Wednesday, August 27, 2008

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.

Monday, August 25, 2008

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

- Archbishop Desmond Tutu, Nobel Peace Prize winner

Wednesday, August 20, 2008

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!

Saturday, August 16, 2008

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.

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

Thursday, August 14, 2008

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.

Tuesday, August 12, 2008

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!

Saturday, August 9, 2008

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

Thursday, August 7, 2008


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)

Tuesday, August 5, 2008

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).

Monday, August 4, 2008

Rivers know this:
there is no hurry we shall get there some day.

-Winnie the Pooh