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.

Matt learns to climb the staircase

The washing machine

The Washing Machine is to Matt what Big Sceen Movies are to us adults

9th April 2008

Dear Speech Therapist

Thank you for the assessment report that you and your students carried out on our little Matthew. We so appreciate the time and the effort that was given at no charge and we really do look forward to ongoing partnership with you. I recognize your (and your students) deep commitment to helping children reach their full potential in communication.

I want to share with you a little bit of my experience of being a mother of a child who has speech delay. In so doing I will also comment on my experience of the assessment report which may be of value to you as you seek to empower the parents of the children with whom you work.

Having a child with delay can be a very hurtful experience whilst also being an enormous privilege. When I was first told that Matt had a syndrome and would be delayed, I did not know what that meant. I feared the worst – that he would never be able to do anything, never be able to connect with me, never be able to feel love or express love. As he has grown and developed, each milestone is like the BIGGEST gift and each is a REASON TO REJOICE. This is the privilege – to watch the miracle unfold, to see him become all he can be.

When I am with him, alone, we have so much fun. I don’t see him as delayed or different. He is my Matt and I am helping him to discover the next step in life – whatever that may be…to crawl, to taste something new, or to learn what ‘clap’ means. I don’t feel sad or discouraged when it is just him and me.

Your assessment report was positive in that it helped me recognize that certain of his behaviours do indicate that he is moving towards communication. This was encouraging. I also found that the recommendations empowered me with information about what I can do to help him reach his potential.

The hurtful part of raising a child who has delay happens when we are around other children of similar age to Matt. There the delay becomes so apparent. No one can deny that he is different, that he is not the same. My heart breaks when I see what other children his age can do. I have to fight back tears. I have to muster all my energy to counter the discouraging thoughts that tell me “Matt is not good enough, Matt is a failure, Matt is so far behind and is therefore worth less”.

My only weapon against this discouragement is to not compare Matt. I have to choose, every time I see another baby or toddler, to not compare. I actively speak to myself saying “Matt is doing fine. There is no point in comparing my Matt who has part of one of his chromosomes missing, with a child who has all his chromosomes. If I make this comparison then I may as well compare a child who has an amputated leg with one who has full use of his leg and expect them to run the same distance.” This is what I tell myself – often, if not everyday.

In the light of my ongoing, daily battle to NOT COMPARE Matt, you can imagine the discouragement I felt when I read the following in your assessment report:

“Mathew was placed in the 3-6 month age group in terms of communicative ability. He is emerging at a 6-9 month level.”

I fully recognized that your report was not intended to discourage me, but I found the comparison with normal unhelpful and disheartening. I am aware of his delay, but I am equally aware of how helpless I am in terms of fixing him and somehow making him “normal”. So even though it is standard practice in the medical world, I would rather we don’t even compare him to “normal”. I recognize that as a speech therapist the age related milestones provide you with a bench mark. My recommendation to all therapists would be that they note this in their own files, but omit it when reporting to parents.

I was so encouraged reading that book you recommended “It takes two to talk” (Pepper and Weitzman) because the authors were able to outline the stages of communication development (Discovers, Communicators, First Word Users, Combiners - see page 4) without linking it to age. I was able to plot which stage Matt was in and then get input on what I could do to help him move on to the next stage. That was empowering and encouraging.

I am certain that, similar to my profession of social work, speech therapists do not work with a child in isolation but spend time and effort in engaging the parent and building partnership with the parent. I am hoping that my perspective expressed in this letter can be used to help you and your speech therapy students to have a deeper understanding of the impact of assessments, and to word assessments in such a way that harnesses hope and action from the parent, rather than unintentionally inflicting discouragement and despair. I use the word unintentionally with great sincerity because I have NO DOUBT that you and your student’s motives were only to encourage and empower us as parents.

I really look forward to your response to this letter and to our ongoing working relationship.

Kind regards,

Jacqui

Small steps versus mini-steps

About 2 weeks ago we met with Matt’s speech therapist who has experience with children who have feeding difficulties. It was a helpful session where she was able to point out what we need to do to get Matt to tolerate texture and to learn to chew. First: use a baby tooth brush (it looks more like a small stick with a textured rubber top) to rub Matt’s gums. Second: use the Lateral Feeding Technique of popping a small bit of very chewable food into Matt’s cheek between his gums thereby helping Matt to learn how to chew whilst avoiding the gag sensitive middle and back part of the mouth. “Easy!” I thought – “I can do this”.

Armed with these steps I returned home to put them into action immediately. I bought a baby tooth brush and tried to rub Matt’s gums – NOT A CHANCE. He wriggled out of my reach, pushed the brush away whilst vigorously turning his face from me. He would not let me near his mouth regardless of how much I begged, pleaded, forced, or cajoled.
Later we tried the Lateral Feeding Technique – as soon as my finger slid in along Matt’s gums he GAGGED and proceeded to VOMIT all food that he had consumed in the previous 5 hours.

