Before I saw the Facebook Challenge from the IDSC yesterday I had made a Challenge for myself. March 21st is World Down syndrome Day! It's an important day for us and I decided it deserved some of the same build up and recognition that we did for Down syndrome Awareness Month in October. So here I go again. Because Down syndrome is characterized by a 3rd copy of the 21st Chromosome some people who are much smarter and organized than me, got the rest of us going to recognize 03-21 every year to be the big deal it should be.
So anyway, here's my part - writing about life with Bradley. I was considering my topics to write about today, and I touched on the Parent/Teacher Conferences we had yesterday for the girls. I am a teacher by trade, there for a while it seemed like the only subject I was ever going to teach was English: grammar and Composition to the Americans and Conversation, grammar and idioms to the Japanese. When the girls started school suddenly I realized that there might be some math education in there and possibly, oh, I don't know, Social Studies and Geography. I realized my educational background did not prepare me for this new job of mine. I had the boat in the water and no engine, I didn't even have a paddle. So I had to educate myself, going over Kindergarten, then 1st grade...etc...on upward through the curriculum trying to keep up with my girls as they were progressing in school. www.ask.com, you are my friend as you help me stumble over math that is so easy that I don't remember how far back I have to go in my memory to explain it. Inevitably, I am trying to explain the problem at a 7th or 8th grade level and my daughter is staring at me like I have a second head ...then a little Internet surfing and I realize I have taken the very simple answer to the problem around the block four times, up the stairs, over the railing and back down into the pool before I climb out dry off and provide the solution. I use to keep track daily but now they don't need my help daily and they're going to leave me too far behind. Because the thing is, my daughters are wicked smart. My 5th grader is a Math Star and her writing is incredible and my 3rd grader is the only kid in her class into 4th grade math and her writing is just as amazing. Their reading levels are off the charts, and though they will tell you they are smart and one of the smartest in their class, there is no malice or conceit, it is merely a statement of fact. And even better, these are the girls that the class likes, the polite girls, the sweet girls in the class. So probably needless to say we came off the conferences yesterday trying to keep buttons from flying off we were so proud of them.
And then today we come back to earth. I had been circling in my head where I feel Bradley is with his feeding. The fact he is getting so many calories orally is so encouraging, and though I was definitely not for weaning as yet since he doesn't possess a strong bite and chew method - I was still feeling pretty good about his progress. But then his progress report came in today, and his feeding therapist, who is known through the area as the best in the business, laid out how very far he has to go, which it turns out is really, really, really, far. Sucks! And then there's all his other assessments that put him so much lower than we wanted. But that's how those go, his therapist works with him every week and he's willing to try all kinds of things and then for the Assessments a new therapists wants him to try all these new things and he is less than thrilled by their presence let alone their demands. My boy gets shy and withdraws when they push. He has personal space just like everyone does, his just happens to be the ENTIRE living room - and they invaded. So those reports were a little rough as well. And every time we get the progress reports I have to step back and regroup - remind myself it isn't personal and that it's only important to the insurance companies that want to make sure that the therapies are worthwhile and the school district so they know he needs to keep having a teacher and therapists each week. Yeah okay. But it still stings in the heart region.
I promise I'm not the mom in denial, I know that my son is delayed. That doesn't stop me from sitting with him in front of his IPad and doing ABCmouse with him. And it doesn't come near to stopping my excitement as he learns and then masters new techniques. Here's my thinking, he might not get it right away, so we practice it - over and over. Some of my research has taught me that his short term memory is a bit like Swiss Cheese, but where the holes move around. I was a huge "Quantum Leap" fan, so I get this, and I can embrace this thinking and make it work in our life. That being said, I have determined that I will just work on Bradley learning. We don't have to stop trying to learn once he graduates from High School, we can keep training his brain for every next step. There doesn't have to be a point where there is no next step for him, there's always something new for us to learn. Us. You read that right, we have a lot to learn together. "We" are learning sign language and adding to our vocabulary. "We" are learning how to eat: he does the physical side and I am up to eyebrows in the how, why, cause and effect of it. I realized today that my son doesn't know how to: run, skip, or jump yet. So guess what, I have to learn how to teach him how to do those things. And it just takes me right back to Japan and teaching English all over again. If my student wasn't understanding I would work the problem around and around until I found the solution that worked for them and they finally understood. Turns out Bradley is no different.
Turns out the girls are no different, only they don't take so many turns in my brain to find the solution they need. So now I'm learning to be patient and let the ideas formulate, trial and error, then formulate some more. But here's the good news: between Madison and Sydney, I have no doubt that he will be reading and writing because if he doesn't listen to me - he wants to be with them and do everything like them. In the future, this will work in all the best possible ways. But I don't think that this is one-sided either. These girls with the amazing intellect and busy brains sometimes need to just "Be." That's something that Bradley gives them, when they stop buzzing around like bees to the hive and they just sit with him and read or play...they get the opportunity to just "Be" in the moment with their brother. I think they need it as much as he does.
The Progress reports are always going to be rough, they're always going to tell us what he can't do. From there we just build back up by going over all he can do and letting it play through our heads like a mantra until the sting eases off. Whenever I start to think too much about Bradley's delays and let the worries start to have too much weight in my mind I remind myself this: The best life, a good life, is often lead by the person that has no problem meeting their own eyes in the mirror. Having an extra chromosome doesn't guarantee this, but neither does not having one. In the end, if all three of my kids live good lives, then that's all that really matters.
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