Our SonShine

Being different

2012-01-24T17:23:00.000+02:00

One thing I didn't expect about Matt's first week of school was how emotionally taxing it would be for me. I was so focussed on getting to the day of starting school, that I didn't give much thought to the days that would follow.

Matt has been very content at school, and his teacher and the teaching assistant have consistently given me satisfactory reports at the end of each day.

The turmoil has been within me - and not with Matt at all.

In this new setting, where Matt is surrounded by a whole new bunch of kids, the differences in their development and Matt's stands out starkly. At first I felt this rising sense of panic that he wouldn't fit in nor would he be able to keep up. Every morning I get to hang out with Matt in his classroom for a quarter of an hour or so, and I would watch the other children chatting away, expressing sophisticated thoughts on matters. Little girls negotiating the subtleties of preprimary school relationships. Little boys eagerly constructing things and getting creative with playdough.

Every new season for Matt requires that Lloyd and I face the reality that he is different, and is hard. Because with difference comes vulnerability; the potential of being hurt. As he settles into his new environment, finds his place, and as others start to understand him; and finally appreciate him, then the pain of his differences goes away. And for the rest of that season we live with joy and appreciation for the love the Matt receives, and for the progress he makes. In a new environment, it feels like we have to start from scratch. I wasn't expecting it to be as unsettling as it was.

I have also had to grapple with this concept of inclusion. I had to realise that inclusion is all about including someone who is different. The aim is not to make them the same as other the children - because if they could do the same things, they wouldn't have special needs. Inclusion is also more than a warm acceptance of a child who is differnt. It is also about recognising the differences, and making adjustments in the environment to allow this child to participate fully. It is about celebrating those differences, recognising that those differences add a richness to the school community.

So, through shedding some tears, through some desperate prayers, and through some helpful chats with Lloyd and a couple of good friends, I think I have come to the place where I can say once more that I am ok with Matt's differences. I am no longer thinking up crazy plans to try to make it seem as though he is the same as the others. Rather I am thinking up clever plans that can make this inclusion thing work. But I know I can't do it by myself. I am thankful that the principal and the teachers are eager partners. My first step, is to learn more about this whole thing called inclusion. Watch this space as I process my learnings on this subject.

I just love this photo

2012-01-22T21:54:00.002+02:00

A giant step

2012-01-22T21:49:00.001+02:00

Last week Friday 13th January, Matt started in a main stream preprimary school.

This is the comment that I posted on Facebook that morning.

Matt started pre-primary school this morning in a mainstream school. Feels like a giant step for me. But for him it is just his next step in a series of steps, each of which have exceed his mother's expectations. To think when he was born I didn't know if he would b eva b able to walk, talk or eat solid foods!

To this I received 67 LIKES and 33 comments.

This was not because we are widly popular, but because so many of our friends and family recognised the momentous occasion. After Matt's first day of school was behind me I felt a very strong emotion - that sense of accomplishment one feels after an event or date one has been working towards for a long time. I have had that feeling before...the day of my wedding...the day I graduated from university.

But enough about me. Matt met his teacher who showed him where his locker is and showed him the toilet and his own towel. Then he was introduced to his classroom. I got to hang out with him in his classroom for 30 minutes; exploring the different activities. The bell went, and all the kids sat in a circle. Matt was happy to join them. Gave me a kiss and a wave. Off I went with my heart in my throat. Returning at the end of the morning, I was told Matt was happy, and spent the time exploring his new environment.

In the car on the way home, I asked Matt what he did in his new school. "Play in sand" was his reply, and asked what else he did "drum" he said with a smile.

PS/ We were too emotionally on edge that we forgot to capture this big step on camera. Will address that oversight soon.

Matt's holiday in pictures

2012-01-12T11:18:00.000+02:00

2011-12-24T11:17:00.000+02:00

Hope and the future

2011-12-23T18:29:00.000+02:00

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

2011-12-17T07:21:00.002+02:00

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

2011-12-08T21:58:00.000+02:00

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

2011-12-05T15:56:00.000+02:00

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

2011-11-18T20:40:00.000+02:00

...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

2011-11-14T21:50:00.000+02:00

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...

2011-11-12T21:10:00.000+02:00

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!

2011-11-01T14:24:00.000+02:00

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

2011-10-23T08:44:00.000+02:00

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 is 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

2011-10-19T22:44:00.002+02:00

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!

2011-10-19T22:39:00.001+02:00

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?

2011-10-19T21:44:00.000+02:00

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.

Herding Cats

2011-08-24T20:07:00.001+02:00

Another blogging mom mentioned a while back that getting her three kids ready to get out the house was like herding cats. I feel like that every time we have to get Matt to a therapy session. Unlike visiting friends where it is acceptable to be 10 minutes late, one really can't afford to be late for a therapy session. So this adds pressure to the preparation process . I often chuckle at the chaos that needs to be brought under control in order to get both boys out the door and into the car. Herding cats is a brilliant metaphor.

Today was no different. Matt's session was due to start at 1pm. We had to leave at 12.45 to make it in time.

11.50 Matt is dressed ready to go and Nic is woken from his nap so that both boys can have enough time to eat lunch.

12.00 Nic's nappy is changed and dressed ready to go.

12.05 Both boys are eating lunch. Mom smiles contently - all is going according to plan. We can have a leisurely lunch as all we need to do after lunch is wipe faces, and a quick toilet visit for Matt, and then out the door. The travel bag is already packed with extra change of clothes for both boys, nappies, wipes, snacks and entertainment for Nic.

12.25 Lunch finished. Mom very chuffed - we are on target.

12.26 Nic's sippy cup is not screwed on properly so most of his juice pours out whilst he drinks. Change of clothes required.

12.28 Mom races with Nic upstairs to put on new clothes. This job should never be undertaken by one person alone as Nic despises dressing and is an excellent escape artist. But what can you do when you are alone - so Mom get focussed on maximum entertainment to distract him whilst changing his clothes. A mildly successful tactic, which means we take 8 minutes instead of 10 minutes to complete the task.

12.30 Whilst Mom and Nic are upstairs Matt decides to undress too and starts playing drums with his drumsticks on the laundry bucket.

12.36 Mom returns downstairs to find she now needs to dress Matt again, only Matt wants to play the drums.

12.37 Mom tries to dress Matt, Matt continues to play drums. Nic also wants to play drums.

12.39 Matt almost plays drums on Nic's head, Mom grabs Matt's arm to prevent damage to Nic's skull. Matt angry with Mom's restraint and tries to bite mom.

12.40 Mom yanks arm away in self defence whilst yelling at Matt, losing a bit of control. Matt starts crying.

12.41 Mom tries to calm Matt and finish dressing him whilst keeping Nic at arm's length. All the while explaining that hitting Nic and biting Mom is not acceptable behaviour.

12.43 Matt is dressed.

12.44 Mom helps Matt go to the toilet. Mom is a little concerned that Nic is being so quiet.

12.45 Toilet business finished. Mom sees Nic playing nicely in the lounge. Relieved.

12.46 Matt wants to take his drumsticks in the car. Fine, Mom agrees.
Matt wants to take the very large laundry basket into car too. Not fine, Mom disagrees.
Negotiation takes place.

12.47 Matt agrees to taking a small tin along in place of the large laundry basket - it can also be used as a drum. Nic has now disappeared.

12.48 Mom finds Nic - he is eating our pets' food in the kitchen. Mom picks up Nic removing the pellets from his mouth.

12.49 Mom ushers Matt outside the front door whilst holding Nic.

12.55 The cats have been successfully been herded into their car seats. Whew! Ok 5 minutes to get there, dang we are gonna be late.

My face is all better now...

2011-08-18T21:10:00.000+02:00

It was less than a month since my swing broke. Now I'm all better.

A drag??

2011-08-14T15:53:00.000+02:00

What is it about independence that makes most of us crave it and chase after it?

What is it about dependence that freaks us out and that most of us want to avoid at all costs?

Much of society is built upon this. Retirement policies - so that you don't have to rely on your children to look after you when you are old. Disability policies - so that you don't become a burden to your family members should you lose you become disabled. You hear people say "I really don't want to impose!" using this as an excuse to not ask for help. It is considered a compliment if someone says "that woman is strong and independent" - in fact many strive to become this; looking down on those who cannot stand on their own two feet. These don't sound that bad really - what is this blog post all about I hear you asking?

I had a conversation last week that really jolted me. I was visiting a professional person regarding an organisation that I am involved with - nothing to do with Matt. I had Matt with me, and he was happily playing on the floor of this man's office. We got to talking about Matt - this man was very interested and had lots of questions. He told me how he had grown up next to a family who had a boy with Down Syndrome who, because of his mother's dedication to his learning, grew up to be able to live by himself. He made some comment about how great it was that this boy "wasn't a drag on someone" as if this had to be avoided at all costs.

Is it really the worst thing to have to care for someone else? Is it really the worst thing if you can't do every thing yourself? Is it?

For me sometimes the opposite can be worse - being so independent that you never need anyone, that you feel in control and impenetrable that you don't let anyone see your inner being. That you live behind a wall of strength that never allows others to touch your heart. Alone, independent, but alone.

And aren't we as humans designed in such a way that we feel most alive when we are loving someone, when we are caring for someone, when we feel needed and feel thay we are making a difference in someone elses life. Ironically our society puts independence on such a pedistal, and yet it is our very interdependence that gives our life meaning.

Personally I can't ever imagine feeling that caring for Matt will be a drag. Call me naive, but I love Matt and that is how I feel. Don't get me wrong, I am not holding back on teaching him all that I can - I really do want to him to reach his potential. But this isn't because I want him to be independent so that people won't look down on him. So that people won't think he is a failure or a drag. Rather I want him to reach his potential because then he will be most fulfilled and find his meaning in life.

