And another RTSweetie in South Africa

To meet little Jodie click here. She too is in need of prayers at the moment!

A growing RTS family in South Africa

I have just come back from a lovely morning with two RTS sisters - Nicky and her little cutie Samuel (check out her blog if you haven't already) and the newest to our RTS family Tamsin - her daughter Payton is still in hospital and is not yet two weeks old. Payton has a problem with her heart and they are considering surgery.

We met at Tamsin's family home just before she was heading off to the hospital for the day. I love these ladies like they are my own sisters, even though we hardly know each other. Matt was a little subdued during our time with them, but I know he was able to show them that their future is not all doom and gloom, rather a hopeful place.

Please pray for God's strength for Tamsin and His protection and healing for Payton.

Before sunrise

On Friday Matt was booked for a MRI scan to check to see if he had a tethered chord. We were unsure how it would work as Matt would be required to lie very still for a long time in the midst of loud noise. Sedation was an option, but usually only really works with young babies - and then the only alternative would to get in an anethetist.

Lloyd had an idea on Thrusday night that if we sedate Matt when he was really tired - then he might just sleep through the MRI. However, the appointment was for 8am - not a time when Matt is usually tired. So my amazing husband woke up at 4 am, and woke Matt too (without waking me - bless him) and entertained him for the early ours of the morning. At 7.30am we gave him the sedation meds at home and drove the the hospital. By the time we got to the MRI room Matt had just fallen asleep - and he stayed that way for the duration of the whole, long, NOISY MRI scan. No anethetist required! Lloyd's sleepiness was all worth it. Poor Matt was very drowsy and almost drunk-like after the scan. But after a good two hour sleep he woke up mostly recovered. We still await the results of the scan.

Conquering Sand

This is the hospital where we have spent the last 10 days. It is in a tiny village called Zithulele. Lloyd and I went to a rural part of our country (Eastern Cape, previous Transkei) to support and serve 4 of our friends who live and work here.

Our friends Ben and Taryn (both doctors at the hospital) have recently done up this cute hut on their property for visitors. We were blessed to be the first occupants.

I took this photo standing outside our hut. You can see the sea in the far distance. All around us the view was the same - rolling green hills and little huts.

Matt got to learn more about roosters, hens and chicks - much better than just reading about it in the books. Although the rooster had a bit of an attitude problem and felt he needed to assert his dominance by attacking other "alpha males" - so poor Lloyd was often the object of his assault. (Fortunately Lloyd manage to run for cover or throw water at the determined fowl - and was spared an actual pecking)

We weren't worked too hard, and on one beautifully sunny day we headed down to a stunning rock structure called The Hole in the Wall - you can see why in the next photo. Matt loved playing on the stones - picking them up and throwing them. Matt had been really unwell for the first 4 days of our stay, fortunately by this time he was starting to recover.

Matt and I enjoyed watching the waves break through the Hole in the Wall. It was quick magical and Matt (who usually is always moving around) sat still - transfixed by the sound and movement.

Ben and Taryn have the BEST trampoline. Matt took a little while to get into it. He preferred it when dad jumped and the sensation of being thrust into the air, as opposed to jumping himself.
By the end of our visit when Matt could easily spend an hour on the trampoline being flung in different directions as others jumped around him - should people rest he would sign MORE MORE. And as soon as the jumping started so would his lively laughing.

Here is a cute pic of Matt and Emma having a laugh - Emma's parents Karl and Sal are also doctors at the hospital. Matt enjoyed being around the other kids although he is definitely in the phase of playing alongside kids, rather than with them.

The Saturday before we left the weather was gorgeous so we headed down to the beach with Ben and Taryn and their kids Joshua, Grace and little Elijah. The beach sand was very firm, the sun hot on our backs and there was a little river of warm water running into the sea. The perfect setting for Matt to overcome his sand-and-beach-hatred. Having other kids around who loved the sand and water thing seemed to really get Matt's attention.

It started with walking on the firm sand and discovering that it was not at all scary.

Next thing we know - Matt is crouching in the water, rubbing his hands in the mud/sand. Thoroughly enjoying it and looking as if he does this every time he goes to the beach.

Remarkable.

Our 12 days in Zithulele where filled with many fun and challenging adventures. (One of which was learning to survive without running water for 3 days as the dam pump had broken. I believe our friends there are still without water. Boy did I appreciate my tap when I got home). In terms of Matt's development that Saturday at the beach was a joyful highlight. I am coming to see that Matt's favourite way of showing us he has learnt something new is by surprising us with his new skill. No indication or forewarning that he is learning, no it just arrives - in its complete form. Makes life with him exciting.

Evaluations – in my perfect world

I received many comments and encouragement after my post on Matt’s evaluation. One of my friends who asked me how things could be done better. So if I could change the therapeutic and educational world for kids with special needs this is what it would look like…

Before I share my thoughts, please hear what I am not saying:
I am not saying evaluations are bad – on the contrary, they can be an amazing tool to help parents who are with the child day in and day out to recognise progress and they can ensure that the child receive the most developmentally appropriate input and services.

