Sunday, September 27, 2009

Matt woke up to butterflies

Matt loves butterflies so to celebrate his 3rd birthday we decorated our lounge with these beautiful creatures. Unfortunately we didn't have the camera handy when we woke up and found his favourite animals perching on walls, picture frames and light switches.

In the afternoon we had a small party for Matt. We intentionally (but with difficulty) limited invites to the children that Matt knows and sees regularly. That way Matt would feel most comfortable and would not be overwhelemd by a big crowd.

The girls took to colouring in more butterflies for Matt.

Matt loved the food!

Robyn, Bryan, Daniella and Georgia - thrilled you could come

Jono and daughter Anna enjoying the balls. Smiley Grant turned into the "monster" that later chased the kids up and down our house, much to their absolute delight.

And what's a party without presents.

Maurietta had kindly agreed to sing some of Matt's nursery rhymes which she did with great enthusiasm. She captivated the attention of children and parents alike.

Anna drumming on the box!

Mom singing along, Matt enthralled

Ethan and Dad Richard clapping along.

Old Mac Donald had a rabbit...

So so so entertaining!

Matt loved the fact that everyone was singing his favourite songs - he sat there, entranced, grinning, and completely forgot to use his tamborine (which he usually shakes with much gasto!)

Matthew - we celebrate your 3 years!

Thursday, September 24, 2009

Am I being oversensitive?

It’s taken me a week to write this post. I have been chewing over my experience, wondering if I am over-sensitive or if I just see the world of special needs kids differently.

Last week I took Matt to a special needs school that runs a home-based preschool programme. This means that every month you bring your kiddie into the centre and they will offer advice on which toys and activities you should be doing with the child at home. In addition you can loan some toys for the month.

To join this programme ones child needs to be assessed using a milestone scale and cognitive test. I didn’t quite realise that this was required. So when Matt and I went their last week Wednesday I was taken by surprise. If you follow my blog you know that I have concerns about the way kids are assessed – I don’t see the point in comparing them to typical kids, and letting the parent know how far behind her child is. Rather I think the focus should be on where is your child at, what is the next step, and how to create a fun, exciting environment for the child to move there.

So there I was with Matt and the teacher. As it became clear that Matt was being assessed according to a scale used for typical kids I felt a nauseous. But I told myself that Matt was soon turning 3 and I should be older, stronger, and better able to deal with the outcome. Also the teacher doing the assessment was sweet and gentle. I could see that her motives were to see special needs kids progress and reach their potential. Though I didn’t directly express my concerns with the assessment, she reassured me that she believes in moving at the pace of the child allowing them to explore and discover. She was kind with Matt, and very generous with praise. I also told myself that we can’t hide from these assessments for ever, I may as well get used to them.

So I let the assessment continue. It ended with her reading out the results which were basically a summary of how delayed Matt is in the various areas of development. I can’t even remember the details – my heart was rebelling, not allowing my ears to hear or my mind to register the numbers, it was screaming out loudly that these measurements do not define who Matt is.

The days following that evaluation I felt raw. Like my protective layer has been removed and all the pain and vulnerability has been laid bare. I have been trying to unpack why I react to them so strongly. Here are some unfinished reflections…

Matt is so young to have to undergo so many evaluations. (And I know that Matt experiences less than some of his RTS siblings in other countries). His only worry in life should be what toy he feels like playing with, or how come mom hasn’t got his food ready on time. Not how many blocks this someone wants him to stack or stressing about drawing straight lines.

I have come to wonder how accurate these measurements are, and how do they take into account a child’s will; choice and timing. She would ask Matt to match two pictures of cats. But what if he decided that today he didn’t like the cats and was more interested in the picture of the house that has doors. (Matt loves doors) Does that mean he can’t match? And why should he do what she says, he doesn’t know her or trust her.

She would pull out a new toy to test some ability and sweetly coax Matt to engage with it. She didn’t give him breathing space to familiarise himself to the new toy. Sometimes he would oblige her by following directions and other times he wanted to first test the toy, get to know the toy, turn it, look at it, explore it. There was no time for that, either he used it appropriately or not. Either he could or he couldn’t. There didn’t seem like there was any room for any other explanation. I know I am being a bit harsh, but that is what it felt like. I just don’t think she got to know Matt or his potential.

And I don’t know how much of what was measured was Matt’s ability or if it is a measure of his level of exposure to that activity. Surely if you were measuring an ability you need to introduce the activity and give the kid time to learn how it works. You can see how they respond as they explore the toy. I think these assessments would work more effectively in a preschool setting where the teacher is with the child for a considerable length of time, and could see how the child engages with the toys or activities without the time pressure of an 1.5 hour assessment.

I have such a strong desire to protect Matt from this world of being measured and assessed and evaluated. Of having to stack and count and name and select. Of being gently and sweetly forced, coerced and manipulated into putting something into something else in the right order. Rather I want for him to try and see, to make a mess, to do things differently just for the fun of it, to test the various possibilities, to discover – even if it does take a bit longer, even if we can’t tick all the developmental milestones in the right order on the right time.

My last thought on this matter is that these evaluations seem to undermine the achievements and hard work that Matt has done. In our house every mini milestone is such a celebration because it requires much input, waiting, patience, wisdom, sensitivity, appropriate engagement, exploration, discovery, encouragement, and even more patience. This whole process is not recognised or validated, rather one is just left with a sense of what one’s child is NOT achieving.

And I think that makes me the most angry. I value Matt, and our life style of our celebrating too much to let it be spoilt by comparisons to typical kids and defining Matt by what he can’t do. I don’t know how I am going to survive this world of working with kids of special needs, I just seem to see things so differently.

Saturday, September 5, 2009

Having a ball

Matt's recently underwent an Occupational Therapy assessment. I had shared with the OT that I was not interested in having Matt compared to typical kids in terms of his milestones, but that she should rather help me understand where he is at, where he is heading towards, and what we can do to help him get there. And that is exactly what she did - so we are now armed with lots of fun and creative ways to partner Matt in his development. The first idea that we put into practice can be seen below. A very simple design - just an old ball pushed into an old pair of stockings - and the result is hours of delightful entertainment.

Matt literally laughs out loud with joy as he plays.