There have been times during the past 5 years, when Matt's needs have been too big for me to manage on my own. I had to examine my own attitude to independence and 'having it all together'; and the fears I had around asking for help. When I did rely on others - I found three amazing things happen. First, a lot more got achieved than I could possibly have done on my own. Second, my friendship with the person who helped me out deepened in a beautiful way as they saw they were meeting my need. Third, I watched in awe as the person helping me started to shine as they used their gifts, time and talents to bless me. It really didn't seem like a drag at all.

Matt's speech renders parents speechless

2011-07-31T21:29:00.002+02:00

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.

"Swing...broke"

2011-07-27T20:30:00.000+02:00

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.

Book Review: Look at Me

2011-07-26T21:22:00.000+02:00

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

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

2011-07-26T09:36:00.000+02:00

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.

Potty Update #3

2011-07-07T16:24:00.001+02:00

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.

A distraction? Or a signpost?

2011-07-01T21:15:00.000+02:00

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.

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."

Stability

2011-06-22T21:26:00.001+02:00

These aren't just funky blue insoles to make Matt's shoes look hip. These insoles have given Matt the gift of stability. He was fitted with them at the end of April and in these last few weeks we have seen a real improvement in Matt's walking, jumping, running, stair-climbing and his general ability to remain upright and not stumble. It has been fun watching him confidently approach steps. He now loves jumping - he will bounce around the house with much laughter. His confidence in running has meant increased enjoyment of ball games with dad.

Matt's orthotist has a very impressive electronic mat that can sense the way in which someone walks. He gets Matt to run over it a couple of times, and then his computer shows exactly how Matt is overstepping on the inside or outside of his foot, and which part of this foot he uses in the different moments of his stride. That way he can create an insole that best supports Matt's foot. In addition the orthotist provides an extensive follow up, making alternations if necessary - each time checking how Matt's feet are working using his electronic mat thing. I am not sure if I explained it all clearly and correctly- but it was really impressive. And it has made such a noticeable difference in Matt's stability.

Thanks to Matt's physio, Pam, who recommended we pursue this for Matt.

Teach reading to teach talking

2011-06-16T17:10:00.000+02:00

One of the exciting things that we came across at the RTS Conference was from our short clinc session with a Dutch Speech Therapist who has worked with a number of different RTS kiddies. She has found that there are similarities between RTS and Down syndrome kiddies in terms of learning speech. And therefore techniques to support kids with Down syndrome have proved helpful to RTS kids.

Teaching reading to teach talking is probably the single most effective intervention for helping children with Down syndrome to overcome their learning difficulties. Quote Sue Buckley and Gillian Bird

From what I understood is that the emphasis should be on helping Matt recognise the whole word, as opposed to first getting to know the letter sounds and then building those up to words. As he learns to recognise and read words, she reckons, his speech will benefit.

This ST recommended that we start a book with Matt where he participates in it's development. On each page we draw a picture that he has expressed interest in, and then write the word below it, as well as a sentence of 3 or 4 words. Basically this will be the level of his understanding, not his expressive language. As he helps create the book, the topics should inspire him and capture his attention. The benefit will come from repeated reading and seeing the words.

I am still learning the mechanisms and process of how teaching reading supports kids in learning to talk. Here are some useful links on the topic:

http://www.down-syndrome.org/information/reading/overview/

http://www.down-syndrome.org/information/reading/early/

http://www.up-for-reading.org/down-syndrome/reading/

We got started right away, even though we were still on our trip. We talked to Matt about what he had seen during the day and created our little "book" out of a note pad. We have since put the pages into a file with some photos prints to add more fun to the story telling. Matt has really taken to it and we read this "book" whenever he wants. I hope to start on a 2nd book - focussing more on his day to day experiences.

Matt in the tulips

2011-05-30T20:12:00.000+02:00

Future Fears

2011-05-29T21:31:00.000+02:00

In reflecting on my time at the conference I realised that I tended to befriend those with RTS kids in a similar age range as Matt. This was not a conscious decision, and not something I noticed at the time. Was it because I could relate better to those parents, they were on a familiar part of the journey as me. I know this section of the road well. But I also think I was actually avoiding those with older children. Because, although I am at peace with this part of the journey - I must confess that I am still terrified of Matt's future. And I function well every day by deliberately NOT allowing myself to think about Matt as a teen or an adult. I think that it would have been just too emotionally challenging for me to connect with the parents of teen and adults with RTS. There was one mom who I did get to know who has a teenage daughter with RTS - I met her by accident, over supper on the last night. We had a good chat, in which she was really honest about the challenges as well as the joys. I am grateful for my connection with her, though I was very emotionally moved by her story. Maybe at the next conference (whenever that maybe) I will develop greater courage to build bonds with those further down the road than me, and to also get to know these RTS teens and adults a bit better.

What the rest of family got up to

2011-05-26T20:35:00.000+02:00

Thanks to the official photographers, Wim van der Spiegel and Geesje de Jong, for these photos...

Registration - Nic helps dad sign in.

I witnessed this moment - a special connection between Dr Hennekam and
this cute little Spanish girl with RTS, whilst this other cutie was looking on in delight.
A precious moment.

Checking out the crowds of people from the safety or dad's lap.

Yummy RTS cakes

The participants gather to hear interesting lectures

My brilliant husband doign a short presentation on how RTS is
managed in South Africa.

The participants laughing at one of Lloyd's many jokes...

Nic is more interested in the photographer than his dad's presentation.

Nic is trying to get out my arms to go to the photographer.

Interesting...

2011-05-25T22:02:00.000+02:00

There was a lot of information shared at the RTS Conference. Some morsels of knowledge were more significant than others...

A session with the thumb expert helped explain why Matt can only bend his thumb in one place, that is where his thumb joins his hand. The reason: Matt only has one joint in his thumb!

Speech can be facilitated through learning reading - the Speech Therapist has found this to be true of many of the RTS kids with whom she works. Will share more about this in a separate post.

Matt has only 30% vision in his eyes - apparently this is normal for his developmental age, but seems rather odd to me.

Many RTS kids develop behaviour issues later on in life - not a happy stat to learn about.

"Playing is the most important activity of a child" quote from Anneke Baselier, psychologist, who ran a fascinating workshop on play with special needs kids - learnt all about the stages of play and how to gently expand your child's play repetoire without moving to fast for him. Too much to share here, but very inspiring.

Saw first-hand how many of the RTS kids and teens are talented at music and singing - a very fun kareoke session was held on the Saturday night.

Not really helpful info, but fascinating: did you know that a prehistoric skeleton is thought to have RTS!? The skeleton was found in West-Central Illinois.

Advice from a fellow RTS parent - when you have asked your child a question, wait 60 seconds (not 10 or even 30 seconds, but 60) for her to reply before you fill in the answer. Give her time to process the question and to answer - you may be surprised at the response you get.

Matt at the RTS Conference

2011-05-24T10:21:00.002+02:00

Here are some pics taken by the official conference photographers that capture some of Matt's experiences.

At the registration we were treated to some music;
can you see little Matt in the background fascinated with the tunes?
(Photo: Wim and Geesje)

Matt was intrigued by Carter's ipad.
(Photo: Wim and Geesje)

Matt and his slinky
(Photo: Wim and Geesje)

Time to meet everyone
(Photo: Wim and Geesje)

Matt finds a friend - Jona

Jona and Matt in the play room

Matt LOVED the bouncy castle in the children's programme

Matt with his Mormor (granny) watching the ducks
-Thanks Mormor for keeping an eye on Matt
whilst mom and dad were in the talks.
(Photo: Wim and Geesje)

On the Saturday we attended various clinics - dentist, eye test,
speech therapist, psychologist - for individual advice for Matt.

Matt intrigued by the bubble lights in the Snoezelen room (like a multi-sensory room)

Thanks to Wim van der Spiegel and Geesje de Jong for allowing us to use their photos on our blog.

Reflections

2011-05-06T21:56:00.001+02:00

A full conference day is behind me. Tired eyes I sit here with a precious 15 minutes internet access to reflect on the abundance of experiences today presented. Sitting in a large circular conference venue with over 200 other participants listening to multiple interesting speakers all bringing to light different aspects of RTS. Meeting RTS parents from Spain, Norway, Denmark, UK, Scotland, Netherlands and USA whose hearts are so similar to mine. I have mental images of the various RTS people I have met today - some in wheel chairs, some babies, toddlers, teens and some older, some singing and dancing on stage, others running, some crawling, some talking some not. My emotions have rollercoasted from the excitement of meeting more and more on the same journey, to sorrow as I hear others' journeys that have been harder than ours, to a strange mixture of inspiration and anxiety when I look forward to the potential future of Matt, to joy watching Matt engaging with other kids who look much like him, to satsifaction from getting those rare aha moments in relation to understanding Matt better. The day is brimming with too much to process. It will take me a month or more to untangle all the threads of today. But it is so good. I will enjoy mulling over this experience. And there is still more to come tomorrow.

I have come home

2011-05-05T22:16:00.002+02:00

I walked into the registration area of the conference, a large passage way filled with people. Many of these people looked like they could be Matt's brother or sister - there were small kids running around, crawling on the floor and in wheel chairs, there were older teens dancing in time to the music playing or moving from person to person giving hugs. And they all had that special, beautiful RTS look that we have come to love in our Matt.

It was like coming home.

Fighting back tears of joy and strong emotions bursting forth from that place of feeling like you finally belong, I started greeting these strangers who quickly felt like family.

