I have always advocated and will always advocate for Alex in terms of others' perceptions of her cognitive abilities. I do not believe anyone should be judged by their diagnosis and down syndrome is no exception. I try never to underestimate her and find myself reminding her teachers to raise their expectations. I also try to understand their perceptions were formed a long time ago, and Alex had nothing to do with it.
When Alex puts her mind to something, it will get done. I expect her to do it, and she does. Sometimes all she needs is a little more time, or a little more explanation, but I always believe. It has been quite interesting to watch Alex learn. Although, I still do not know what makes the synapses in her brain connect, I do know they connect at a different speed than mine. The whole process is fascinating. Basically I think Alex learns in what we call mountains, valleys and plateaus
In the early years I was concerned that Alex was not learning basic skills, as she was slower than her peers. However, there was enough research, reading materials and other parents with children with special needs, that I was able to gain confidence in Alex's future. I learned this was my new "normal", and we embraced it.
The way I look at it, Alex retains tons of information in her brain and when it all makes sense to her, it becomes learning. I think it is harder for her to implement new skills, just like with speech. The learning is there but the actual development and practice just take a bit longer. Sometimes it can take weeks and months , sometimes a second, it just depends on how she connects everything in her brain. But it is there, as she will come up with the oddest memories at the strangest time.
This delay has become more pronounced as she has gotten older, but I knew to expect it. I remember the frustration of changing her diaper when she was three, but I believed at some point she would toilet trained. She was at four and has been ever since. I remember the monotony of spoon feeding her when she was three and a half. But at four she mastered the spoon, at four and a half the fork, and at five the knife. Now she makes her own breakfast and lunch. If we are not home, I will leave a frozen dinner and she will make it for herself. I always expected these milestones to be reached and she has over passed them.
Sometimes, it seems like she has climbed the tallest mountain, as when she was finally toilet trained. Sometimes I feel she is back in the valley, when we have challenges with speech. Mostly though we spend a lot of time on the plateaus, where I feel she will never master a new skill. But then she does. I just have to believe.
A perfect example of a recent plateau occurred in sixth grade. We were in a new school district, and Alex seemed to be getting the same homework over and over again. When I asked the teacher she told me that Alex had not mastered the lesson. The teacher's expectation was for Alex to be able to retell the story. Well, even Alex will tell you she is not a trained seal and will not regurgitate on command.
To make this long story short, I asked the teacher to move to a different lesson and then go back and ask Alex a few weeks later about the previous lesson. I explained that Alex was learning the lesson but needed a bit of time to process it. Once again, through advocating and understanding, the teacher also learned the lesson, expect the best and Alex will prove herself over and over again. It is just a matter of recognizing the plateaus are merely resting places for Alex to catch herself up.
Climbing mountains is something Alex does with frequency, and we push her. For example Alex learned to ski very quickly, we recognized she liked it and really pushed her to master this skill. I believe it equalizes her, she wears so much gear nobody looks at her differently and she can be her own person. She has also excelled in this skill in the Special Olympics, and this has given her confidence and pride. We live in the mountains and we expected her to learn to ski, and she did.
I am always trying to figure out what makes Alex tick, what can I do to help her learn a new skill? What connection do I have to facilitate in her mind for something to make sense to her? I often need to remind myself that she is different than me, and my other kids. But I also know she is similar to me and my other kids in many many ways. She can step up to the plate and perform. She can read, write, multiply, subtract and play High School sports. Alex has a promising future and a fulfilling life ahead of her. I am proud of her and her determination to have a great life. This wasn’t me that did this, it was all Alex.
In the last 16 years, I have learned to love the mountains, dread the valleys and appreciate the respite of the plateaus. But always, I believe. I have the highest of expectations for Alex and she never disappoints me.
I've been reading all of these wonderful posts and haven't had time to stop and praise you for each one but they are truly great and so helpful. They'll make a nice book someday!ReplyDelete
You know the bookstore I went to has a machine that actually creates hard books! Very cool!