We are made for loving. If we don’t love, we will be like plants without water.

- Archbishop Desmond Tutu, Nobel Peace Prize winner

Test driving a Speech Therapist

Matt has become more vocal in the last few months and has recently shown signs of understanding that he can communicate. He certainly understands us when we talk to him, e.g. if we ask him “where is doll?” he will crawl to it, or if we say “lets go to Matt’s chair” he will crawl to his feeding chair. Since RTS sweeties tend to struggle most with speech we think it is time for Matt to receive help from a speech therapist who focuses on language and communication. Our current speech therapist has a special interest in feeding issues, not language.

But where to begin??? I wish finding a speech therapist was a straight forward as buying a car. With cars (and most other commodities) one can research many things – what does Car A do in comparison to Car B; how is Car C more suited to my needs than Car D. I can read reviews by others on what Car A does. I can find out about its engine, its safety system and other such things - I can even test drive the car. So when I finally buy the car I know it is the right one for me.

Isn't finding someone who can help my child to talk more imporant than finding the right car???

I wish that when it came to finding a speech therapist (or any other therapist or medical professional) one could do research too. Wouldn’t it be great if there was a place where one could compare all the CV’s of the various speech therapists in one’s town? Add to that a personality test of each so one could ensure that the therapist would connect with one’s kid. And how about a review of each therapist written by present and past patients, giving them a score out of 10? Lastly wouldn’t it be wonderful if one could have a “test drive”, a free first session to check out if their manner, experience, paradigm and method is the best for one’s child.

Instead - one is reliant on another medical professional referring you to someone they know. One doesn’t get to “check out” what the therapist is like before therapy begins. And unless one is lucky enough to meet a parent who has used this therapist, there are no “reviews by other users” available. On top of that, one has to pay double for the first session because that’s when the therapist “assesses” one’s child. The whole process feels a bit back-to-front.

So I am asking your prayers to help us find the right speech therapist for Matt. I feel like I need intervention from the Lord on this one, because there is only so much that I can do to control the process. And this person is going to be really important in Matt’s development, and will have to journey with us for a good while.

In addition to LOTS OF PRAYER I have decided on the following:

1. I have asked the current Speech Therapist, my Occupational Therapist friend, and Matt’s current physiotherapist to all refer me to the speech therapist that they think will best suit Matt’s needs.

2. I then intend to turn things on their head – I will ask each Speech Therapist if I could meet them and chat to them about their experience and paradigm of working, before they start “assessing” or doing anything with Matt.

3. With great humility, recognizing I haven’t specialized in Speech Therapy, I have started making a list of essential characteristics I need in a Speech Therapist:

• Someone who has experience with children who are non-verbal.
• Someone who is open to using any method to help Matt communicate rather than be fixed on using one method only.
• Someone who is more interested in what Matt can do and is getting ready to do, rather than focus on what he can’t do.
• Someone who truly believes that children like Matt have potential and can understand a LOT more than they can express.
• Someone who is eager to work according to Matt’s readiness and interests rather than her own set agenda/programme.
• Someone who sees me (mother) as a vital and equal partner in helping Matt to develop his communication skills.
• Someone who connects with me and Matt – someone we just "click" with.

4. After the “interviews” I will take Matt to meet those who I felt had potential to work with Matt, and see which has the best connection with him. I would be happy to pay for their time to do this. And then finally chose the one who fits best with Matt.

I hope this works! Gulp!

The R-word

This week, in the USA, a movie has been released, called "Tropic Thunder", that mocks those with intellectual disabilities and uses the word "retard" in a derogatory way a number of times. I have signed an internet petition along with many others to protest against this film, and in particular the use of the R-word.

One of the mom's whose child also has Matt's syndrome wrote a moving piece on the use of the word "retard" a while before this movie was released. It is worth a read.

I have also come across this short but powerful clip that really captures the heart behind the protest of using the R-word.
http://www.youtube.com/watch?v=gM96e0yWjhI

Credit to the Arc of Virginia and the Arc of Northern Virginia, plus Blueberry Shoes Productions.

Matt's visit to Johannesburg

Two weeks ago we went up to Joburg for my cousin's wedding. Greg married beautiful Marcelle on a lovely sunny winter's day.

Matt enjoyed the plane trip. He played alot, smiled at the people, charmed the stewardesses and when he had had too much fun he slept on mom. It was a real pleasure travelling with him.