We have had an afternoon of chatting to parents; playing with each others kids; followed by an evening of sharing a meal together and more chatting. Comparing notes, sharing funny stories, hearing about the tough journeys - sharing so deeply with people who we have just met, but could have been our friends for a thousand years.

I am loving being here.

Tomorrow the talks, workshops and the official conference starts.

So looking forward to it.

Matt - what's he up to?

2011-04-21T21:24:00.002+02:00

It has been a while since I posted about Matt, so here is an update. (When I first wrote this sentence I had written quick update, but now that I have finished the post I had to return to the top and delete the word quick - but trust you will find it interesting)

Matt has fallen in love with letters - we are not sure how this happened, but we think it goes back to Lloyd and Matt playing with foam letters during bath times. Matt has discovered that letters have sounds that goes with them and he loves pointing them out. He is particularly found of the letter B - and will start yelling Ba Ba Ba in the supermarket as we pass the Butchery or the Bakery. He also confidently recognises A C D E F H M O S and T. We have found a cool online alphabet game that he just LOVES, so we watch in amazement as Matt is learning the basics of reading.

Matt is determined to get words out and is definitely putting more pressure on himself to do so than anyone else. Though we remind him of the correct pronounciation, we try hard NOT to force him to say it right, and we still strongly encourage his singing, but HE wants to say it, and HE wants to say it correctly. He sometimes gets really frustrated when he can't get sound out when he knows he has done it before. And there is nothing to describe the joy on his face when the word slides out with ease and grace. Matt is conquering the S sound, and can now say SUN, SEE, SOCK, SING, SEEP (sleep) and SUPPER...and the F sound FISH, FAN, FOUR, FIVE and the C sound CAR, COW, CAT. The M sounds is his newest aquisition so it takes a bit of concentration but he can now proudly say MATT. He is still working on applying the letter B, but he has firmly claimed the word BUS. Which is repeated at least 40 times a day as his request for me to sing Wheels on the Bus.

In the midst of these strides forward we are facing another development - frustration and jealousy with his younger brother Nic. Matt definitely loves Nic and will show concern and care towards him. But like most of us, he has mixed feelings and now that Nic is mobile and very engaging with others Matt has started hitting and kicking. So Lloyd and I are learning more about setting boundaries, whilst still being very focussed on showing love to Matt. An interesting balance - we have a lot to learn.

A FUN development which completely melted my heart is that after Matt's speech therapy session yesterday he told me what he had done. Lloyd had taken Matt to the session so I wasn't there to see what had happened. When Matt came home I asked Matt what he had done with Julia. And Matt said "OOK" (he signed BOOK) and said "OW" (he signed COW). Lloyd confirmed that Matt had indeed been working through a book with a cow, where you could press a button to make it moo. Obviously this made an impression on Matt. I was thrilled he shared this. After school or therapy sessions, or when Lloyd comes home from work, we always ask him about what he did - and this has been the first time that he answered. I love this growing communication.

This update would not be complete without a progress report on the potty training. I am happy to report that as long as we remind Matt every hour or so to make a wee then he is able to stay dry. He can wee standing on a step in front on the toilet, in the potty or outdoors in the garden (the latter being his favourite spot). He has recently gone outside on his own to make a wee. He hasn't yet asked to go.

The poo story is a bit of a one-step-forward-and-one-step-back journey. Lots of accidents and lots of small successes. But the latest news is that two days in a row Matt has gone to sit on the potty by himself, without any prompting from us, and made a poo. We wait to see if this will continue. I have asked the RTS Conference organisers to arrange to have a potty in our room in Holland so that there won't be a break in Matt's toilet training journey.

I could share more as Matt's life is brimming with discoveries and exploration, but I will leave it there for now. I think the main highlights have been covered. I'll try not let so much time lapse before I next update about Matt.

10 more sleeps

2011-04-21T20:42:00.001+02:00

until we all embark on a plane that will take us to Holland for the RTS International Conference.

We are mostly organised: got the passports, got enough clothes for the boys, got the medications that we might need (but really praying we don't), got the suitcases, got fun, cheap toys that will be wrapped entertainment on the long flights, got my lists... I do wonder if there is something that I have forgotten to think of.

Once I look past the stress of packing and leaving I am quite excited about it all. I haven't really shared it with Matt yet - I think a week before the time, after Easter, we will start doing a week count down and start preparing him for the adventure.

Only 10 more sleeps!

Book Review: Expecting Adam

2011-04-16T14:47:00.003+02:00

I recently re-read Expecting Adam by Martha Beck. It is a true life story of Martha's account of her pregnancy with a little boy who has Down Syndrome. She is a captivating writer with such crisp descriptions of emotions and events that one can't help but feel completely in the moment with her. I appreciated her slightly dry sense of humour that is sprinkled in between fairly serious thoughts. Most of the account is about her journey of coming to terms with having a child with special needs, in the midst of the worst morning sickness I have ever heard about, whilst dealing with the very fierce expectations of how woman should cope from her Harvard environment, and simultaneously trying to make sense of the unfamiliar and profound spiritual moments that were breaking into her very rational world.

I loved the stories about her son that she wove into the fabric of the story - engaging, joyous and celebratory stories from his life that contrasted the struggles she was facing in coming to terms with the diagnosis. Being a mom of a kiddie with special needs I would have appreciated more about him, but as the title clearly states the book is about her season of expecting him, rather than raising him. I couldn't connect with some of her interpretations of the spiritual moments that clearly made a deep and lasting impact on her. My Christian world view would have interpretted her experiences differently. I have to acknowledge that I was reading her journey and I was hearing her story - she wasn't trying to convince me to believe as she did.

From what I have read, I think she is now an influencial life coach with columns in prominent magazines and newspapers, and has also been on TV. This is her website: www.marthabeck.com I must admit that I was a bit disappointed to find nothing about Adam, nor the journey of raising a kid with special needs as part of her current portrayal of who she is. I would think that much of the lessons that she is now sharing with others were birthed and refined through her struggles and victories of parenting a child with special needs. Maybe she shares that in her work, but it is sadly absent on the website.

I first read this book about 8 years ago. Lloyd and I, together with a couple other close friends, were on a 4 month road trip around Eastern Africa. We all swopped each other's books. And someone had brought along Expecting Adam. I think if we were back home in "normal life" we wouldn't really have picked up such a book, let alone both Lloyd and I read it one after the other. Given the many hours spent on the road, we had a good chance to chat through the books we were reading. In fact this book sparked what turns out to be a pivotal conversation for us as a couple - we chatted about what we would do were we in Martha's position; about the pros and cons of using abortion in cases of medical conditions; about our values; about what it would be like to have a kid who had some kind of disability. At the time it was all theory for us. But it really laid a foundation for us in preparation for the time when we needed to face those issues in our own lives. Looking back I am deeply grateful for that opportunity.

As I read this book last month, I chuckled to myself at what a different person I am now, and how different parts of the story meant more to me now than they did 8 years ago. Understandably, given my journey with Matt, I have a new set of eyes to view Martha's story, and for that matter, to view the world. Re-reading this book highlighted for me the extent to which my perspectives have radically altered. And I am deeply grateful for my new perspective on life.

One thing that did remain the same though, is that I was attracted to the exact same paragraph in the book both times. I actually wrote it my journal back then in 2003, and blogged about it yesterday. To read the quote in context you'll have to read yesterday's post. And just because it is such a profound statement I will repeat it here once more:

This is the part of us that makes our brief, improbable little lives worth living: the ability to reach through our own isolation and find strength, and comfort, and warmth for and in each other. This is what human beings do. This is what we live for, the way horses live to run.

What do we live to do, the way a horse lives to run?

2011-04-15T22:02:00.001+02:00

Husband John and pregnant wife Martha have just undergone tests to see if their unborn baby has Down Syndrome. They do not know the outcome of the test yet. We join them in a midst of a heated debate about how to handle the possible outcome...

"Look, honey, nothing's worng with our baby," he said. "Our baby is fine. And yes, I agree with you that birth defects are a tragedy any way you look at it, but abortion is a way to deal with the problem, you know? To limit it. That's all I was saying."

I wiped my eyes with a paper napkin and peered at my husband's weary, frustrated face. "And you'd still want me to abort this baby if it wasn't normal," I said, "Wouldn't you?"

John pulled in a deep breathe and let it out slowly. He looked terribly tired. "Look." he said. "I know I can't always see things from your perspective, and I'm sorry about that. But the way I see it, if a baby is going to be deformed or something, abortion is a way to keep everyone from suffering - especially that baby. It's like shooting a horse that's broken its let." John's father had been born to a clan of sheepherders, and he was always quick with barnyard analogies.

"A lame honse dies slowly, you know?" said John. "It dies in terrible pain. And it can't run anymore, so it can't enjoy life even if it doesn't die. Horses live to run; that's what they do. If a baby is born not being able to do what other people do, I think it's better not to prolong its suffering."

I nodded. The torrent of emotion seemed to be passing. I felt as though a hurricane had swept through me, leaving me hollow and exhausted. I swallowed a mouthful of orange juice and closed my eyes.

"And what is it," I said softly, more to myself than to John, "What is it that people do? What do we live to do, the way a horse lives to run?"

I didn't expect an answer, and John didn't give me one. He just moved his chair closer to mine and put an arm around my shoulders. "You're awfully tired, aren't you?" I nodded trying to hold back another wave of tears.

"Let's get you home," he said, stroking my hair. "You look so pale - how much blood did the vampire nurses take, anyway?" I managed to smile. "Just enough for their midnight buffet." John smiled....

