Tuesday, September 25, 2007

what the future holds...?

Last night I read a blog posting by Michael Berube, eminent culturual studies scholar and parent of a teen with Down syndrome (author of Life as We Know It: A Father, a Family, and an Exceptional Child). Berube writes a lot about his son Jamie on various blogs and in magazines. The entry basically addresses some of my worst fears and confirms some of them.
Here's an excerpt:
And I hope I haven’t given people the sense that everything is just wonderful with Jamie all the time, and that Down Syndrome isn’t such a big deal if you just take the Right Attitude. (There’s a little story in the DS community about how having a child with DS is like winding up in Holland when you’d planned to go to Italy, and while this story serves the crucial function of reassuring new parents that their lives are not ruined or blasted or just plain over, it’s really not a very good analogy, in the end.) There’s a reason why so many Jamie Stories involve me taking him on trips or playing golf with him or going to aquariums and zoos with him: it’s not like he has friends. Oh, people are mostly very nice to him, and kids greet him cheerily in school and in town, and his teachers and aides like working with him, because he’s a great kid. But he doesn’t have the kind of social network other fifteen-year-olds do; he doesn’t do sleepovers and play dates and just hanging out.

OK, so it's not just us. I'm planning Stella's sixth birthday party and facing once again the fact that the only children there will be her cousins. Even at her school, she does not really have "peers." And her delays in expressive language make it difficult for her to make friends. Sure, most people are friendly, and I am frequently treated to stories of this or that person's encounter with someone with DS in their past--usually of the "they're so sweet" "They never know a stranger" variety. They mean well, and at least it's better than frightened stares, or taunts, or Flava Flav style insults. But it doesn't exactly put a mama's mind at ease.

Berube goes on to discuss health care and other issues of Jamie's future. One thing that is terrifying is the high incidence of Altzheimer's in people with Down syndrome. He points out this article in the Globe and Mail (keep trying and you can read it without having to subscribe)--one of the biggest downers (pun unintended) I've read in a very long time. Giving a painfully detailed account of a 55-year-old woman with DS who has AD, it's actually entitled "Doomed from Birth to Death"! Geez, folks, give us something to work with here.

It is freeing in a way to read Berube's bracing and detailed prose, which painstakingly delineates the issues facing parents of a person with DS. This beautiful little girl--our Warrior Princess with her determination, her personality, her sweet little face and kisses, her grumpy tantrums, her joys and frustrations--has a future that is arguably more uncertain than a "typical" child. I'm so tired of parents who do not have children with special needs trying to equate their struggles with ours. I realize they do this with the best of intentions, trying to de-emphasize our family's "difference." But it actually has the opposite effect, as far as I'm concerned. They have no idea. I'm not being a drama queen. I don't want a pity party. I'm just being realistic.

Part of the problem I am having in writing about my experience parenting Stella is I'm afraid the whole thing will sound like whining. I suppose in once sense it is the question that plagues all memoirists--"Am I being self-indulgent?"--and in a way memoir is inherently indulgence, but I want to make sure there is some value for the reader. That's my goal, anyway.


jmiller said...

I know this doesn't help but I don't do big parties for my kids birthdays. Just family and friends with kids (this year another 8 yr old, my 5 yr old and 2 3 yr olds). It is just too expensive to do a big party. For my son since his birthday is in the summer I try to do something special together like Great Adventure or a water park. My daughter is turning 6 as well on a Thursday in December so I don't know what to do because Hanukkah is a the same time and there are parties for it on that Saturday. I am sure Stella will be happy with her party, because she has a great family that loves her.

I don't pity you but I do feel for you, sometimes I can barely handle two "normal" kids so I can't imagine how difficult it is for you. I hope your book can help people like me understand what it is like for you; the good, the bad and the ugly(the school system). I am sure you won't sound whiny.

Amy said...

Thanks so much for your note, Jennifer! We just do family, too, but our family is huge and growing. I can't imagine doing the 100-people parties some folks do for their kids. Yikes!
I really appreciate your encouragement!

Karen said...

Oh, what a relief to read about your misgivings, fears, and uncertainties. It is wonderful to read another parent's truth that life with a child with DS isn't simply just A Gift, and that We Must Persevere In Spite Of The Obstacles, and that Our Life Wouldn't Be This Wonderful...blah blah balh. There *are* limitations, and there *are* considerations, and life *isn't* just wonderful. Well, it is wonderful, but not in the ways we have grown to expect or even look for. I'm glad you found ME, and I'll surely be back here to read more of YOU.

Amy said...

Karen--Thank you, thank you, thank you!

Tricia said...

I am struggling with the same thing in regards to writing about my experiences. I think key is being honest. I think you are.

