As parents we recently we found ourselves in a situation where the question was posed to Daniel, “If you were able to have an operation to remove your cerebral palsy, or lessen its effect, would you?”.

It’s a pretty big question to ask anyone who has a disability.  This one question has the potential to both destabilise a trusted relationship as well as establish ‘cancerous self-doubt’ in the person for whom it is asked.  It is for these reasons that asking this question came about only after several key events occurred with Daniel and where opportunity favoured the prepared.

Daniel is a huge fan of James Cameron’s movie, “Avatar”.  (For the ten people on the planet who have not seen it…) Avatar is a science fiction story of a US marine who, after an accident, is struck down with paraplegia and yet, when attached to a machine, is able to remotely control the ‘able’ body of a local indigenous alien (two arms and two legs).  When the actor first experiences this ‘remote control’ he goes through a very convincing realisation that he can suddenly feel, and use, his legs again.  He is so excited that he can stand up and feel his legs that he runs out of the testing facility and experiences the extreme joy and happiness that only regaining ones independence and movement can give.  This joy is replaced hours later when, after relinquishing control of his ‘remote control’ alien, he is brought back to reality when he is back to being confined to a wheelchair.

It’s quite an uplifting scene, to see this once paraplegic man experiencing movement in his limbs again even though it is only occuring in his mind – but at least, to him, it feels real.  It is equally challenging to watch him come back to terms with ‘real life’ in a wheelchair, as he returns to reality.

I have often wondered whether the joy experienced by the marine somehow strikes a chord within Daniel and perhaps sets in motion thoughts of wishful thinking like, ‘someday that might happen to me’.  It wasn’t a question for which I was game to ask, just yet.

Around the same time Daniel’s science class commenced studying the human brain.  Learning about the different sections of the brain, what the sections are called and what are the functions of each section.  Specifically there was a discussion around the area of the brain for which controlled movement for which Daniel showed a keen interest due to his CP.   We learned about this latest study topic while driving in the car as a family as Daniel raised with us whether we could organise a scan of his brain.

The time seemed right to ask the question.

I asked Daniel, “If you had the opportunity to have an operation to either cure CP or reduce its affect, would you do it?”.

There was an eerie silence  from the back seat.

Even William fell silent as he too was aware of  the gravity of the question and the pause surrounding Daniel’s response. Penny and I kept our focus on the road ahead and, when I gave her a sideways glance, I could see her also looking at me out of the corner of her eye.

Seconds ticked by…

From the back seat I heard Daniel take a deep breath, as if preparing to sigh.

As he exhaled he said in a soft voice, “I suppose so”.

His response left us hanging.

Did he want to do something about it? or not?  Surely, given the opportunity wouldn’t anyone with a disability wish to alleviate themselves of the burden and return to a position of, what society would call, ‘normal’ or for which at least would render him more able bodied and not dependent upon wheelchairs and walking frames?

The mood in the car was tense.  In the silence my mind was saying, “Where do we go from here?”, “What have I just done?”.

No one was speaking.

About a minute passed when Daniel took another breath.  My hopes of him being the one to take the discussion to the next level and break the silence were fulfilled.

In a slow and yet deliberate tone, that showed he had in fact thought about this question, not just at the moment of asking, but had obviously pondered his response to this question as if, in fact, in preparation should someone ever ask it, he said, “Mum and Dad, all my friends know me for having cerebral palsy.  They help push me around in my wheelchair.  They help feed me at lunch times and play games with me.   With my cerebral palsy I am unique, if you take that away, I will just be like everybody else.”

Although the words out of my mouth were, “That’s fair enough”, my mind seemed disconnected at it was reeling in shock.

My wife and I, once again, exchanged sideways glances without trying to look as though we were communicating however it was obvious that we were both amazed at his response.  An air of silence fell over the car and again this time, after several minutes had passed, he was the first one to break the silence to add to his response.

“You know, after thinking about it, I wouldn’t have an operation to get rid of cerebral palsy”, he paused for a moment then added, “I wouldn’t change anything, I am happy the way I am”.