...I just rested my face against John's chest and closed my eyes again. John brought his other arm around and folded me to his chest. He was still wearing his bulky down parka. It was like a pillow against my cheek. I could feel his heart beating beneath the coat. For a moment, I let the anxiety in my chest relax, let myself forget everything I had to do that day, let myself feel utterly safe. And then I understood that John was answering my question, even though he didn't know he was. This is it, I thought. This is the part of us that makes our brief, imporbable little lives worth living: the ability to reach through our own isolation and find strength, and comfort, and warmth for and in each other. This is what human beings do. This is what we live for, the way horses live to run.

Taken from the book Expecting Adam by Martha Beck, pages 134-136

Discovering the Possibilities

2011-03-23T21:46:00.000+02:00

"So much suffering comes from disappointment. We wait for something which we believe will bring us happiness, and it does not arrive. We see only the negative things that have come our way, illness, a child with a handicap, and we close up in anger and rebellion.

Human wisdom means coming back down to earth; not closing ourselves up in a beautiful ideal which we must attain, but

welcoming reality just as it is;

discovering God present in reality;

not struggling against reality, but working with it;

discovering the seed of life, the possibilities hidden in it. "

Jean Vanier, Our Journey Home, page 165

Gives me such joy...

2011-03-09T20:04:00.005+02:00

Introducing RTS South Africa

2011-03-04T14:00:00.000+02:00

www.rts-southafrica.weebly.com

Check it out!

Music to my ears

2011-02-28T21:09:00.004+02:00

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.

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

2011-02-28T19:50:00.002+02:00

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.

We are going...

2011-02-26T19:37:00.003+02:00

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.

Potty Update

2011-02-12T08:17:00.002+02:00

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.

Who needs expensive toys??

2011-02-07T21:40:00.008+02:00

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

2011-02-07T16:15:00.007+02:00

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.

An expedition begins

2011-02-01T21:42:00.005+02:00

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.

Still Lovin Summa

2011-01-18T21:46:00.003+02:00

Marathon mind-set

2011-01-18T21:34:00.006+02:00

Since our last post we have had one other successful poo in the potty moment, and a whole lot of accidents. I realise that this toilet training process is more like a marathon than a sprint. So I am working hard to get my mindset right so I don't stress when he soils himself.

I don't get frustrated that he has made an accident, it is more the fear that he might never be toilet trained that plagues my thoughts. I have to remind myself that he has learnt SO much, and has come SO far, and that this too will be conquered in his time. We continue to celebrate the small victories along the way.

Matt returns to school this week, so I am a bit nervous about how he is going to manage only wearing underpants. We shall see.

UPDATE: I had a great chat with Matt's teacher yesterday who completely reassured me that she isn't freaked out about poo and will follow on at school with the toilet training as we do at home. I felt very relieved. Today was Matt's first day at school and he was still dry when I got there. Small steps, lots of small steps is this journey.

2011-01-10T20:19:00.002+02:00

Matt made his first poo in the potty today!!!

Celebration in the Tooke household!!!

Toilet Training

2011-01-09T21:18:00.006+02:00

We have started toilet training Matt. Last year November we noticed that Matt would put his hand in his nappy every time he peed. We wondered if he might be potty-training ready, although he didn't really display any other signs of readiness. After consulting our RTS support group and getting some good advice we decided to start during the two weeks in December when Lloyd was on holiday.

A while back I read another RTS mom's advice about how we cannot really train our kids to go potty, rather we can give the the potty great PR and trust that when they are ready they will go for it. So that has been our approach for a number of months with Matt - lots of excitement when mom or dad goes to the toilet. And lots of pointing out to Matt when he had made a wee or poo.

I was really unsure about how Matt would take to all of this. And although, I shouldn't have been, I was surprised by how quickly Matt understood what was expected of him. However understanding is one thing and executing is another. So we started one step at a time - first he learnt to pee in the garden where there are no restrictions or places to mess. Matt was initially quite freaked out by his pee and would stop as soon has he started. Now he is very confident and goes whenever requested, which is usually every 45 minutes or so. And with this method he has not had any pee-related accidents for almost 2 weeks.

Second step is learning to pee in the toilet. Matt stands on a little step in front of the loo and is now confident to pee - however the aiming-thing needs a fair amount of work.

Our next step is to somehow help Matt recognise that he needs to go and tell us. This week I am going to not remind him to go and see what happens.

The big challenge the whole poo thing. We need some help with this - any ideas are welcome. Although Matt has learnt to pee standing up (he just LOVES imitating his dad), he really doesn't mind sitting on the potty. He is happy to sit there for ages as long as we are happy to entertain him with book reading, however he is not sure how to make a poo in the potty. We have tried to catch him in the process and put him on the potty. I think he understands what is required, but still needs to figure out how to control his body. He doesn't tell us he needs to go, so we have to be really observant. Sometimes he has started making a poo in his pants and then he stops because he realises it shouldn't be there, but then when you put him on the potty after this he just can't quite make it happen. And shortly after he is off the potty, when back in his underpants, out it comes.

We are determined to not put any pressure on him in this regard, and I am hoping with time we will figure it out together.

We are really so proud of the progress he has made in the last few weeks.

Lovin Summa

2011-01-08T11:29:00.003+02:00

Clever

2010-12-31T12:57:00.006+02:00

I want to end the year off with a positive post. I have an inspiring memory of Matt from the year that I return to whenever I need to rejuvenate my spirit.

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.

Vulnerable

2010-12-29T14:15:00.001+02:00

I find that I am haunted by a mental image.

The picture is of Matt during his end of year concert at school. For the last song all the kiddies stood on their chairs. Matt stood there proudly. After their cute rendition of "We wish you a merry Christmas" the kids jumped down off their chairs and exited the "stage" to go inside to get treats. The teacher led the kids indoors. Matt, however, could not get down from his chair. He is not always that confident with climbing, and certainly not when his arm is in a heavy cast. So there he stood. Alone. All the other kids able to get down and head inside. Matt didn't look too upset really, I imagine he was thinking that since he knew he couldn't get down, he would just wait until someone could help him down. Fortunately I was standing on the side of the "stage" area and could quickly move in to offer him a hand to descend from the chair.

I know that this is not a catastrophic event. I have no hard feelings towards the teacher - she can't be in more than one place at a time. I know cares for Matt and makes space for him in wonderful ways - he has really blossomed in the play group. I also recognise that I was there for Matt when he needed help and so he did not experience any frustration. I also know that this situation emerged, not necessarily because he has a syndrome, but because he had a broken arm.

Yet most nights (usually when I am up feeding Nic, and all is quiet and my thoughts can roam without distraction) I am confronted with this image of Matt standing alone on that chair. It haunts me. I realise that I fear the vulnerability that he might face in the future. Vulnerable, because in this world, in this society there might not be space for him to function independently. Vulnerable, because he will need to depend on others. Vulnerable to loneliness and aloneness.

I am still trying to figure out how to respond to this. Do I plunge myself into unceasing effort to help him to become independent; or do I just embrace his vulnerability, make peace with it; and trust and pray that there will always be some goodwilled, gentle and loving person around in Matt's life on whom he can depend?

I am not sure if I should post this, but since I find release in writing, I type. I also remind myself that this blog is, after all, not just about the victories that we experience, but also the struggles we face. So I share these feelings as a commitment to being authentic about our journey with RTS.

Best Christmas Present

2010-12-27T21:35:00.002+02:00

The night of the 23rd December Matt could hardly sleep as the itchiness of his cast was bothering him so much. So intense was his scratching it looked like he was trying to scrape his skin out from under his skin. His normal cry was replaced by a panicky scream alternating with a miserable whimper. It was heart breaking. Finally exhaustion and the effects of a light sedative released him from the suffering into a kind sleep. The next morning we managed to squeeze him into the surgeon's schedule. It was decided that the benefits of keeping the cast on were not outweighing the suffering it inflicted.

What a joyous Christmas present - to be completely cast free!!!!!

Matt was blessed with a number of presents from various family members and friends. However one stood out from the rest. My dad had made him a cricket set - with bat, ball and cricket stumps. Matt immediately grabbed the stumps and transformed them into drum sticks. These "drum sticks" are his absolute favourite - taking them with him everywhere drumming to every tune he hears. In addition to drumming on the floor, chairs, upturned buckets, and tin cans; and he is a pretty good air-drummer.

This year Matt really understood a lot more about the Christmas celebration. He certainly was the most excited we've seen him about unwrapping his presents. On Christmas eve he came to us signing house and saying "ouse ouse??" with a definite question tone. He was referring to the nativity scene my parents have in their home. Matt was genuinely curious and listened as we shared with him our beliefs around Jesus birth. It was special to be able to share with him our faith. And I was particularly delighted that he asked a question about something. Often I see my friends kids asking why? and what's that? and I've wondered if Matt wonders about things. I am thrilled that he does, I look forward to answering more of his questions.

Holiday

2010-12-26T13:45:00.010+02:00

Here are some of the highlights from our small holiday away just before Christmas. We had a fun time with two other families, all of us in this one huge farm house.

The view from our house.

Enjoying swimming in the dam

Matt enjoying the company of Kristen and Ethan.

They were quite good at sharing chips.

Matt being brave, but nervous on the canoe with his dad.

Story time whilst we all are sitting around the braai (barbecue)

The kids got to watch a dvd in the midday when it was too hot to go outside.

Share the love

2010-12-26T13:31:00.000+02:00

Greater freedom

2010-12-15T14:18:00.005+02:00

After four long weeks of lumping around a heavy and uncomfortable cast that disturbed his sleep and meant all water play was off-limits, Matt now has a new, light-weight and water-proof cast. Once again he braved the scary process of having a cast removed. By the time he was home it was all forgotten and Matt delighted in the new found freedom of movement.