We stayed in the hotel the my cousin helps manage. He organised a stuning room for us - what a treat!! Lloyd was beside himself with glee when it came to the amazing breakfasts. And Matt fell in love with the swivel chair in the hotel room.

Can you find Lloyd in the beeeeeg bed?

It was also a wonderful opportunity for Matt to meet Jacqui's dad side of the family. He met his great grandmother who turned 90 this year. Though her body is frail her mind is active and her spirit is bright. She was delighted to meet Matt, but her little Maltese Poodle was quite put out by having someone the same size as her crawl around after her.

Matt also got to spend some fun time with Jacqui's aunt Scea (in the picture below) who taught him all about light switches, -how to push them up and down and how they make the lights go on and off. Matt was fascinated by this. Matt also got to meet Jacqui's aunt Marie, uncle Tom and cousins - Mark and Christopher (unfortunately we didn't get photos of them).

We also caught up with Kirsten, Jacqui's university friend.

And had a delicious Sunday lunch with Paul and Kath (radiantly pregant).

We were away for three night which was just long enough for it to feel like a little holiday and it was great to catch up with family and friends.

Retelling the Gecko story

Matt's physiotherapist read the story of how Matt enjoyed chewing on a gecko, and this inspired her to write the following:

Analysing the action learning experience, interpreting Matthew’s point of view during the process and reflecting this back to him

A present from his neuro-developmental physiotherapist Pam Hansford

Take a dekko at this Gecko!
Is it ‘lekker’? I really want to know
So, closer and closer I go –
thinking, should I grab it, stab it
or let it go?

Touch it, jab it
reach for it and nab it –
pop it in my mouth
(uncouth – but quite delectable!)
savour the flavour …………………

Oh no, no, I’ve been caught
so all my careful planning,
(organising & sequencing)
has come to naught!

Did I ever mention
that fascinating situations
fraught with possibility
are often brought
to a sudden frustrating halt
by other’s intervention -
Ruining all those special plans I wrought.

No wonder I yell when others direct me into new situations!

(I act upset when it seems as if I am being corrected before I’ve had a chance to do something wrong! It takes time to learn as we build our best base of support in partnership with others. We discover slowly that “beyond independence lies inter-dependence”. Together we can go further, faster achieving the best outcomes!)

As far as I can see, it’s only self-directed activity
that takes me (and everyone else incidentally)
just where I want to be!
But – luckily for me, those in my immediate vicinity
and wider community can (along with me) generally see
Infinite possibility ……………………

So watch this space for more news of me!

Finding Nemo

Yesterday we went to the memorial service of Nathan.

I was struck by how much love this young boy elicited from those who knew him. He does not fit society’s classic view of a “successful person” yet he managed to bring out more humanity, compassion and generosity in people than many of the world’s most accomplished leaders.

On our way home from the service we drove past some vineyards. As it is near the end of winter here, the vines were mostly bare – not a leaf in sight. I wondered if that was how Nathan’s parents were feeling now – empty, vulnerable, exposed and sore. I felt God reminding me that these vines will not always stand empty, but in a while when the weather warms they will start getting leaves, first one or two and eventually plenty. And then one day they will bear fruit again. I prayed that for Carina and Richard – that they will know their season of emptiness will not last forever, and though they may not be able to imagine it now, their lives will once again experience warmth, joy, fullness and even abundance. Not that they will forget Nathan and move on, but rather that his memory and spirit will be intertwined into their family’s healing, joy and life.

I have shared previously that I had not met Carina or her family, as we had only been connecting over the internet. On some level I felt so close to her and knew so much about her – well the important stuff - like how she felt when her son died. But on another level I knew so little about her – I had no idea what she looked like or what she did for a living. It was wonderful to finally meet her and Richard with their two sons – although I had pictured meeting them in happier circumstances.

This is a real back-to-front friendship: usually you get to know someone by what they look like, who are they friends with, what they do, what are their likes etc. And then only after months or years do you get the privilege of knowing their honest thoughts, opinions and prayers. But our God works in mysterious ways and even uses today’s’ technology to join his children’s hearts in friendship.

Carina had asked that we all wear red or orange to the service in memory of Nathan as these were the two colours that he could see best. You can imagine that it was a colourful memorial service. Nathan’s dad Richard had brought along Nathan’s favourite toy –

a bright orange, fluffy Nemo fish.