In the silence that followed I couldn’t help but think of a better cure.

If you still don’t understand what I mean…  use your eyes and your brains FIRST before using your mouth! I am so FED UP with my wife and I being abused by people for using disabled parking spots, when transporting my son, just because we (the drivers) are able bodied.

Is it not enough that our lives are complicated through having a child with a disability that we have to be inflicted by people who believe it is their right to launch a verbal assault on my wife and I, for using a disabled parking spot, without politely inquiring first?

Am I angry? You bet !!

This morning my wife was dropping my son off on a school excursion and was abused by an elderly gentleman who wanted to use the disabled parking spot where she was parked. The issue wasn’t that he was challenging my wife (although this does get to you after a while) – it was the manner in which it was done.

After getting my son into the wheelchair and meeting with the teacher’s aides, my wife walked back around the car where this gentleman leant on his horn for what seemed an eternity. His action was not to just get the attention of my wife but to make sure that he had got the attention of as many people around him as possible as he obviously felt that ‘he was in the right’.

After blasting my wife he then rolled down his window and began yelling at her, “YOU CAN’T PARK THERE – THAT SPOT IS RESERVED FOR DISABLED PARKING !!”. My wife, with more restraint than I would have had in that situation, pointed to my son in the wheelchair and said “That is my son in the wheelchair”, to which the offending motorist just sped away.

If you are reading this and saying to yourself, “Just don’t worry about it”, or, “You need to not let it get to you”, then I say to you… have the community do it to you for 15 years and see if after all of this time YOU don’t write a blog where your patience finally boils over.

I am the one that receives the call from my wife re-telling the situation while at the same time trying to sound as if it really didn’t affect her… but it does – I can hear it in her voice.

How can it not affect you? I know that she is telling me because she needs to get it off her chest, and that is OK, but for me, as the husband who wants to protect his family, it is hard knowing that there are so many people out there who are hell bent on making our lives just that more difficult than it needs to be.

The disabled parking permit is a permit for which allows us to park in a disabled parking zone providing we have Daniel with us. My wife and I are very conservative people in this regard and will generally use a disabled parking spot when all others are gone – it is rarely a first choice and I have to say that the fear of being abused from someone of the general public has probably conditioned us both to not use it.

That in itself is a sad state of affairs.

Now I am an advocate of ensuring people who use disabled parking without a disabled parking permit are advised of their ill ways. However my approach is always to approach them from the perspective of, “They didn’t realise what they have done”  which of course allows them to back out of the situation politely. My approach is generally… “Excuse me, I am  not sure if you realise this but you have parked in a disabled parking zone?”.

Whether they move from the spot is neither here nor there but if enough of us take this approach they will think twice about it next time and tempers and emotions don’t need to escalate beyond that of civilised human beings.

So this is my advice….

• Check to make sure their car is displaying a ‘Disabled Parking Permit’, if not…
• Realise the driver of the car may be able bodied however, providing they are carrying the person for whom the disabled permit is for, they are allowed to use those parking spots (They may be picking up or dropping off so the person may not be actually with them at the time)
• Stand up for what is right and bring it to the attention of the people who are doing the wrong thing – but your approach is important therefore…
• Take the approach of “They didn’t realise what they were doing”,  and allow them to back out of what should be an embarrassing situation.
• Don’t get angry, the first person to bring emotion into a discussion loses. Stay unemotional and you will always have the upper hand.
• Realise that the person may not move their car… if that’s the case, then BURN IT !! (not really!)

On the other lighter side, my son who is the reason why we have the permit, has a joke with our friends saying that, “My mum and dad made me this was just so they could get free parking!!” – a truly warped sense of humour !!

Have you had this happen to you?  What did you do?

signed:

Disabled Parking Nazi

It was a couple of months ago when we were getting Daniel out of the bath  and that now he is older (and taller), he was tall enough to see himself in the mirror.  He straightened his legs to put his head high enough to see himself more squarely in the bathroom cabinet mirror.  Although he had seen himself in ‘a’ mirror a number of times in his life this was the first time he had ever seen himself with wet hair.