I am so thrilled for Matt. Tonight he gets his first bath in 4 weeks. Tomorrow we leave for a 4 day break away and I am relieved that Matt will be able to partake in the water fun. In two weeks time Matt will be totally cast-free, and hopefully remain like that for a good few years.

RTS Cape Town

2010-12-15T13:57:00.003+02:00

On Sunday we met up with Matt's younger RTS brother and sister. It is always so nourishing and inspiring to connect with these two families. Over a leisurely afternoon tea we swopped stories, shared advice, celebrated progresses, encouraged and supported each other.

The youngest is pretty Payton (on the left) with her mother Tamsyn. Then big boy Matt in the middle, and on the right is Sam (aka Smurf) and his mom Nicky. (If you haven't already checked out Sam's blog, follow this link.) The dads were also part of the gathering, but they were outside watching older siblings who were swimming in the pool.

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.

What precious little people.

Matt's end of year concert

2010-12-15T13:44:00.003+02:00

Matt's teacher emailed us these pictures of the end of year concert. I was there but only managed to take some really poor video clips (whilst holding Nic) for Lloyd who sadly couldn't attend. Matt was unwell on the day of the concert, but still managed to enjoy it a little.

We are so grateful to his teacher Debbie for the excellent way she has included Matt into this group and how she has allowed him to be who he is, but has also introduced him to some new things. I am told that the kids have also been embracing of Matt - with one or two taking on a protective role of calling Debbie when Matt needs help climbing the jungle gym, or making sure Matt gets the playdough when it is being handed out. Others were not sure how much Matt could understand and would ask Debbie to ask Matt things, but she has encouraged them to talk directly to Matt and he was responded well to this. We look forward to Matt attending there for a 2nd year. Thank you Debbie.

Rejoice always

2010-11-21T14:59:00.008+02:00

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

Take 2

2010-11-20T14:56:00.004+02:00

You would think that since we all adapted to Matt's of wearing a cast the first time it would be easier the second time around. Sadly not.

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.

2010-11-16T16:45:00.001+02:00

NOOOOOOOOOOOOOOOOOOO!!!!

Matt has broken his arm again.

Sigh

Challenging Expectations

2010-11-13T19:15:00.007+02:00

Maybe he thought that since Matt can't talk he won't be able to understand or maybe because Matt has a syndrome he thought it unnecessary to explain anything to him.

Matt developed a limp so we took him to be checked out. The Orthopedic Surgeon was very friendly and kind - I can't fault him there. I give him credit for asking relevant questions and genuinely seeming to be interested in Matt. However, I was angered by the way he started to examine Matt.

Matt was lifted onto the examining table, squirming. And the doctor proceeded to manipulate Matt's legs and hips - all the time Matt is trying to get off the table. Doctor tries harder - physically, still no words.

I intevened: "Please explain to Matt what is happening and what you are doing. He really does understand"

I started to tell Matt what was happening and why we were on this strange table. The doctor looked surprised but followed my lead, telling Matt that he needed to check his legs.

Matt calmed down.

He asked Matt to bend his leg. Matt did.

He asked Matt to lift his legs. Matt did.

And the rest of the examination followed calmly with a co-operative Matt.

I think Matt expanded this doctors expectations.

Freedom

2010-11-13T19:01:00.006+02:00

I have never seen anyone scratch as much or for as long as Matt did the moment the doctor removed the cast from his arm. Even the nurse offering Matt a lollipop from a basket brimming with lollipops did not get a second glance - all attention was on scratching.

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.

It is a delight to watch him being able to page through books again, to splash in the bath, to swing a bat, and to carry two items at the same time. And sleeping has become comfortable again.

Matt turns 4!

2010-11-06T20:47:00.009+02:00

Matt's birthday celebration was simple and low key this year, but it was no less special for him. His birthday morning started with the opening of some fun presents. Sadly many of the toys required 2 hands! But he still was extremely pleased.

One present which didn't require 2 hands was his cute CARS hooded towel.

We did not do a big birthday party for Matt since our lives were a bit upside down as we were adjusting to life with a new born. So we decided to do an activity that he would really enjoy - we took him on a bus ride. This might sound a bit peculiar. But Matt absolutely LOVES buses. He points them out when we are driving. He could watch The Wheels of the Bus Song video 100 times and not get bored. He asks us to sing that song to him every night before bed. In South Africa our public transport system in not well developed and we rely exclusively on our car for transport. Matt has never been on a bus. His birthday treat was a bus ride along the sea front, followed by playing in a park and picnic with his grandparents, and the cherry-on-top was the bus ride back to the car again. The only word to describe Matts reaction: mesmerised.

The following week Matt's birthday was celebrated at his school. We provided the cupcakes. His teacher made him a crown and he blew out candles whilst his class mates sang to him. Matt was really chuffed with it. Here are pics that his teacher emailed us of the event...

When I think back on how far we have come in these 4 years I am overcome with gratitude. I remember the dark days of coming to terms with Matt's diagnosis and fearing that the rest of our lives would be filled with difficulty and sorrow. I would never have anticipated the joy. I also remember reading about RTS and what to expect. Developmental Delay (and more gut wrenching words) were used to describe my baby's future. I could not have imagined Matt at 4 years - a curious, joyful, determined boy who enjoys people; loves music, song and dance; kicks soccer balls with impressive power; makes his opinion known; is passionate about animals and trees; and whose personality is really too big to capture in words on this blog.

I am so proud of Matt. Happy Birthday!

2010-10-28T17:59:00.003+02:00

Big brother Matt climbs up into his carseat and insists that I turn Nic's car seat at an angle so that Matt can look inside it. Matt smiles, then waves hello and says "ic" while doing the sign for Nic. This happens every time I fetch Matt from his school.

2010-10-26T21:10:00.001+02:00

Big brother Matt has turned 4 years. Photos and story to follow when there is a little more time.

2010-10-26T21:01:00.002+02:00

Big brother Matt has figured out that babies love their dummies (pacifier). And that one needs to be found quickly and brought to mom as soon as Nic starts crying. Often I turn around, whilst holding a crying Nic, and there is Matt offering me a dummy that he has managed to scrounge from the car seat, cot, couch or floor.

A mystery

2010-10-12T10:42:00.004+02:00

Big brother Matt has a broken arm. And how did it happen? Well we are really not sure. Last week Thursday we noticed that Matt asked for help to get into the car seat - he can normally climbs up on his own. And that afternoon during play with rice and beans he was only using one hand whereas he usually loves rubbing and moving both his hands through the textures. However he did not appear to be in pain and certainly wasn't crying. Only on Friday morning when Lloyd pulled Matt up onto our bed did he start crying. Knowing that many RTSweeties have been reported to have unusually high pain thresholds we decided we had enough suspicious evidence to warrant an xray.

No doubt about it: a fractured left arm, just below the elbow. But as already mentioned we are not certain as to the cause - was it when Matt toppled off our bed; or when he ran and fell on the grass; or tripped on his toy in the lounge; or one of the many other times when his exhuberant playing caused him to bump into or fall off something? An unsolved mystery.

Lloyd took Matt to have his arm put in a cast - which I am told he endured with much grace and calmness. Initially Matt was not sure about wearing this cast. He can say the word OFF now, and initially would repeatedly show me his cast and request it be taken OFF. I think he understands that it is here to stay. He has since adjusted to having only one arm in use. He has figured out new ways to climb up on beds, chairs and stairs without assistance. He can still feed himself and open the cupboard to find his snacks. And can still find a way to spin plastic lids; play with his cars and turn the pages of a book. He is more independent than I thought he would be, and really only needs a hand to drink from a cup, take his clothes off and get up into the car seat.

The biggest impact the broken arm has had is on his ability to communicate. Matt tries to sign with one hand, but as many signs require the use of 2 hands. Often we are not sure what he is trying to say. But we are persevering. And we are also using some of the PECS pictures to help us where we get stuck.

For the next 4 weeks bath time will be a bit more tricky and sadly no swimming for Matt. But hopefully the time will pass quickly and by then the weather will be perfect for his first swim.

PS I'm also learning to do things with one hand. My reason is a little different - Nic likes to be included in what I am doing during most of the day. I have to admit that Matt has adapted far quicker and more proficiently than I have!!!

2010-10-09T20:19:00.002+02:00

Big brother Matt likes to put his cheek against Nic's warm head - and give him cuddles. Very cute!

2010-10-08T11:09:00.003+02:00

Big brother Matt has discovered that Nic has small feet and cute ears - just like he has. He will point to his own ears, then to Nic's, and then sign "small".

2010-10-07T19:56:00.001+02:00

Big brother Matt is fascinated with Nic's eyes and relishes any eye contact he can get.

Babies are not that interesting

2010-09-08T14:02:00.006+02:00

When people ask me what Matt thinks of little Nic, my standard response is that "Nic doesn't come with buttons that play music or flashing lights, so Matt is not that interested in him". In fact most of the time Nic is ignored by his older brother. Matt knows the signs for "baby", "brother", and "nic", but will not really initiate converstation about his sibling. When asked "What does Nic say?" (as opposed to "What does a cow say? or a pig? where Matt will imitate the sound) Matt's response is that "Nic cries".

Matt is however really interested in Nic during his bath time. He watches very carefully as dad dunks the little crying guy into the water.

Here is Matt overseeing Nic's first bath at home.

Matt hasn't missed any of Nic's bath times yet! When he is not checking out Nic swimming, Matt loves to screw the vaseline and aqueous cream lids on and off.

Reflecting back - the feeding and the memories

2010-08-31T12:09:00.006+02:00

Being born at 35 weeks little Nicolas found it difficult to feed. This is apparently quite normal for a premature baby, and I was told to expect him to take up to 10 days to figure out the whole breast feeding thing. Nic received his feeds through a naso-gastric tube.

