Wednesday, December 25, 2013

Matt's Sports Day 2013

Some photos from Matt's School Sports Day in November.
Matt is on the on the far left. He had to run to the blue basin, fill a cup with water, head back to the start to pour it out, and then to the finish line. I think - I remember correctly.

Go Matt Go!

Almost at the finish line!
Matt and Gemma celebrating their medals.

Nic got to participate in the siblings race which he loved!!!

Appreciating Matt's Teachers

For teacher's appreciation day earlier this year in October (yes I am still behind in my blogging!), Matt and I put together this 6 minute video clip for his teacher Mrs Rushby, and his teacher's assistant, Romelia. There some fun sound clips where you can also hear how Matt's talking is slowly coming on.

Good bye Tonsils

In October Matt had his tonsils out (yes I am behind on my blogging!!!). Matt had been experiencing sleep apnea and so removing tonsils would help improve night time breathing. We have also been really concerned about Matt's persistent cough over the winter time, so during the op a pulmonologist did a scope of his lungs to check out if there were any concerns. 

Matt was quite excited to be in the hospital. He has learnt about doctors and nurses at school and loved greeting these professionals as they walked passed him. He also loved it when they wheeled his bed to theatre. It meant travelling through a number of passages and up in an elevator. Matt experienced it as a fun ride.
Once in theatre Matt became anxious and it was hard to hold him as he fought against receiving the sleeping gas. There is nothing quite as stark and lonely as walking away from one's unconscious child, leaving him in the hands of strangers.
Matt's operation went well. There was a short moment of panic as he was recovering, apparently his vocal chords went into spasm which made his breathing difficult. The anaesthetist had to intervene quickly and I am told managed it well. After what felt like many hours, but really only a couple, I was able to see my boy. He was kept in the high care for 24 hours just to monitor his breathing.

Still not awake. So vulnerable.

Keeping a very drowsy Matt company with lots of Dora stories.

Starting to feel much better. Love that first smile!

Lots of waiting, playing iPad...

More sleeping

Watching some TV which was on the ceiling.
We both had a fitful night sleep with nurses checking on him every hour, lots of beeping machines and too much light. Before Matt was released home the pulmonologist wanted to do a CT scan of his lungs just to check up some things she picked up in the scope. Once again Matt - much to his delight - was wheeled around the hospital. The CT scan, for those of you who have not had the joy, is shaped liked a giant circle which is in an upright position, and there is a bed which moves into the whole of this circle shape. As soon as Matt saw this contraption he queried "doughnut?" They struggled to get him to lie still enough so he needed to be sedated. Despite not being fully conscious Matt has vivid memories of this giant doughnut and often talks about it. Finally we could go home.

And what joy to be welcomed home by dad and Nic. I love this pic.

Tuesday, October 22, 2013

Matt is celebrated at school

This fun celebration of Matt happened at the end of last term - in September. I forgot all about these pics - just found them today. Better late than never.
The tradition at Matt's school is for the birthday child to bring cake to share with classmates. Matt decided we should bring red cupcakes.

 No comments needed on these photos as Matt's facial expression in each one just says it all.
Oh and in case you wonder if this is the usual dress of staff and kids. Being the last day of the term is was a fancy dress day. (I love how the teachers also get all dressed up - shows their fun sense of humour and dedication)

A big thanks to Romelia (a special lady from the school who takes a VERY special interest Matt's learning) for the photos.

Thursday, October 17, 2013

Matt's Drum Party

It all started with a leisurely hammock moment...

Then we got into the drum theme by making our own drums

The cute recycled drum were soon overshadowed by the REAL thing


Then the drum version of Happy Birthday
Matt soaking in the after glow of the drum rhythms


And then of course, the drum cake...

To end off, some energetic obstacle courses and games...

And last but not least, the much loved game of Duck Duck Goose?
Happy Birthday Matt - You're 7 years old!

Sunday, October 6, 2013

Matt ice skates

So in my last post I wrote about how Matt was included into a birthday party through the mother of the birthday girl being open to having a variety of activities allowing for Matt to participate.