After the service when we met up with them, Richard gave our little Matt the Nemo fish. Matt gave it a big hug as though he sensed it was something special. My eyes still well up with tears at the thought that Carina and Richard would entrust Matt with their son’s special toy – what an honour and privilege.

Every time Matt plays with Nemo Nathan’s memory will live on in our home.

Grandpa's Poem

In memory of a new day in terms of Matt’s eating habits, his grandpa wrote the following poem:

You can dine in the aura of art deco
Or by waves with their murmuring echo
Or for a crucial event when flowers are sent, at the site of an old Roman Fresco.
So long as you know that the special today, is a squirming, delectable Gecko

- John Tooke

Gecko

Up until this week all Matt’s food had to pureed, with the exception of Simba Puffs and the occasional ginger biscuit. This week all has changed and it started with a gecko. On Tuesday I arrived home from work and Matt’s babysitter told me how she found him chewing on a gecko. Horror! She hastily removed it from his mouth to find that it was alive!! Double horror!




Later that day Matt begged for a bite of my sandwich. I knew his tummy was empty so if he vomited it wouldn’t be disaster. So hesitantly I let him have a bite. You could have knocked me over with a feather, as I watched him chew and swallow the bread, without gagging or vomiting. And then ask for another bite!








This has opened up a whole world of non-pureed food for Matt. Since Tuesday he has enjoyed some strawberry flavoured Rice Crispies and some butternut squash (cubed, not pureed!!!).
I am astounded.

It seems like this change has happened overnight. I am grateful to our Speech Therapist with all the advice and help she has given to help diminish Matt’s overactive gag reflex. It also seems as though something in Matt’s understanding has clicked – he now gets that he can eat things and chew things.

So my advice to all parents who have kids with feeding problems - just let them chew on a gecko and all problems will be solved. (JOKES)

To push or not to push

Today I read the blog of another parent who has a child with RTS. She was pondering how hard one should push one’s child in terms of therapy (especially if the child seems upset during the session).

I thought it would be helpful for me to process my current thoughts on this topic. I have observed Matt’s physiotherapist in action; as well discussed with her this issue of “pushing” a child. These are my current conclusions:

Our therapist does not seem to plan her session in stone, but rather adapts the activities based on Matt’s mood and interests in the session.

• In the beginning part of the session she does not push Matt, but rather engages him and lets him lead.
• She seems to recognize that Matt engages better with an activity when he has shown interest it first.
• She does believe that it is important to introduce new ideas and new activities to a child. However, since Matt usually gets upset with new ideas and new activities, she tends to only to introduce these once Matt is working comfortably.
• If Matt gets upset with a new idea she does not rescue him from the challenge immediately but talks him through it.
• Sometimes he finds the new task possible and he engages with it. Other times he remains upset - at this point she will take Matt to ring some beautiful sounding chimes that calm him.
• She does not force him to return to the upsetting activity, but rather engages him in an activity that he shows interest in. In future sessions she will return to the upsetting activity – and most times Matt is open to engaging with it because it is no longer new.

My personal feeling is that she has a good balance between letting Matt lead (and staying within his comfort zone) versus introducing him to new ideas (that he finds threatening but are vital to learn).

Rivers know this:

there is no hurry we shall get there some day.

-Winnie the Pooh

Nathan

Tonight my heart is very heavy and sore for a family that I have met over the internet. They live in South Africa in a town near ours. I have been following their journey of raising a child with severe special needs. I have written about him in a previous post. He died yesterday after a fight with pneumonia whilst still recovering from an anti-reflux operation.

His name is Nathan. He was 3 years and 3 days old.

I got to know him this year through his mother’s blog. Although I have not met this brave boy face to face, his life he has taught me some very important things:

All life is sacred and worth fighting for.

Children with challenges can draw out brilliant courage and compassion in their parents and other people.

We should not take any of our luxuries for granted – the simple luxuries of breathing, eating, and sitting up when we want.

We can never control what life throws our way so we should live with grateful hearts for every day that is given to us.

Today I honour Carina – a mother with a deep well of love and a fighting spirit
I pray God comforts her and her family during this season


Today I remember Nathan – a gift from God
I am sad I will never get to see him on this earth, but I rejoice knowing that he has found great freedom in his spiritual body and great joy in the warm arms of His Dad.

