Matt's speech renders parents speechless

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"

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

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

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

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?

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

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

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

Future Fears

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

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...

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

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

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

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?

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

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

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?

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

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.

Discovering the Possibilities

"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...

Introducing RTS South Africa

www.rts-southafrica.weebly.com

Check it out!

Music to my ears

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

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...

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

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??

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

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

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