mistress I’m afraid. He cracks us up simply by being Damian. The way he watches TV – fully animated and as excited the 4 billionth time he helps Blue find the Clue as he was the first time. The way he is supremely confident that we passed four dogs on the trip to school, when in fact it was six, but our mere suggestion that he was wrong evokes a look saying, “Papa, you are absolutely INSANE for suggesting such an impossibility. On and on. Once you get to know him, the boy is a ham.
Everything in the world is related to Damian-world. One time he was with Hoang strolling about town and came across an elderly gentleman wearing an eye patch for some health-related reason. Damian noticed him (of course, Damian notices everything when you haven’t the time and nothing when you want him to), stopped in his tracks, got Hoang’s (and the man’s attention) pointed at his patch and did his best Captain Feathersword (from the Wiggles) swashbuckling pirate-inspired arm swing across his body. The poor old gent, of course, didn’t get it – but man, Hoang had quite the difficult time keeping it together enough to politely scurry Damian along.
Ruined iBook? Eh, what’reyagonnado?
Since Damian is non-verbal, and his pantomime and sign language skills are largely his own making, we have to be incredibly intuitive. Damian’s memory for past events (even though he can’t take off his shirt or be trusted with a cup of juice yet) is amazing. Drive past a park we swam at 2 years ago and suddenly there’s Damian in his car seat whispering “Pa Pa” and slapping his knee saying “Da! Da!” (dog) and then signing “Walk” with perhaps his sign for “swim” thrown in. Yes Damian, Papa took you there and you walked around with some random dog and swam once. Oh yes, “there is a red swing there too, that’s right.”
Or, just the other day I took him to a Hartford Whalers Fan Fest and while talking to the coach of the Chicago Blackhawks, who recently beat my favorite team the Flyers in the Stanley Cup finals, Damian was just standing there eating a cookie, off in his own world, attracted to the large electronic billboard across the concourse. Then, out of the blue, mid conversation he started grunting to get my attention and holding up his # 1 finger saying, “Vwuh, vwuh!” (One.) Coach Quenneville gave Damian a friendly smile until I told him that Damian heard me say “Flyers” and was letting us know that they are “# 1.” With that, Coach smiled and crouched down and said that Chicago was actually number one this year (It was very nice of him, by the way). Uh-oh. Damian stomped his foot, shook his head and said “FFfffff” (Flyers) and held up his pointer finger.
I couldn’t have been more proud.
Damian’s affinity and abilities with all things electronic (another typical SMS quirk) continues to this day. He’s mastered all his electronic games and believe me, he can operate our three TV’s, two DVD’s, one VCR, desktop iMac, laptop, Flip Camera, two cell phones, 2 digital alarm clocks, two digital cameras and four remote controls – dare I say – way better than my engineer father can. To watch him navigate on the laptop is simply amazing. He’s so deft with the mouse and seems to intuitively know where to go online and how to get out of any issues. (Unfortunately, when he can’t, that’s cause for a meltdown but nine times out of ten, he figure it out with his little tongue poking out.)
I think the “best” thing about SMS – as related to other special needs – is that Damian has fun. He loves making people laugh. If he gets a laugh, he’ll keep doing it and crack himself up in the process. My heart breaks for parents of some autistic kids who simply never or infrequently experience that. Seeing your child, though he may struggle mightily, belly-laugh and roll around with unbridled joy has the ability to melt away hours of difficult behaviors in an instant. I don’t care if he’s still doing that at 25. If he’s happy, we’re happy.
And frankly, Damian’s happier now much more than not. We are very, very lucky in this as many SMS families cannot say the same. Damian sleeps better than perhaps 99% (no exaggeration) of other 4 year old SMS’ers. Damian gets over his tantrums quicker than perhaps 90+% of other four year old SMS’ers. We don’t know why. I will say that it just must be a combination of many, many factors – both nature and nurture – and we are fully aware of this.
In fact, we don’t really post much on the various SMS Internet sites because a lot of the issues other families face are not relevant to us right now. Oh sure, they may become so tomorrow – but after two years of saying that, I’m starting to allow a more optimistic attitude creep in. C’mon Damian, make us proud! (And give me a reason to go to the next SMS conference to tell all those “Just you wait” people to stick it in their collective ear.)
Upon reflection, I realize that we are also lucky for this. This blog. In a funny, but very real way, going to all the places for this blog has been great for us. Damian thrives on doing “stuff” and going places. Meeting new adults and “showing off” is his bread and butter. He demands constant activity and is almost always perfect in the car. He gets excited to go on Adventures (yes, like Dora and Diego) and it keeps us from sitting around the house just waiting for the next meltdown. (He’s far less apt to have one in mixed company.) While it gets tiring sometimes, it feeds my hobby and keeps Damian doing things and exposes him to new experiences all the time.
I love it, he loves it – and most readers seem to love it. A win all around.
But what does Damian love? He loves music – all kinds of music. We usually have to secretly spy on him to watch him toe-tap or dance though, but that’s okay. We listen to jazz on the way to school each day and he loves recognizing the instruments and miming playing them. We gave him his own little CD player and there are times he’ll just occupy himself with it and his CD’s for an hour or so (“Banana Phone!”). Damian loves “helping” us cook in the kitchen. Damian loves adult attention (typical SMS trait) and once gained, he’ll keep it. He loves model trains and swimming and birds and bananas. Damian (usually) loves moderate-sized gatherings of random people, and is almost always well-behaved at them – so well behaved that people often think he’s just a typical, if quiet, 3 year old. Most of all, Damian just loves.