Gold Nuggets

These last 3 weeks have been tough. I am not sure what triggered it all off but I have been grieving what Matt isn’t and there have been some really low moments. I feel like for now this season of grieving has come to an end and I have let go of some hopes and dreams and I feel like I can embrace Matt for who he is. I have no doubt that in months and years to come more grieving will be required of me.

I am delighted to discover that I have gained some gold nuggets through this time of trial.

Gold nugget: I have started to be authentic and open about my pain with my broader group of friends.

Gold nugget: Many of my friends have breathed a sigh of relief at my openness rather than feeling awkward and running from me (as I had half expected)

Gold nugget: I realized that many of my friends have been wanting to reach out to me but didn’t know how. In the past I only shared honestly about Matt is people asked directly for fear of inflicting people with sharing they did not want. My holding back meant others held back – we are now finding each other. And it’s good.

Gold nugget: I learnt that if I am putting on a brave face it denies people the opportunity to encourage, love and comfort me. I am learning to recognize my need and to express that need. I have been blown away by people’s genuine care.

With all these gold nuggets I feel RICH and BLESSED.

And ironically, it took a time of deep pain and grieving to discover these gifts.

In raising my children,

I have lost my mind but found my soul.

-Lisa T. Shepherd

Those "ow" moments

I have been thinking a lot about how to manage my interactions with my friends who have kids. Often when I am visiting or chatting with them something will be said that will remind me that Matt is different and cannot do what their kids can do. And that hurts. Up until now I have kept those feelings to myself - I have not been sure how to talk about it without making them feel bad, and usually the feelings are so strong that I am scared that if I do talk about it in that moment I might explode my pain uncontrollably over everyone (not a pretty sight).

I recognise that in each stage of life I am going to have to deal with the fact that Matt's journey is different. So I am sure that those painful feelings are not just going to go away forever. Sometimes I think the easy option is to just withdraw from those friends who have said or done things that hurt me. But I'm sure they won't want that (and then I will have fewer and fewer friends - which I don't want). So I need a strategy that will allow me to be real and genuine about my struggles without blaming or overwhelming my friends. I don't want them to feel like they can't share anything with me or that they can't celebrate their kids milestones with me.

A friend of mine who has been single for many years (but now recently fallen deeply in love) shared with me how she used to cope when her single friends found their Mr Right whilst she was still alone. She recognised that it was a hard situation that could not be escaped. She would take responsibilty for her feelings, but she would chat to her friends if their actions or words were insensitive.

This has given me a strategy to manage those "ow" moments.

ONE I want to chat to my friends and acknowledge that Matt's journey is different (but not less valued) so there will be times when (though it is no-ones fault) I will feel sad. There is no escaping this fact. These will be tough moments that our friendship will need to endure.

TWO I commit myself to taking responsibility for the negative feelings and reactions I have that are due to me being OVERSENSITIVE to what my friends my do or say. God and I will work on those feelings and reactions. I will not make this anyone else's baggage.

THREE I will however share with my friends when I feel they have done or said something that is INSENSITIVE to Matt or his journey. I choose not to withdraw resentfully in silence, but rather gently share with them the impact of their words or deeds. And I will choose to forgive quickly.

This is still very much work in progress. I am yet to take action. But I feel hopeful that being proactive about dealing with the "ow" moments can deepen my friendships and free me from carrying around unnecessary pain and resentment.

I am humbled by Matt

Matthew had physiotherapy this morning. Pam is the name of his physio and her therapy rooms are very open plan and those waiting for their session sit amongst some of those who are having therapy. Pam introduces everyone so that all are comfortable with each other. Matt quite enjoys being able to have therapy amongst others. We usual don't have physio on Wednesdays so we met some new faces, including a 40-something year old man who had some type of disability - I was not sure what. He seemed to have a friendly face, he walked slowly with a limp, and seemed to find it hard to talk.

I was surprised by my reaction to him - I felt awkward and uncertain as to how I should approach him. Here I am a mom who is raising a child with special needs that feels awkward around an adult with special needs. I realised I have a lot more to learn.

At the end our session Matt and I said goodbye to this gentleman - he reached out and shook my hand. Matt was in my arms - he smiled the broadest smile ever and waved goodbye. The man smiled back - a warm beautiful smile - and waved. Matt chuckled. Something special was being communicated between the two of them. My awkwardness dissolved - I felt comfortable being there. Matt showed me how to relax, to smile, to reach out, to just be me and then to connect. Thank you Matt!