I am not saying that the medical and therapeutic world is bad – on the contrary they are a VITAL component to every kid with special needs reaching his or her potential.


In my perfect world there are 2 types of evaluations for our kids. The first is to determine delay in children; and a second evaluation is to track progress and also to determine intervention and service provision.

Determining Delay Evaluation
This evaluation will only be used when there is clarity needed as to if a child is delayed and also by how much. Hence it may only be conducted on a child once or twice in his or her lifetime. Once it has been determined that the child has developmental delay it is understood that there are no longer any benefits to keep measuring how delayed the child is – and the focus moves to helping a child reach his or her potential.

In order to measure the delay it is required that the development of the child in question be compared to the milestones reached by typical children. All professionals will recognise that no matter how emotionally strong and well supported a parent is, that the outcome of this evaluation will be traumatic. Also, it will be recognised that the written report is not a neutral piece of paper with words written on it, but a document loaded with power to destroy carefully guarded reserves of parental energy. Therefore, the parents will receive adequate counselling before the evaluation in order to fully understand the benefits and the purpose of it; as well as preparing them for the possible negative feelings they may experience. Parents will also receive counselling after the evaluation in order to help them process the feedback, so that their motivation and energy levels are not undermined. This is because all the professionals recognise that kids with special needs very vulnerable to their parent’s attitude and motivational level. It is understood that the nurturing environment created by parents is one of the most crucial factors that impacts a child reaching his or her potential. All effort is made to ensure that the evaluation does not add a burden to already burdened parents; and therefore negatively impact the child.

Tracking Progress and Determining Intervention
The second type of evaluation is held regularly to measure a child’s growth and development and to determine what input is required to empower the child to move towards her next milestone. However, the foundation to this evaluation is NOT a comparison to the development of typical children using chronological ages as labels for various milestones. So you will never find a statement such us “Jane’s ball handling skills are that of an 8 month old child”. Rather each milestone is reclassified making it a descriptive terms rather than a number of an age. For example in the book It Takes Two to Talk* they explain the stages of communication development as follows: The Discoverer, The Communicator, The First Word User, The Combiner. These stages follow on from each other in a linear process and are based on typical children’s communication development. Each stage is clearly explained and a checklist is given so one can easily see into which stage a child falls. Not once in the 171 page book do they link these stages to the ages of typical children. So I can work out Matt is the First Word Users stage, and then research what I can do to help him move on to the Combiner stage, without ever having to deal with the torturous experience of labelling his communication as that of a 12 month old.

In my perfect world, a new framework has been developed for gross motor development, fine motor development, speech development and all the other spheres of development so that each stage is labelled by a description, rather than the chronological age of when a typical child is able to reach that milestone.

A parent might receive the following feedback:
- Gross motor skills: Jane is in the First Steps Stage in terms of her walking
- Hand eye coordination: Jane is in the early Ball Catching Stage and can improve her hand eye co-ordination through the following activities.
- Fine motor skills: Jane has successfully mastered the One Piece Puzzle stage and is ready for 3 to 4 piece puzzles, threading and scissor cutting.

Ok my descriptions of the stages might sound a bit amateur, as I just made them up now. But I am convinced that if all the well-motivated therapist put their heads together they could come up with an excellently descriptive timeline of the stages that will be user-friendly, meaningful and motivating to parents and therapists alike.

These evaluations can be done as regularly as one requires them and will successfully and positively allow parents to track their child’s progress and also to learn what new things they can start doing to help their child onto the next milestone.

I would like to live in this world.

...

* "It Takes Two to Talk: A Practical Guide for parents of children with language delays" by Jan Pepper and Elaine Weitzman. The Hanen Program, 2004

Matt woke up to butterflies

Matt loves butterflies so to celebrate his 3rd birthday we decorated our lounge with these beautiful creatures. Unfortunately we didn't have the camera handy when we woke up and found his favourite animals perching on walls, picture frames and light switches.

In the afternoon we had a small party for Matt. We intentionally (but with difficulty) limited invites to the children that Matt knows and sees regularly. That way Matt would feel most comfortable and would not be overwhelemd by a big crowd.

The girls took to colouring in more butterflies for Matt.

Matt loved the food!

Robyn, Bryan, Daniella and Georgia - thrilled you could come

Jono and daughter Anna enjoying the balls. Smiley Grant turned into the "monster" that later chased the kids up and down our house, much to their absolute delight.

And what's a party without presents.

Maurietta had kindly agreed to sing some of Matt's nursery rhymes which she did with great enthusiasm. She captivated the attention of children and parents alike.

Anna drumming on the box!

Mom singing along, Matt enthralled

Ethan and Dad Richard clapping along.

Old Mac Donald had a rabbit...

So so so entertaining!

Matt loved the fact that everyone was singing his favourite songs - he sat there, entranced, grinning, and completely forgot to use his tamborine (which he usually shakes with much gasto!)

Matthew - we celebrate your 3 years!

Am I being oversensitive?

It’s taken me a week to write this post. I have been chewing over my experience, wondering if I am over-sensitive or if I just see the world of special needs kids differently.

