Monday, February 28, 2011

Music to my ears

For many months now, except being able to say mama and dad, Matt has been saying the ends of words, for example "eep" for sheep and "ook" for book. But last week he uttered his first full word with a consonant in the beginning and a differnet consonant in the middle!!!! In the video you can see he is telling his brain what it needs to do to help his mouth make the all the sounds.

video


Since then Matt has been practicing this word over and over. I hear him saying it to himself when he is playing. A week later he is now getting more confident in puttiing the s in front of other words. He can now say see and sun. He struggles a bit with combinations but says sar for star, side for slide, sing for swing, and seep for sleep. I love hearing his melodic voice as he says his words - it is music to my ears.

Potty Update #2

Matt broke his potty. It was one of those with legs and he was using his legs to shuffle forwards and backwards with it. The one leg broke - poor little guy got such a fright. We have got two new potties that are a lot more sturdy. We haven't been having a whole lot of progress with the poo in the potty thing since our last post. Lots of accidents. But we keep going - good thing we have a marathon mindset.

Saturday, February 26, 2011

We are going...

to the RTS international conference in Holland in May!!!!!

Check it out: http://www.rtsconference2011.com/

After months of discussion, dreaming, budgetting, praying, thinking, talking, planning, contemplating, and researching...we decided to go!

It's a family conference - so Matt is coming too, so is baby brother Nic (and so is Matt's granny to keep us all sane)

We are looking forward to meeting other families from across the world who have kids with RTS. Possibly also meet some adults with RTS. We hope to learn from the many workshops and talks.

And we can't just fly to Holland for 3 days and come home again...soooooo we are also going to Denmark for a week following the conference. My mom is from Denmark - she met my dad when he was travelling around Europe; they fell in love and the rest is history. She moved to South Africa, and I was born. We could never afford to travel to Denmark as a family. So I am looking forward to her showing us around her childhood places. And the added bonus is that my brother (and hopefully his wife) will join us in Denmark too. They live in Canada and we haven't seen them since they left for Canada 2 years ago. The cool thing is that my mom taught my brother and I to speak Danish so we will finally get a chance to use it on real Danes. We are trying to convince my dad to join us too - more budgetting and discussion needed there.

Anyway, I digress. We are going on an adventure and we are so excited.

Saturday, February 12, 2011

Potty Update

Matt came to Lloyd this morning and told him "..ee" meaning wee and then picked up his potty, took it outside in the garden. He sat himself down and made a poo. Although he have been having a lot of success getting him to use the potty, this is the first time Matt has initiated using the potty at the appropriate time.

Monday, February 7, 2011

Who needs expensive toys??

Yesterday whilst I was putting Nic down for a nap, Matt discovered our pots and pans draw. I came downstairs to discover that all our pots, pans, lids, sieves, colander, baking trays, muffin trays, cake tins and cooling racks were scattered across our kitchen and lounge floor. Matt had taken ownership of the enormous wok lid, as well as the lid for a small camping kettle, and was busy spinning them on the floor. He was so engrossed - which one spins faster and longer. He didn't notice his mom quietly observing his fascination. The game changed - lets try them as hats - the big one came right down to his shoulders, the smaller one needed to be balanced on his head. I heard him chuckle as the small one tumbled to the ground. I busied myself in the kitchen (tidying up the cooking equipment), giving him space to explore on his own. Later I checked in on him and saw that he was still playing with the lids - this time hiding toys of various sizes under the lids. And stacking toys on top of the lids. I caught his eye - he excitedly signed and explained "..ig ..id" big lid and then "....all ..id" small lid.
Next he made his way outside into the splash pool with the lids. And discovered that the wok lid makes a good drum.

And when the drumming was done, he went for an imaginary drive with the steering wheel. He tried steering with the smaller lid, but decided the bigger one did a much better job.


Finally there was the matter of figuring out why the big lid floats whilst the smaller one doesn't. And why when you pull the big lid out of the water it seems to get stuck with the vacuum, whilst the smaller one can be pulled out with ease.

Who needs expensive toys when you are as curious as Matt? It was fun watching him learn.

Embracing

Not quite a week into my expedition. 12 pre-primary schools have been phoned. 6 schools have been visited. And what have I learnt?

