Damian

d1.jpgI figured it would be prudent to write a little blurb about my son, Damian, and some of the special challenges Hoang and I face raising him. I have hinted throughout CTMQ that he’s a little bit different from other kids his age which has prompted some emailed questions.

“Why don’t you take him to this or that museum?” and “What does Damian think about that?,” etc.

Damian has an exceedingly rare (~ 600 diagnosed) and poorly understood genetic anomaly called Smith-Magenis Syndrome. This results from a partial deletion on his 17th chromosome which manifests in several ways – morphologically, mentally, and behaviorally. We are “out of the woods” with many of the physiological health issues according to many tests he’s undergone (cardio, renal, spinal, hearing, etc) and his deletion is a “smaller” deletion which gives us hope some of his behavioral issues won’t be as severe as some other SMS kids – though there is no evidence to back that up.

d2.jpgThe birth of our child was the best thing ever and we of course continue to feel that way. Having an infant started me on this journey to visit all that CT has to offer, as we could no longer go far away to exotic locales. By the time he was six months old, Hoang and I knew something was not quite right with our son, but the difficult diagnosis (through genetic testing) was still a year off.

SMS kids have all sorts of issues, most notably mild to moderate mental retardation (please stop saying “retarded” as a pejorative, thanks), gross motor delays (he crawled at 16 months – on Mother’s Day! – and walked at 29 months for examples), sleep disorders, and behavioral issues that are often very difficult to handle.

SMS kids tantrum for no reason all-too-often. SMS kids display SIBS, or, Self Injurious Behaviors. These two issues are the hardest for us to adjust to and to handle – and will always be. So far (at 2 and a half), we’ve been spared the SIBS for the most part, save for some serious head banging now and again. But that very well may change at any time. However, the tantrums and misplaced anger are prevalent and impossible to deal with sometimes. Tears are all-too-common at our house. (Oddly, SMS kids very rarely actually cry tears – they just yell.)

d3.jpgDamian does not talk but he hopefully will. (Most SMS kids talk around 4 or 5.) He knows several signs and has been getting speech, OT, and PT for over a year now to good effect. Because he is so small (and so dang cute), he can “get away” with his developmental delays at this point. He is wonderful at daycare and we are confident that the exorbitant taxes we pay in West Hartford will allow him to continue in some great special education programs here.

As readers of CTMQ know, we DO get him “out there” and I can attest that he just loves being outside and meeting new people. (SMS can sort of be compared to Autism except Damian is sometimes hyper-social rather than antisocial.) I plan to continue on this path as much as possible but there are other times when we simply need to circle the wagons and deal with him as best we know how at home. He can be exhausting emotionally and physically to say the least.

Friends and readers cannot be expected to truly understand some of the challenges we face (i.e., how do you discipline an apparently poorly disciplined kid whose only response to discipline is endless angry tantrums and destruction?) but I’ll be happy to discuss further if anyone would like.

d4.jpgDamian is a beautiful kid; he’s smart and he’s funny and can be the most loving and wonderful child on the planet. He simply cannot control himself sometimes and can certainly cause stares and questions and much heartache for his parents!

While I’m at it, I will also take this opportunity to note that Hoang is the most incredible, strong, beautiful-inside-and-out woman you’ll ever know. Damian is not an easy kid to raise and the challenges are constant and very difficult. We both have our moments, to be sure, but Hoang is to be commended.

This has not been an easy first parenting experience and it won’t get any easier. And we can never know if we have the tools necessary to raise Damian to be the best he can be – but we can certainly try. Hoang and I have many struggles with SMS and the delicate balancing act that is our Damian. But we’ll be fine. We have to be, for his sake.

Heck, I think he wants to be a hiker just like his Dad – he just loves being outside and exploring his world. Now, if only we can teach him that doing so in a cold rain isn’t always the best idea…

That’s our boy – and we love him and help him (and each other) in ways that we never knew existed. Thanks for your support.

- Steve (September, 2008)

Continue on to an April 2009 Update

PRISMS – Learn about SMS

20 responses to “Damian”

  1. Catherine says:

    I really admire your approach to Damian’s condition-it must be one of the most difficult things to explain to others and of course people are quick to judge but often don’t take the time to imagine there might be a reason for certain kinds of behavior. Unless you’ve been a parent it is impossible to imagine the incredible love you can feel for your children-when you hear things like mothers lifting cars off their infants, people scoff but unless you’ve been there and experienced what it’s like to have this little bundle of joy in your life, no one can explain the lengths you will go to for that child! With two incredibly loving and supportive parents, Damian is in the best place he can possibly be!