Last week I took Matt to a special needs school that runs a home-based preschool programme. This means that every month you bring your kiddie into the centre and they will offer advice on which toys and activities you should be doing with the child at home. In addition you can loan some toys for the month.

To join this programme ones child needs to be assessed using a milestone scale and cognitive test. I didn’t quite realise that this was required. So when Matt and I went their last week Wednesday I was taken by surprise. If you follow my blog you know that I have concerns about the way kids are assessed – I don’t see the point in comparing them to typical kids, and letting the parent know how far behind her child is. Rather I think the focus should be on where is your child at, what is the next step, and how to create a fun, exciting environment for the child to move there.

So there I was with Matt and the teacher. As it became clear that Matt was being assessed according to a scale used for typical kids I felt a nauseous. But I told myself that Matt was soon turning 3 and I should be older, stronger, and better able to deal with the outcome. Also the teacher doing the assessment was sweet and gentle. I could see that her motives were to see special needs kids progress and reach their potential. Though I didn’t directly express my concerns with the assessment, she reassured me that she believes in moving at the pace of the child allowing them to explore and discover. She was kind with Matt, and very generous with praise. I also told myself that we can’t hide from these assessments for ever, I may as well get used to them.

So I let the assessment continue. It ended with her reading out the results which were basically a summary of how delayed Matt is in the various areas of development. I can’t even remember the details – my heart was rebelling, not allowing my ears to hear or my mind to register the numbers, it was screaming out loudly that these measurements do not define who Matt is.

The days following that evaluation I felt raw. Like my protective layer has been removed and all the pain and vulnerability has been laid bare. I have been trying to unpack why I react to them so strongly. Here are some unfinished reflections…

Matt is so young to have to undergo so many evaluations. (And I know that Matt experiences less than some of his RTS siblings in other countries). His only worry in life should be what toy he feels like playing with, or how come mom hasn’t got his food ready on time. Not how many blocks this someone wants him to stack or stressing about drawing straight lines.

I have come to wonder how accurate these measurements are, and how do they take into account a child’s will; choice and timing. She would ask Matt to match two pictures of cats. But what if he decided that today he didn’t like the cats and was more interested in the picture of the house that has doors. (Matt loves doors) Does that mean he can’t match? And why should he do what she says, he doesn’t know her or trust her.

She would pull out a new toy to test some ability and sweetly coax Matt to engage with it. She didn’t give him breathing space to familiarise himself to the new toy. Sometimes he would oblige her by following directions and other times he wanted to first test the toy, get to know the toy, turn it, look at it, explore it. There was no time for that, either he used it appropriately or not. Either he could or he couldn’t. There didn’t seem like there was any room for any other explanation. I know I am being a bit harsh, but that is what it felt like. I just don’t think she got to know Matt or his potential.

And I don’t know how much of what was measured was Matt’s ability or if it is a measure of his level of exposure to that activity. Surely if you were measuring an ability you need to introduce the activity and give the kid time to learn how it works. You can see how they respond as they explore the toy. I think these assessments would work more effectively in a preschool setting where the teacher is with the child for a considerable length of time, and could see how the child engages with the toys or activities without the time pressure of an 1.5 hour assessment.

I have such a strong desire to protect Matt from this world of being measured and assessed and evaluated. Of having to stack and count and name and select. Of being gently and sweetly forced, coerced and manipulated into putting something into something else in the right order. Rather I want for him to try and see, to make a mess, to do things differently just for the fun of it, to test the various possibilities, to discover – even if it does take a bit longer, even if we can’t tick all the developmental milestones in the right order on the right time.

My last thought on this matter is that these evaluations seem to undermine the achievements and hard work that Matt has done. In our house every mini milestone is such a celebration because it requires much input, waiting, patience, wisdom, sensitivity, appropriate engagement, exploration, discovery, encouragement, and even more patience. This whole process is not recognised or validated, rather one is just left with a sense of what one’s child is NOT achieving.

And I think that makes me the most angry. I value Matt, and our life style of our celebrating too much to let it be spoilt by comparisons to typical kids and defining Matt by what he can’t do. I don’t know how I am going to survive this world of working with kids of special needs, I just seem to see things so differently.

Having a ball

Matt's recently underwent an Occupational Therapy assessment. I had shared with the OT that I was not interested in having Matt compared to typical kids in terms of his milestones, but that she should rather help me understand where he is at, where he is heading towards, and what we can do to help him get there. And that is exactly what she did - so we are now armed with lots of fun and creative ways to partner Matt in his development. The first idea that we put into practice can be seen below. A very simple design - just an old ball pushed into an old pair of stockings - and the result is hours of delightful entertainment.

Matt literally laughs out loud with joy as he plays.

My song

Matt has been unwell for about a week now. High temperatures, vomiting and diarrhoea. It looked like he was getting better on Sunday, but on Monday afternoon the fever struck with a vengeance. We started him on antibiotics. Tuesday we saw no improvement – in fact most of the day was spent keeping his temperature down as it would climb high the minute the meds wore off. Today he was diagnosed with tonsillitis. Now we know what we are dealing with and have adjusted his antibiotics appropriately. I am hoping the high temperatures will pass soon.