I am learning that what seems like a small step is actually a big step. I have to find the tiny mini-steps between where Matt is now and that “small step”. So our first mini step was to make friends with the toothbrush and play with it. The second mini step was to let Matt put it in his mouth. He was a lot more welcoming of the toothbrush when it was on his terms. Third is to dip this toothbrush in his favourite pureed fruit and offer it to him as if it were a spoon. Then he is very eager to endure it in his mouth, once even allowing me to slide it along the side of his gum. As for the Lateral Feeding, I’ve put that on hold until he can better tolerate foreign objects in his mouth. I’m hoping the toothbrush process will help with that.

We are returning to the Speech Therapist on Monday where she is eager to help me work out other potential mini-steps that will slowly move us towards that first small step.

Being who God made him to be

On Sunday Matt and I went to church without Lloyd as he was working at the hospital. Our church is very relaxed and most of us with toddlers sit at the back of the church on the floor where the kids can roam and play without disturbing the rest of the congregation too much.

We were joined by a lady with whom I am in the very early stages of friendship. She is in her late 20s, walks with crutches and has a severe chronic illness. She has a gentle spirit and loves children. She sat down next to me and started to interact with Matt. I noticed how stressed she was looking but couldn’t really ask her about it as the service had started. Although Matt does not know her well, he warmed to her immediately. His warm smile encouraged her to start playing with him. Soon she was lying on her back, Matt sitting on her tummy staring intently into her face. Every time she lifted him in the air he would giggle with delight. I left them to play and focused on the worship. About 10 minutes later she and Matt had finished playing, and Matt made his way back to me. I looked up at my friend and I was surprised to see how calm and serene she was looking. No more strain in her facial muscles, only peace. As Matt crawled towards me I realized that his interaction with her had been more than play. Matt had been ministering to her – by him just being who God had made him to be. In that moment I felt so privileged to by Matt’s mother.

"Yet it did not fall"

It is not that I have become a pessimist, it is just that I am realizing more and more that there are going to be serious times of struggle and challenges in EVERY PERSON’S LIFE.

In the last 2 weeks a friend of ours was diagnosed with cancer and other friends lost their 11 day old child. And that is just in my little friendship circle. All around the world people are facing SERIOUS trials.

The crazy thing is, is that the world we live in doesn’t seem to recognize this. All the adverts and media tell us that we should focus on getting more stuff, on looking better on the outside and on saving money for ourselves and our future. But what about building a good inner CHARACTER that can weather the storms of life? What about digging deep roots into our Loving God who will never give way and never change and never leave? That is what we all should be doing so that when that day of trouble arrives, we don’t break down, we don’t lose it, we don’t fall apart. Rather we endure the pain, disappointment, and loss with healthy grieving, strength and dignity. That instead of being crushed by those incidents we become stronger, more compassionate and more grateful for the good we have in the midst of the trials we face.

Jesus: "Therefore everyone who hears these words of mine and puts them into practice is like a wise man who built his house on the rock. The rain came down, the streams rose, and the winds blew and beat against that house; yet it did not fall, because it had its foundation on the rock.” Matthew 7: 24-25

He understands me

Two weeks ago Matt had his first assessment by a Speech Therapist. (Actually it was by 3 final year Speech Therapy students in one of those observation rooms with one-way mirrors. They were being supervised by a well respected Speech Therapist – in case you start wondering what we are exposing our little Matt to.) The students were helpful, but they did ask us quite a few questions about Matt’s understanding and his ability to express himself. It got me thinking. I was not really, really sure that Matt understood me. Sometimes when you asked him “Where is dad?” would he turn to Lloyd, but not always. Sometimes he would crawl towards me when I said “Come Matt”, but not always. So I thought he might understand me, but was not 100% convinced. I longed for the day when I would know for sure that he understood something I said.

We have been trying to teach Matt to clap. Whenever we clap he puts his hands over our hands and enjoys us doing the clapping, rather than him mimicking us by clapping on his own. This last week I was playing with Matt on our bed. He was lying on his back and I leaning over him, tickling and kissing him. I started clapping my hands and instead of putting his hands on mine, he clapped on his own! I was so excited I said “Matt more clap” and then he clapped again. I wondered – does he understand what I am saying? So I said again “Matt more clap” and he clapped again! I thought – this is could be coincidence let me ask one more time to see if he really understands. Now at this point he was getting a bit bored so he was turning onto his tummy getting ready to crawl away. But I needed to see if he understood me so I said for a 3rd time “Matt more clap” and he turned around, faced me, looked me in the eyes and clapped!!!!!!! I squealed with delight. Tears streaming down my face I hugged him. He understands me.

Like water in a desert place

I didn’t even realize how alone I had been feeling. I had not recognized that there was a deep sense of isolation in my soul – I know that my life changed when Matt was born. I know that my path has been different to those of my friends who also became mothers. I know that my joys and sorrows are not all the same as theirs. I know all that, but I did not realize how much it was chipping away at me, at my sense of being, at my sense of belonging.

