December 7, 2006 8:50 AM
The busy lives of my guys with Down syndrome
Our family has been going in so many different directions it seems I am more like a train station master – just making sure schedules and meals and transportation are all on time. Some of you probably know what I mean.
The Downzers (our affectionate name for Jonny, Jesse, Daniel and Justin - who all have Down syndrome (after Jonny, we adopted three more). I know this makes some people upset, but in a big family you have groups of kids that you call something to keep things sweet and simple, so in spite of the flak I take I'm not apologizing for it) are now involved in Special Olympics basketball training on Wednesday nights and Saturday mornings. Plus Very Special Arts is preparing Japanese Fairy Tales for their spring production, so they have rehearsals some Tuesday and Thursday nights. There are two tales and Jonny has the lead in the first: The Tale of Urashima Taro. Although his speech isn't that great and I never thought he'd have a lead, this is all done to Japanese music and singing and so he is acting in pantomime. and boy, is he a terrific actor!
The younger brothers are just beginning and have background roles as clams :) - but that's all they can handle the first time, and really we'll be fortunate if they handle that :)
I am pursuing a strategy with these boys. Jesse at 11 is severely delayed and Daniel (10) has some quirky behavioral issues. Neither of them are as eager to engage in the world as Jonny was. (Justin at 6 is even more gregarious and appropriate than Jonny was at that age). As I look around me at the disability community - the teens and adults I come in contact with - I'm realizing how important this kind of involvement is and that it's up to me to push them into different activities because these yearly activities will be like anchors in their lives.
I know the first time Tripp started taking them to Challenger Little League (Little League for kids with disabilities), they hated it and cried each time. The next year they sat in their places on the field and barely participated. After six years (and Tripp has coached the past three), they are so excited when their baseball stuff comes out. It's familiar and they love it.
Seeing this kind of excitement over familiar places and events with the teens and adults we are getting to know so well has taught me how important is for Tripp and me to build these foundations for Jesse and Daniel - even if it takes a lot of extra effort now. The investment now will mean that they will have vibrant active lives later on - and relationships with their peers in the disability community.
At the same time, I push for them to be included where they can handle it. Jonny is involved in Very Special Arts theater with people with and without disabilities, but he is also involved wherever possible in school and community theater - and has been for years. Also Boy Scouts.
Having four kids with Down syndrome has taught me the same thing that having the other 8 kids has taught me: every one is an individual with different strengths and weaknesses. It's not up to me to decide to make everyone do something and to have them all turn out the same. It's up to me to expose them to as much as I possibly can and see where their strengths lie.
With the kids with disabilities I also have to give them a little extra push, for the reasons above. But I also need to respect that some of them need more protection than others. Not every child born with Down syndrome will be a superstar.
My observation - of myself and others - is that when parents have a baby with Down syndrome they think the sky's the limit. My experience has shown me that sometimes it is and sometimes it isn't. The first thing parents often think of is academics - they want their child to learn to read. I did too. But Jonny at 14 is still not consistently able to make sense of a string of words in a sentence, and he has taught me that the things he does excel in - being socially comfortable and appropriate - are far more important than the academics. Daniel can read 300 words and count to 100, but doesn't do so well socially. While some parents might think his reading is terrific, my experience has taught me that social skills are more important. Hopefully these will continue to develop and he will find a balance.
While I believe that parents should strive to help each child reach his or her potential, I don't believe academic superstardom is what these kids are all about. These kids are all about shaking up our comfortable paradigms and helping us realize that there's more to a human being than intelligence and appearance and status. I have learned so much from raising them and seeing them as individuals God designed rather than potential superstars I can shape through my own efforts.
Which may sound contradictory since I’m now pushing them into these activities. . . .
But that’s not because I want them to be superstars. It’s for the social networking they will need as they become teens and adults. People with disabilities can have very lonely lives. Like everyone else, they want to have some independence and fun apart from their families. Someday Tripp and I will not be enough to fulfill all their needs.
So we’re doing our best to prepare them for that.
While the first few times I took the boys to rehearsals and Tripp took them to basketball, Jesse clung to our legs and acted like a three-year-old, he is starting to come out of his shell. Last night he threw the basketball a few times. Daniel is still pretty aloof, but I know he will come around.
Jonny and Justin have a blast wherever they go. In fact Jonny was put on the adult team because he had more skill than the kids his age (see what I mean about different strengths?)
I’m relearning the lessons of motherhood through these boys – on a grander and yet more microscopic level. It’s kind of like going through everything in slow motion and reprocessing the things I already know in a more profound way. Learning about accepting the individuality of each child and yet planning for the brightest future.
More on what’s going on in the girls’ lives later.
Posted in Disabilities, Down syndrome, Family, Mothering | Permalink
Comments
Barbara - I don't take issue with your naming a group of kids. Calling them the Downzers is just simpler, in the long run, than using all their names, or by saying "my kids with Down Syndrome".
My friend has adopted all 5 of her kids...most recently, a sibling set of three. Her oldest daughter is 13, then her son at 7, and the siblings who range from 2 to 4. When she goes out with her oldest, she refers to the rest of the crew as the Youngers...and when she takes takes the first two out, she refers to the sibling set as the Littles. It simplifies things. And those of us who know her, understand why she chose this method.
I admire the fact that you can raise so many children, many with disabilities, and feel NO NEED to apologize. You are awesome!
Posted by: Linda | December 7, 2006 9:54 AM
Thanks for the encouraging update on your boys.
Just yesterday, I was telling our "littles" about how painfully shy their older sister used to be. We adopted an approach of taking her places that really "stretched" her, while at the same time not pushing her beyond what she could handle. (It sounds very similar to what you described.) I remember that at times it didn't seem at all like she was having fun or even getting anything out of some of those experiences (such as when she would sit with her face buried in her lap the entire time) but then she would surprise me by claiming that she had "fun" or by talking about something she had learned. But it is really the longterm results that speak for themselves: our little guys, along with everyone who knows our daughter now, find it almost impossible to believe my stories of her previous debilitating shyness.
Posted by: Rebecca | December 7, 2006 10:18 AM
Thanks for sharing about your boys, I think I'm going to send you an email with a really long question, I'd like your advice on something....
Posted by: Amy Lu | December 7, 2006 1:38 PM
Barbara, I love this post. It really made me think. My husband and I would like to adopt an older child from foster care in the future, so I like to keep my ears open for good information about kids, their potential, and disabilities.
I read mommylife all the time, and I'm curious: what do you see for the "Downzers" as you say in the future? Do you want Jonny or any of them to try to live in semi-independently? (If this is not an appropriate question, please forgive me!)
Posted by: Jill (colicmommy) | December 7, 2006 2:16 PM