With the help of some amazing nurses I started the journey of teaching Nic to breast feed. Most attempts would result in him in hysterics, desparate for milk but unable to co-ordinate the drinking. It was hard. However, it wasn't the task of feeding Nic that was so challenging - it was the emotion-laden flash backs to the time when Matt was born and he struggled to drink. Matt couldn't suck and co-ordinate swallowing. He was in the high care for 3 weeks as we tried to teach him how to drink. The months that followed consisted of hour-long feeding sessions with a bottle that I could squeeze when Matt became too tired to drink, expressing litres of milk, managing reflux, and cleaning up vomits at least 2 or 3 times a day.

I was surprised at how powerful the memories of Matt's early days were, and how debilitating they were. On the second night after Nic was born, I phoned Lloyd from the hospital, in tears declaring that I just couldn't go through it again. I was so overwhelmed by it all. For Nic's 9pm feed I was blessed by the company of an angel - well she was human, but she was like an angel to me. Her name was Frankie, she was one of the high care nurses on the night shift. She sat with me and Nic for about an hour, helping me to try breast feed, then expressing and feeding him through his tube. I am not sure what exactly it was about her: "her down-to-earth"ness, her sense of humour, her patience, her chatting about her love life, her gentleness with Nic, her confidence that he will get this whole breast feeding thing - probably all of these were like a tonic to my tired and frightened soul.

I fell asleep with peace in my heart, and I woke with courage to do what I needed to do to get my little Nic feeding. Early the next morning Frankie brought Nic for his feed - and he latched well. It felt like a miracle. Franke also told me how she had tried cup feeding him through the night and he had taken to it. With my new found courage I became reaquainted with the breast pump. I got the nurses to teach me to cup feed, whilst still persevering with the breast.

By day 4 I was able to give Nic all his feeds through cup feeding - so out came the naso-gastric tube. And mercifully the paediatrician agreed that we could take him home. I don't think it is policy to send kiddies home unless they are feeding well by breast or bottle. It definitely helped that Lloyd is a paediatrician, and that we had experienced more challenging feeding difficulties with Matt.

It was glorious to be home with Matt and Lloyd. And Nic completely surprised me by mastering the art of breast feeding by the 2nd day home. Good bye expressing, good bye sterilising. What a joy to be able to breast feed. I still stare in awe at Nic gulging down the milk.

Reflecting back - the birth

2010-08-30T18:44:00.005+02:00

Despite anticipating premature labour, by the time we reached the 30s weeks I thought that we would carry to term. I couldn't see what would prompt early labour if it hadn't already happened. So in my mind I was expecting to carry until the end.

On the 18th August, at 35 weeks, the membranes of our little dead twin's sac ruptured. After a lot of debate and discussion our gynaecologist decided it was best to get our healthy twin out as soon as possible as the risk of infection in my womb was now very high. And my body concurred with this decision as I soon went into labour.

Only thing was Lloyd was writing his neonatology subspeciality exams on that day, and the following. So my courageous husband came home from exams, took me to the hospital, watched the birth of his baby, supported his wife, went home and wrote the 2nd part of exams.

We had planned to do a lot after Lloyd's exams - including deciding on the name of the baby, finishing off the nursery, going on a romantic weekend away, finishing off work... So our little boy didn't have a name for the first few days of our life, and we have had to be fexible with our life plans.

We chose the name Nicolas because it means Victorious. We felt that this reflects God's purpose for his life. His second name is Michael - after my father.

What a relief to see that he was healthy and well - even though he was born at 35 weeks. Nicolas was in the High Care Ward for one night only - mainly to monitor his breathing. After that he spent most of his time with me. In the beginning he struggled a lot with breast feedings, and received his feeds through a naso-gastric tube, but more about that in the next post.

My heart rejoices in the Lord. 1 Samuel 2:1

Reflecting back - our pregnancy

2010-08-27T21:00:00.009+02:00

I haven't written much about our pregnancy journey in the last few months. Each day required a an intentional and conscious holding onto God's gift of peace and refusing to let fear to root itself in my heart. The threat of losing our second twin was constantly looming in the background. Reflecting and writing about the process was just too taxing. Every day, from the day our one twin died at 19 weeks until we reached 30 weeks, Lloyd and I lit a candle to thank God for keeping our other baba safe, and we asked for just one more day. That is how we lived - day by day.

Weeks passed and the threat of prematurity diminished. We celebrated that our baby remained safe in my womb. Yet our peace was still threatened - a different fear: that this baba may be born with abnormalities. I felt guilty having this fear, as I felt like I was betraying Matt in some way. I love Matt and who he is, I don't despise the fact that he has a syndrome. Yet I was not sure I could manage a second kid with a syndrome.

We had decided not to have any genetic screening tests or scans during the pregnancy. It is very seldom that these tests give a definitive diagnosis, mostly one walks away with a probability or statistic. We couldn't face living with such an uncertainty again. It was torturous during our pregnancy with Matt. So we chose to wait until the baby was born and then if something was wrong, we could deal with it as a definite. However this did mean we had no idea what was in store for us when baba was born.

Lloyd was studying for his neonatal subspeciality exams in August. The text book from which he studied was called "The Diseases of the Newborn" - over a thousand pages of all the things that can go wrong with new borns. Not an easy topic to study when your wife is in her third trimester.

We did not always manage to live in that place of peace every moment and every day. There were times when the fear would almost choke the breath out of my lungs. There were, however moments, by God's grace where despite the possible threats to the safety and health of our baba, we still experienced joy and delight of life.

Do not be anxious about anything, but in everything, by prayer and petition with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4: 6-7

Matt welcomes little Nic

2010-08-23T13:43:00.002+02:00

Matt has become a big brother

2010-08-22T20:45:00.003+02:00

On Wednesday 18th August 2010 Matt's little brother, Nicolas, was born. He caught us a bit by surprise but we are thrilled with his arrival.

Photos and stories to follow.

First: Do No Harm

2010-08-08T21:18:00.002+02:00

This weekend Lloyd attended an International Paediatric Conference which was held in Johannesburg here in South Africa. He displayed the following poster at the conference. In it we share our insights that we have gained parenting a child who has special needs, with a specific focus on how doctors can better support parents.

To view it in more detail click on the picture and it should enlarge it.

Matt starts school!

2010-07-13T20:47:00.003+02:00

Today was Matt's first day at his playschool. He will be going twice a week for 3 and half hours in the morning. I was quite emotional about it - not because I have any concern about him going, but rather because it is a significant milestone. Matt's world is expanding beyond my care, my guidance, and my intervention. Up until now I have always been in the background as he explores new people and places. I try to let him have his freedom, but I am always watching for the moment when I need to partner him in engaging the world - whether it be to explain something new to him, or to help others understand his signs.

School is now his place...where he has to find ways to communicate, to contribute, to build friendship...all without me. And that is really good. I know he is ready. So my heart is at peace, but my heart was still sitting in my throat as I left him this morning - in recognition of the significance of it all.

When I fetched him I was told that Matt had not been upset, but rather had enjoyed exploring and watching and also choosing to engage where he felt comfortable. His teacher was positive about Matt's experience and felt that Matt was able to make himself understood.

Here is a photo we took just before we were about to leave this morning. I am not sure how much of the idea of school Matt understood at this stage, but he sensed it was a special day (and he really liked wearing his backpack).

Finding this playschool has been a real answer to many prayers. In South Africa there are no state run early intervention programmes for kids with special needs. In our city there are only one or two preschools that cater specifically for kids with special needs. I have been unsure about whether these are even the right place for Matt. I think I spent most of last year with this knot of anxiety as to what steps we would take in terms of Matt and formal education.

This year two unrelated people recommended this playschool for different reasons. I was told the classes are small, the teacher, Debbie, is a Christian, is very gentle and focusses on each child as an individual. What's more she used to teach at a school for kids with autism so she is familiar with signing and using pictures to communicate with non-verbal kiddies. When I contacted Debbie, she shared how she had recently come across our blog, and so was familiar with Matt and me. How amazing is that!?! And she would be delighted to have Matt in her playschool. Matt and I popped in for a visit and I knew immediately that it would be a good fit, especially because Matt was so comfortable in the environment. We made a video of Matt and Lloyd making Matt's signs so that she could familiarise herself before Matt started.

I am so thankful that God cares about every detail of Matt's life and that I can trust him with all the other uncetainties and unknowns that lay ahead in Matt's future. I am so proud of Matt and the person that he is. I look forward to see how he is going to grow in response to this new environment, and I look forward to see what impact he is going to have on this same environment. I have no doubt there will be mutual benefit!

Swim

2010-07-02T20:43:00.015+02:00

One of Matt's favourite activity of the week has been his swimming lessons. He starts squealing with delight when he sees me with his swimming costume, and starts signing "swim" over and over. In the car on the way to the lesson he loves practicing his blowing and swimming arm movements.

The lessons are held in a lovely indoor, heated pool so we have been able to keep going despite the onset of winter. This week was the last lesson of the season, and fortunately Lloyd was able to take some time out of work to join us. Thus freeing me up to take some photos.

Usually there are more kids but this time the others were absent so Matt had all the attention from teacher Laurelle. During the session the temperature outside the pool room dropped as the rain came down resulting in lots of steam inside - taking photos became a challenge but you can still see what Matt is up to desite the fog.

The kids get to play on a shallow step for the first part of the lesson - learning to walk in the water and reach down to find all the fun toys that are on the step.

All the activities are done to music and song which really appeals to Matt. Through the song actions the kids learn basic swimming strokes.

