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! )