There was a brief moment of heightened curiosity as he held his own gaze and looked intently into the mirror.  He stopped and studied himself and then turned to Penny and said, “So that’s what I look like with wet hair!”.

So simple, I mean, we always see him with wet hair and yet this was the first time he had seen himself with wet hair.

Another occurence with a similar outcome happened a few months prior to that, Daniel was in the lounge room and, out of the blue, asked if he could go to the laundry.   In a half frustrated tone I said to him, “Why on earth would you want to go to the laundry?”.  He hesitated in his response, as if he had just asked for something that was profoundly naughty:  “because I’ve never seen it”.

At this point I had a paradigm shift in my thinking and my heart sank.  We had lived in our house for 8 years and he had never seen the laundry.

In our house the laundry is part of the house, however is only accessible via the backyard so I said, “C’mon, let’s go to the laundry”, and took him downstairs and out the back to go to the laundry.  It was, as you would expect, like any laundry.  However, when you have never seen a laundry before in your life it held several new found interests for him.  I pointed out the washing machine, the dryer, the big basin that mum uses to rinse things in as well as soak the clothes that get stained.

The experience for both of us was… interesting, due to the sense of adventure and watching Daniel discover something that I have taken for granted, however also saddening to realise that his life is so limited to the areas of our house for which he can access.

The experience stood as a reminder to me to not take everything for granted and to take the time to see, even the simplest of his requests, from his perspective as it quite likely holds a new experience for both of us.

At the time of writing, Daniel is now 14 years old and becoming a young man. This also means he is getting heavier. At 5 foot nothing (on the old scale) he is almost as tall as Penny and, unfortunately, she is really starting to struggle when assisting him around the house.

What wears us down is all the little things.

He can’t, for example, just go to the fridge and get himself a drink, blow his nose, make his own bed or use the telephone unassisted to call a friend. If I said that the simple act of feeding him is exhausting, it may raise an eyebrow amongst the uninformed. I mean, how hard can feeding him be? You’re right, it’s not hard … by itself, but when you do it for three meals a day for 14 years straight, you start to get a better idea of where I am coming from.

It’s not all doom and gloom though. There is a positive side to this, and while it doesn’t remove the impact on Penny and me completely, it has reduced it. Daniel is becoming more aware of himself and the impact his needs are having on his immediate environment. This has encouraged him to attempt, and achieve, more tasks around the house, while increasing his own independence and confidence. This includes dressing himself or getting himself around the house, as well as up and down the stairs, by hopping around on the ground.

A lot of solutions have been proposed by professionals to alleviate the effort and strain contributing to our bad backs, torn muscles, saw knees, etc., but most of these solutions turn out to be more effort than the tasks that originally caused our problems. In isolation, the professionals are always correct, but it is not the big things, but the many little things that are crippling us.

Each night Penny goes to bed with a heat pack on her neck to soothe the pain from lifting and helping Daniel achieve the little things. You can’t turn around to an aide agency and say, We just need someone to be there for us to …

• Brush his teeth
• Get him downstairs
• Lift him onto a chair
• Get him in and out of the bath
• Getting him a drink or feeding him a meal
• etc., etc., etc.

Where do you draw the line at asking people for help?

Does anyone use any services or suggestions that could assist us in alleviating some of the pain which we go through?

As a young teenager entering high school (middle school), Daniel spent the first 18 months in his manual wheelchair. All through this time, he had a teacher’s aide who stayed with him throughout the school day. She assisted him in manoeuvring from class to class, as well as with general classroom activities. As Daniel established new friendships, one by one they eagerly volunteered to push Daniel in his wheelchair and sometimes even argued over the privilege. They would often walk as a group taking turns at pushing Daniel between classes.

Manual Wheelchair = Great Group Dynamics

Daniel’s teacher’s aides observed the change in the social dynamics and happily backed off to allow this natural progression of friendships to establish, and establish it did. Daniel now has a large group of close friends which regularly visit him on the weekends.