  2. KO says:

    Bubbers is in good hands with you and Hoangers. Just knowing what good people you are individually, and better exponentially as parents together, Boy-Damian will no doubt flourish as you guide him forward through the coming years, not to mention every hole-in-the-wall museum in the nation.

    -KO

  3. Shannon says:

    You have a beautiful family! SMS is not something any of us would choose for our families. But all we can do is provide/teach the best we can. And along the way, we have met great friends. And though we do not all have exactly the same circumstances across the board with our children. We all still have an unspoken understanding of each other. God Bless!
    Shannon, Ken, Taylor and Blake

  4. Missy Longman says:

    What a gorgeous little boy Damian is! Our daughter, Sienna, is 2 years and 4 mos and she also has SMS. Life is challenging, but it does go on. Sienna was our first-born, also and we have a one-year old little boy. It sounds like little Damian is in good hands. You certainly have the right attitude about it all. Please feel free to contact me if you have any questions or are just looking to reach out.

    Missy, Dan, Sienna, and Sean

  5. Scott says:

    Hey, Steve.

    This is your best post ever. Thanks for opening the window into your world a little bit.

    As a father of three, I can attest that parenting isn’t easy under any circumstances, let alone when understanding what your child is going through is near impossible. I hope that you and Hoang continue to find the strength necessary to cope with the most challenging times.

    And, I hope our paths cross in the real world sooner than later.

    -Scott-

  6. Lori says:

    Steve:

    What a beautiful window into your life and the blessing you have been given in Damian. God has entrusted in you and Hoang a rare opportunity to look at life from a different perspective and find joy in many events the rest of us get to take for granted.

    Your ability to paint the picture of your CTMQ experiences and bring to life sites and stories is a new discovery for me and something I am enjoying immensely. I can only imagine the ways in which you are able to put those skills to use in helping Damian succeed in his quests.

    God bless you both and thanks for sharing a little personal side of you and your family.

    Lori

  7. Gary Masters says:

    Steve,
    I admire what you had to say. Your families unrivaled determination and devotion to your son is heartfelt. Thank you very much for sharing your family with me.

    Thanks
    Gary, Gina, and Logan(SMS 5)Masters

  8. honeybunny says:

    Damian always makes me smile. And always will.

    hb

  9. Irene McHugh says:

    Hi Again: This (once again) your “lovely older lady” from Cedar Hill Cemetery. Your post about Damian really hit home. I hsve a daughter (now 36 years old) who has never been diagnosed. She is undersized (about the size of a 10-year old). She is very intelligent, everything goes in but she can’t process the information and communicate back in the normal fashion. As you will find, I’m sure, you will develop a kind of telepathy with Damian and be able to communicate in ways unique only to you. As for behaviors other people don’t understand, I once took Gretchen to the Stop and Stop on Farmington Avenue in West Hartford against her will. She responded by stripping naked in the first aisle. Needless to say, that was the shortest shopping trip on record! I just want to say that you will have a difficult and sometimes frustrating journey ahead but will receive rewards far beyond anything you ever imagined. KEEP THE FAITH!! God gave Damian to you for a purpose!

  10. jane george says:

    i know how hard it can be, as you know tilly keeps me on my toes and sometimes stretched well beyond my limits of patience! you both sound like wonderful parents and i know damian is blessed to have you both. i have found it is easier for me when i remind myself to ‘let go of normal’ does that make sense? i have my lowest moments when i think ‘it shouldnt be this hard’ or all the ‘i wish this or that!’ but at the end of the day that was not to be and i am trying hard to accept that. somebody once said its ‘normal with a twist’ and thats so true. i love my tilly as much as i can see you love your gorgeous boy and with love we can all move mountains. love and hugs to all of you. from a mummy who really gets it! xxxx

  11. Don says:

    Steve,

    I’m a recent reader of your Blog and absolutely LOVE it. In fact, I have already commented a couple of times on your Blog. I too, have an atypical facination with maps, geography, etc. In fact, I’m refered to as the “Map Man” in my wifes 2nd blog.

    Anyway, I’m commenting here with some friendly advice. I’m sure you’ve had plenty of that with Damian. And, unfortunatley, probably a lot of not-so-friendly advice, as well.

