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

Marathon mind-set

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.

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


Celebration in the Tooke household!!!

Toilet Training

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

Clever

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

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

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

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.