The ability for his friends to assist Daniel in his manual wheelchair had the following effects:

• Daniel was always at the centre of the group – they would crowd around him equally each side talking across each other.
• Pushing Daniel in the wheelchair allowed the kids to interact closely with Daniel.
• Knowing that Daniel was not able to efficiently push himself, the friends were quick to step in and assist. I think the limitation of Daniel’s situation appealed to their sense of kindness and an overarching desire of wanting to help others less fortunate than themselves.
• They felt they were needed, which established a sense of belonging to a group. (I am sure there are psychologists and mental health care professionals who can better comment on these basic human needs.)

Electric Wheelchair = New Independence

Daniel was half way into his second year of high school when he found out that he was going to be given his own electric wheelchair. At a price tag of around A$20,000 this was more than what some people paid for a family car, so we were very careful to stress with him:

• He must look after it.
• He must look after other people and equipment around him so as not to hurt or damage anything (at 100kg+ this chair is like walking next to dump truck).

The chair had exactly the effect we were hoping for, his life opened up to a whole new level. He went from having someone with him every second of his life to being able to just go somewhere on his own, without anyone around and experience something new, something we all take for granted – having time to yourself.

It took us a long time to get used to this new found freedom as well. Penny and I could be with our family and walk along holding hands for the first time in at least 10 years. For the first time, we were also in a situation where we had to actually look for both of our children when we left a store.

Negative Side Effect

What happens once the honeymoon period has gone? What happens when the novelty of new found independence for a teenager at school has gone and he starts settling down into a routine?

We leave the electric wheelchair at school to charge overnight and keep the manual wheelchair in the car as it is much easier on all of our backs.  Around 12 months after he received his electric wheelchair, we started to notice how he would choose to be in his manual wheelchair more often than his electric one. At first it was being explained away as the manual one giving me more exercise. Our observations, however, matched that of the teacher’s aides in that, whenever he was in the manual wheelchair, he was being pushed around by his friends.

Another aspect was that, whenever he was in his manual wheelchair, his friends would setup an obstacle course and time how fast Daniel could navigate his way through it – it became a bit of a lunch time sport and quite a novelty for everyone (not to mention great exercise for Daniel).

It was only after he had made repeated and consistent requests to stay in his manual wheelchair when Penny twigged that something may not be quite right. We were also worried that the teacher’s aides would be under additional pressure, not only to carry stuff around for him, but to also push him in his manual wheelchair at times – which wouldn’t be fair.

Penny and I had a chat about the observations and bounced some ideas around. I think we knew deep down that it was a social obstacle, however, we weren’t 100% sure and didn’t want to put any ideas in his head that perhaps were not already there.

We sat down and spoke with Daniel that night and it didn’t take long to find out that we were on the right track.

It’s amazing how the smallest things can have a ripple effect and change the behaviour of others.  When Daniel is in his electric wheelchair, his friends take the stairs while Daniel takes the ramps – previously they all walked up the ramps together.  Now that Daniel is in his electric wheelchair, I think there is a sense of, He’ll be right and He can go where he wants to now, so he doesn’t need us anymore and of course there is that inclusion in the conversation … the new wheelchair is that much larger and people have to be more careful around it. Having it as part of the group as they walk along doesn’t aid in effective group communication anymore. Daniel now has to concentrate on watching where he is going, as well as trying to talk to his friends, all at the same time. This is a skill he hadn’t previously needed.

We are still in the midst of dealing with this, and it is one of those blogs for which I don’t have an answer. I don’t believe making him use one or the other is the right thing to do, however, we have to be cautious of the impact on others should he choose the manual wheelchair. I am really looking for advice and guidance on this. There are a lot people who have a disability and are wheelchair bound who I am sure have been through this experience. I would really like to hear from you in regards to your problems, as well as any solutions you may have to offer.

Daniel loves his hot wheels cars; he has over 400 of them.

He got them out one day and I watched him as he tried to push one of them across the carpet, desperately attempting to enjoy the same feeling that I had when I was a little boy.

It was another one of those defining moments that, as a father of a child with a disability, remind you of what he has to go through. I was on the lounge and Daniel was on the floor surrounded by his toy cars.  He lay on the ground beside the car with his eyes focused intently on what he wanted to achieve.