It has been tough for Matt – he has really been feeling unwell. He has been so droopy and clinging. I can’t explain to him what is happening to him, so on one level I have felt frustrated. But on the other hand, since I cannot rely on words for explaining, I have discovered a very precious way of communicating comfort and reassurance to him – through song. My song. Now I am not a great singer by any stretch of the imagination, yet my simple tunes, though sung in a slightly off key manner, seem to really touch him. On Monday night he woke up with such a high temp that he was shivering so violently that he could hardly move his limbs. Whilst we were waiting for his temperature to come down, I cuddled him on my lap with his head against my chest. I could tell that he was tense and confused about what was happening to him. I started singing and immediately he calmed him and snuggled in closer. He knew that he was safe. I know he felt my love and care for him through my song. Music has many values, but over the past few days I have seen its visible effects on Matt’s body. I have been struck by what an amazing gift music is to us as humans.

A Matt look-alike

Last week Matt and I met a tiny little baby called Samuel. He has a full head of hair – dark black. He has a big red birth mark on his forehead. He has the cutest face. He has thumbs that are elegantly angled outward. He looks like a new born Matt, only smaller. He looks like he could be Matt’s younger brother. In some ways he is.

Yes I finally met another child with Rubinstein Taybi Syndrome. This was a day I have been longing for and dreaming about for a long while.

Last week Thursday Samuel came to visit us with his mom and dad. I had been in telephonic contact with them for a few weeks and finally things worked out for us to meet. I know that Sam’s parents are still trying to find their way in "Holland" and so they were probably not so excited about meeting me as I was to meet them. But for me it was so precious – knowing that we are not alone anymore. Being in physical contact with someone on the same journey – words can’t describe that feeling of camaraderie. I know our friendship will grow from here.

Pray for little Sam, who was born prematurely, and is facing a number of health challenges. I was so overwhelmed and so overjoyed at meeting them that I forgot to take photos. Hopefully we will be able to visit them soon and I can get some pics – so watch this space.

I will still hope

This last week has been fairly emotional for me. Nothing specific has happened – no big crisis or anything. But I have been thinking a lot about Matt’s communication. Last week I was looking forward to attending the second level training in Makaton Signing; yet at the same time I was also quite angry about having to go.

I really am thrilled to be finding a way of opening the door of communication to Matt. I love it every time he makes a sign. I love it – with a deep and wild joy!! I love the connection. But another part of me is not ready to accept the fact that Matt might not be verbal. I am such a verbal person. My life makes sense when I talk. My profession is about talking and listening. I build friendship through words – giving them and receiving them. Some people connect with others through touch, or doing something together – I connect through talking. It seems so crazy to me that I should have a child who might not talk.

My husband was wonderfully supportive, allowing me to vent and reminding me about how well Matt is doing. The truth of his words became clear for me on Saturday during the training session. I met a mother of a 5 year old who couldn’t speak; although he understands a lot. He hasn’t learnt to sign or communicate through gestures. He doesn’t even point – but if he wants something he will push his mom towards the thing that he wants. He is quite strong and as he is getting older it is getting harder for his mom to cope. This mother’s strength in such trying circumstances really touched my heart. And it also made me realise how much I truly have to be thankful for. Gratitude really does bring me back to earth again, and plants my feet firmly on the ground.

Yet, although I have accepted many things about Matt’s syndrome, I am still not ready to accept the thought that he might not speak. I still pray that he will. But I won’t let it dominate my life, and I won’t let it rob me from fully enjoying every communication moment with him.

But I will still hope…

Here Matt is signing KISS -he is facing away from Lloyd;

but making the sign in the mirror so Lloyd can see.

Then he turns and does exactly what he signed.

A precious kiss for his dad.

Hair

Last week I cut Matt's hair. It didn't turn out that well - clearly I need some lessons in hairdressing. That night we were playing around with some of my hats, maybe they will come into handy...

The last two photos are of Matt in his own hat - just in case you were wondering!

We must never be pre-occupied with the future.

There is no reason to be so.

Mother Theresa

Blossoms

I recently updated my facebook status by saying that “it’s like spring in Matt’s life as he is blossoming all over the place”. One of the main areas of blossoming has been his communication. A precious consequence of this is that Matt and I are growing closer as we better understand each other. Matt is constantly demonstrating that he understands way more than one might think. If I ask him to find a favourite toy he will seek it out and bring it back to me. Sometimes when I am speaking to others he might pick up on a word that I am saying and sign it back to me.

He uses both PECS and Signing to communicate. He usually uses signing to express a need for food or drink or some action that he requires, like jump or spin. He is also uses signs to name farm animals. He uses PECS to request items that he desires. Most of his toys are stored in plastic boxes with pictures of them on the boxes. He removes the picture of the toy that he wants and brings it to me when he wants to play with it.

We also have a place in the kitchen where pictures of various food items are on display. Like most kids he is only really interested in the chips and biscuit pictures.

