Sunday, May 29, 2011

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.

Thursday, May 26, 2011

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.

Wednesday, May 25, 2011


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.

Tuesday, May 24, 2011

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. 

Friday, May 6, 2011


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.

Thursday, May 5, 2011

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.