Hope and the future

I am really not sure what the future holds for Matt. I have learnt not to dwell on it too much as so far each stage of his life has turned out different from what I expected. And mostly in wonderful ways...exceeding my hopes for Matt.


Click here to read a news article about a teenager who has RTS. It is a story of how he has found his place in his school community and... well go read it I won't spoil the endig.

It gives me hope.

Matt in concert

Matt's last play group day ended with a marvelous concert where the kids sang some of their favourite songs. Matt was in his element with all the music and movement.

It was heart-warming to see Matt totally absorbed in the songs, doing all the actions and loving every minute. You can see he understands the words and meaning of the songs. He really has come a long way when I think back to last years concert.

Singing the Barney song, and Matt looks at his mom as he signs the HUG FROM ME TO YOU! Precious!

Matt's favourite song was where he got to play his drum. And boy did he beat that drum! The song had different sections where different instruments are supposed to play..the shaker, the wood block and the drum. Matt couldn't contain himself to just play the drum when it was the drums turn, no he played his drum during all the parts.

I don't often post videos as they take so loooong to upload. But I had to share this with you... the first is precious because Matt spontaneously introduces the song. My video camera is not the most sophisticated so the sound isn't great, but you can hear him say "hello song",  then he goes on to say "hello, hello, hello say hello"...

I love this next clip because you catch a glimpse of Matt having a little grinning moment with one of his friends. And it is fun to watch him doing all the actions.

We are so proud of our no-longer-little Matt, he has really exceeded all our expectations this year. Also we are so grateful for the play school environment that has allowed him to flourish.

Lasting gifts

Raising a child with special needs often feels like one is trapsing through a wilderness, I have mentioned this before, with few well-worn paths, let alone any tarred roads or sign posts. At times it can be rather lonely as few others are journeying through these parts. So when one meets a person who is willing to journey with you for a season, then you are deeply thankful. And when you realise that, in addition to providing great company, they also come equipped with all sorts of tools and knowledge that make the wilderness less scary, then you know you will forever be grateful that this person walked along side you.

Matt's play group teacher, Debbie, is just such person. I knew from the moment I met her - her warm nature, calm presence and compassionate heart - that Matt would do well in her care. Matt has come to adore Debbie, or as he says Bebbie. There has not been one day he has not wanted to go to school. Matt has grown in more ways that I can imagine - from recognising letters, to forming words and talking, to climbing a ladder, to holding a other children's hands during "Here we go around the mulberry bush", to becoming comfortable with sand and all things squidgy, to understanding what it means to say sorry, to saying hello and bye, to loving books, to completing puzzles, to becoming toilet trained, to learning to count, to realising that other kids are ok to play with. Debbie has been a KEY member of the team of people who have sowed into Matt's life. She has completely integrated him into the group of children in her school. He is treated as an equal, his opinion is sought out, he is expected to participate and give just as every other child. But at the same time Debbie has been able to balance the fact that Matt's learning needs are different and she has helped him become the best Matt that he can be.

I am going to miss my chats with Debbie after school. Helping me see what is "just normal kids stuff", and what "is special needs". Advice on anything from potty training, to where to buy a good sun hat. Giving me feedback on Matt - remembering what he did or said that would be of interest to me. Pointing me in the direction of a pre-primary school for Matt and opening doors where she could. Constantly thinking about how best we can help Matt reach his potential.

So it is with great sadness that I said goodbye to her today after Matt's last day at this school. The sorrow I feel shows just how valuable this experience has been. If it were not of such great worth, it would be easy to leave with a simple goodbye.

It is totally for Matt's benefit that we move on from Debbie's playgroup, as much as I would love him to stay there forever, we know that Matt has more learning, growing and exploring to do. Thus our path continues through the wilderness and Debbie will no longer travel alongside us as she has been for the last 18 months. But though we will miss her , I am very conscious of the lasting gifts that she has imparted to Matt and me; gifts that will stay with us for many years.

Matt = Music

There is something about music that Matt is drawn to on a very deep level. Not just one type of music, but a whole variety. Music seems to help Matt consolidate a learning - often he will ask us to make up a song about a topic that he has just learnt about. After being very excited that there were words for dark and light, he looked at us and said SING DARK! This has happened for a number of topics - whether it is about camels, the park, helicopter or drums. Then Lloyd and I have to become very creative about making up song on the spur of the moment. And we are expected to remember the song for when we are requested to sing it again...and again...and again.

His enthusiasm for music and musical instruments has been a great motivator for learning. So we have created a reading book all about Matt's favourite musical instruments - of which there are many.

Currently the musical instrument which brings Matt the greatest joy is the guitar. He knows the difference between an acoustic and electric guitar. He as a toy version of each, and insists that both accompany him to bed every night. He was given a Something Special dvd which incorporates signing and kids with special needs. In one episode the main character Mr Tumble, plays the electric guitar. Well Matt is just brimming with excitement, and will jam along to the music.

The drum also has Matt's deep affections. He can make a drum out of most things - buckets, bowls, hats, lids and more. His birthday present djembe drum is still be best though - and produces such lovely sound if you beat it correctly. Matt tucks it under his arm and will happily drum away for a good half an hour, especially if we play his favourite marimba music in the background.

Matt is drawn to musical instruments like flies to sticky doughnuts. There has been many a Sunday morning when I have frantically searched for Matt after church. He loves disappearing up onto the stage where the guitars and drumkit are left after the worship. His ultimate treat is when he is allowed to sit on the drummer's stool and put some beats together on the BIG drums. In those moments wish I could capture the joy he exudes and store it in a bottle, and sniff on it when I am next feeling low or overwhelmed with life - it would surely revive the most sorrowful soul.