Ginger Biscuit

This afternoon as I was settling down to a nice cup of tea with a ginger biscuit, Matt came crawling over. He was showing great interest in my biscuit. I was nervous to let him take it from me as he usually ends up gagging on anything that isn’t pureed. But I also want to let him explore new tastes and textures. Hesitantly I handed him the biscuit and sat waiting anxiously for the inevitable gag and vomit. Matt seemed to like the ginger taste and started chewing with great determination. I watched in amazement as he chewed and chewed. The biscuit got soggy and he chewed some more. He wiped the biscuit on our coffee table, and chewed, smeared the biscuit of the floor, and chewed some more, then dropped it on the couch, picked it up and chewed again. I know most moms would worry about the mess but I didn’t care one bit. I was just thrilled that there he was munching on a biscuit and HE WAS NOT GAGGING.

A Sunny Winters Day in Cape Town

Although Cape Town's winters do not get as cold as other parts of the world, they are very wet. So when a sunny day arrives one has to make the best of it. Two Sundays ago was just such a day so we decided to visit some of our favourite places in Cape Town.

My day of extremes

This morning I read a blog of a parent who has a child with a severe disability. This precious boy has no muscle tone (so he cannot suck, swallow, or lift his head), he can’t see well, is non-verbal, suffers with seizures and frequently aspirates. I was VERY humbled as I read her blog. I was amazed at her strength and courage, even though she sometimes feels that she has neither. I felt that the issues we faced with our Matt were very small in comparison with the challenges that she faced. I was deeply grateful for Matt and that in the light of this other little boy’s story, our lives seem easily manageable.

This afternoon we popped in to visit our good friends who have an 11 month old boy. We had not seen them for a while and I was looking forward to reconnecting. As we walked into their home we were greeted by their precious boy who was boldly walking. I was crushed. The old enemies - hurt, disappointment and sadness ambushed me. It took all my strength to hold it together and greet our friends. I am not jealous of their child, in fact, I was thrilled that he had started walking. Yet it reminded me that Matt is…different, that Matt’s life journey is going to be so different, and that this journey is hard and in some ways is always going to be hard.

I am still trying to make sense of all of this – how I can feel so positive about Matt when I compare my life to one person, and feel so down when I compare our lives to another. I know in my heart that comparing is Bad and Very Unhelpful. Most days I am safely able to interact with others without Comparing, but today I wasn’t.

Grandparents come to visit

During the last week of June Lloyd's folks came to visit. Matt enjoyed bonding with them. Here are some pictures showing the fun that was had:

A shared laugh. Grandpa showing Matt the plants at Kirstenbosch.

Matt taught Granny how to spin a wooden ladybird. Here he is inspecting her technique to ensure she learnt it correctly.

Matt kissing Winnie the Pooh

After lots of fun, its time for bed. Grandpa says Goodnight to cute Matt.

Celebration List

A while ago I felt God reminding me that I am to be a "praise-singer" for Matt, I'm to be his biggest fan, I'm to celebrate his triumphs big and small. This way I will not get caught up in stressing about all the things he can't do (like eating anything that isn't pureed) or I wish he was doing (like walking) or I wonder if he will ever do (like talking).

So I started by sticking up a Celebration List on my kitchen wall. On this list I write down all the things I celebrate. I try to do this every day, but sometimes I forget. Since Matt is turning 21 months tomorrow I thought it would be appropriate to share what I have written on my Celebration List in the last month...

Matt threw a ball for the first time.

Matt fed himself with a spoon for the first time (and then threw the spoon across the room - with much glee).

Matt opened the flaps in his book on his own.

Matt smiles at people and seems curious about them.

Matt ate his first FLING (a baked maize chip that is puffy so it melts easily in your mouth - but this is a HUGE achievement for Matt).

Matt initiated an interaction with a friend (whilst we were at church).

Matt drank 3 sips of thickened liquid from a normal cup.

Matt went shopping with me and wanted to touch and feel everything I put in the trolley.

Matt showed interest in my friends cat (up until then it has seemed like he hasn't noticed that cats exist).

Through Matt we have met many inspiring people that we would not have otherwise met.

Matt has started communicating that he wants more of an activity through body language.

Matt can cruise along the kitchen cupboards

Matt has learnt to wave

Matt has learnt that people wave when they say bye-bye

Matt has started drinking from his sippy cup by himself! (Up until now he has relied on me tipping the sippy cup into his mouth so he could drink from it).