I had been concerned that Matt would not be able to participate in ice-skating activity of the party. But let me report to you that not only did Matt ask me if he could try to ice-skate, but he willingly wore those strange, heavy, wobbly ice-skates AND waddled over to the mini ice-rink AND stepped onto the ice. There he held to the side, very conscious that he was unstable. But didn't flee. He slowly got to know the ice and realised he could slide forwards and backwards whilst holding to the side. And that's what he did. And that's what he enjoyed. I was so proud of his courage to try something so new!

Saturday, August 24, 2013

Birthday Party Inclusion

Sometimes even I, Matt’s mother who is passionate about including Matt in all things, find it easier to exclude him than to do the hard work to make a plan for him to participate. Makes me realise that this inclusion thing constantly requires intentional thought and planning – it really doesn’t JUST HAPPEN.

A good friend and neighbour approached me regarding the upcoming birthday of her daughter. The birthday plan was to go ice skating and she wondered if Matt would manage. I thought about Matt’s balance issues and his fear of feeling unstable and thought it best if we give it a skip. A small part of me felt a little bad that I was depriving Matt of attending a birthday party – he does so enjoy parties, and he doesn’t often get invited to parties (probably because other parents of kids make the same assumption about Matt that I was just making). But I reasoned that it would be too difficult, he wouldn’t enjoy it and so the best decision was to not go.

But my friend didn’t leave it at that. A few days later she came up with a plan. Clearly she had been thoughtful and intentional about inclusion. She added other activities to the party celebrations, including a carousel ride, so that Matt and other kids who might not be confident in ice-skating could enjoy the party. (Matt is totally gonna love the carousel)

This morning her daughter hand-delivered the invitation. My heart swelled as I realised how grateful I was that another mom had kept alight the inclusion light, when I had let it grow dim.

Monday, August 5, 2013

Book Review: Raymonds Room - part 2

One of the principles that is a common thread through out Dileo’s book is that it is not about getting a disabled person ready to participate in life – whether it be in a mainstream school, of having a job, or living in their own home – the question should rather be what support could be put in place to allow the disabled person to live life now, and pursue his dreams.

He gives wonderful, real life examples of how beautiful things can be achieved if the disability professionals start with the question: what are the life dreams of this person to whom we are providing a service? And how can we provide supports to make that happen. Thereby moving away from looking at what are the deficits in this disabled person and how can we better train them to “fit in” and “keep up” before we allow them to try out life in the real world.

I love this concept.

I will hold it in my heart to always look to Matt and give him time, space and opportunity to express what his life dreams are. And then to start asking the questions:  how can we work with him to make this happen, and what supports will he need to be able to move in this direction? I want to be led by his voice as far as possible.

I love that the focus is not on “what are the things that Matt can’t do and how can we try make him more normal by training him to someone do all these things”

I love that there is recognition that all of us need support in life, some more than others, but we all need support.

I love that my focus is all about connecting with the creative energy of all those who love Matt and those who engage with Matt professionally and through his school, so that we can find unique, clever, out-of-the-box, imaginative, and life-giving ways of helping Matt achieve his own life goals and dreams.

Isn’t that what all parents want for their children – to help them reach their dreams. I had put that parenting role aside when I came to terms with having a child with global developmental delay, as if some how he wouldn’t be able to have his own dreams. And if he did, he certainly wouldn’t have any capacity to reach them and therefore they were not worth reaching.

Well Dileo has changed that in me, by sharing a vision of what is possible. In his book he tells stories of various people with different types of disabilities who were viewed as people with goals and talents, and were supported to take meaningful steps towards their dreams. I encourage you to read the book to encounter this in a deeper way.
Find out more about Dale Dileo's "Raymond's Room, Ending the Segregation of People with Disabilities" here.
Check out part 1 of my review here.

