Tuesday, December 9, 2008

Conversations with myself

Every time I see in print some variation of "All people with Down syndrome are mentally retarded," it hits me like a physical blow to the chest. I have not gotten over this yet. In fact, it may just be the toughest aspect of this whole thing for me at this point. I'm sure if Finn had some serious health issues, those would make the "mental retardation" aspect of Down syndrome pale by comparison in importance. But he's healthy - thank goodness! Don't get me wrong! (and I pray to the universe that I'm not bringing down some curse of a health issue down on him . . .) So there is nothing distracting me from torturing myself about this.

Sometimes I play this game with myself. I think, well, maybe I can desensitize myself to the term by repeating it over and over.

Mentally retarded. Mentally retarded. Mentally retarded. Mentally retarded. Mentally retarded. Mentally retarded. Mentally retarded. Retarded. Retarded. Retarded. Retarded. Retarded. Retardedretardedretardedretardedretardedretardedretarded.

It hasn't worked yet. I still feel like crying every time I read that they all have mental retardation. Even the nicer terms, the more PC terms - developmentally disabled . . . cognitively delayed . . . mentally challenged . . . intellectually impaired . . . they sound less harsh, more compassionate for sure . . . but it still feels like Finn has been sentenced. Like he's trapped. So, see, the thing is, it's not just the terminology that hurts, it's the knowledge of what it means.

Is he mentally retarded right now? Is my baby mentally retarded? How can he be? He's just a baby. But he is, right? Because he has Down syndrome, and they all have mental retardation.

It feels hopeless. You know, there are so many other characteristics associated with Down syndrome: heart defects, bowel obstructions, poor vision, thyroid issues, and the list goes on. But none of those things occur in every single case of Down syndrome. Even low muscle tone, which is a hallmark of DS, apparently only occurs in nearly every case. See? "Nearly" every case leaves the door open for some hope. And in fact, Finn does NOT have low muscle tone. So there. But the mental retardation thing? It's a given. It's not nearly every person with DS. It's every person with DS.

I know, I know. There is such a wide range of intellectual ability, even among the mentally retarded. And someone's IQ does not measure empathy, intuition, and a lot of other things. I try, I really try to take comfort in that.

Why do I have such trouble with this? With knowing that my son is intellectually impaired, and always will be? He can still live a full, happy life. I know that. But he will always be limited in what he will be able to do. He will never be a brain surgeon. Or a rocket scientist. Or a CEO. Or a school teacher. Or president of the United States. And maybe none of my other kids will either, but at least they can. At least those doors are not closed to them.

But it's not even really about what vocation Finn will be able to have some day (although that's a part of it). Will he think deep thoughts? Will he ever have the ability to share his mother's and brothers' passion for reading? Will I ever be able to have deep, meaningful conversations with him?

Sometimes I wish more than anything in the world that he could just literally stay an infant, tiny and innocent and protected in my arms, forever.


Jeanette said...

Lisa, I want to give you a little ray of hope. One of the things that you mentioned was if Finn could have the love of learning that his siblings have. The answer is a resounding yes. I JUST went to a training seminar this last weekend about teaching kids with DS to read. One of the things that the instructor was adamant about was the strong ability to do just that, read! She even said that many excel at it. The key is teaching by sight words (memorizing words) and not phonics. There is a lot more to it than that, but essentially, reading is NOT out of his reach. As a matter of fact, it is something he may just LOVE as much as his brother and sisters. I am starting the program with my 4 year old this week. He will be my guinea pig. He is VERY excited about learning to read and I am hoping that he will teach me a few things before Sydney is ready to start. BTW, the program starts working with kids at age 2!

T-rex said...

I'm so, so sorry Lisa, I wish that as your friend I could do something to help you with your thought process on this, but all I can give you is a big cyber hug and all my very best wishes for you and Finn. Nothing I say will make a difference, but I have to give you my best wishes for him anyway. I think he will be amazing and unique just like his siblings, even if his achievements or timeline differs.

Nzingha said...

I'm in the same boat as you, my son Umar doesn't have any physical problems to speak of. He isn't really low muscle tone although he is a bit further behind than my other four were but not far behind in the accepted 'normal' range of any other baby.

But than there is the mental retardation which scares me for two reasons. 1. the unknown for it could be severe or mild 2 the images of retardation. These images are much like the images I held of what Down Syndrome was, I'm quickly learning I had some of the most awful images. It could very well be this whole mental retardation won't be as bad as I'm making it out to be.

I tend to assume he'll do things, like read, work, even marry. But I'm also preparing for the fact that he might not. And I'm coming to terms with it.. slowly.

Nick McGivney said...

Yup, always with the Mentally Retarded. We don't get too many people shouting 'Oh him? He's Emotionally Heightened.' We'll struggle on with the prejudice, and with our secret superpowers. Yours looks awful cute!

Keri said...

Found your blog through Mom of Three Girls. I just wanted to say that despite the fact that my cousin's daughter who has DS is now 28, holds down a regular job, is attending college courses (one at a time!) and is capable of living on her own, my cousin still visibly cringes when she hears "mentally retarded". I'm not sure you ever get over that cringe, no matter how many times you hear it. That being said, my cousin with DS DOES think deep thoughts- mostly about how people treat one another. She has some remarkable insights on how people think they are so much better than others yet everyone has problems that they have to deal with- some better than others. Oh, and she loves to read and learn (hence the college courses), something she picked up form her mother, who is also a teacher.

So while every child with DS will be different (isn't every child unique?), don't lose hope for Finn. If you and your family value something, Finn will pick up on it.

