Free from fear

I have learnt an important lesson about how my faith can influence my parenting. For a week or so Matt has been slowly been trying find his confidence after his fall. We have been trying to help Matt build his self confidence by focusing his attention on tasks that he has mastery over, rather than introducing new challenges. Despite this Matt still appeared to be very fearful of trying to stand or walk.

On Friday I was leading a bible study which focused on fear. We learnt that fear is not from God, in fact God tells us not to fear. We learnt Jesus can truly break the power of fear in our lives, and how instead we can live with faith, courage, strength and boldness despite our circumstances. That evening when I was putting Matt to sleep I felt the Holy Spirit nudge me – “Matt is living in fear, and fear is not God’s plan for him. Pray for him – just as you prayed for yourself this morning”. And I did just that – I prayed that Jesus would set Matt free from fear, and instead fill him with courage and boldness knowing that Jesus was holding his hand. It was a most special moment where I truly experienced the presence of God.

Over the weekend we noticed that Matt was more willing to try to stand. He even enjoyed some “fall walking” – this is when Lloyd and I sit a meter apart and Matt walks from one to the other, however his walking is more like falling forward with feet moving quickly to catch up with is body. “Fall walking” requires fearlessness as one must feel out of control. At his physiotherapy session on Monday he was boldly trying new activities and enjoying more challenging tasks.

I am thrilled to see Matt embracing challenges with courage. I am glad he has found his self confidence. I am also humbled and joyful that God can be such a source of support for us in our parenting. I am inspired to be more intentional about praying for Matt so that he can become all the person that God has created him to be.

Here are some pics of Matt bravely standing and then "fall walking" to his dad.

For I am the Lord, your God, who takes hold of your right hand and says to you, "Do not fear, I will help you."

Isaiah 41: 13

Where in the world?

It has been just over a year since we started Matthew’s blog. What initially started as a therapeutic canvas on which to process our thoughts and feelings has become so much more. Friends and family can keep up to date with the latest in Matthew’s life and our journey with him. And we have made many blog-buddies: families who also have children with RTS – who share the same struggles and fears and joys and above all just understand. I am really proud of Jacqui – the main contributor– who has blossomed in her writing skills and I know her words and wisdom and wit have touched many.

Below is the map of the visitors to the blog for the first year – as someone who loves maps, I am intrigued and surprised by the distribution of the dots and would love for some of the people who visit to let us know who they are, and how they stumbled across our site hosted down here on the tip of Africa.
Posted by Lloyd.

Humpty Dumpty had a great fall

Matt was being really brave and stood all by himself. He literally was all by himself because I was on the other side of the lounge. (Up until then he would only stand when he was safely within my reach as he has not learnt how to sit down once standing) I turned to see him standing proudly and then slowly fall backwards - bashing his head on the TV cabinet and front teeth going into his lips. Tears, screams, blood, hugs! We were both quite traumatised by this event - last week Thursday.

Since then he has not tried to stand again, even when mom or dad are around.

His confidence is gone!

What a big role self confidence plays. I know that Matt can stand, he's already succeeded. His body - his muscles, his bones, his balance - is all there, ready to stand. Yet this thing of confidence in self is so key. You hear people talking about "building up young people's self confidence" and now I truly get why it is so vital. One can have all the resources in the world, but if one doesn't have self confidence one may as well have nothing.

My prayer is that we as parents would always be more passionate to help Matt see his strengths rather than focus on his challenges.

Hope for the future

A couple of nights ago we listened to a CD that my brother had given me months back. He had heard this talk on our local Christian radio station and had ordered it for me. It was entitled VICTORIOUS LIVING. Now I was expecting a well-known Christian leader to give us the “5 steps to victory” or something similar (yawn – I don’t do steps, but that’s another story). I was completely blown away when the hosts introduced the speaker as some one who had cerebral palsy. His name is David Ring. As he started talking I struggled to follow because he is not able to fully pronounce all his words, but soon my ears adapted. He shared his life story – filled with tragedy of losing both his parents and experiencing much rejection. Yet as a teenager he discovered that God really loved him despite everything – and this changed his whole life. It’s didn’t take away his cerebral palsy but it meant that the cerebral palsy was not going to limit him. Today he is an evangelist – he has spoken at thousands of gatherings, encouraging and challenging people to live their lives to the full.

I was blown away.

I was blown away that God could truly use David, with cerebral palsy, in such a dramatic way. This is something that I have wanted to believe in for Matt. Not that he necessarily becomes an evangelist travelling the continent, but that God has plans and purposes for his life, regardless of his medical diagnosis. Now I am convinced of this in the deepest part of my soul.

