I was standing in a huge line at a viewing, holding my little 18 month old boy, while my two year old ran around my periphery. A lady just ahead of me looked back and made eye contact with the child wriggling in my arms. He smiled and charmed the socks off her. She said to me, "I have a special needs child too, she has Downs Syndrome." Then she turned back and started talking to someone else ahead of me. All I had responded was a nod. I had never, ever once thought of my son as a special needs child. I mean, granted, he did have some extra challenges and needs that other children don't have, but that label, "special needs"? I was dumbfounded. I couldn't have been more surprised if she had turned around and thrown a pie in my face. That kind of label had never entered my consciousness.
Cariño was born with hemifacial microsomia or Goldenhar's syndrome. This is a fancy way of saying, the blood supply was cut off to one part of his face as a fetus, so one side of his face is smaller than the other. He has no ear on the right side, just a tag like an earlobe. He didn't have the upper part of the jaw on that side and his cheekbone and muscles are underdeveloped. Even his one nostril and eye are smaller. He was also born with a cleft on one side of his mouth, so he had to go about feeding a little differently. He has had somewhat significant delays in his speech/ language development and processing as well as some sensory issues and attentional deficits. Other than that, he has developed amazingly, is very happy and easy going, extremely social and busy. He is truly a natural athlete and quite handsome and bright. He's just a normal, albeit exceptionally sweet, boy.
Up to that point, I had heard a lot of "He's so lucky to have you" when people asked about his features and learned of his journey to join our family through adoption. I still hear that today. I know people mean well when they say things like that, so I don't take offense at them personally, but that idea kind of makes my blood boil. I want to just blurt out, "NO! You've got it all backwards, WE are lucky to have HIM!" Why can't people see he isn't some pitiful soul who needs our mercy? It's more like he's the enormous blessing we didn't even deserve. So that special needs thing? Yeah, I am a special needs mom because I especially needed him.
Friday, May 2, 2008
Special Needs Mom
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16 comments:
This was a really thought-provoking post - thanks for sharing it Shellie...
Let's just get rid of the needs part. You are a SPECIAL mom!!
Wow Shellie... I would have given her an ear full. You are much more classier than I am. :) great post!
I think you'll have an appreciation for this just as I did quite a few years ago, when I was studying to teach special education: in the program we learned to talk about a 'child with special needs'. In other words, so many people tend to say something like this, for example if they are showing a picture of their family to someone - "This is my Down's son, his name is Billy." So instead we think of it like this, "This is my son Billy. Billy has Down syndrome." First he is my son, this is his name, and whatever else fits in there - and yes, he has Down syndrome, there's no reason to hide it or be ashamed, but the most important part is not that he has Down syndrome .... did this make sense? I just love your blog!
Beautiful. You showed so much class just letting it go. I understand the blood boiling thing.
God Bless you and your wonderful family. Pax, EJT
You are good! I would have grabbed her by her lower lip and yanked it over her head.
Yes, anonymous, I understand. I don't usually say anything except, this is my child, X. If someone asks, as they often do with carino, or there is a reason to talk about the fact that a child is adopted, or has dyslexia, or hemifacial microsomia or whatever the thing may be, I freely talk about it, but I would never include it in an introduction. It's just one small part of who they are.
When our youngest was born, he had a partial cleft lip. Although it took us by surprise, and necessitated a little different feeding, we honestly didn't see it anymore by the time we left the hospital.
So it took me completely off guard when Bug was a couple of weeks old, and my dad praised my husband and I for taking the baby out and about with us, and not just sitting at home. I know my dad meant NOTHING bad, just that he knew people would stare and ask questions, and he was proud of us for the way we dealt with it. My repsonse to him was simple. Bug was nothing more or nothing less than a beautiful baby to us, and we have always felt so incredibly blessed to have him in our lives.
You're absolutely right. Nobody could ever understand how blessed the parents are unless they're living it. We don't feel like Micah is blessed at all (poor thing is saddled with us is more like it) but WE are incredibly blessed to be his parents.
Shellie, this was a gorgeous post, and absolutely something I needed to read tonight. Spot on, dear. Spot on.
You are simply amazing!
Wonderful post, and wonderful perspective.
I'll save most of this for another time -- it's a great story -- but my daughter used to call children with special needs "special occasions". In her own sweet, innocent way (with a mondegreen for a moniker) she had tapped into the idea that having children with special needs within our circle is truly cause for celebration.
Hi Shelley,
Thanks for stopping by and thanks for the poem. I do know that and I will post it with my next story on Thursday. Thanks for the reminder.
The tongue is the most powerful muscle in our bodies. People need to be reminded of that often.
Carino is blessed with you as well as you being blessed with him. You are a special mommy.
Love Theresa
I think I would have been dumb-founded had someone said that to me.... Thank you for always being willing to share your experiences.
Amen! We all feel blessed to have him in our family--grateful that he made his way to us (by divine providence, no doubt.)
I love getting to know your family more!
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