He held both of his hands together to stop his arms from shaking, as if he was in a sideways praying position. He clasped his fingers together to make a mangled fist and almost worked himself into a sweat just trying to raise one finger outside of this mangled ball of fingers. Still shaking, and yet trying hard to control his movements, he slowly edged his one partly outstretched finger towards the rear of the little toy car.

Five minutes had now gone past.

As he moved his hands towards the back of the little car, his arm jerked wildly and sent the car flying across the floor. Without saying anything I got up off the lounge, collected the car and repositioned it back in front of his face – a lump now forming in my throat.

He had relaxed briefly from the strain of trying to get his hand close to the car and, as a result, had lost his fist.  He clasped his hands together again and made for a second attempt.  His breath was straining and he was making noises as he fought against his involuntary movements.  Again, as he neared the car, an expected tic sent the car across the carpet.  This time it was accompanied by a small whine of exasperation …

He had been at it now for fifteen minutes.

But he didn’t give up.

He took a deep breath, re-clasped his hands and set out to push this car along the carpet like his little brother does all the time.  He was now sweating from the start.  After eight minutes he had his two hands in a fist and had just been able to extend one finger.

Over the next nine minutes he strained to get that finger to the back of the little car on the ground.  As he got nearer to the car, his movements and breathing became more unpredictable. It was now just over 30 minutes and finally his finger reached the back of the car and pushed it… just five centimetres forward.

He relaxed, exhausted and yet satisfied that he had persevered and achieved what he wanted. He then turned away and watched TV.

I went to my bedroom trying hard not to show him the tear running down my cheek.

Even when I remind myself that he doesn’t know any different because he has always had CP, it is the feeling of loss that I have over what he could be experiencing that is what really got me upset.

However, even while I am writing this blog I have to remind myself that, Without effort there is no reward. While it was painful to watch him struggle, there was an enormous sense of reward for him in achieving his goal due to the incredible effort he put into it.  He also learned that if he puts his mind to it, he can achieve it.

It’s not taking a pollyanna attitude to every heartbreaking situation, and saying everything is fine when it may not be. It’s about looking at the good that came from it – and not the bad – and reminding yourself that the struggle was worth it.

Thank you Daniel.

The Situation

Throughout Daniel’s primary school years he attended his local public school, for which he received funding from the government to provide for a teachers aide 100% of the time.  In Daniel’s case the teacher’s aide acts as his scribe, assists with eating, toileting and mobility around the school (pushing the wheelchair).

Without a teachers aide he is both stranded and helpless.

From the school’s perspective Daniel only requires the teachers aide to assist in mobility and therefore does not require the school to cater for any specific curriculum adjustments due to learning difficulties. Academically he is lucky in that he has been gifted with an (almost) photographic memory, which is probably as a result of not being able to write.

The Problem

With Daniel going into high school, Penny and I elected to send Daniel to an independent high school (non-government school) for many reasons, however, the NSW State Government has advised that Daniel will only receive 20% of the teachers aide funding that was previously available to him in primary school.

For everything else we have to go through as parents of a child with a disability, we are angry that we being discriminated against through our choice of school …

Government school = fully funded.

Non-government school = 20% funded.

Daniel summed up the situation better than all of us, My CP hasn’t gone away, so why should the funding?

The Result

The result is that until the government realises the error of their ways, Penny and I have to fund raise $30,000 per annum to pay for a teachers aide to put Daniel through high school.

The Alternative

This is the funny part … if Penny and I made the decision to send Daniel to our local government high school (and please keep in mind, that is our choice) the NSW Government, under current legislation, must prepare that local high school for disabled access. That would mean an investment of over $2,000,000 to prepare the school to be disabled friendly (this was confirmed with Premier Kristina Keneally).

Now I know the counter argument to this is the modifications to the school will be there for all of the kids for years to come, however, it misses the point – our choice of school for Daniel is being held to ransom by a government withholding support based upon which school we choose to send our child to.