L. Noelle said...

I think this is a very honest post. You are simply expressing what is true for you and some of your natural fears and concerns.

I am one of those parents who always tends to look at what Jaden IS doing and stay focused on that. It is way too easy to see all that he isn't doing yet, or all that is dificult for him. That is the easy thing to do. What is more challenging and dificult, is to put blinders on, and stay focused on what we are accomplishing and what he is doing.

Speech will always be a challenge for our children, until they have a remedy for that. Short term memory will remain a challege, because this is the region of the brain that is most affected in DS. I just remember this. All children have challenges and obstacles to overcome. Whether they are emotional, mental, physical, physiological, genetic etc. Every single child has their own set of dificulties and triumphs. The child that spends his life in a wheel chair unable to speak or move, is just as important and deserving of life as a child who can run, jump, talk and do math. He is just as important and valuable. Should he be a disapointment? He is still a living, breathing, thinking being.

What is so challenging for us as parents, is to always stay positive, motivated, uplifted and to try and keep everything in perspective.

I used to mourn the boy that I didn't have or thought I didn't have. But that stopped shortly after he was born. When he reminded me everyday that he is the boy I was supposed to have and the perfect boy for us. When he started holding his own bottle at 3 months, and rolling over at 2 months, I was no longer concerned about Jaden. My "typical" daughter is much more challenging for me as a mom, any day of the week. I am much more concerned about how I will handle pre-adolescence, rebellion, opinions and arguments. And trust me, they're already starting.(she's only 8).

Will Jaden always have tons of friends? Probably not in the traditional sense. But he will always know love and acceptance because that is what we see every day. He will always have such strengths and abilities, that the few things that are more challenging for him, really won't and don't matter.

It's ok to think about early Alzheimer's, however the reality is, the general population is becoming afflicted with early onset alzheimer's at a rate that is quadruple what it was just 20 years ago. They expect this rate to keep going up in the next 20-30 years! This is a phenominon affecting everyone! Not just DS! The reseach going on at several Universities across the country, including Stanford, is uncovering the links between Alzheimers and DS right now. This is actually a positive thing because they feel that many of the treatments they are working on for treating Alzheimers will be able to treat DS! I find this encouraging and exciting. The future for our children has never been brighter.

Every day there are parents mourning the children they thought they needed and wanted and missing out on the children they do have. Every day parents are disappointed at the dificulties. I just spoke with a mom who has a grown son who is just "lost", going out every night, partying, no motivation etc. In my opinion, this is way more disapointing than a child who is always trying thier best!

jennifergg said...

I think the best anyone can do, ever, is to tell their truth as they see it.

I tend to agree with L.Noelle; it's never been helpful to me to look to far into the future--for any of my kids. I just go day by day, and do my best with what we have in the moment.

Too, Berube's son is at a challenging age, for any parent. But especially for a parent of a child with DS, and I mean this in the sense that he and other parents are trailblazers. What they have for their kids, in terms of services and supports, they've essentially created. And so now, they are challenged to create again, this time a supportive and real community for adults with disabilities.

And it's our challenge to continue to build places for our children, and this goes back to my first statement: speak your truth, talk about your life with your child, stand up and be noticed!

(As you are, you media star...)

Amy said...

Very good points, Jennifer. About the media--Ha ha ha!!! I actually am feeling a bit OVERexposed...the Buddy Walk helped put things in perspective. I'll be posting more about my reactions in the next few days.

Shelley said...

My brat with 47 is just about to turn 3 and because she is a twin - we don't have any probs yet - two lovelies from her EI are coming to her party (in a couple of weeks) and hopefully 5 from the childcare setting both she and her brother attend - but really only one of those is a 'friend' in a more mature sense of the word - of my son not Hannah.

I have a deaf sister and although each disability and individual brings their own joys and challenges I have seen, especially through adolescence, just how important family and other 'deafies' were for her. I don't know yet what it will all mean for Hannah but I will definitely be giving her opportunities to socialise with other people with DS - there is an Up Club! not too far from where we are now - so when she is older she might like to go there sometimes - after all 'fitting in' all the time can get pretty exhausting.

It might be naive but that is also why I am so keen for her to develop interests like music, dance, reading or painting - something for her to do to relax. She is an absolute doll so ultimately - their loss - I will aim for quality in her friendships above all else.

Just today I took her to our local park to play with another local family I know through EI - their little girl has DS too - she is 4 1/2 - I am happy to encourage both Kit and Hannah to form a friendship with her (and her little brother) - they can practice their social skills on each other - and who knows maybe one day the two girls will have formed a 'friendship' with each other that does not need to be 'manufactured' and their siblings might also like having a peer who understands.