We are not numb to Damian’s SMS. Watching your child struggle with inordinately simple tasks or unintentionally intentionally hurting himself hurts us as parents the millionth time as much as it did the first time. All we can do is to keep doing what we’re doing, seek out the best methods for controlling his behaviors, continue to educate his caretakers, and love and support him unconditionally – and I mean unconditionally.
After all, that’s all he knows to give us.
So we gave him a little brother in 2011!
michael saysAugust 18, 2010 at 10:58 pm
Great post as usual!
Fran Gibbs saysAugust 19, 2010 at 9:49 am
All so true – thank you for putting it in words.
Sam’s Nanny Fran
Debbie saysAugust 20, 2010 at 2:36 pm
Thanks for the update, and the great pictures. I admire your honesty.
Amy H saysAugust 24, 2010 at 12:45 pm
As usual, I immediately devoured this post and the accompanying photos. Thanks for the update, and for your willingness to share your family’s experiences. You’ve always been a great writer, but this piece is truly amazing.
Catherine L saysSeptember 7, 2010 at 9:59 pm
Hi Steve and Hoang,
I must admit I haven’t had the time to check out CTMQ for well over a year and when I saw the email come through I went straight to check it out-what a beautifully written and emotionally-heart-tugging piece.
I can tell this last two years must have been pretty hard on both of you and you handle it all with incredible patience, kindness and lots of love for your beautiful little boy-Damian is a lucky little boy to have such wonderful loving parents.
Ben saysOctober 1, 2010 at 8:32 pm
Thank you for writing this.
Karen saysMarch 9, 2011 at 12:14 am
I connect to your blog & your life on so many levels…Let’s see:
1) I found you because I was searching for my husband’s academic supervisors’ mother’s house in Simsbury — last name Cathles, which led me to your mention of the Cathle’s trail in your other blog; wow, part 1!,
2) I am a museum planner and evaluator, so naturally I shot over to the museum blog and had fun seeing all the places I’ve been/worked, and those I haven’t; my family traipses to museums all over CT, too!
3) my husband is a geologist, who leads field trips all over CT, and I’ve already sent him the link to your trail blog;
4) my family lives in West Hartford!, and
5) heart-wrenchingly and still unreal after 11 years: we have two healthy children (8 & 14), and one who died of a rare genetic disorder in 2000…We, too, know the beauty and pain of life with a “special” child…
Whew, so I guess I was meant to find you & this site, and please send an email if you want to communicate!
Leeann Stevenson saysMarch 22, 2011 at 7:43 am
Thank you for writing such an interesting piece, it reflected so many of my own positive and negative feelings about my SMS daughter Lily (4 years). I find I am constantly battling with myself about these issues. On the one hand Lily contradicts her syndrome by achieving things like reading and numbers (anything logical) above and beyond a child labelled with ‘special needs’ and actually above many of her ‘typical’ peers. However, on the other hand she needs constant supervision and is less able to do the every day things like dressing, cleaning teeth etc that so many of her ‘typical’ peers have no problem with. Our ‘good days’ are basically days without tantrums or difficult behaviour which leave both my husband and I utterly exhausted by the end of the day (but usually with a smile on our faces).
Damain is very lucky to have such caring, loving and understanding parents which is clearly having a hugely positive impact on his development.
Ica saysSeptember 3, 2011 at 7:57 am
I have found your page through Ryan Marshall’s. And I have read all your posts about your adorable son. I love the way you write about life with Damian, such an amazing though hard experience. It’s quite a lesson for other parents, and not only for those who are dealing with a special needs child. I admire you for the way you and your wife handle this. And watching the pictures I can tell anyone can simply fall in love with Damian. And as someone just said above, Damian is truly lucky to have you both as parents.
Thanks for sharing this.
Stepho saysDecember 16, 2011 at 3:49 am
I found your site by accident while looking up an old local legend on Google. I have totally enjoyed and become enthralled with your site! I am constantly trying to think of something to do that is different and will possibly allow us to enjoy a nice day. Then after reading a bit and seeing plenty of adorable pictures of Damian, I read something about how you avoided a tantrum – or something to that effect. Anyways, I was immediately drawn in, as I am to any sign of a developmental disability story/person (I’ve always been this way…who knows why.). So, I found your few writings dedicated to Damien and I am just so moved. Damian is so many things, but he is 100% LOVE! Thanks for sharing and I’ll be on the lookout for 2011’s update!! Prayers of peace and happiness heading your way, you’re already blessed with all the love you need!
Faustino Gonzalez saysJanuary 7, 2013 at 8:57 pm
As a newbie to the the SMS community (Our first grandchild was just diagnosed with SMS) I found your your blogs to be enlightening and realistic. Is there an update after the 2010 blog?. We feel that our lives have changed just as much as our son’s and our daughter-in-law’s. Your writings have given us the wake up call and we will step up to the plate better prepared. We will start the journey with a visit to our financial planner. Thank you so much….Faustino
Bill Heisel saysNovember 23, 2013 at 1:28 pm
Good blog. I think the honesty/calling it like it is is helpful, for you and for others.
I found your blog by googling “Connecticut notch” on a whim; just to learn more about that funny squiggle on the map. As you like going to out of the way museums (that resonates with me too), I like studying maps. Your blog on the Southwick Jog is both informative and funny!
Best wishes with your museum quest and with your son. And while I (as a Hoosier) don’t have a dog in the CT-MA-border-dispute show, good luck getting your notch back!