Our son Matt has brought such joy to us and through him we have learnt so many things about ourselves and life. He has a rare genetic syndrome called Rubinstein-Taybi Syndrome. This blog is where we process the things we have learnt, where we share our challenges and pains, and where we celebrate small victories.
Monday, February 28, 2011
Music to my ears
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
Saturday, February 26, 2011
We are going...
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
Monday, February 7, 2011
Who needs expensive toys??
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
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
Tuesday, January 18, 2011
Marathon mind-set
Monday, January 10, 2011
Sunday, January 9, 2011
Toilet Training
Saturday, January 8, 2011
Friday, December 31, 2010
Clever
I think it was in November - we were watching the news and Matt saw some aeroplanes on the TV. He became excited, pointed, and signed aeroplane (while saying "ane, ane"). He then jumped up, rummaged through his toys, until he found his aeroplane puzzle. With great agitation he pointed to the aeroplane puzzle and then to the TV.
"Yes Matt there is an aeroplane on the TV and on your puzzle, you are really good at joining the dots, aren't you???" I said
Matt grinned at me, and gave me a look that communicated healthy confidence whilst also communicated a mom-you-should-know-me-better message. Then he signed the word clever whilst boldly declaring "vava".
What could I say, Matt is indeed clever.
Wednesday, December 29, 2010
Vulnerable
Monday, December 27, 2010
Best Christmas Present
What a joyous Christmas present - to be completely cast free!!!!!

Sunday, December 26, 2010
Holiday
Wednesday, December 15, 2010
Greater freedom
RTS Cape Town
It proved to be very tricky to get all three cutie-pies to remain seated, looking at the camera and smiling - despite a very energetic rendition of Wheels-Of-The-Bus by yours truly. So this pic was the best of the lot.
Matt's end of year concert

Sunday, November 21, 2010
Rejoice always
Matt is teaching us a lesson on being joyful in all circumstances. Here is a short clip of him dancing during worship time at church. Not letting his cast hold him back. He is my inspiration.
(Sorry for the sound quality - I was using my cell phone)
Rejoice always
1 Thessalonians 5: 16
Saturday, November 20, 2010
Take 2
Maybe its because the weather is now much hotter and we are more aware of how much water play, swimming and bath time Matt is missing out on.
Maybe its because it is more uncomfortable - it contains plaster as well as fibre glass as it has been specially scuplted to Matt's arm to limit his movement (which is good for healing but makes it heavier); and it has a built-in sling keeping it firmly in place (the previous one's detachable sling lasted 10 minutes with Matt). The increased discomfort has made sleep hard causing great frustration and wakefullness at night!
Maybe its because he is not allowed to remove the sling even to put clothes on so he has to wear his t-shirt over his arm and cast, which doesn't really fit and is rather annoying.
Maybe its because the memory of how the cast was fitted brings back unpleasant feelings. Matt was put under anaesthetic so that the doc could manipulate into place his broken, angled bones and then put them in cast. After he came around from the drugs he was in the grumpiest mood he has ever been in (understandably - poor guy).
So what caused Matt to break his arm again, 2 weeks after his cast had been removed? No he didn't fall off a jungle gym or tumble down the stairs or get his by a truck...he was just walking, holding his teachers hand, decided to change direction, tripped and (while still being held by the other hand) caught himself on his arm at just the wrong angle. Same break, same arm.
Just 32 more sleeps.
Saturday, November 13, 2010
Challenging Expectations
I intevened: "Please explain to Matt what is happening and what you are doing. He really does understand"
Freedom
We were very proud of Matt how he endured wearing the cast and also its' rather brutal removal.
His arm is still a bit tender, as it is not fully healed. Apparently the bone actually requires movement now to assist the healing process. Whilst it is still weak Matt should take it easy and try not to fall on it. Hhhmm that is going to be interesting.
Saturday, November 6, 2010
Matt turns 4!

Thursday, October 28, 2010
Tuesday, October 26, 2010
Tuesday, October 12, 2010
A mystery