Lesson 1: In this day and age there are still schools that really don't want kids with special needs. One school told me straight out that they can't accept Matt. Another principal was friendly and smiley until I mentiond "special needs" - her eyes narrowed and she started telling me that the school wouldn't suit Matt because the kids move classrooms alot? What did she mean by that I am not sure? And then she asked if I had heard of about a local special needs school, her message was clear. As she gave me the tour, I told her I didn't think the school was a good fit for Matt. Not because of the school, or the fact that the kids move classrooms alot - but because of her attitude.

It has been hard growing some "rhino hide" to stand strong in the face of people not understanding Matt, and not wanting to understand Matt. And I am coming to realise that they are the ones that are missing out the most.

Lesson 2: There is a difference between tolerance and acceptance. Most of the principals I spoke to were polite and open to discuss how they would include Matt in their school. Their main concern was that Matt's presence wouldn't disrupt the school, the other kids or the teacher - so much of their discussion was about how to ensure this. I thought that this was the best that I could expect, until I came across a remarkable principal. Mrs R seemed excited at the thought of having Matt at the school, she was eager to tell me how the staff would include him, she asked questions that showed me that she understood Matt - and that she really wanted him to flourish. Yes she did speak about how the needs of the other kids also need to be honoured, but she did so in a balanced way. I was moved to tears by the way she embraced Matt's presence at her school. I asked her about her accepting attitude. She explained to me that a number of years ago a mother of a boy with Down Syndrome had approached her to let him come to her school. This was a pioneering move at the time, but Mrs R did so because she couldn't deny any child education. The young boy made a deep impression on her, so much so that she went to do her honours in Special Needs Education. Her compassion and heart shown through her eyes as she told this story.

I thank God for people like Mrs R who are willing to let their hearts grow bigger. I thank God for children like this young boy who have paved the way for Matt. I hope to meet him one day, and his mother, and to thank them.

Tuesday, February 1, 2011

An expedition begins

I wish I had a travel guide to Holland - not the real country, but the one written about in the poem where Holland is a metaphor for raising a child who has special needs.
We have reached the point where we need to find a preschool for Matt for next year; and also need to start thinking about school for the year after that. Part of me wishes Matt could just stay in his little playgroup forever - he is just so happy and comfortable there. He is understood and liked for who he is. But I know that he is growing up, and with that means finding the next educational step for him.
Last week I met with an educational psychologist who will be an important resource in terms of helping us understand Matt's capacity- will he cope in mainstream with support, or in a remedial school or is a special needs school better for him?
The educational psychologist is definitely a "tourist guide" in this unknown land of Holland, but we still have to do the leg work; there is still so much uncharted territory; and there are no guarantees or definites. There are no specific preschools who cater for kids with special needs so we just have to visit all of them in our area to see which one might work for Matt. It feels like a tricky task - trying to discern how Matt would fit in the school. Trying to read between the lines as to the real attitudes of the principals and teachers towards kids with special needs.
Today I stood in a classroom as a principal was giving me a tour of the preschool. She was telling me about how the teachers interact wtih the children, and explaining their philosophy around education. Half listening to her, I was battling my own doubts. I couldn't imagine Matt in a class with 20 other kids - I was scared he would disappear in the background. I wondered if he would be able to make himself understood. I was fighting fears of him being teased by other kids, or under-estimated by the teacher. She showed me the toilet facilities, and I wondered if Matt will be toilet trained by then.
I left wondering how on earth I would be able to make a decision about which school would be best for Matt. There are just so many unknown variables. The psychologist wants to wait before he does an official assessment of Matt, because he says so much can change in a year. I wonder what Matt will be like in a year? How do I make a decision today about next year?
Over the next two weeks I will be visiting a handful of preschools to see what they have to offer, to carefully watch the facial expressions of the princial as I mention that my child has special needs. I am praying for wisdom and discernment beyond my natural ability.
In 2003 my husband and myself, along with some close friends, undertook a 4 month overland travel through south and east africa. We headed off into the sunset with two sketchy guidebooks, relying heavily on information from the locals as we got to the different places. Not stressing too much about where we might be in a few weeks, rather we enjoyed the adventure and exploration of the unkown. That is the kind of attitude I am needing as I start this expedition.