It’s been brilliant to see Matt express his likes and dislikes – for example his passion for seeing his mom and dad show affection. Whenever Lloyd comes home, Matt comes running to me and shows me the sign for “kiss” over and over until I ask him who I must kiss - he replies by signing "dad". When I kiss Lloyd, Matt visibly melts with delight. Only then will he give his dad a kiss.

I am thrilled that we have these two methods of communication. I often imagine what Matt’s world would be like if he didn’t have these two avenues of expressing himself.

There are some limitations though. Matt’s vocab is limited to what I can teach him, and I only know so many signs. Unlike other kids who hear everyone talking all the time, and can pick up any word that might seem interesting to them – Matt can only learn signs that I teach him. He might want to tell me about the singing octopus toy that we have; or point out to me the bright green frog at the aquarium but he doesn’t have the signs for those. I have noticed how kids often come up with the cutest or weirdest thoughts on matters that you did not expect them to have an opinion. Matt can only comment on the things for which we have given him the signs. It saddens me to think that he might like the rainbow that Barney sings about, or be drawn to the stingray puzzle piece and I won’t know that. I love hearing my friends share about how their little one said “the funniest thing other day”, but I do feel bleak that Matt doesn’t have that full freedom of expression because I can’t give him signs for every word.

My ongoing prayer is that God will equip us to help Matt to one day be able to express himself without limits. I am not sure what that will look like. I know that full communication is not necessarily reliant on speech, but I do still pray that Matt will speak one day. In the mean time I am determined to equip myself and those around me with as many resources to help Matt communicate to the full.

Our Speech Therapist saw Matt this week and feels that he is ready to move onto the 4th Phase of PECS. He is now able to discriminate well between pictures, and is able to correctly choose the picture to express his preference. I am still to find out all about phase 4, but I think it entails storing all the pictures in a folder and using that as a base from which Matt can remove the photo of the item he requires. I have already developed such a folder for my own storage purposes, but now Matt gets to use it too. So watch this space.

This file contains pictures of the various foods that Matt eats.

This file contains the pictures of Matt's toys

Physio can happen in most places

...even whilst waiting at the airport

Right, now we ready to start again...

What Matt learnt in KZN...

In our previous post we started sharing about our holiday to KZN. Matt seemed to really enjoy the new environment. Here are some of the fun discoveries that he made.

Discovery #1 - Farm animals are FUN!

We've been to petting zoos before but Matt has not shown as much interest in the animals as he did on this holiday. We visited 2 animal farms. It was fun to show Matt the real life animals as we showed him the signs.. We know the signs for bird, pig, horse, goat, rabbit, duck and sheep. Matt already knows "bird" and he loved telling us everytime he saw one. He was intrigued by the horses but that sign is a bit tricky for him, although he did try to do it.

Matt liked the rabbits and finds it funny when mom makes that sign for rabbit.

These were the friendliest (and non-biting) goats we have encountered. They loved eating mealies (corn) from people's hands! Once Matt got used to it he found it quite entertaining. The mealies were given to us in recycled tins and Matt had to stick his hand right in to get them - great sensory experience for him.

These white hens went 'crazy' when we threw the mealies in the cage - a real feeding frenzy which Matt found fascinating. At first he found it hard to throw the mealies and let go - he would make the throwing action but keep his fingers closed. But with a bit of practise and help from some enthusiastic hens he got quite good at it. Mom and dad had to work hard to help him understand that, although the animals seemed to think the mealies are the tastiest things ever, they arenot good for Matt to eat!

Discovery #2 - Swings are FUN

Matt used to feel very uncomfortable with the movement of swings. That has all changed and swings are now his all-time favourite activity. He likes it when we start off slowly and, once he gets confidents, likes to be pushed quite fast (which amazes me considering how much he used to hate it). You can tell by his face how much he now likes it!

Discovery # 3 - The beach is not that terrible

During our 3 days on the coast Matt learnt that the beach is not the worst place in the world, and sand is not some extreme form of punishment. I think it was good for Matt to see his 2 little friends - Angus and Dana - playing in the sand and laughing in the water. Matt's standard response to a beach visit has been to cling onto Mom with all his might and use every once of energy to ensure that he does not touch sand. He would only relax once we were headed back to the car, so needless to say our beach visits have been relatively short. Here you can see some photos of Matt on the 3rd day of our beach stay: He is sitting on his own- granted he is on a towell and not making much contact with the sand - but he is not attached to his mother like a limpet shell to a rock. A big achievement! And he is playing with the sand - voluntarily. Another big achievement! So I although I can't say Matt finds the beach FUN or that he now loves sand, I can say he doesn't hate it that much anymore.

Discovery #4 - Shapes are FUN

Matt was given a "shape game" from his cousins. We have one at home where the shapes are a lot smaller and there is more variety - stars, ovals, hexagons as well as the basics. Matt has understood what needs to be done, but his fine motor skills have limited his enjoyment of the game. However this new "shape game" has BIG pieces and only has triangles, circles and squares. We love watching the joy ooze all over Matt's face as he gets the shapes into their correct holes.