Tuesday, July 30, 2013

Book Review: Raymond's Room - part 1

When deciding what education option is best for one’s child there are a multitude of factors that are considered. Dale Dileo’s book Raymond’s Room "Ending the Segregation of People with Disabilities" has significantly shaped my thinking about what might be in Matt’s best interest. Dileo has worked in the disability arena, in many roles, for many years and strongly motivates for inclusion not only in schools but also in the workplace. He covers many topics but it is the psychological perspectives and studies on difference that struck a chord with me.
It all starts with longing that we have for our children to belong. I believe one day too, Matt himself will have that longing to belong. In order to belong we need people’s appreciation and acceptance of who we are. To work towards that acceptance we have to understand a bit more about what causes people to reject some people and not others. The concept of deviance is key to making sense of this.
People are viewed as deviant when they are perceived as significantly different from what is usually experienced. This is part of human nature. When we are faced with someone who is unusual in a way we do not particularly value, we are curious, but also mistrustful. This is not limited to disability.” (page 32)
So being seen as different from the norm can lead to people keeping us at an arm’s length, and thus not helpful for belonging. But it seems that being different is not fixed in stone nor is it an objective reality. Deviance can be exaggerated or minimised in the perceptions of people.
“The interesting thing about the perception of deviancy is that “differentness” can be subject to exaggeration. One way to highlight differentness is to group people who share the difference together. What tends to occur is that the shared difference becomes more prominent because it is more noticeable.” (page 33)
Dileo explores how by clumping all the “special needs” kids together we are doing them a disservice in terms of other people’s psychological view of them. When grouped together, all that other people see are the things that these kids have in common – that is their disabilities or special needs. It therefore becomes more noticed and more prominent.
“Grouping people of like disability only magnifies what they share in common – the disability.” (page 49)
He also shares how differentness can be minimised, or at least seen as only one characteristic of the person, not as the defining feature.
“People often generate opinions about others based on initial impressions, and then modify those impressions as they encounter new information. When a person has a single noticeable difference, such as a disability, that characteristic can be moderated by other characteristics, such as personality traits, style of dress, and job title.” (page 48)
Further studies show that people are more willing to tolerate deviance or differentness the more competency the individual demonstrates. He gives an example to explain this:
“Imagine you are meeting, for the first time, a woman in a wheelchair whose speech is a bit slurred. Some people will make assumptions about her intelligence, status, etc. based on the wheelchair and her speech. But now imagine that the individual in the wheelchair is introduced to you as the head of a local company, and that she is wearing a nicely tailored business outfit. The centrality of her disability immediately fades, in the light of her status and appearance” (page 48)
In Matt’s current school setting the other kids are certainly aware of the ‘differentnesses’ about Matt, but they also know that he loves drumming, he is good at kicking a ball, he is fun to play chase-chase with and he delights in telling everyone what pictures are on their t-shirts. So for many of them he is pretty cool. It’s because they have had the opportunity to get to know Matt as an individual. Things would have been very different if those same kids had encountered Matt as part of a crowd of other kids all with special needs. Dileo explains using the above mentioned story
“if you are meeting for the first time a group of eight individuals in wheelchairs, there is no opportunity to process information competing with  the disability. Instead, the fact that all of these individuals have a common difference, a wheelchair, is pretty much all you will perceive. In other words, you don’t see a group of individuals, all of whom happen to use wheelchairs. You tend to see a group of wheelchairs, all of which happen to have people in them.” (page 48)
Dileo's thoughts and writings have connected deeply with my passion of Matt being given the opportunity for other people and children to get to know him for all that he is, not just defined by one aspect of who he is. And so including him in a mainstream setting, as long as he is happy, learning and belonging, is key to pursuing this goal. 
"Grouping people who share a difference (a disability) exaggerates the perception of difference. It limits who will be friends, neighbours, schoolmates, and work colleagues. Lives become defined , not by interests, family, goals and social relationship, but by disability-related goals often imposed from a program." (page 49) 

Every Friday afternoon Matt goes to Soccercise Starz which is an extra mural activity at his school. He loves it. Fridays used to be noticeable because it was the day they served hot dogs at school. Matt would say HOTDOG DAY. But that favourite treat has been eclipsed and now Fridays are known as SOCCER DAY. The soccer practice takes place just behind the school parking lot so I can sneak a peak at Matt in action. I love watching how he is assisted to fully participate. And afterwards his eyes sparkle with delight.