But God knew. And I believe that it was by His leading that I came across the blog sites of 4 mothers who have children with RTS. I have looked at the RTS websites in the past and seen that others are also travelling along our road, however it does not compare to reading a blog where a person shares the every day, as well as the profound thoughts and experiences of parenting a child with RTS. I spent a few days reading each blog from the beginning to the end. I wept as I connected with their pain and their joy. It was in those moments that I found sameness and belonging – even though continents separate us. Their stories were like sweet water to my lonely, dry, and thirsty soul. I thank God for bringing me upon their path. I thank God for technology like internet and blogs. I thank God for revealing my loneliness but in the same breath blessing me with belonging.

My prayer is to find a way to connect with those in South Africa who have children with RTS. Statistically they must exist. I look forward to meeting them one day.

The cousins

In February we spent two weeks in Pietermartizburg on holiday. Matt and his cousins - Jonanthan and Christopher - got to meet each other for the first time. They really seemed to enjoy getting to know one another.

I know my folks want me to eat more, but this is ridiculous!

My Name is I AM

I was regretting the past
And fearing the future.
Suddenly my Lord was speaking to me:
"My name is I AM"
He paused
I waited. He continued,
"When you live in the past
with its mistakes and regrets,
It is hard. I am not there.
My name is not I WAS.
When you live in the future,
With its problems and fears,
It is hard. I am not there.
My name is not I WILL BEE.
When you live in this moment
it is not hard. I am here.
My name is I AM."

By Helen Mallicoat.

Shared by Annemie.

He crawls!!!

In January Matt had the splints removed from his thumbs which meant he could once again start using his hands in his quest to crawl. However it took him over a week to build up confidence to put weight on his hands again.

Once he realised that his hands were truly pain free he has been slowly growing in boldness in his crawling. First he was only crawling a few steps. Now he happily explores a whole room (keeping us on our toes) and he has even started pulling himself up into standing position. He loves moving around. He looks so pleased with himself and his new found independence.

Who loves plums?

Welcome to Holland

When I first read this story I was so struck by how accurately it described what we were going through. Thank you Emily Perl Kingsley for sharing this beautiful story.

Welcome to Holland by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you are going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, 'Welcome to Holland'

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy then Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things... about Holland.

Celebrating a vomit free day!

Matt vomits on average once a day, that’s over 465 vomits so far!

Matt has vomited on me, on his dad, on the couch, on the floor, in his bed, in our bed, in his high chair, in the bath, in church, in the pram, in the car, at our friend’s house, at the shop…

Matt has reflux problems – this means the food from his tummy sometimes comes back up his oesophagus. Add to this a sensitive gag reflex. And the result: VOMITS! When the reflux tickles the back of his throat he starts coughing, gagging and inevitably vomiting. And when he starts vomiting he can’t stop until he has cleared his tummy. When he has a cold, where the flem causes coughing, then the vomiting worsens.

Little Matt is a real fighter. You can see that he is uncomfortable during the vomiting, but afterwards he just gets on with life – playing, eating (again!), sleeping – whatever he was up to before the vomit happened.

Some days it really gets me down, especially as we are concerned about Matt’s weight. Other days its fine, we just get on with cleaning up the mess and feeding again.

I have found that one way of coping with an ongoing problem like this is to focus more on the vomit-free days, than on the vomit days. So in our house a vomit-free day is like a birthday or Christmas – greatly anticipated and greatly celebrated!

Water Play

Out come the wires

Matt showed his courage again yesterday when the wires were removed from his thumbs. It was a simple procedure that took place in the doctor's office. Matt didn't get anaesthetic, only oral pain-killers. Matt sat on the bed and the surgeon used a pair of pliers (literally) to pull out the wires. He cried a lot at the time, but within ten minutes he was fine. Resilient!

The holes have closed up and this evening Matt had his first bath in 3 and a half weeks. Matt still needs to wear his splints for another 3 weeks.

Look at these loooong things that were in his little hands!

Bandages removed - 3rd December 2007

After Matt's bandages were removed, tiny splints were made for his fingers. We were so impressed with the Occupational Therapist's ability to create these delicate, but sturdy, thumb supports.

Boxing gloves?

Matthew is initially confused by the big bandages on his hands.

However it didn't take him long to adapt and to find ways to still pick-up and play with his favourite toys.

Matthew's Surgery

Matthew was born with angled thumbs and undescended testes, both typical of his syndrome. On the 26th November he underwent surgery to have these two issues corrected.

The orthopaedic surgeon, working under a microscope, cut into the bones in the thumbs and straightened them. He put wires down the middle of the thumb bones to fix them in place.

The urologist found Matt's testes in his groin area and brought them down into his scrotum.

Amazing craftsmanship!!!


Waiting for surgery, unaware that his life is about to change!












Here is the brave warrior after he emerged from theatre...

Celebrating one year of Physio!!

Matt’s first visit from his physiotherapist, Pamela K Hansford, was on the 24th November 2006 when she came to our home. Since that time he has had regular sessions at her at practice. She has helped him make great progress. This post is to celebrate one year of physiotherapy – of stabilizing, stretching, and strengthening.

February 2007

March 2007

June 2007

November 2007

For a cellphone I will do anything...even try to crawl!