Discovery # 5: We can sign what we see in books

As part of Matt's in-flight entertainment we bought him a new book which has animals hidden under various sliding-pieces. Besides thinking the sliding bits were marvellous (Matt can now play hide-and-seek with the animals); Matt started showing us the signs for the animals that he saw in the book.

Here Matt is making his version of the sign for "cat".

It would seem that our little Matt not only enjoyed his time away but learnt lots of cool stuff too. Visit our blog tomorrow for installment #3 of our trip - we show you a profitable way to spend your waiting time at the airport.

Our KZN Holiday part 1

We have just come back from our most enjoyable holiday since Matt's birth. We were visiting friends and family in and around Pietermaritzberg (in KwaZulu Natal aka KZN). Matt was healthy and happy and only vomitted once. Here are some of the highlights...

For the first 3 nights we enjoyed the restorative quality of nature...

We stayed in a rustic wooden chalet

We were adopted by the friendliest cat ever

Acacia trees surrounded the chalets.

We spent the rest of the week staying with friends and family. It was so good to connect with friends who we haven't seen in too long.

Dave and his newly born son, Samuel.

Leesa (David's wife) and their first born Matthew (great name!)

The two Matthews struggling to contain their excitement as bubbles rained down on them.

Grant and Angus (aka Angoose)

Bath time for the very dirty boys - both are big adventurers and explorers!

We spent a long weekend on the North Coast (at Salt Rock) with Grant, Shelly and Angus; Dorian, Yvonne and angelic Dana; and Andrew (who could make cool bird call sounds so Matt thought he was the best)

Another highlight of our trip was spending time with Lloyd's side of the family. Matt loved seeing his grandparents again. And also had fun playing with his cousins.

Grandpa introducing Matt to the local flora - cool texture

Matt was not so interested in the trampoline, but loved the swing!

Jonathan and Christopher assisting Matt with shapes. They kindly gave Matt their shapes toy that they had played with when they were younger -thanks guys

Breakfast time and Matt found the ancient coffee grinder (that still grinds excellent coffee) to be of great interest!

Matt even joined the Tooke boys rugby game!

Watch this space for more on what Matt discovered in KZN. (For some reason it is taking ages to upload photos this evening - so I will post more tomorrow, if I keep trying now its gonna drive me mad! )

A Big Hat

Beacons of hope

Their love for each other was unmistakeable. Neil and Bee. He was in a car accident a few yesars ago, which left him with a host of injuries. He has had to undergo a number of surgeries, and is in mostly good health now. Except that his thinking and memory is affected. I met him in 2005 when he came to volunteer at my work place. It was arranged that he help us out because it would be good for his recovery. In return we were blessed by his friendly and positive personality.

Now I see that he has fallen in love. Bee - She can't really manage to walk without Neil gently supporting her. She is beautiful with well groomed hair, face and dress. I can see her mind is sharp, but she struggles to form words in her mouth. She talks, I try to listen and only understand a little. Neil "translates" for her - he understands everything she says. She too was in an accident and her injuries have taken longer to heal.

Neil still comes to voluteer and this week he had brought Bee with him. I met them on their way our of our building so didn't get long to chat with them. But I was drawn to their warmth and obvious love for each other - so tender.

As I work part time I am not always up to date with everyone's news. So I asked a colleague to update me to Neils relationship with Bee. They have been in a relationship for a while now, in fact that have made promises of love to each other and exchanged rings. They are in some senses married, but they cannot live together as the complications of both their injuries would make it too difficult. They both live with their own families - in two different cities! But they don't let distance undermine their love - they travel regularly to visit each other.

I was so moved by their story - their love is a beacon of hope for me, and for my dreams and contemplations about Matt's future. If you read my blog regularly you will know that my deep prayer for Matt is that he will always be loved. I am not necessarily talking about "marriage love" - but just love: "interaction, understanding, belonging, friendship love". In a world where people so often get distracted by outward appearances, ability, success, and power - Neil and Bee's love tells me that there are people who can see past all the outward stuff and love the person on the inside. That is indeed a beacon of hope.

Shades of grey

On Monday I was sitting in a neurosurgeons office discussing whether or not to operate on Matt's spine. It was so confusing...nothing seemed clear cut at all. Lots of shades of grey.

Many kiddies with RTS have something called a tethered spine. If I understand correctly - it simply means that their spinal chord is attached to the spine at some point - which it is not supposed to be. It can result in neurological problems in legs and badder and cause other things that I can't remember. Matt had an MRI scan when he was 1 years old and the radiologist reported that he had a low lying spinal chord but it was not tethered. Recent posts on our RTS support group have made us realise that a low lying chord could be an indicator that it is tethered, although it may not be obviously so. The neurosurgeon confirmed this but was hesitant to rush into surgery in case it wasn't. So more investigations are required - firstly by a urologist to check how well Matt's urinating is working (not sure what that entails yet) and possibly another MRI to see what his spinal chord is up to now that he is older.

Hopefully with these further investigations the shades of grey will be replaced with more clarity. I just hope the investigations are not too intrusive or uncomfortable for my little man.