In the next few blogs post I hope to explore more helpful perspectives from Dileo's book. Watch this space.

---- A big thank you to Cindy's mom who blogs here for recommending this book.

Tuesday, July 16, 2013

Wielding the power inside her effectively...

I love this..

'delayed' is a word that helps neither me nor my daughter at all, nor any professionals that serve her.  To think of development, milestones, victories - only in vertical linear patterns keeps us in a "catch up" mindset.  I don't believe Addie is delayed.  I think she's just different.  Even when she could walk, it wasn't that she caught up to other kids - she still does it differently.  She is unable to speak verbally, but that is not a matter of being behind, we are not awaiting speech.  She communicates effectively through a variety of other means.  And our goal is not that she do things like everyone else.  It's that she does things in a way that helps her understand, appreciate and wield the power inside her effectively - no matter if it looks nothing like those around her.
a quote from Terri who blogs here, and whose comments on our RTS Email Support Group always inspire me to pursue a future for Matt that has concepts like belonging, participation, contributing meaningfully and other ideas that push towards Matt being appreciated as a valuable person in society.

Monday, June 3, 2013

A very special letter

This blog is a place that I come to when I need to process stuff.

It has been a while since I have been blogging - a sign that I have been living life, not processing - just living. And it that has been good.

Matt turns 7 this year. I remember the early days (well actually I don't because they are a total blur), lets say I remember the first few years of his life when it seemed like every week there was a new challenge to overcome, and so lots processing required. We have come a long way.

We received a very special letter this week.

An acceptance letter from the mainstream, govenment school where we applied for Matt to attend next year 2014, starting in grade 1.

This school is not for kids with special needs. This school does not have a special needs unit. But this school is special - in that they are truly open to all children, including children who learn in different ways. And from what I have seen (and what others tell me) they celebrate difference and diversity. 

We are very grateful for this open door. And we are hopeful that this school will allow Matt to grow and learn and laugh and participate and well, just be Matt. The brilliant Matt that he is.

Monday, February 18, 2013

A glorious gift

In December last year, 4 days before Christmas, Matt received this a glorious gift..


"A grommet is a small tube, which is inserted into the eardrum to allow air to pass into the middle ear. It prevents fluid building up again and causing a hearing loss."

(These aren't his but I pic that I downloaded courtesy of Dr Paulose)

And within days we noticed that his hearing had improved

And the real gift unfurled in the weeks that followed as we noticed that his speech was improving. No more funny sounds. No more peculiar pronounciations. No more struggling to form words.

For most of our winter (June - August) last year Matt struggled with one cold after another, one infection followed the next. Weeks of snottiness turned into months. And with that came ear infections. And once his health improved he just couldn't seem to shake those gluey ears - despite 3 months of steriod sprays. Surgery, no matter how simple, is not something I feel comfortable inflicting on my kids. But it had to be done. I didn't dare hope that would have such a profound effect on Matt's hearing or speech.

I remember wondering why Matt had reached a plateau with his speech. I ached for him as he struggled to create the sounds, even whilst he carefully studied my lips and mouth in order to try imitate me. Words and sounds that he could once say where now difficult for him. Other sounds became so mispronounced that it was hard for us to understand him. I wondered if this was just the way his syndrome influenced his speech development. I  sadly considered that this might be as good as it would get for Matt's verbal communication. One never knows with these syndromes. Little did I know that he was just hearing the world as if under water.