I was blown away by how God provided for David even when his mother died. This is my greatest fear – that I would die and no-one will love Matt the way that I can. But the truth is that God loves Matt more than I do and He will provide. That fear in me was quenched as I listened to David share about God’s faithfulness to him.

I was blown away by how God did for David more than any one could think of imagine. In fact his family had told him that he mustn’t even think of marriage because no-one will want to marry him. Today David is happily married with 4 children! I felt a deep challenge that my love for Matt must never become a cage (even though I want to protect him), but rather my love should be a springboard – launching him into all that God has for him, and all that God has created him to be.

I was blown away by the hope for the future that God has restored in my heart. Up until hearing David talk I have been dealing with my fear of the future by avoiding it. You must understand that when you have a child with special needs the future is a Very Scary Place. In my mind I imagined a big iron door between me and the future – I refused to contemplate it, telling myself that “I will deal with it when I get there”. That is how I coped, that is how I managed to maintain joy in the present. To some degree that was helpful, but avoiding the fear is not truly being free from it. Through David’s testimony I felt God lift up that iron door and invite me to look to the future with hope. I was still to remain in the present, but no longer hide from the future and the fears that lurk there. I feel remarkably freed by this – my fear has been replaced by hope.

After the talk finished I googled David Ring – you can check out his website by clicking here. I see he has published a book called Just As I Am. I’m going to try get myself a copy, I suspect it will make an excellent read.

He stands

Yesterday Matt stood on his own, without holding onto anyone, not supported AT ALL - for just over 30 seconds.

We CELEBRATE this milestone!!!

Matt looked so impressed with himself, smiling and then a cute giggle as he eventually fell over.

Matt has been wanting to stand for a while and up until yesterday has not managed it for more than a couple of seconds. Yesterday everything came together for him to achieve his goal. Well done Matt!!!

We will post pictures soon. We did try take some yesterday but they are not that good - I think mom and dad were shaking with joy so nothing much came out in focus.

The Vase - by Barrett L. Dorko, Physiotherapist

Imagine that one day you are handed a vase and told that it is now your job to hold it with your hands alone. You cannot put it down or give it to somebody else. You don't own it, but it is your responsibility to keep it with you, and this is what you are paid to do.

I am often given credit for having remarkably sensitive hands. Therapists watching me work speak wistfully of how wonderful it must be to have such a gift. If they don't think it's genetically acquired, they assume my sensitivity is the result of years of concentrated effort.

I don't buy any of this. If either were true, I think I would know it.

Imagine now that you've been holding on to the vase for a few minutes and that you are told from a perfectly reliable source that the vase is worth millions of dollars.

How might you change? I've asked many therapists this very question and they almost always insist that they be allowed to put the vase down despite my specific admonition to the contrary. But, in time, they may describe their hands in relation to the vase now that they have this new knowledge.

Assuming that its worth might mean it is fragile, their hands now grasp it more fully, but gripping is out. In their imagination they become increasingly aware of the vase's shape and tendency to respond to gravity as they shift its weight.

If I prod them a bit, they tell me that something worth this much might be interesting to see. They look at it carefully. Its texture, glaze, and shape might reveal why it is so expensive, and the therapists usually wish they knew more about vases.

In short, there is no distinct increase in the sensitivity of the therapist. All the sensitivity they use in the end was with them when first handed the vase. It is much more accurate to say that they now appreciate what it is they are holding. Their gentle handling and interest in the subtleties of the vase follow their knowledge of what it is worth. Before that, care and attention to the holding was haphazard, at best.

Although we don't ordinarily assign monetary worth to the human body, something akin to that is evident in all contact with others. The potential referral source (read: money in the bank) is more likely to elicit more interest and consideration from us than some of the patients he or she might send. This is the nature of business, like it or not.

I feel that the role of the physical therapist should include an appreciation of the body that is reflected in the way we hold it. But what is our reputation? Most patients come to me fearful of being poked, prodded, and painfully bent. It's what their friends got elsewhere, for similar conditions and I can understand their fear.

It is absolutely impossible to handle another with care and wonder, without feeling you deserve the same. When I was handed this "vase" years ago, I wanted to put it down too. I felt not up to the task and my methods reflected that. I was known to relinquish this responsibility to an aide or assistant, a protocol or machine. This doesn't always work very well, and it added nothing to my appreciation for the patient or myself.

My hands are not unusually sensitive, nor are my skills especially difficult to acquire. But when I'm with others on the job, I can sense their worth, and I hold them with care.

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