GOOD WORK MATT. I CELEBRATE YOU!

Book Review: So Now What?

So Now What? Winning over depression and loving a boy with special needs. By Celeste Smith

This short but moving book is written by a mother of a boy Mitchy who has Cerebral Palsy and a measure of autism. I was touched by how honest Celeste was about the many struggles that she faced – from battling depression; to dealing with the grief of having a child whose life does not fit into the “normal” category; to managing the practical challenges of helping him develop. She shares thoughtful insights on interesting topics, such as: how to prepare her son to accept his disability; disciplining a disabled child; and the impact having a disabled brother/sister has on the siblings. I found I could glean many helpful hints that will enhance my parenting as well as my coping skills. Through out the book there is a thread of hope (even in the hardest times) and that hope is Jesus. Celeste weaves her faith into all aspects of raising her boy. This hope and faith ensures that the reader finishes the book with a real sense of celebration at the life of Mitchy.

I am sad to conclude this book review with the news that Mitchy died this last month of a drowning accident. I am broken by this news as I feel like to have known Mitchy personally after reading his story. My deepest prayers go out to his parents and siblings in this time.

(This book is published by the author in South Africa, 2008)

I love this face!!

The things Matt gets up to

Here are some fun Matt moments that we managed to capture on camera. These show that raising a kid with special needs isn't always a tough, uphill battle. Don't get me wrong, we still have our challenges and there are tough days. But as we learn to not to take life too seriously, and to enjoy each day for what it brings, then we find there are actually lots of FUN moments to be had...

There are books to be read and flaps to be lifted!

There is toilet paper to be pulled and torn and scrunched up in a deliciously fun way!

There are trucks to ride, well we are not riding them on our own yet so mom has to push.

But it is just the most fun to be pushed!!!

Book Review: You are Special

You are Special. By Max Lucado

Max Lucado has created a world of Wemmicks (little wooden people) and this story is about a character called Punchinello. Wemmicks give one another stars if they have done something good or are something good (like being pretty). If they do something that they consider bad (like being clumsy or having chipped paint) then they give each other grey dots. Poor Punchinello was always getting grey dots because he wasn’t seen as good enough by the other Wemmicks. This story really connects with me because I often care too much about what others think and I fear for Matt that he will grow up feeling not good enough because he is not the same as “normal” children. I cry every time I read how Punchinello’s understanding of himself changes when he meets the carpenter who made him – Eli. He tells Punchinello: “All that matters is what I think. And I think you are pretty special…because you are mine.” He also tells Punchinello why the Wemmicks’ stickers don’t stick on another character called Lucia, Eli explains “Because she has decided that what I think is more important than what others think. The stickers only stick if you let them.” What an invitation by My Maker for me to take more seriously what He thinks about Matt, than what others may think. I find this book ministers to me every time I read it to Matt. Highly recommended for every child (and adult).

To see the Amazon webpage for this book click here

Prayer Party

Last week Saturday we had our first PRAYER PARTY for Matt. And what is a prayer party? – it is a fun way of bringing friends and family together to pray for Matt. This one was at breakfast time so the prayer was accompanied by muffins and a good cup of tea or coffee. The next one may be an afternoon prayer party with cakes and biscuits. Or an evening cheese and wine.

There are 2 main purposes for these Prayer Parties. Firstly we have been feeling that we need to be more intentional about praying for Matt, and to get prayer for ourselves. We must be honest and admit that we still have some questions about prayer – why pray if God really knows our needs? How does prayer work…does it change God’s mind? And surely God is committed to Matt’s best anyway so why does He need us to ask for Matt’s best? Even though we have these uncertainties we know that Jesus prayed and we are keen to follow His example. We trust that He will teach us more about prayer as we journey down this road.

Secondly we felt that we needed to allow our friends and family to support us – to hear our struggles; but also to share in our celebrations in terms of raising Matt. We realize that sometimes we may come across as though we are doing fine and coping all the time. We don’t always find it easy to share our challenges – especially when we are in social settings it is sometimes a bit awkward to talk about serious (often tear-producing) life issues. So the Prayer Parties give us the space to be real about the good and the hard things we face when raising Matt.

This first Prayer Party was so refreshing and comforting for us. The actual prayer time
was a bit chaotic because there were also 3 exuberant toddlers and a cute new-born joining in the party. But in the midst of the muffins being thrown on the floor, the toys being fought over, the cats being chased – not to mention the havoc the 3 toddlers also caused :) - we felt God’s rich blessing and presence.