Matt and dad blowing bubbles

Through more songs Matt learns to hold on to the edge and also more blowing.

This sequence of photos shows Lloyd about to submerge Matt under the water and Matt coming up reaching for the fish toy on the side of the pool. Matt is very comfortable with being underwater, and has learnt to hold his breathe.

Matt loves the funky toys that are used to motivate him to move along the side of the pool. Here he has used his hands to "monkey walk" from Laurelle to Lloyd - to get the toys.

The pool noodle helps Matt to float a bit more independently and encourages him to kick to move forward. Here he has fun collecting the balls and depositing them in the basket.

Matt's swimming will be put on hold a little bit as his little brother or sister is likely to be born when his lessons are due to start again in September. But as soon as I am well enough to take him again, we will be back in the pool. It is such a joy to watch in the water, we would hate to deprive him of this pleasure for too long.

Laduma

2010-06-30T18:26:00.019+02:00

What has Matt been up to at his physio sessions this year?

Here are some of the activities he enjoyed in his session this week.

Bouncing on a ball

Building on Matt's interest in kicking balls, Pam introduced Matt to this new activity of dribbling a ball around a figure of eight. She gave hime a chance to get a feel for it, but did not force him to stay longer than he was interested.

And then to the kitchen for Matt's favourite - ice cream. Lots of licking. And an opportunity for Pam to work on his back.

And some stretching in between the licking

Look how well I am sitting, and licking on my own.

Then back to the new dribbling activity - and Matt really goes for it because now he is familiar with the game.

Laduma Matt Laduma*

*Laduma means "for it thunders" in isiZulu and is shouted in soccer when a goal is scored!

Someone capable of love

2010-06-12T14:44:00.004+02:00

"My studies in Aristotle helped me to order my thoughts, and to distinguish what really matters from what is less important. Aristotle loved all that is human. He made me pay attention not primarily to ideas but to reality and experience. But I differ from Aristotle over certain aspects of anthropology, particularly over his definition of the human being as a 'rational animal', a definition which excludes people with intellectual disabilities from humanity.
I would sooner define the human being as 'someone capable of love'. "

quote from Jean Vanier, Our Journey Home

Matt is a fan of the Soccer World Cup

2010-06-12T14:27:00.006+02:00

On Friday the Soccer World Cup 2010 was officially opened here in South Africa. Matt got into the spirit of it!

What's Matt been up to? Part 2

2010-06-04T08:35:00.004+02:00

Matt has been practicing his ball skills - he absolutely loves balls of all shapes and sizes. Everytime he sees sport on TV he runs to get the appropriate ball - soccer, cricket or rugby ball and he kind of imitates what he sees the sports men doing.

With the Soccer World Cup here in South Africa this month Matt is getting lots of exposure to the art of kicking and dribbling soccer balls. Big soccer balls have proved too easy for him to dribble so now he is practicing with the more challenging smaller balls.

What's Matt been up to?

2010-06-01T18:42:00.009+02:00

Matt has been such a tonic for me during our turbulent season. I haven't been that active in taking photos as usual, but here are a few showing what he has been up to the last month or so.

Matt enjoys mixing things that are in a bowl, as well as the taste-testing (don't we all). At his music and movement class they have been doing a song with actions about making cakes, so Matt's cooking skills have been reinforced there too. I regularly make mini muffins for Matt's snack time. We don't have a sign for muffins so we call them "baby cakes" - using the signs that Matt knows.

Some days are messier than others. But always entertaining!

For fun and for exposure to textures we play with rice, pasta, and beans. Matt loves digging his hands in the various mixtures; hiding and finding small toys and again more mixing and stirring. It is a great activity for the rainy days.

Stay tuned for an update on Matt's ball skill development.

Do not fear

2010-05-31T20:41:00.005+02:00

It has been 4 weeks since my last blog entry. I ended that post by sharing how I was planning to grieve the loss of our tiny girl. To be honest I don't think I got very far down the road of mourning. Not because I am still in denial or shock, but rather because it felt wrong to let go and grieve when there is still another little one alive. And it also became clear that the life of this little one was also at risk. Going into labour before 26 weeks would result in death for this little one.

So I have been focussing on the life that is there; and learning how to overcome the stomach-turning fearful thoughts that seem accompany this part of the journey.

In the week following my last post I would wake up every morning wondering if today was going to be the day I was going to lose the 2nd child. Every twinge of pain in my belly - no matter how small - brought panic thinking that I was starting to go into premature labour. Everytime I would think about the fact that we had to get through at least 7 weeks until we reached the "safe zone" of being 26 weeks pregnant, my chest would close up so tightly I could barely breath in - it was like my rib cage would shrink crushing the air from my lungs.

I knew that life like this was not sustainable - and I was also puzzled by the fact that God had repeated (rather abundantly) the phrase "Do Not Fear" in many circumstances throughout the bible. How could God be serious about this, surely there should be some expections to this invitation to live without fear. However it seems that there is no circumstance or situation wher it is acceptable to succoumb to fear. Desparate not to remain in the anxious vice grip I was in, I started to seek, read, pray about this fear-less living.

I saw that God was not telling us "Do not fear" because He would always remove that thing that caused us to fear, but rather the thing that I fear is not worth fearing. In the light of eternity the thing that I fear is really insignificant. I remember reading (I think it was C S Lewis) that our life here on earth is like the title page of a book, and after we die then eternity is the rest of the pages of the story. Not that God trivialises the things we fear or the things we long for. He loves us and understands our hearts cry. However we give such power to things that we fear - things that do not have eternal value. Power over us to rob us of the life that God wants us to live today.

Lloyd and I have been lighting a candle at the end of each day - thanking God for the day that has passed, that our baby is still safe - and praying for the next day, asking God for His protection. And so I have been living one day at a time; whilst also seeing my life from an eternal perspective - both view points have brought peace to my heart.

More freeing for me has been the revelation that God calls me not to fear because, regardless of what happens, He will be there with me - He will be the shepherd who walks alongside me in the valley of the shadow death, He will be there in the fire, when the waters rise up, and when the storm hits. He is Immanuel - God with us. God with me. And so I will not be alone facing that event that I dread should it occur. So it is not worth fearing and giving up my peace today because of what might happen tomorrow.

I do not underestimate the inpact of the many prayers that have been poured out for us - how they have bouyed us up over the rough seas, and have brought us into God's calming presence. I cannot express my gratitude to the many who have been emailing, texting, phoning, visiting with one message - that they are standing with us in prayer. I know that the freedom I have from fear is also due to these prayers.

Therefore, I have been able to live LIFE in this precarious season. I have been able to be present with Matt and enjoy him. I have been able to sleep peacefully at night and not wake with dread each morning. I have been able to taste my food. I have been able to be creative in the kitchen and garden. I have been able to engage with others, not shutting down or withdrawing. I have been able to live.

We are now at 24 weeks...we keep taking it one day at a time - one lit candle at the end of each day.

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you. I will uphold you with my righteous hand. For I am the Lord your God who takes hold of your right hand and says to you "Do not fear, I will help you"

Isaiah 41: 10, 13

Saying goodbye

2010-05-03T12:53:00.007+02:00

Today we went back to the gynae. I explained that I needed to check to see if my baby was really dead, that I couldn't believe it to be real. I also wanted to know if it was a boy or a girl.

The scan showed me a little girl lying very still in my womb, the heart was still quiet, and clearly her spirit was safely with Jesus. I can't explain the peace that descended on me. On Sunday Lloyd and I had been in a dedication service for 2 kids - there they had read the story of when Jesus rebuked the disciples for shooing the children away. The words about how Jesus drew the children to himeself, embracing them, came to my mind in the scanning room. I knew my little girl was with the One who is Love.

I didn't feel angry about the loss, just disappointed - because I won't get to meet this little one face to face, and to share the life that she might have had. I also felt sad for the other baby who will not know his or her sister.

Our other baby has grown since the scan on Thursday and is a bundle of life and energy and movement.

The threat of premature labour looms like a dark shadow over the life that is in my womb. We would love your prayers for this baby to be able to stay in for as long as possible.

In the midst of everything I am deeply thankful for Lloyd and for all those who have prayed for our marriage during this tough season. We are walking very closely. I must say that I don't think I have every been more in love with Lloyd. He has risen up as a man of tender courage and gentle strength, allowing me to process things differently from him and yet never making me feel foolish. He has been processing his own pain and has kept me close to his heart without withdrawing - sharing his journey with words and tears. He has shown love and tenderness to Matt despite the grief in his heart.

I am also deeply thankful that during this time I have felt God's love in a tangible way. On Thursday night, after we received the news, a whole bunch of our friends came around in the evening to pray with us. The love and care in that room was so deep and rich. On Friday I received a message from a distant friend, who is living in Hawaii and who would have had no knowledge of our loss. She felt God remind her to pray for me on that Thursday, and that God wanted to affirm my mother's heart for me children. I was so comforted by the knowledge that God had spoken to her about me on that very day of my loss.

So now I start the grieving process...of saying goodbye to our tiny precious girl.

And also the journey of readjusting my plans...for the nursery, for the pram, for the car, for our lives...

and the journey of allowing new plans to form.

The day I walked into a wall...

2010-05-01T20:57:00.005+02:00

On Thursday we went for a routine check up on our twins. We are in that safe zone, between the threat of miscarriage in the 1st trimester and the scare of prem labour in the 3rd. So we were not expecting anything sinister. As our gynae scanned my belly it became clear that she was concerned about baby A (as she calls them). She couldn't find a heart beat and the baby did not seem to be moving. She referred us to the Foetal Assessment Unit just up the road, there they have a sophisticated scan that could show what was going on. A long walk up a short road, hoping and praying that it was just our gynae's small machine that couldn't pick up the details.