    My oldest son (8) has Autism. His “remediation” has been nothing short of astounding, almost exclusively because of the tireless efforts of my amazing wife. She has chronicled our Journey with Jacob in her 1st Blog here: http://jacobs-journey.blogspot.com/.

    I recommend giving it a read, if only for some insight and moral support into raising a special needs child. Within it you will see our experience with RDI, the remediation program we used with Jacob. I strongly encourage you to look into RDI as a remediation program for the behavioral aspects of Damian’s SMS.

    Best wishes, Don.

  12. brie says:

    Hello- Came across you page and I must say your son is a doll! We are waiting on the genetic micro array to come back. We are pretty sure it will be positive for SMS. Ricky started showing signs something was not right at about5 months old and has been very delayed in his motor skills since. He is still not very good socially..making eye contact that is so everyone assumed he had autism… After seeing a developmental pediatrician she believes Ricky has SMS. After looking over the signs, I must say I agree 100 %. This has been the longest wait of my life. I just want the results already!! Ricky has a few strange facial appearances but we always put them off to him being half Vietnamese so he is supposed to have the almond eyes and flat nose!
    Thank you for sharing and I can be contacted at [email protected]

  13. Moj says:

    Hi Damian:
    I loved all you wrote and I can identify being a loving parent of a 24 year old. We are all fighting our battles adn I wish you luck. I raised my son alone amidst much adversity and former abuse of all kinds. I was able to break the mold. He is getting his masters, doesnt drink or drug and is in a Lynyrd Skynyrd cover band. Polite and courteous, fomething finally turned out pretty well! Children are the loves of our lives. You follow your heart in the raising of them, don’t listen to anyone else!!
    Nice creative blog about the cat place.Merry Christmas.

  14. Real Hartford » Happening(s) in September says:

    [...] content is about Hartford, but a good bit of it is. One of Steve’s sons was diagnosed with Smith-Magenis Syndrome. The fundraiser goes from 5:30-9pm. There will also be auction items for those who have more money [...]

  15. Carol Silva says:

    I met Damian at First Church Nursery School this year. I have twin boys Noah and Christian who were in the summer program with him. Because my mom is disabled, I was able to use that example to explain why Damian acted differently than the other children. I explained that sometimes people have a disability you can see and sometimes you can’t see it, but it’s there. I explained that Damian was a sweet boy who didn’t mean to come across as mean, but that he probably gets frustrated that he can’t communicate like the other children do. I explained to them that he is just as sweet as they were, but needed the children and teachers to be patient with him and love him. They asked about Damian today when I saw the fundraiser paper. After much explanation and discussion, they understood that this was an event to help Damian. They smiled and asked if it would make him better. I said I wasn’t sure, but that it was definitely going to help. I just wanted you to know that your son is special and beautiful and I love that you put him in the same school as children who don’t have his condition because it was a learning opportunity for the teachers and especially for the children. To learn what compassion is, by seeing it on their own level. My love to you and your family and I hope that Damian goes on to do wonderful things, as I am sure he will.

  16. Louise says:

    Your son’s story is truly touching. You can feel the love and respect that you have for him. Have you heard about Dragon Parenting and Emily Rapp?

    If not here is a post:
    http://ichoosehappynow.com/2011/11/17/family-relationships/dragon-parents-love-their-kids-without-expectations/

    Cheers,
    Louise

  17. Maeve says:

    I just read your post. My daughter was just officially diagnosed with SMS now (at 11 1/2 years). We had taken her for testing in ’06, but it was inconclusive.

    I was wondering if you knew of any organizations or meet-ups for SMS kids. I know it would do us all (kids and parents) good to meet other families with the same situation.

    Best to you…

  18. Tiffany says:

    Chi Hoang ,
    I M vietmese & American & reading your husband story about your son Damian. I feel so connect. My son Jaxx has SMS it is too overwhelming but I too new something . We just got diagnisi this yr & he is5. We live in Richmond va. I have a great pediatrician that helped us this 2 yrs to find out. But you know with insurance & other complications. Damian is so handsome we have to keep in touch I am on FB tram nguyen take care

  19. Kathi Dobbins says:

    Thank you for sharing your amazing story with us. Your boy was placed in your care by the powers that be as they knew you and your amazing wife had a special place in your hearts for a special little being <3

  20. Chris says:

    He is a beautiful child.

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