Thursday, April 21, 2011

Matt - what's he up to?

It has been a while since I posted about Matt, so here is an update. (When I first wrote this sentence I had written quick update, but now that I have finished the post I had to return to the top and delete the word quick - but trust you will find it interesting)

Matt has fallen in love with letters - we are not sure how this happened, but we think it goes back to Lloyd and Matt playing with foam letters during bath times. Matt has discovered that letters have sounds that goes with them and he loves pointing them out. He is particularly found of the letter B - and will start yelling Ba Ba Ba in the supermarket as we pass the Butchery or the Bakery. He also confidently recognises A C D E F H M O S and T. We have found a cool online alphabet game that he just LOVES, so we watch in amazement as Matt is learning the basics of reading.

Matt is determined to get words out and is definitely putting more pressure on himself to do so than anyone else. Though we remind him of the correct pronounciation, we try hard NOT to force him to say it right, and we still strongly encourage his singing, but HE wants to say it, and HE wants to say it correctly. He sometimes gets really frustrated when he can't get sound out when he knows he has done it before. And there is nothing to describe the joy on his face when the word slides out with ease and grace. Matt is conquering the S sound, and can now say SUN, SEE, SOCK, SING, SEEP (sleep) and SUPPER...and the F sound FISH, FAN, FOUR, FIVE and the C sound CAR, COW, CAT. The M sounds is his newest aquisition so it takes a bit of concentration but  he can now proudly say MATT. He is still working on applying the letter B, but he has firmly claimed the word BUS. Which is repeated at least 40 times a day as his request for me to sing Wheels on the Bus.

In the midst of these strides forward we are facing another development - frustration and jealousy with his younger brother Nic. Matt definitely loves Nic and will show concern and care towards him. But like most of us, he has mixed feelings and now that Nic is mobile and very engaging with others Matt has started hitting and kicking. So Lloyd and I are learning more about setting boundaries, whilst still being very focussed on showing love to Matt. An interesting balance - we have a lot to learn.

A FUN development which completely melted my heart is that after Matt's speech therapy session yesterday he told me what he had done. Lloyd had taken Matt to the session so I wasn't there to see what had happened. When Matt came home I asked Matt what he had done with Julia. And Matt said "OOK" (he signed BOOK) and said "OW" (he signed COW). Lloyd confirmed that Matt had indeed been working through a book with a cow, where you could press a button to make it moo. Obviously this made an impression on Matt. I was thrilled he shared this. After school or therapy sessions, or when Lloyd comes home from work, we always ask him about what he did - and this has been the first time that he answered. I love this growing communication.

This update would not be complete without a progress report on the potty training. I am happy to report that as long as we remind Matt every hour or so to make a wee then he is able to stay dry. He can wee standing on a step in front on the toilet, in the potty or outdoors in the garden (the latter being his favourite spot). He has recently gone outside on his own to make a wee. He hasn't yet asked to go.
The poo story is a bit of a one-step-forward-and-one-step-back journey. Lots of accidents and lots of small successes. But the latest news is that two days in a row Matt has gone to sit on the potty by himself, without any prompting from us, and made a poo. We wait to see if this will continue. I have asked the RTS Conference organisers to arrange to have a potty in our room in Holland so that there won't be a break in Matt's toilet training journey.

I could share more as Matt's life is brimming with discoveries and exploration, but I will leave it there for now. I think the main highlights have been covered. I'll try not let so much time lapse before I next update about Matt.

10 more sleeps

until we all embark on a plane that will take us to Holland for the RTS International Conference.

We are mostly organised: got the passports, got enough clothes for the boys, got the medications that we might need (but really praying we don't), got the suitcases, got fun, cheap toys that will be wrapped entertainment on the long flights, got my lists... I do wonder if there is something that I have forgotten to think of.

Once I look past the stress of packing and leaving I am quite excited about it all. I haven't really shared it with Matt yet - I think a week before the time, after Easter, we will start doing a week count down and start preparing him for the adventure.

Only 10 more sleeps!

Saturday, April 16, 2011

Book Review: Expecting Adam

I recently re-read Expecting Adam by Martha Beck. It is a true life story of Martha's account of her pregnancy with a little boy who has Down Syndrome. She is a captivating writer with such  crisp descriptions of emotions and events that one can't help but feel completely in the moment with her. I appreciated her slightly dry sense of humour that is sprinkled in between fairly serious thoughts. Most of the account is about her journey of coming to terms with having a child with special needs, in the midst of the worst morning sickness I have ever heard about, whilst dealing with the very fierce expectations of how woman should cope from her Harvard environment, and simultaneously trying to make sense of the unfamiliar and profound spiritual moments that were breaking into her very rational world.

I loved the stories about her son that she wove into the fabric of the story - engaging, joyous and celebratory stories from his life that contrasted the struggles she was facing in coming to terms with the diagnosis. Being a mom of a kiddie with special needs I would have appreciated more about him, but as the title clearly states the book is about her season of expecting him, rather than raising him. I couldn't connect with some of her interpretations of the spiritual moments that clearly made a deep and lasting impact on her. My Christian world view would have interpretted her experiences differently. I have to acknowledge that I was reading her journey and I was hearing her story - she wasn't trying to convince me to believe as she did.

