Wednesday, July 16, 2008

an email

since fidning out about Abacus being trisomy 21, we've been put in contact with so many people who have experience with other people with trisomy 21 through both formal and random interactions, and they're all so supportive. The following is an amazing email from an awesome mother danielle was put in contact with through her tutor.

Dear Danielle,

Abacus is so lucky! You're such a young mother, yet you're so wise and you've made a fantastic start.

First: you WON'T be devoting every moment to your 'disabled' child. That was definitely a fear I had and at 27 had no desire to devote the rest of my life to self sacrifice in that manner. Thank heaven that's not at all how it turned out. I think among the most important realisations that came to me (probably encouraged by some sensible well-wisher) was to take each day as it came and not to dwell on the future. I found that absolutely liberating.

Obviously, people like you and me DO think about the future. We wouldn't have managed to plod through degrees etc without that future orientation. But there's a difference between constructive preparation and being weighed down by anxiety.

Another vital piece of information for me came from a psychologist I met a grand total of once. He was the one who set me on the path of helping Jamie develop much better than would otherwise have been the case. What I remember so clearly from him were two pieces of advice. One was that Jamie would be likely to be placid and be happy to lie hour upon hour in his cot. I should resist the temptation to let him do that, but should ensure that he received good levels of stimulation. I took that advice to heart and I'm so glad I did.

The second piece of information was that I shouldn't settle for unnecessarily low levels of achievement. He said that (remember this was 35 years ago) researchers would go into institutions, put a book in front of someone with DS, find they couldn't read it and conclude that people with DS weren't capable of reading. He said, "Nobody had ever tried to teach them!" So I bore that in mind.

Three years later, when Jamie's speech therapist suggested to me that if I taught him to read, it might help his spoken language, I privately thought she was crazy, but set about doing it. I devised a really effective and simple and fun system, which I'll be delighted to share with you if and when you're interested, later.

Jamie became a really, really good reader and that opened up every door, subsequently. So I'm hugely grateful for that one encounter with one uniquely encouraging individual.

I really identify with what you say about the kind of people you mix with – bookish, word-minded, interested in the world. We too. The wonderful thing, as it's turned out, is that Jamie has 'imbibed' from his environment a comfort with that sort of milieu. He has developed his own particular interests that have greatly surprised us. He was a pioneer in DS terms at Auckland Grammar School and just loved learning history. He actually won a prize for achievement in history. The things that most fascinated him were the build up to the Second World War and everything to do with President Kennedy, Cuba, assassination etc. So he's our family expert on those things.

For me, the most amazing time was when his younger brother, David, who is known by us to be the brightest person in our family (now a lawyer in New York, gggrr!!) had left till the last minute a project he had to do for 5th form history. It was due in the next day. I was tired and wanted to go to bed, but couldn't leave David to struggle alone. Then I remembered Jamie, who was lying on his stomach in the family room watching TV. David had to complete a time-line about the time preceding WW2. I remember yelling out to Jamie, "Jamie, when was the Reichstag fire?". The answer came back immediately. "Jamie, when was the Anschluss into Austria?" The answer came back immediately. "Jamie, when was...." And the answers, accurate, came back immediately. The time-line was completed fast!

Jamie is our resident expert on elections in New Zealand and the United States. If we're home late-ish and there's been a poll result, he'll give it, with the greatest accuracy. He has worked out possible Cabinet places in the event of a National or a Labour Government. He goes on to the websites and ensures he's up to date.

I remember my mother and her sister, both in their 80s, having a dispute about the dates of the Boer War. Mum phoned Jamie to settle it!!

It's not all heavy. He's up to date with 'Shortland Street', too, and just loves a number of 'soaps'.

Our other children went to Hebrew School – the Sunday morning session to learn Hebrew and some religious knowledge. We wanted Jamie to go too, for integration purposes. We didn't have any expectations. It turned out that he picked up Hebrew reading very fast and is still faster than I am at it. He also picked up grammatical structures, so that he could ensure agreement in gender and number. That amazed me. He's probably lost that latter capacity for lack of practice. But at Grammar School, he was one of the better ones in his class at French. He's probably lost that, too, now.

So – no lack of talents and no difficulty in fitting in with a group of people of the kind you describe. If we're playing Scrabble, we'll usually pair Jamie with someone. Same with Trivial Pursuit, but somehow there's no problem. And his grasp of the world plus his natural social graces mean that he can mix very widely. If and when the conversation is puzzling to him he simply sits quietly, but never offers comments that are out of place.

Anyway, I must return to duller things, but I wanted to respond to you as soon as I felt well enough to sit in front of the computer for a while.

Do please keep in touch, Danielle. Warmest regards to you, to your partner and to the lucky little Abacus!


Anonymous said...

what a nice lady.

it's been super interesting seeing you transition from shock and bracing to more fun having. good work.

also... all your appointments are making me dizzy.

Anonymous said...

I wonder who the psychologist was. I knew a number of those in Auckland then and am not surprised by the comments. It's great that such a story eventuated.

And just in case the Shadows ever emerge, remember the Vorlons.