A journey of triumphs and challenges, life and magic. A life of awareness and acceptance. A gift of Down syndrome.
January 14, 2010
Reflections - John
This reflection really needs no introduction - it is from John, my husband and Alex's father. John and I have always been true partners in raising Alex, Courtney and Tom. It certainly makes parenting easier.
When Alex was born, I felt devastated. I was ignorant, but I didn't know it.
We had 2 dogs at the time. One of them almost drowned as a puppy, (before we owned her), and she taught the other, a dog who by breeding should love the water, never to go in. 3 days after Alex was born I took the dogs for a walk to the beach, and amazingly, I coaxed Boomer to swim and retrieve the stick. It hit me that if I could teach this dog, who for years refused this basic dog trait, to retrieve in the water, teaching a Baby with Down syndrome would be a simple task. From then on I never looked back.
A lot of confidence came from education. We hooked up with a local support group and learned that any information older than 5 years was to be ignored because mainly the advice was to institutionalize these kids, as had been done to my distant cousin. I learned these kids had unlimited potential, albeit at a slower pace than the normal kids.
Our school system kicked in, and at 3 weeks old, I was taking Alex to class where she was attended to by Occupational Therapists. Step 1 was to teach Alex to keep her tongue inside of her smaller mouth. This only took a short time and so I was encouraged.
The amount of professional's time and money spent on this 1 child, disproportionate to the majority of society's children bothered me for awhile. It is inefficient in terms of the limited resources servicing the anomalies who could also serve a greater number of people in the middle of the spectrum. Though, this is one of the things which makes our society greater than many, the inclusion of all, no one is better than another, and although inefficient - it's better.
On another topic, the striving for efficiency in all of our activities has led to a lack of "slack" time, meaning if one part of the chain is late or an error occurs, the cascading consequences are huge. In my mind, this has added a lot of stress to everyone's lives. Folks are so dependent on things going according to plan, that it's very difficult to adjust with grace.
For Alex, development took it's own pace. The measurements I used to mark progress, holding her head up, crawling, feeding herself, walking, etc… changed the way I looked at things. They all occurred in their own pace, except it was only 3 days after her coarctation of the aorta surgery when she started crawling, the ligament wrapped around the aorta was depriving her lower body of blood flow. This was unnoticed by the doctors because they were only focused on down syndrome related anomalies, which this wasn't, so she was 1 year old before they figured it out, instead of right at birth. For awhile, I was angry about that, but over time I let it go, as she was immediately moving ahead now, and now is all we have anyway.
Certainly it's more fun when Alex is charming, engaging, hugging and cooperative than when she is mean, stubborn, late (on purpose) and sneaking food. I'm proud that I lose my temper with Alex just as fast as with my other children. I treat them all the same in their own way, which is different. Part of parenting is about picking your battles, allowing mistakes, hoping that in the long term they'll pick good choices.
Alex does bring a lot of joy and perspective into my life and the lives’ of others she touches, although I don't feel like her job in life is to teach others compassion, patience etc. It's okay for other people who come into contact with Alex to not care to be involved in her life.
Sometimes Alex sees things in a way that is so clear and simple that she discovers a new truth, which I like quite a bit. More often though, she doesn't understand the concept being discussed, but she will relate a part to something that has happened in her life to make a match and that's all she gets. That's ok too.
One thing that is difficult for many people when they deal with Alex is to wait that extra couple of seconds for her to respond. Silence and a break in the expected rhythm are disconcerting. They end up filling in her sentences or answering their own questions. Alex has learned that if she waits, problems will be solved without her input. This suits her fine; she really knows how to work the system, to get by without doing the hard work. Some of this is Down syndrome, some is inherited from me.
She is so surrounded by people who help her, whether it's at school, riding, skiing, teammates etc., that this strategy really works for her. I love to bust her on this with every new person in her life, because it's much easier to have respect and love for people who are taking part in their own lives as compared to helpless blobs that are only need machines. And once folks get the pace, Alex steps up and responds.
It is a bit sad for me to see her without much regular friendships. Although she is accepted very nicely by almost everyone, it's impractical to expect her school peers to be calling her up for sleepovers, parties etc. There are some kids who are especially nice to her, and I feel the kids who are naturally drawn in for whatever reason will end up with enriched, productive lives when they are adults through the delayed gratification of giving.
Alex has figured out how to enjoy time by herself, whether it's TV which I'm just as bad as most of the other parents who allow too much TV, or it's up in her room singing along to music, which I love, although when her door is closed I like it better than in the car, because her ear is much better than her voice.
At times Alex will immerse herself in art projects and that’s a wonderful pastime. Alex is beginning to facebook, text and call her old friend Sarah more often and that's a nice thing, as they only see each other once or twice a year now.
I'm certain that Alex will be able to get a job she can enjoy and a place to live with some level of independence someday, and that's the goal for all of my kids. She may do this earlier than my academia-nut daughter who is so into school, who knows how many advanced degrees she will attain before venturing out into the world.
I love the way my son interacts with Alex. He tries to be the food police, which I admire but for the tattling issue, he patiently asks for his things back that she has stolen from him; he knows how to explain things to her without talking down to her or getting frustrated. He teases her too- as any siblings would. He mentions when she has accomplishments, he is so kind to her it brings tears to my eyes.
He even signed up to with the Challenge Aspen internship in the spring instead of selecting a more interesting school choice like glass blowing or avalanche training. I remind him from time to time that it is not his job to be her keeper and that I do appreciate his efforts in his relationship with Alex.
I know having a sister with special needs will end up having a hugely positive influence on his life. I'm in no rush.
My only question - why has it taken me four months to talk about Alex, and it took John only a few pages?
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Really enjoyed your reflections, John.ReplyDelete
Bob Schoen, Research Down Syndrome, and a recent friend of The Extraordinary Life of an Ordinary Girl.