Matt's holiday in pictures

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.

A bush-wacking mama

...in the midst of all my concerns for next year, I must admit, I am not completely overwhelmed. One of the reasons is that I am not beating down raw vegetation to carve down a path in a completely unknown land. There is a path...yes it is a little overgrown, yes the jungle of the unknown and potential problems is dark around me...but there is a path.

This week I met a lady who has been key in creating a path in this part of the jungle where I find myself. Her name is Glenda. Her son Daniel used to go to the same preprimary school where Matt is going next year. Daniel is a remarkable boy who made a deep impression on the staff and children of the school in his time. Daniel also has Down Syndrome. It was because of Glenda's impassioned appeal to the principal that Daniel was given a chance in join the school. It was because of Daniels personality and his mother's care that, not only the principal but one of his teachers, decided engage in further studies around how to include kids with special needs into their school.

So when I knocked on the school door earlier this year, and I saw the principals embracing heart towards Matt...I know that lady that I need to thank for creating this little pathway is Glenda.

Not only a bush-wacking mama who has carved out a place for her boy in a mainstream setting, but a woman of such sensitivity, courage and joy. She came to my house for a cup of tea, and what was initially planned to be a half an hour chat to meet up, turned into a nearly hour and half visit where we shared stories, laughter and tears. I now count her as one of my friends. Someone I can phone for advice or just to rant or to share a story of triumph.

Thank you God for Glenda and for others who have pioneered in the making this world a more embracing place for Matt.

Meet a young lady with RTS

Follow this link http://www.youtube.com/watch?v=MFUbyUwp35Q&sns=em to meet April and her sister Rachel who made the video.

Beautiful!

Facing the next step...

This week we went to an open day/orientation day at the preprimary school where Matt is going to next year. I did not expect that my emotions would wrap around me so intensely, like a big, wooly winter jacket - slightly suffocating. I am still trying to process all the feelings - yes there was excitement, but there was mostly fear, uncertainty and trepidation. I love the play group where Matt is now, I know his teacher understands him, and genuinely desires to see him become all he can me. Though I know it is totally unrealistic, a part of me wishes that we could just stay there forever.

But with growth, comes change. And change is scary. There are many unknowns - how will Matt really cope in a classroom of 20 plus kids? Will Matt be lost, will he feel lost? Will he be encouraged to reach his full potential or will they expect less from him because he has a "special needs" label? Will the other kids accept him or not?
I guess it is really the great unknown...questions that can't be answered until we get there, that cause the most fear.

Let me focus on what I do know:
1. The principal as an open heart towards childern with special needs: I chose this school for Matt because the principal was so embracing of the idea of inclusion, and her questions about Matt showed such insight.
2. I met Matt's teacher-to-be, and she really does seem like someone that I can work with in helping Matt reach his potential.
3. The principal has assigned one of the teacher assistants to keep a special watch over Matt. I met her and she seems full of life and very excited to be working with Matt.
4. I do have friends, that I trust, who have had kids at the school and recommend it.
5. I know that Matt does enjoy learning and growing, though it is at his pace.

I need to keep these facts in the forefront of my mind. And when I look at them, I see so much in Matt's favour.

Yes I do still have doubts, I wonder if we are expecting too much for Matt by placing him in a main stream school. I wonder if I should have chosen a school that has smaller classes. I wonder...

But then again, sometimes, when I am busy wondering all these thoughts, I wonder if Matt just might do what he has consistently done up until now - surprise me by totally exceeding my expectations!

I've been published!!!! Very exciting. I was commissioned by a national magazine for parents to write about my experience of finding toys for my child who has special needs.

Follow this link to check it out.

Party Time

This year we decided to have a joint birthday party for our boys. It was a big celebration:

A celebration of Nic's life because he could have so easily not have made it through my pregnancy, and now he is a year old

And a celebration of Matt who is 5 years old and makes us so proud as we watch his personality unfold, as we witness him pushing boundaries on expectations.

Here are some pictures of the lovely afternoon 

We were delighted that Matt's RTS sister, Payton and brother, Sam, could join us for part of the celebrations  

My mom having a bonding moment with Payton

 

And other friends from church and our neighbourhood celebrated with us too.

 Matt has outgrown his being overwhelmed by big crowds and so had lots of fun, playing and eating!

Nic had lots of fun too!

The birthday cake, well actually lots of birthday cupcakes - 1 cupcake for Nic and 5 for Matt.

 Matt needs no help blowing out the candles!

 Thanks to all joined us and made this celebration so very special.

5

This year Matt understands that he is 5 years old
He can show us 5 with his hand
And he can say FIVE

It is great to be 5!

Addition to this post: Matt's playgroup teacher also pointed out to me that
Matt can also count to FIVE

Matt turns 5 years old!

Matt loves all sorts of modes of transport. So for his birthday DAY we took him on the train ride to the beach. Matt's excitement levels were really high, and the train was running a little late. It was a bit hard to contain him (and Nic) at the station!

 

Once the train arrived, Matt become over-awed with wonder.

On the train itself, he was very vocal, MATT SIT ON THE TRAIN and TRAIN GO and TRAIN STOP and other little comments that I can't remember. It was lovely to watch how the adventure inspired lots of words.

Our desitation was a quaint fishing village, known as Kalk Bay. First we stopped to get some energy-boosting snack for the walk ahead  There is nothing like the nourishment of ice cream on a hot day. 

Nic's first taste of the cold stuff - to say he loved it is an understatement!

Then a walk down to the harbour. Matt walked a fair distance, and then enjoyed the comfort of Dad's shoulders for the last bit.

So much to see in the colourful harbour. Matt is currently as fascinated with boats as he is with trains - so he was thrilled to watch the comings and goings of the vessels.

And then off to the beach. Grandpa joined us for most of the trip, though he only features in this photo.

Matt and Nic get stuck into some serious sand play!

And then home again on the train - much to Matt's delight.

Where have we been?

We have not been blogging, that's for sure. We have been celebrating birthdays with all the time-consuming, yet joyful preparations that accompany such events. We have been trying struggling with limping, and then dying laptops. We have been grapping to get all our old devices - like camera's, printers, internet connections - to make friends with and collaborate with our new laptop. We have been fundraising for our church's HIV ministry. So we have not been blogging.

But we are now back...so watch this space. Starting off we will show you the highlights of Matt's 5th birthday.