Anonymous said...

this may seem a little odd but I saw your comment on trish's blog (unringingthebell) about one of your twins and how she pulls hair and I felt the need to drop a comment incase you weren't aware of trich. she may have trichotillomania which is related to ocd as it's an obsessive urge to pull hair either consciously or not. here are some links with information. I have it and I've heard of people of all ages having it but it generally starts in childhood or young teenagehood. there is not a lot of awareness about it because it's not the most common disorder but anytime I hear of someone pulling hair I always ask them a few things and tell them about trich and my experiences with it.


feel free to email me about it if you have any questions

gunshotbeauty at yahoo dot com

Karly said...

Sometimes it's just hard, isn't it? Sometimes it just really sucks.


Laurie said...

Yep. What Karly said.
Big hugs, Lisa.

Jen said...

Please stop stealing blog posts out of my head. Seriously.

I think this all the time...I look at Evan and go "He's mentally retarded". And looking at him, and thinking that, just doesn't seem right. It doesn't fit. I know it's true, but I have a hard time wrapping my head around it.

SunflowerMom said...

It is a tough pill to swallow, at any age it seems. Just yesterday I was filling out a new patient form for Sean's dentist. You know the page with all the "check any of these health issues you have..." Well it had one for "congential defects" I had to circle cuz there wasn't one that said Ds. Then there was that one staring at me, "mental retardation." Oh how I loathed to circle it! I hesitated and thought, "maybe I will just right Ds on the side and not circle MR since it will be presumed.

I decided to face up and just circle MR. Then I sat there staring at it wanting to erase it....

Anonymous said...

Mt daughter is 9 and she has DS (came on by via Tricia!) and she is in the 2nd grade, reading basic level, doing basic math, on a jump rope team, basketball team and does gymnastics. I wish she loved animals more but she's afraid of them a bit so she holds back. All parents have degrees of this worry- like the Dad who'd like an athlete and gets a bookworm? We felt the same way at infancy. The trick is to only look directly in front of you, and that probably should be the same with typical kids perhaps? Love your blog- glad I found you. Shame is the root of all evil.

Tara Marie said...

It is a word that stings when seen in black and white. But I have to tell you.....living it, you won't notice it. Or I should say, I don't notice it, only if I read it in B&W and have to remind myself 'oh, yeah, she is mentally retarded'....because all I see is my girl. A girl who loves life, loves to learn and yes, she has very interesting and deep thoughts with me at times [especially during the loss of my Mother and now her grandfather].

By celebrating life and learning, Finn will grow up to do both.

My name is Sarah said...

Lisa, you are really amazing. I should be heading for bed but once again your post takes me back to a great memory. I just want to tell you this one little story that put it all in perspective for me.

When Sarah was 9 she was playing on a girls softball team with the locally organized little league. It was the second game and the innings were changing. Out of the corner of my eye I see a mom that I didn't know giving the coach a what-for-all, you know the in your face how dare you finger pointing kind of thing, and then I hear her scream "then what's the retard doing out in the field, why don't you bench her." KNOCK ME OVER. Never before had I heard Sarah referred to as "a retard." I was dumbfounded and speechless. I wanted to do something but I couldn't even form words I was so stunned.

Innings change. Sarah is up to bat. First pitch, she swings, strike one. Second pitch, she swings, strike two. Third pitch, she swings, nails the ball and it goes flying way above everyones reach, way out in the outfield. It was a home run, with girls on first and third. Now my voice was working. I was screaming at the top of my lungs, "That a girl Sarah." And guess what, so were all the other parents. Except for The Grouch Mom. She just sat there in her folding chair with a sour puss on her face. I wanted to go say something to her but I didn't have to say anything, the home run did all the speaking for me. And she knew it.

Now do you want to hear a really great ending to all this. Do you remember that post I did of Sarah and her friend Stacy and the story the high school yearbook did on the two of them. Eight years later, The Grouch Mom's daughter was the year book editor that made the decision to include that beautiful story.

What I've learned with time is it all comes full circle. Painful days, oh yea. But the glory moments so outshine the rest.

Anonymous said...

Oh man would I like to have smacked that mom!

JaybirdNWA said...

This is the kind of post that keep me reading. Your honesty deserves respect and I for one thank you for that. I agree with you that this is the most difficult thing to face for me and I try not to let my mind go there mainly because I just don't know and can't predict the future for John. And if I dwell on this too much, I'm afraid that my attitude toward him will change because of my own labeling of him. One way that I fight this is to spend the majority of my day interacting with John - talking with him, laughing, singing, etc. At this age, a childs ability to interact with the world around him is one of the ways that we have of determining ones mental abilities.

Hector and Jennifer Varanini Sanchez said...

Please check out www.iahp.org and can I tell you that EVERY child they see and work that has DS not only reads but reads as early as 18 months old? My typical 5 year old doesn't read and to think that Joaquin will probably be reading at least by 3 years old is just amazing. Finn will read, write, think amazing thoughts and he will run, swim, do triathlons, etc. He may even be a teacher, a programmer, who knows?!?!
It's true our boys may not be rocket scientists but I bet they will find their true purpose in life, what makes them happy and in turn makes them happy!!

Hector and Jennifer Varanini Sanchez said...

I meant to say "in turn makes the world a much better place for all of us :)!!"

Megan said...

{{Lisa}} Everyone else has said, much more eloquently, what I would have said. So, I'll just offer some hugs and the comfort that I'm in the boat with you. :-)