Wednesday, May 12, 2010

Smarty Pants

Here's a little snippet from OT yesterday:

Emily had Finn playing with shaving cream on a mirror. He was quite enthralled by it (I think especially by the cute little boy who did all the things he did and made all the sounds he made). She comes up with all kinds of creative activities to engage Finn - like having him retrieve little pom-poms from a plastic ice cube tray - excellent practice of the pincer grasp.

Finn is very vocal these days, and it feels so much like he's just on the brink of . . . something. He clearly wants to talk with us, and I believe that hidden in there is an ability to develop spoken language. He's trying so hard.
  • He now says "mama" and "dada" in context.
  • He claps his hands and gives a hearty "YAYYY!!" when pleased with something (sounds like "AAAAHHHH!!"
  • He mimics me saying "Shhhh!" (Sounds like "tthhhh")
  • He mimicked me saying "water" the other day (sounded like "addah")
Oh, and also, he does this fake cry when I tell him "no" (because the truth is, the boy is into EVERYTHING). Clearly, he's not above a little manipulation to try to get his way about things.

I remember shortly after Finn was born, I started reading Babies With Down Syndrome, and I got to the part that stated very matter-of-factly that children with Down syndrome are mentally retarded. It hit me like a brick to the chest. I knew next to nothing about Down syndrome at that point. I guess I had some vague understanding that they were the ones who were in the Special Ed classes when I was in grade school. To me, they were just oddities, slightly strange-looking people, usually with bad haircuts, who lumbered about awkwardly. My mother referred to them as Mongoloids when I was a kid - I think that was just the still-accepted terminology back then. I probably only saw a handful of people with Ds in my entire life before Finn was born. So I just didn't know much at all about it, what it would mean for us, for our family. When I read in that book that my son is mentally retarded, I was horrified and scared. What did it mean? I envisioned him growing into one of those people with a bad haircut and ill-fitting clothes. I envisioned our relationship always being one of caretaking, and not one that involved any two-way interaction.

For the longest time, coming to terms with the mental retardation piece of it was the hardest part of the whole thing for me. Not because I had this need to have brilliant, high-achieving offspring, but because I very much wanted to know that I would be able to have an actual relationship with my son that went beyond my leading him around.

And I remember posting about my struggle here, and Tara Marie over at Emma Sage telling me that as you go along, the whole mental retardation thing means less and less in your daily life. I didn't believe her. I thought it would always be this glaring neon sign we'd be dealing with - a gargantuan elephant in the room.

But Tara was right. It means less and less these days. Really, what does it mean at all? It means that it takes Finn longer to master certain skills. It means that he has a learning disability, and learning will take him longer than it takes the average kid. It means that some concepts he might never fully grasp.

So what?

Right now, it's just not a big deal. And that's the truth.


heather said...

Finn looks a lot like Kevin in that last picture! Growing up and becoming such a cute toddler!

Adrienne said...

He's a doll! I agree, when you look at what mental retardation really is, it's not as scary. Those two words are horrible sounding to a mom and like you said, you have this vision of someone you've seen when you hear that and it's heartbreaking to think of your own child like that.

Finn looks like he's doing great!

Tara said...

I was going to comment on what you wrote, but I am completely distracted by that picture! That is the cutest thing I've seen in a long time!!!

Anyway, what were we talking about? Oh, ya. MR. I completely agree with you. It's weird that it doesn't matter, but it really doesn't. Just a non-issue. I love the way you said it.

Monica Crumley said...

Awesome post. He is soooo cute allll the time. I remember the word "Mongoloid" from my childhood and had the same feelings as you about people with Ds growing up. Every now and then, I'll catch a stranger eyeing John Michael (staring, not interacting) and I sometimes wonder what they're thinking, but I don't really care anymore.

Sweet Pea's Mommy said...

Thank you for such a great post! I love the OT ideas! Can you take a picture of the pom pom ice cube tray setup? Are the pom poms just like little cotton balls?

I'm still getting over the hurdle of MR, but it definitely is becoming less of an issue. It really does improve as our little ones move beyond the "baby blob" stage and start showing their intellect.

Runningmama said...

Thank you Lisa for this awesome post! I too was extremely frightened by the whole MR thing...I just didn't know how my daughter and I would have a meaningful relationship. Now, she's only 11 months old and we already have a great relationship and even though she obviously doesn't talk yet, she somehow manages to communicate with me each and every day.

starrlife said...

I am so happy that you have reached that point in the journey!
He is just so adorable!
As a parent of a 10 year old girl with DS I really find it interesting to revisit such a close mirror of my own journey. And I encourage visiting us parents of older kids just to see how awesome it can be!
FYI- you may already have this set up - when Kayli was born we were introduced almost immediately to a family with a 7 year old daughter with DS (we were so lucky) and they lent us a long mirror that was laid lengthwise on a stand (homemade)on the floor so that she could sit in front of it and see herself. SHE loved it! She talked to it, smeared it, played in front of it, did her OT in front of it, pulled herself up on it- just made faces into it. It was one of the best things we ever got.

Alycia said...

This is probably my favorite post ever. There is something different in your writing and something different in you. I dont know if "free" is the right word or just "you again" but something is different. It makes me smile and it makes my eyes water :) It's like you aren't talking yourself into believing what you are writing but you are writing what you feel with less thought but so much more emotion. It's beauitful and so are you! I mean that Lisa! Miss you guys!

P.s. The older Finn gets the more he looks like the little boy from Jerry Maguire. LOL.

Terri said...

If blogger had a "like" button I would be clicking it! Once you know a person it's your relationship, not their intellect that matters, honest! My daughter is 16 and delightful to know--not because she is 'high-functioning' (whatever that is...) but because she is fun and funny and feisty. Nothing else matters. I work for academic achievements, but with or without them, the relationship is 100% there.

Erin said...

I hate those words, they scare me too. I know my son has a learning disability but the associations I have with the words MR are different and I just don't see it in my son. I am so glad we are moving away from using MR to describe learning disabilities.

This picture of Finn is soooo cute!

Mel said...

What a cutie he is. And the M glad that's gone!

Anna Alexandrova said...

What a journey! Thanks for taking me along, Lisa. I learned so much and feel so proud of Finnian!

You once asked in your post whether reading this blog has changed our attitude towards having a child with DS. Now I can say yes, definitely, I wouldn't be scared.