From what I have read, I think she is now an influencial life coach with columns in prominent magazines and newspapers, and has also been on TV. This is her website: I must admit that I was a bit disappointed to find nothing about Adam, nor the journey of raising a kid with special needs as part of her current portrayal of who she is. I would think that much of the lessons that she is now sharing with others were birthed and refined through her struggles and victories of parenting a child with special needs. Maybe she shares that in her work, but it is sadly absent on the website.

I first read this book about 8 years ago. Lloyd and I, together with a couple other close friends, were on a 4 month road trip around Eastern Africa. We all swopped each other's books. And someone had brought along Expecting Adam. I think if we were back home in "normal life" we wouldn't really have picked up such a book, let alone both Lloyd and I read it one after the other. Given the many hours spent on the road, we had a good chance to chat through the books we were reading. In fact this book sparked what turns out to be a pivotal conversation for us as a couple - we chatted about what we would do were we in Martha's position; about the pros and cons of using abortion in cases of medical conditions; about our values; about what it would be like to have a kid who had some kind of disability. At the time it was all theory for us. But it really laid a foundation for us in preparation for the time when we needed to face those issues in our own lives. Looking back I am deeply grateful for that opportunity.

As I read this book last month, I chuckled to myself at what a different person I am now, and how different parts of the story meant more to me now than they did 8 years ago. Understandably, given my journey with Matt, I have a new set of eyes to view Martha's story, and for that matter, to view the world. Re-reading this book highlighted for me the extent to which my perspectives have radically altered. And I am deeply grateful for my new perspective on life.

One thing that did remain the same though, is that I was attracted to the exact same paragraph in the book both times. I actually wrote it my journal back then in 2003, and blogged about it yesterday. To read the quote in context you'll have to read yesterday's post. And just because it is such a profound statement I will repeat it here once more:

This is the part of us that makes our brief, improbable little lives worth living: the ability to reach through our own isolation and find strength, and comfort, and warmth for and in each other. This is what human beings do. This is what we live for, the way horses live to run.

Friday, April 15, 2011

What do we live to do, the way a horse lives to run?

Husband John and pregnant wife Martha have just undergone tests to see if their unborn baby has Down Syndrome. They do not know the outcome of the test yet. We join them in a midst of a heated debate about how to handle the possible outcome...

"Look, honey, nothing's worng with our baby," he said. "Our baby is fine. And yes, I agree with you that birth defects are a tragedy any way you look at it, but abortion is a way to deal with the problem, you know? To limit it. That's all I was saying."

I wiped my eyes with a paper napkin and peered at my husband's weary, frustrated face.  "And you'd still want me to abort this baby if it wasn't normal," I said, "Wouldn't you?"

John pulled in a deep breathe and let it out slowly. He looked terribly tired. "Look." he said. "I know I can't always see things from your perspective, and I'm sorry about that. But the way I see it, if a baby is going to be deformed or something, abortion is a way to keep everyone from suffering - especially that baby. It's like shooting a horse that's broken its let." John's father had been born to a clan of sheepherders, and he was always quick with barnyard analogies.
"A lame honse dies slowly, you know?" said John. "It dies in terrible pain. And it can't run anymore, so it can't enjoy life even if it doesn't die. Horses live to run; that's what they do. If a baby is born not being able to do what other people do, I think it's better not to prolong its suffering."

I nodded. The torrent of emotion seemed to be passing. I felt as though a hurricane had swept through me, leaving me hollow and exhausted. I swallowed a mouthful of orange juice and closed my eyes.
"And what is it," I said softly, more to myself than to John, "What is it that people do? What do we live to do, the way a horse lives to run?"
I didn't expect an answer, and John didn't give me one. He just moved his chair closer to mine and put an arm around my shoulders. "You're awfully tired, aren't you?" I nodded trying to hold back another wave of tears.

"Let's get you home," he said, stroking my hair. "You look so pale - how much blood did the vampire nurses take, anyway?" I managed to smile. "Just enough for their midnight buffet." John smiled....

...I just rested my face against John's chest and closed my eyes again. John brought his other arm around and folded me to his chest. He was still wearing his bulky down parka. It was like a pillow against my cheek. I could feel his heart beating beneath the coat. For a moment, I let the anxiety in my chest relax, let myself forget everything I had to do that day, let myself feel utterly safe. And then I understood that John was answering my question, even though he didn't know he was. This is it, I thought. This is the part of us that makes our brief, imporbable little lives worth living: the ability to reach through our own isolation and find strength, and comfort, and warmth for and in each other. This is what human beings do. This is what we live for, the way horses live to run.

Taken from the book Expecting Adam by Martha Beck, pages 134-136

This is the part of us that makes our brief, improbable little lives worth living: the ability to reach through our own isolation and find strength, and comfort, and warmth for and in each other. This is what human beings do. This is what we live for, the way horses live to run.