Last week was Mothers Day...

Here is a small portion of the day that I managed to capture on camera...

Matt was very ceremonious as he handed over the gifts that he and Lloyd had got for me. He very happly to relinquish the flowers, but was most unkeen to pass on the chocolates - hhmm I know where he gets that from :)



Thank you to my two men for communicating to me that you love me and that your appreciate all I do as a mother. I love you both.

No limits

She had a shy but radiant smile at first. She was one of those people who, when you met her, were invited into her “real” self immediately. It seemed that she did not want to play the social games of “hide and seek”. I was warmed to her quickly. Her name is Jess.

Last Saturday our physiotherapist had invited us to meet Jess and her mother. I had previously heard inspiring stories about this young lady: how she had been given a “no-hope” diagnosis, and how her parents had been told that she would never be able to read or write. Today she can send text messages and surf the net. She has raised money for her personal needs – like buying plane tickets, a keyboard, air-conditioner, and many more useful items – by making and selling beaded angels.

Her mother had a kind smile and was delightfully interested in Matt. I could see that she had a deep and firm strength to her – most likely built through the years of raising a child with special needs. Yet her strength did not overpower her gentle and inviting manner. I enjoyed hearing her share about being a mother to Jess. I was very encouraged.

Although our visit was short as Matt needed to head home for nap, it was a precious encounter. Jess is a role model for me – a picture of how a young person with special needs can develop into an insightful, humorous, and confident adult. Interacting with her has strengthened my belief that we need to be so careful and so intentional about never putting any limits on Matt’s ability or development.

I hope to see Jess again – I have placed an order for some of her beaded angels so I am sure we will.

Raindrops keep falling on my head

This week Matt and I were leaving a friends place, walking to our car parked about 30 meters away. I was holding Matt and after walking only 10 meters it started raining - and not just the drizzle that we in Cape Town usually get, no, rather it was big, fat drops of rain that hurt as they landed on your head. So I ran the last 20 meters with Matt cowering from the wet blobs of rain. When I reached the car we were both drenched. I practically threw Matt into his car seat, then jumped into the front passenger seat. The rain now sounding like a heavy metal band on the roof of our car. I turned to see if Matt was ok. He was sitting very still and holding both his hands on his head. He had this shocked expression on his face that could only mean: "What on earth was that???!??? How come water was falling on me!! Isn't it only meant for bath?????"

We sat a while in the car listening to the noisy rain, whilst I tried my best to explain to Matt what rain was and how come it landed on his head and why he got so wet.

Family Time

These last two weeks have been filled with fun as we have been catching up with Lloyd's family. His brother Lance aka Uncle Neeb was visiting from the UK, and Lloyd's parents visiting from Pietermaritzberg (the otherside of South Africa).

Lance has a beautiful house in Simonstown - and so this became the gathering place for the Tooke clan.
The house is stunning but not very toddler friendly, so it was a full time job keeping an eye on inquisitive Matt to make sure he didn't fall off the balcony, down the stairs or into the pool!




Here is rare moment - Matt resting.





Matt putting his hands to his mouth - his sign for food or drink.

Matt's favourite mode of transport.

This restaurant serves the best sushi we've had in Cape Town

(and that Lance has had in the UK!) Matt didn't eat Sushi, but enjoyed Granny's chips.

Another favourite mode of transport.

We weren't quite sure if Matt was loving or hating the wind here!

Exhausted after the outing!

Jumping with Grandpa in time to music (played by the purple caterpillar)

Reading with Granny

Touching noses with Grandpa

When there was a break in the rain we went for a short walk to find some penguins. Again Matt made use of his favourite mode of transport.

Here is Gaynor and Len who joined us for lunch on Saturday. Gaynor has been such a blessing to me as she babysits regularly. She and Matt have a special bond.

Here is a lovely family picture...Matt with his parents, and both sets of grandparents. My parents are to the left and Lloyd's to the right.

Its fun when dad is on holiday

Lloyd has been on leave so he has had a lot more time with Matt. Here are some fun pics of the two of them building a big tower with Matt's used formula tins. By the time I managed to grab my camera the building process was well underway...

Celebrating the big tower with a clap of joy!

Our Easter in Betty's Bay

Over the Easter weekend we were in Bettys Bay (a holiday town about 1 hour from Cape Town) with our friends Ruth and Jono and family. We had such a good time that we forgot to take photos. We did however manage to catch a photo Matt's first bite of a marshmellow chocolate egg!

He really liked it!!

This Easter our celebration was rather different from usual. We joined other holidaying families in someone's holiday home for an informal but meaningful service. Ruth and I left the service half way through as our toddlers weren't keen to sit still. As it was a sunny and calm day we headed for the lake. I was very conscious of God in this setting - the lake is surrounded by lush vegetation and has a beautiful mountain as a backdrop.

