Matt is sitting in the bath tonight, playing with a big red toy boat.
He signs MAN
...follows this with a confident spoken SIT
...then a less confident ON (signs it too in case we didn't hear)
...a pause, then THE (whispers this because its a newly acquired spoken word)
...and ends with a triumphant and bold BOAT.
MAN SIT ON THE BOAT
A five word sentence!!!!!
Matt was super chuffed with himself and went on to repeat it once more. Lloyd and I speechless - not because we are surprised by our clever boy, rather the emotion of the moment was particularly overwhelming.
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.
Sunday, July 31, 2011
Wednesday, July 27, 2011
"Swing...broke"
More more he called & signed as I pushed him on the swing. Big swing he joyfully cried out, meaning that it was going really fast. Matt hardly gets much time in his swing at home these days because Nic tends to crawl in front of it. Nic was asleep then so Matt and I were having some uninterrupted bonding time, and Matt was enjoying his quality swing time.
And that is when it happened, the rope holding the one side of the swing up snapped. In mid-flight. At great speed. Matt toppled over, landing on his head as this swing dragged him backwards. Oh that I could have reached out fast enough to break his fall. The image still haunts me.
I was convinced something would be broken - an arm, a cheek bone, his skull!!!! Matt was screaming! Sometimes being a mom is really hard.
Once we both calmed down, I asked him to move his arms, fingers, toes, neck, head and any other body part I could think of. I was astounded to conclude that, beside the huge bump on his head and the very nasty grazes on his face, he was intact with no serious damage or broken bones.
This all happened yesterday.
Matt seemed in good spirits today. Although a number of times I would here him say & sign - sometimes to me, sometimes to himself - swing broke. When he looked in the mirror he would touch his graze and quietly say sore, swing broke. I think he is trying to process it all. As am I.
Tuesday, July 26, 2011
Book Review: Look at Me
If you want to be inspired to rise above the challenges that have been thrown your way...
If you want a fresh new look at people with disabilities...
If you want to be reminded of how we can change perspectives - your own and others...
If you want to be encouraged that you can change how people view those with special needs...
...then you must get your hands the book Look at Me
It has inspired me to raise Matt to believe that he has a valuable role to play in our world.
It has inspired me to teach him to stand up tall against all the challenges and hurdles that come his way.
It has inspired me to build his inner strength and resilience so that he can truely reach his potential despite the society we live in.
It has inspired me to not be ashamed of his syndrome, to inform and educate all that I meet, and to invite them to see all of what Matt is, rather than all that he isn't.
If you want a fresh new look at people with disabilities...
If you want to be reminded of how we can change perspectives - your own and others...
If you want to be encouraged that you can change how people view those with special needs...
...then you must get your hands the book Look at Me
Marlene le Roux is an activist for disabled women in South Africa. She had a dream to break the stereotypical view that society has of the disabled by publishing a book that showcases disabled women as sensual, sexual, feminine, powerful and creative. She compiled the life stories of 28 women who have a whole variety of disabilities - from being cerbral palsy to being quadraplegic to being blind. A highly experienced photographer took gorgeous photos of each of these women highlighting their womaness above their disability. Each photo is accompanied by the woman telling her life story - such courage, such determination in the face of giant hurdles, such perseverance through trials, and such achievement when many doubted.
It has inspired me to raise Matt to believe that he has a valuable role to play in our world.
It has inspired me to teach him to stand up tall against all the challenges and hurdles that come his way.
It has inspired me to build his inner strength and resilience so that he can truely reach his potential despite the society we live in.
It has inspired me to not be ashamed of his syndrome, to inform and educate all that I meet, and to invite them to see all of what Matt is, rather than all that he isn't.
Potty Update #4
Exciting news: Matt told his teacher at school that he needed to make a poo - he said the word "poo" loud and clear. He sat on his potty and did his thing! First time at school! So proud of him.
Thursday, July 7, 2011
Potty Update #3
I can't remember when last I had to clean up dirty poo undies! How cool is that!!!???! Matt has gotten really good at telling us when he wants to make a poo. He loves sitting on his potty. It takes him a while to get the job done - if we ask him if he has finished he is able to firmly tell us that he is not and he wants to sit longer. He is very chuffed with himself after each time he goes - I am so proud of him.
He is able to stay dry as long as we take him to the toilet regularly. He is happy to use toilet in public places now which is such a relief. If we ask him if he wants to wee, he will almost always say no, even if he does. If we forget to take him, he will have an accident. I think he still needs to learn to differentiate between the different sensations. We are not in a rush, we know he will get there. We are thrilled with the progress he has made, and loving that we are totally out of nappies during the day now.
He is able to stay dry as long as we take him to the toilet regularly. He is happy to use toilet in public places now which is such a relief. If we ask him if he wants to wee, he will almost always say no, even if he does. If we forget to take him, he will have an accident. I think he still needs to learn to differentiate between the different sensations. We are not in a rush, we know he will get there. We are thrilled with the progress he has made, and loving that we are totally out of nappies during the day now.
Friday, July 1, 2011
A distraction? Or a signpost?
I stumbled upon this blog by Rachel Held Evans, and was drawn to a post that she wrote - Blessed are the Uncool - in response to very sad incident where a boy with cerebral palsy and his mother were escorted out of a church service because he was making a noise, and was thus too much of a distraction during the worship time. She writes a challenging post about Jesus' response to those deemed by the cool people as "distractions". It is really worth a read if you are interested in God's vision and heart for the church.
Here is the comment written by a tender-spirited lady called Sara Harding:
There were a couple hundred who commented on this post in particular. It was one lady's story in the comment section that reduced me to tears - for it reminded me that God doesn't value people in the way that our society does; God's love is much bigger than I can imagine; and that God has plans and purposes for Matt is His kingdom that are beyond that which I can plan or hope.
Here is the comment written by a tender-spirited lady called Sara Harding:
"I was a volunteer in my single days at a family camp for those with disabilities. Joni Erickson Tada was speaking and this man named Geoff, who was a head injury survivor kept moaning very loudly, so loudly that it had become a total distraction. You know what she did? She asked that he be brought up on stage. Then they asked him what was wrong. He had been listening to Joni's talk about how God uses broken people to heal a broken world. And he had started crying loudly for this broken world! I cannot express the profound spirit that fell on that place then. Joni prayed with him for our broken world. And his face, his face was all shining! He was looking up through his tears and there was a look on his face I will never forget, and I doubt any who were there will forget it either. I can't even share the story without breaking down, words just can't describe it. So I try to think of that whenever there is a distraction in church by the "uncool." What was accomplished through his tears, through the uniting of everyone in prayer, what strongholds of the enemy were defeated because of a distraction."
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