In the small, dark room of the Foetal Assessment Unit the ultra-sonographer shook her head. No heart beat. With pity in her eyes she informed me that the "foetus had demised" - yes those were the cold, clinical words that she used.

That was the moment I walked head first into the wall. And it hurt.

I had not seen it coming. I had looked forward to the check up - to say hi to my 2 munchkins. The wall would not be moved and I walked into it. Pain throbbed throughout my body. She measured some more, and also checked over Baby B to make sure there were no further concerns. My mind was numb. I was told that since Baby A was the same size as Baby B the heart must have stopped beating only in the last couple of days.

The ultra-sonographer had squeezed us into her busy schedule so couldn't spend much time with us. Too soon she was ushering us out of the room. I had to will my legs to move to take me out of the dark room. The light seemed to bright for me, too happy, too full of life. I wanted to stay in that small, dark space for a while longer. I didn't want to face the world. I could relate to the darkness - it made sense. The light didn't make sense.

Back in our gynae's office I couldn't grasp what I had been told. My body felt no different. There was no bleeding , there were no cramps in my womb. No physical sign of the death that was allegedly inside my womb. Surely, surely the ultra sound was wrong. How could it be that the baby's heart just stopped beating. It did not make sense, in fact it still doesn't. This whole weekend I have been struggling to understand it all...it is like my brain doesn't work. It is like I am grasping at smoke or a cloud, I can't take hold of it. I just can't let go of Baby A. It's like I can't even start grieving because in my heart I don't believe this Baby could be dead.

My heart is so confused that I can't even think about the Baby B - apparently now there is a threat of me going into labour in the next 6 weeks. It is just too much for me to contemplate.

The one joy in all of this has been our precious Matt. He has certainly been aware that something is not right with his mom and dad. On Thursday he started showing many more of his sensory stimulating movements, like head shaking and seemed to go a bit wild. We were a bit concerned how to cope with him and the whirlwhind of emotions. Yet today he surprised us over and over, he was calm and caring. His interactions with us were so therapeutic and he truly brought joy into our home. I thank God for Matt and the light he brings into our lives.

And I look to God to carry us through this storm.

Horses

2010-04-27T20:30:00.006+02:00

Matt's new passion is horses. So recently when we were in Hout Bay - we popped in at a local riding school (Thanks to Kate and Andrew for the referral). No-one from the riding school seemed to mind us strolling around so we spent a good part of the afternoon there. At first Matt was unsure about the horses - these real life horses were much bigger than the ones in his books and on television. But after some time he became braver and started to enjoy the experience. He loved watching the kids who were having lessons in horse jumping.

Matt and Lloyd found a fun climbing frame - Matt fearlessly climbed to the top!

Belated Easter Photos

2010-04-26T21:49:00.012+02:00

Going through my photos today I realised that we forgot to share about Matt's Easter experience. This was the first year Matt REALLY got into it. My mom was very creative - turning the traditional Easter Egg hunt into a special treat for Matt. She wrapped Matt's favourite chips - Simba puffs - in yellow paper, tied with a yellow pipe cleaner. Whilst Matt had his nap we hung up these yellow surprises all around our garden.

After we helped Matt find the first yellow "egg" and unwrap it he quickly got the idea. It was great that he could have the immediate satisfaction of unwrapping the paper and eating the tasty snack. Soon he was unstoppable...

Oh the joy!

Great exercise for those small fingers to unwrap the paper!

Reaching high and low to find the "eggs"

And not minding to share with his grandpa!

And we then there was the Easter bunny. Matt was unsure about this thing - as he had not yet associated it with chocolate. Next year will most likely be different.

Some fun...

2010-04-10T20:31:00.010+02:00

For the last few weeks I haven't been up to blogging much. In the last month I took some photos of Matt having fun, enjoying the last days of summer.

Matt is slowly coming to terms with paint. For a long time he was very uncomfortable with the feel of paint. Slowly paint is becoming his friend.

Matt won a tea set at a friend's birthday party. Matt surprised us by really enjoying a pretend cup of tea... pouring, stirring and best of all "the sip". Followed by an audible "aaaah"

And then there is the pretend chocolate...almost as good as the real thing.

my squishy heart

2010-03-12T20:48:00.004+02:00

My heart is a melted puddle of joy. The glorious reason behind my emotional mushiness is the fact that Matt has started saying "mama".

A month ago, on my birthday morning (after a lot of coaching from his dad) Matt uttered that precious word as a birthday greeting. Since then he hasn't repeated it much. Until two days ago when something "clicked" in his brain. Once he started he couldn't stop...it was hilarious. For about 2 hours he would come running up to me with great excitement, exclaiming "mama, mama, mamam, mamam, mama, mama, mama" It seemed like he was so thrilled he could say that word that we wanted to practice it as much as possible in case he forgot how to do it.

The last two days he has used it appropriately to describe me, get my attention and announce my entrance into a room.

Hence the squishy state of my heart.

Compare

2010-02-26T13:43:00.003+02:00

compare

transitive verb

to regard as similar, to liken
to examine in order to observe or discover similarities or differences

intransitive verb

to be worthy of comparison with
to be regarded as similar or equal
to make comparisons
to stand in comparison; measure up

etymology: Latin comparare com- with parare- to make equal

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Often it can be very helpful to compare. It is a useful skill that has resulted in improvements, invetions and advancements in all fields of life throughout history. When we arrive in a new situation we compare it to what we know already in order to decide how best to deal with the unknown. Comparisons allow us to get the best deals and make the better choices. We can learn much when we compare one thing to another.

As long as comparison is limited to inanimate objects it is safe and helpful; but as soon as you start comparing human beings then it becomes more complicated. Comparison has inspired and motivated discoverers to explore new lands, sports people to push performance boundaries; academics to excell, and innovators to invent. yet it is a double edged sword - there is always one person who walks away feeling motivated and superior, whilst the other is left defeated, demotivated and inferior. And the darker side of comparison is what drives much of our materialistic economy - the desire to be better than one's neighbour - to have the better clothers, car, house, watches, cell phones, body, hair, appearance etc. is all rooted in me comparing myself to you.

Comparing children, is not however, a complicated matter. It is never helpful, useful or beneficial. It should be avoided at all costs. Yet so many of us fall into this trap, including myself. When I slip into measuring Matt up to another child, he and I inevitably end up feeling defeated, demotivated and inferior. I start focusing on all the things he can't do, rather than celebrating all the things that he can, and all the things that he is. Yet that is not really how I view Matt, nor do I wish him to view himself in this light.

Given how prevalent comparison is in our lives and society, I have decided that the only way to prevent myself from falling in its trap is to be ruthless about eliminating comparison from my life.

I am committing myself to being intentional about celebrating each child for who she is, for the unique gifts and personality he may have and for the personal achievements she has reached. I want to actively war against comparision by speaking blessing and encouragement over Matt and also over every child of my friends, seeking out the special think that God is doing in them.

Will you join me in finding the good and unique thing in every child?

Excitement

2010-02-19T18:40:00.005+02:00

There has been plenty of excitement in the Tooke household recently. We were thrilled to find out that we were pregnant again, and then completely blown away when we went for our 7 week scan to check that all was progressing well. I was just hoping to see a heartbeat, and nothing could have prepared me for us finding 2 heartbeats, within 2 beautiful little beans. Our gynaecologist told us not to get our hopes us as often the one doesn't make it. She said if they were both still there at our 9 week scan then there was an excellent chance that we will have twins!!!!

At first we were quite overwhelmed and fearful, but soon filled with peace and excitement. We realised that Matt has taught us a good few life lessons that has built resilience in us and will equip us to handle the challenges that twins might bring.

Lesson One: We have learnt to ask for help. We have no pride when it comes to saying we need a hand.

Lesson Two: We have learnt to take it one day at a time, and not let tomorrow, next month or next year stress us out today. We have learnt that God provides all we need in the present.

Lesson Three: We have learnt there are seasons. There are hard times and there are good times. Each season comes to an end, which is good news when times are challenging.

We also looked back on the first year of his life...Matt taking an hour to feed, then I would express for another 20 min, giving me less than 1hour 40min sleep at a time during the first 6 months. And Matt would vomit and vomit. Not to mention the emotional stress of coming to terms with having a kids with special needs. And the reflux, constipation, pneumonia and lots of medical appointments. Surely having twins will not be worse, might even be easier?

After a long two weeks of waiting. We finally had our 9 week scan, and they are still there!!! Both have heart beats. Both have grown well. Our gynae is happy with their progress. Of course getting to 12 weeks will bring much relief, but we were told we were over the biggest hurdle.

Already I can feel my heart has grown. I have such love for the two little beans, and this love hasn't in anyway lessened my love for Matt. It would seem I have somehow been given a bigger capacity to love.

So Matt is going to be an older brother. How exciting is that?

What a mighty God we serve!

A signing party

2010-02-13T21:10:00.006+02:00

For my birthday party this year we decided to have a SIGNING PARTY. After a lovely braai (barbecue), Lloyd and I ran a mini workship teaching our friends Matt's signs. We shared over 50 signs with them, and then we played a few word games with the signs to ensure everyone remembered them. In between the laughter and fun, our friends did so well. We were impressed with the speed at which they learnt the signs. We were so blessed they were enthusiastic about this, because we know Matt is just going to love having loads more people who understand him. It will also re-inforce the signs so he learns more. So we were just so thankful that the evening was such a success.

Too cute not to share

2010-01-25T20:15:00.003+02:00

Matt loves swinging, and he thinks his dad's fake sneeze is the best.

Makes a good recipe for belly laughter.