Friday, January 25, 2008

My part

I've been thinking about what responsibilities I have within this new community in which I find myself. To be sure, raising my son in the best environment possible and helping him to find his way in the world is my primary responsibility. But I have this nagging feeling that I should be doing something more.

I see my blog as a place where I can contribute just a little. A place to connect and to challenge and grow.

I'm pretty good at research; whenever I have a free moment I dig and dig into information about Down syndrome, about how the world views these challenges - if they see them at all. Because I'm in the field, I search for videos on the topic. I found one that I uploaded today about a mom and her daughter with Down syndrome reaching out to obstetricians to help them "put a face" on the condition.

I'm realizing more and more that if I want Ian to be able to live in the best possible of worlds, that I am going to have to play an active role in helping pave the way for him.

I truly admire the mom in this video.


RK said...

Great video. Thanks for sharing. You mentioned your blog as a place to "contribute." I think you're doing that well.

I've been surprised at how many people have "happened upon" Braska's blog (I don't believe in simple coincidence) and then sent me notes about how just seeing silly stories about her daily fun has been an eye-opener for them. We even have one little life (that we know of) that Mom decided to save as a result! At first, it seemed weird that a blog might actually make a difference in the big picture, but if we can help put faces and personalities in the place of the labels, we've made huge strides.

Terri said...

really thought provoking. this kind of reminded me of the first steps of germany as they were being overcome by nazi thought and policy prior to WWI. the first laws were passed to address the "genetic imperfections" of physical and cognitive handicaps and progressed from there to genocide. i remember reading about mothers who went to visit their children and found them already gone. horrible.

you know, i used to work as a nurse in a 16 bed facility for adults who had both physical and cognitive disabilities and were also medically fragile. i loved that little community. they taught me so much about myself and about life and fun. how sad that they are thought of as something to jettison.

Terri said...

make that prior to WWII...

Tammy and Parker said...

Wow. Thank you for sharing that.

I try and use Parker's blog the same way you use Narrow a way to contribute.

I also try to show that life with an extra chromosome is not only worth living but meaningful. I figure if I can portray how much this kid with not only the extra chromosome but a zillion health issues means to us......well, then just the extra chromosome should be a piece of cake, eh? ;)

I know that many women terminate because of the potential health issues associated with Ds. I want them to know that even with a bagful of those health issues Parker is living and will continue to live a life full of hope and promise and potential.

Tammy and Parker

CristyLynn said...


Thanks for visiting my family's multiple blogs! :) I've enjoyed reading some of your older posts and wanted to comment on many of them, but I decided to just put one comment here.

I appreciate so much your transparency with your own thoughts and emotions with Ian's condition. Our own Little Man is almost 2 and sometimes I still struggle with what to call things and how to react to people and their often less-than-thoughtful comments. (or maybe it's my mood at the time)

Anyway, mainly I wanted to encourage you in what you are doing with your blog. If you don't mind, I'd like to add you to my blog roll so I can read your blog more easily.

We will be praying for you and your family.

By grace,

Kim Ayres said...

You have to use your natural strengths - if you're not the kind of person who wants to organise protest walks, then don't try - leave that to those who love doing that kind of thing.

If you're not careful you can feel overwhelmed by the need to do something, but incredibly uncomfortable with the expected things, depending on the person you are.

The best thing to do is team up with others - offer your film making skills, or something where you feel you have strengths to offer. Otherwise you can become overwhelmed with a sense of inadequacy.

God is Great Beauty Salon said...

Did not know that the debate is going on in the States also. I thought the debate was just going on in Sweden right now, silly me. Wrote about it on my blog just a week ago or so.

Great film. Thanks a lot for sharing it. It explained very well the issues many of us feel when it comes to these tests. Many "pro test people" confuses the issue with the issue about abortion, but this film showed very well that it's not about that at all.

For me it's a lot about normality and what we do when we in different ways point out some people as "normal" and others as not.

Tom said...

RK: The blogging community has transformed everything for me. I can't even imagine what it would have been without it. Books just don't have that personal touch. Glad your one of the voices out there.