We also got chatting to a young mother and her daughter who were also enjoying the cool water. This young girl has cerebral palsy and at the age of 6 is unable to walk or talk. Once this mother heard that Matt had a rare genetic syndrome we connected immediately. Before I had Matt I would have been shy or uncertain as how I should interact with her and her daughter. I probably would have stayed away. But Matt has taught me that he has such depth to his personality despite his medical label. So as I looked into this young girls eyes I saw beauty and I saw a little of the person who was in there. It was a short but precious encounter.

Later that evening Ruth's mother, Eleanor led us in communion after serving us a tasty supper. She is to be ordained as a minister next month, and her reflection on Jesus' death and resurrection was meaningful and deeply encouraging. After a time of sharing and praying for each other, we spent the rest of the evening in fits of laughter playing the board game "Taboo". We returned from home rested and joyful.

Saying Goodbye

My brother, Kennet, and his wife, Nantia, are moving to Canada this week. They will be there for at least 3 years - maybe longer. We will miss them and we are SO sad to see them go, but we wish them lots of joy in their adventure! Here are some pics of Matt having one last visit.

A milestone not found in a paediatric textbook

Matt’s ability to handle textures, as well as to co-ordinate chewing has really improved over the last month. He is trying new foods all the time and managing to eat them without gagging. On Friday we were loving our visit with my brother and sister in law – so much so that we lost track of time. Before we knew it, it was Matt’s supper time and we didn’t have any food for him. We decided to stop in at Steers and get Matt some "slap chips" (French fries) and a milkshake. We were rather nervous as we first let him bite into the chips – and to our joy he ate them with such skill and confidence you would have thought he had been eating them his whole life!! Next he happily drank the milkshake – from a cup!! Also a first!

I was so thrilled and overjoyed at Matt’s achievement.

How strange it must seem that I am so excited at my son eating “junk food”. Certainly not a milestone that one would find in a paediatric handbook. I was reflecting on why it was such a big thing. I think it is because it represents freedom and spontaneity. For so long we have had to be so careful to plan exactly how long we are going out for, and if it overlaps with a meal time we have to bring along the carefully pureed meals. Often social arrangements are cut short to get home on time. And whenever we feed Matt in public or at friend’s houses there is that ever-present fear of the “vomit monster”. We would always have to ensure that we had a vomit bowl handy before embarking on a meal – his vomits were that frequent to require this action.

Now all of that can change. We will still do our best to ensure Matt eats healthily (not always using the junk food option :) , but if we choose to be a bit spontaneous and things don’t go according to plan we now know we can find something for him to eat. And what joy to know that Matt has defeated that vomit monster – I hope we have seen the last of him.

So I celebrate the “slap chips” and milkshakes and look forward to more spontaneous, fun outings that are free from the vomit-monster fear.

Matt's physio reminded me that it has been a while since I had posted photos of Matt on our blog, let alone photos of Matt at physio. A good point. So here are some highlights from Matt's most recent physio session:

This is my physiotherapist Pam, in case you haven't met her yet.

Spinning the wheels of the car is fun - especially with two hands at the same time.

I like looking at what the other physiotherapists are doing with the other children.

In fact I enjoy my session a lot more if there is company around.

This is one of my favourite parts of our session - in the sink!!

Waterpolo training?

Hhhmm what are these foam things? What is this white stuff?

OK let me tell you - that white stuff doesn't taste that good!!!?!!

Peek a boo through the window of the tower that Pam and I built

Hhhmmm what is she doing with my hand??

Let me try this on my own...open hand...rubbing back and forth...feels good!

Signs

It has been a while since I have had space in my life to blog. Our life has been full and fat with many experiences that I would love to share. Instead of inflicting one loooooooong post on you, I will post a few shorter ones… so watch this space.

A few Saturdays ago Matt’s speech therapist invited Lloyd and I to attend a training course in Makaton Sign Language. Makaton was started in the UK to facilitate adults with mental disabilities to interact with their world. It has now been adapted for children with communication delay, and also specifically to the South African context.

At the end of the day my brain was exhausted as we had spent a lot of time learning and practicing new signs. But my heart was soaring as I just knew that this would further open up the world of communication with Matt. He has already shown a real interest in signing a few basic signs.

It was also a special day for me because it was the first time I have been around a group of people who know kids with special needs – those who attended were parents or therapists. I have only ever been around one person at a time who is familiar with my life experience – not a whole room full of people! I felt affirmed and understood – it was amazing. So often in social settings I am wondering how much to share about Matt with people – I have to weigh up what do they need to know. Whilst I don’t want to label Matt so they see a syndrome rather than this beautiful personality, I also don’t want them to think that it is taboo to discuss Matt’s special needs. This experience was so different – everyone understood, and so I could be completely comfortable and relaxed.

It has now been a couple of weeks since this training and we have included the signs in our everyday interaction with him. In this short time Matt has picked up some new signs – “mom”, “eat/drink” (he uses one sign for both), “bath”, “more”, “bird”, and his latest is “where?” although he sometimes uses it out of context. It's really so exciting!!!

I have taken photos of Lloyd doing each of the signs that we are teaching Matt (about 30 signs) so that we can equip the other key people in Matt’s life to also use them.

Here is Lloyd saying SLEEP and GOOD