Red shoes

This last month we bought Matt some shoes that will help him to stand and soon to walk. Our physiotherapist recommended them. They are bright red with cute yellow laces - very funky. The shoes support his ankles well so he feel more stable. After a day or so of being unsure as to what were on his feet, he has really taken to them. He even sits still for me to put them on his feet. I think he enjoys wearing them because they certainly have helped him feel more confident in standing.

The greatest of humanity’s riches does not consist in money or possessions but in loving and united hearts, the strong supporting the weak while the weak call forth the true humanity of the strong as they help them discover their hearts and their compassion.

-Jean Vanier, Our Journey Home, p. 200

Blessed be His name

On thursday night my work colleague and friend lost his child, Anele. Anele suffered a very severe asthma attack and died as his parents tried to race him to the hospital. No parent is made to endure this. My heart aches for them. In times like these I am drawn to the words of the following song - where the fullness of life and the sorrows of this world are acknowledged. There is hope that God is still God...in the good AND in the heartbeaking times. I have sung this song many times in my dark moments, today I sing it for my friend and his wife and their children.

Blessed be Your name
In the land that is plentiful
Where your streams of abundance flow
Blessed be Your name

Blessed be Your name
When I’m found in the desert place
Though I walk through the wilderness
Blessed be Your name

Every blessing You pour out
I’ll turn back to praise
When the darkness closes in, Lord,
Still I will say
Blessed be the name of the Lord
Blessed be Your name
Blessed be of the Lord
Blessed be Your glorious name

Blessed be Your name
When the sun’s shining down on me
When the world’s all as it should be
Blessed be Your name

Blessed be Your name
On the road marked with suffering
Though there’s pain in the offering
Blessed be Your name

Every blessing You pour out
I’ll turn back to praise
When the darkness closes in, Lord,
Still I will say
Blessed be the name of the Lord
Blessed be Your name
Blessed be of the Lord
Blessed be Your glorious name

You give and take away
You give and take away
My heart will choose to say
Lord blessed be Your name

Every blessing You pour out
I’ll turn back to praise
When the darkness closes in Lord
Still I will say
Blessed be the name of the Lord
Blessed be Your name
Blessed be of the Lord
Blessed be Your glorious name

(Beth Redman and Matt Redman)

Learnings

We have recently joined an internet based chat site that functions as a support group for parents of children with RTS. I have found the topics of discussion interesting and the archives of previous topics very helpful.

Last week I posted my first question to the group. I wanted to know about other people’s experience of how RTS kids learn new things (like learning to drink from a sippy cup or getting used to new food textures) - either through the parent using repetition on an ongoing basis or through the parent waiting until the child seems ready and then introducing the new thing. I was so blessed by the response that I got. Over twelve people responded – most giving very detailed replies. In addition to sharing their thoughts on how their kids learn, they also gave many hints and tips regarding sippy cups and food textures. All are parents of one or more kids - which is time consuming enough. Yet they found time to share about their own learnings and experiences. I am thrilled to be part of such a supportive and generous group.

This is what I have learnt from their responses:

• Each RTS kid is an individual so what works for one may not work for another.
• RTS kids do need LOADS and LOADS of repetitions to learn a new thing.
• Trial and error is a good tool in terms of finding out what works best with your child e.g. finding the best sippy cup.
• As a parent you may feel that your child will never get there but they WILL – in their own time.
• Your child will not learn when upset or stressed out so keep learning experiences fun.
• Don’t force him to do something if he shows that doesn’t want to.
• Be inventive – find different ways of creating learning experiences.
• Acknowledge that transitions (e.g. from bottle to sippy cup) are hard for your child.
• Learning is not always a steady upward curve there will be seasons of plateau but then your child will all of a sudden move up a skill level.
• It is a challenge to find the balance between overestimating and underestimating your child. That is OK, keep going.
• A parent needs to know what she can do and what she can’t do. She needs to know when to bring in help from a therapist or someone else.

Strange to think I have never met these fellow travelers on the RTS road, yet I feel so close to them.

Wakey wakey

During the last week our winter weather has arrived. Matt seems unable to sleep with his blanket on him at night, so to keep him warm I put on a nice warm fleecy baby-grow over his usual pyjamas. The last few mornings Matt wakes up and calls me (by crying) into his room and this is the adorable sight that greets me.