Terri: Without jumping into the whole abortion issue, I was just amazed at how many parents chose to end their pregnancies because of DS. I'm still mulling all that over.

Tammy: Like I mentioned above, it's a whole new world that's been opened up to me (abortion because of ds). I've got to figure out how to articulate my thoughts on the subject, just for my own sake.

I'm so glad you're allowing the world to see that Parker's life makes it a better place. A sincere "Thanks!"

ChristyLynn: I felt a little weird commenting on all three but just wanted to say hi. Thanks for popping over and I would love to be added to your blogroll. I look forward to seeing what the months and years ahead bring as you try to help the disabled in Russia.

And I appreciate the prayers.

Kim: That's often the most debilitating part of it, figuring out what part I want to play in helping Ian and making a way for him in the world. Thanks for your thoughts; they reminded me that I am not a public "protest" walking type of guy... and that it's ok.

GIGBS: I'm still learning myself what are the main topics surrounding this issue. I'm glad you watched the film. Still trying to define "normal" in my own head.

beans said...

WOW-thanks for sharing that video . .I cannot believe the statistic that about 90% women choose to end those pregnancies. My DP and I looked into adopting a child with downs and we found that there's actually a 2 year waiting list for kids with downs.

This is a fabulous thing this group is doing. I know it is hard when folks get stuck in old ideologies about this . .my mom for instance still threatens my brother with group home-because when he was little, group homes were the worst possible thing you could do. They were bad places where people got abused. Now there are some that I wish I could live in.

Interesting. I am glad for those of you that are posting about this-and that you have found support in each other--and that you allow stalker types like myself to read! This truly is another way in which technology has helped bridge man gaps. For that I am thankful today.

Steve said...

Leticia over at causa nostrae laetitiae wrote this post about the video back in July. It is worth reading.

Tom said...

Beans: I was struck by that statistic as well... so I'm guessing that your brother lives with your parents at 37 years old? Did he get much therapy or schooling as a child? Just wondering why some kids grow up and stay at home while others are independent.

Steve: Thanks, I'll check it out.

Anonymous said...

The lady in that video is AWESOME. What a smart thing to do. And those old black and white pics are scary. Thanks for the video.

beans said...

Yes, My brother does live at home. He received early intervention starting at 4 weeks old and he graduated from high school when he was 21 with lots and lots of special education in between. He went to a life skills class in the morning and a vo-tech school in the afternoon when he was in high school. He reads and writes at about a 3rd to 4th grade reading level. He was considered educable when he was younger, thus being able to attend regular school.

I think he lives at home because that was what my parents wanted. He is not able to live on his own as he doesn't have much safety awareness, and he would go with anyone who promised him food! My parents have, much to my dismay, allowed him to be coddled and cared for exclusively by them, and therefore he has never really had to learn to be independent.

For instance, one time he was visiting me and my partner, and he told us 1 hour into the trip to our apartment that he forgot his clothes he had hanging up to come with him. Well, I said, I guess you will be doing laundry. The day after we arrived, he had to go down to the laundry room and wash his clothes. We showed him how to do it once, and from then on he did it himself. He is a quick learner, but I think my parents need to feel wanted and useful, thus the anticipating his needs and not fostering more independence. He doesn't want for much at this point-except for my mother to stop nagging him.

He does get out a lot and has people he does things with, but he has only ever lived at home and it will stay that way until my folks die. My other brother and I will then get joint guardianship of him-well, I will be co guardian with whatever remaining parent there is.

I think just like typical folks, some people grow up to be smarter than others. My bro had lots of intervention, but I still know others who are way smarter than he, but also others who are far more challenged than he. He was also very fortunate to not have any medical issues until two years ago when he broke his pinky at camp-playing basketball or baseball . . .he cannot recall which sport caused the injury! The story he tells include two entirely different versions.

I love him to death . . .i wish he were typical sometimes, but most of the time I revel in what he has to offer-in most cases the greatest smile and unconditional love . . .mostly!!

Sorry for the huge long reply!