It has been a joyful 2 months listening to his beautiful, little voice explore sounds and words; slowly growing in confidence. What joy fills my heart as I hear him trying to sing along to his favourite songs! He can't seem to help himself, he repeats most of the things we say as though he is desperately trying to practice them and take ownership of the sounds. He is still insecure in his speaking, saving his words mainly for us at home and adults he knows will take time to listen. Unless prompted and supported he is not brave enought to speak to other children. I think he senses that children are too busy, moving on to the next before he gets it all out. One small step at a time. And we are certainly celebrating this step.

I don't put videos on this blog much, but I think this definitely calls for one. So watch this space.

Saturday, January 26, 2013

Book Review: Belinda and reflections on Pain

So how do you deal with your pain? Emotional pain. This is a question that I have been pondering for a while. Do you admit to yourself that you are in pain? If you do acknowledge it, should you share it with others? And who should these others be?

I've just finished reading a story of Belinda and how she survived a horrific car accident. She fought for her life, and then fought for her body to work again whilst grappling with the many losses that her disability brought her. I have met Belinda a couple of times - in fact Iblogged about her a few years ago. I don't know her well, but I was interested to understand more about her journey .
On the cover of Belinda's book is a picture of broken egg, which comes from the quote: "You cannot go back and unscramble eggs. There is no way to undo what has been done. Let’s move out of our past failures, and starting with our scrambled eggs, learn how to make soufflĂ©!" by Barbara Johnson

Her book is really a diary that she kept over the 10 years following her accident, and she shares her triumphs and her frustrations. In some ways it was hard to read, as I was overwhelmed by the multitude of challenges that she faced and her progress was slow - requiring grit and determination. She also shared honestly about her emotional pain and loneliness. Also hard to read. Oh how we prefer the successes, the joys, the feel-good bubbles that make stories attractive. To be with someone in their time of aching is difficult - part of me wants to run from people's sorrows. Yet it is in that place of struggle that so much is learnt. And through her writing, it was when she took me into those dark places that I gained the most.

I’ve not been shy to share my difficulties on this blog and with others in my social circle. Explaining our challenges is one thing, but I don’t give myself much space or time to dwell on the pain associated with the difficulties. My attitude to life is to recognise the difficulty and then I move straight on to seeking a strategy in order to overcome it, and if that not possible find a way to manage life with it.

In the last couple of months I have found a tugging from my inner being to give myself permission to feel sad about the difficulties. My inner being obviously thought this would be healthy and appropriate, much to the reluctance of my more conscious self. The reality is that I am fearful that if I let myself feel the ache and sorrow then it will just be downward spiral into depression.

Yet I have come to see that by not giving myself space to “feel the pain”, I end up unexpectedly imploding. By imploding I mean seriously over-reacting to a situation, being assaulted by intense negative feelings and experiencing a desperate yearning to run away from my life.

But where is a wise and safe space to share this pain, and the reason for the pain. Is it fair to Matt that I share with the world all the ways he frustrates me? I am unsure if sharing this with the blogging world would be dishonouring to Matt. Yet by not sharing the hard things, then my blog ends up looking like life is easy and Matt is just sailing through. Yes there are joys and triumphs, but there are also tough, heart-aching times. 

In Belinda’s book she was very real about her pain. Maybe one can be in a book, where the reader sees the pain in the context of the whole story. Blogging is different because people can just dip in and out – and can completely miss the big picture. Hmm not sure yet.

But I do know that this year I am going to be a lot more honest with myself about acknowledging the soreness of our challenges. I will seek courage to verbalise this to close family and friends. And not just fast track to finding a solution or coping strategy.

Monday, January 21, 2013

Holiday Highlights

Whew we are behind on our blogging. Here are some photos from various holiday activities that Matt and Nic enjoyed.
Learning how to ride our friends scooters
Climbing ships
Keeping the earth turning
Christmas Decorations

Braving long slides

Inspecting hippo's teeth

Stone throwing in big dams

Devouring many bowls of ice-cream

Peek-a-boo with pillows

Climbing mountains

Flying helicopters


Boy do we love swimming

And swinging
And a whole bunch of other stuff that we didn't capture of camera.