In Summary

We are hoping that through our effort with the politicians, we can make a difference not only for our son but for other parents of children with a disability.

I would love to hear your thoughts …

(I have to pause and re-read that sentence again as, even now, there is still a level of disbelief!)

Now Penny and I don’t like crowded events and yet, through a friend, we received an invitation for Daniel to attend a Surfing for the Disabled event at Collaroy Beach on Sydney’s North Shore. The fear of Daniel swimming in our own pool provides enough stress, but the thought of going into the surf – open water, without a flotation device, in the hands of strangers, to be pounded by surf … (I’m feeling faint!)

Penny and I ummed and ahhed as to whether we would go or not but, oh boy, was it incredible – so well organised!!

We got there early and parked right near the event. There were tents, marquees and promotional vans set up all over the place, as well as hundreds of people in blue rash shirts marked volunteer – all eager to help. We signed in and were issued with water resistant wrist bands showing our name, as well as coloured rash shirts that clearly distinguished me as a primary carer and  Daniel as a participant. Everyone else wore different colour rash shirts to indicate their specific roles, so you immediately knew who did what. All of the participants were bright yellow so they REALLY stood out.

First they took us down to Collaroy pool and, like a well oiled machine, helped each participant into the pool and onto a board with 6-10 people around each one. There really were THAT many volunteers, it was incredible. Every one of them was there because they wanted to be – we felt we were amongst friends and people that genuinely wanted to make a difference in someone’s life.

As they put Daniel onto his board, I introduced him to the people who were helping us and he immediately said, I want to kneel up. I said to him, mate, hang on a minute! You have to learn to crawl before you can walk. His heart was racing and sure enough, before we had even got ourselves organised, he was already starting to get his legs underneath him, wanting to stand up.  Within a minute or two here he was, in Collaroy Beach Pool, and with a little assistance, standing on a surfboard. All the people around him let out a cheer and soon all of the other teams were cheering him on – it was quite amazing.  The smile on his face and the nervous giggling was AMAZING!

The next step was to take him from there into the surf. I wasn’t sure how this was going to transpire.

They carried him over to a board lying on the sand and laid him face down with his feet towards the surf. 10 of us then lifted Daniel and the board above our heads and carried him backwards into the surf like an Egyptian Pharaoh. Once we were (pretty far) out, I thought, Right, now what is going to happen … One of the guys at the front of the royal procession turned around and lay on the board, behind Daniel and, just like Bondi Rescue, they were off on the next wave speeding towards another group of 10 people waiting at the shoreline.

By the time I caught up with Daniel, he had a smile a mile long across his face and the people around him were asking, would you like to go again, which was greeted by a huge YES PLEASE! They took him back into the surf another three times. He was so exhausted when they were finished, his little heart was racing!

Daniel was so motivated by the experience, he noticed they were running a raffle with a surfboard and the first prize. He reached under his wheelchair and pulled out a small plastic bag of coins containing his school canteen money for the week and asked me to buy as many tickets as possible with his $15.80 in the hope he would win the surfboard.

While he didn’t end up winning anything, he certainly developed a passion for surfing!!

There was something else that really hit us at this event. It showed Penny and I there are hundreds of people out there who are prepared to help those of our community who have a disability and to give up their own time to bring light into the lives of others. Thank you to all of the management and volunteers that keep Surfing for the Disabled going, it was truly a fantastic, well organised and enlightening experience.

Whatever you do, don’t ever stop!!

The school has been amazingly supportive of everything that Daniel has tried his hands at, and although Daniel throws himself at everything with reckless abandon, there is always varying degrees of success.

On a physical level, the school has  always left it up to Daniel to choose which sports he would like to play – you can imagine our surprise when Daniel came home one day to announced he had enrolled himself in European Handball!!!

Don’t forget that he has moderate CP, makes use of a wheelchair and can’t hold himself still most of the time, so Penny and my reaction was, of course, somewhere between disappointment and disillusionment!  As a reminder,  however, I have also mentioned in several of my previous blogs how Daniel constantly surprises us with his ability to achieve in areas we thought impossible.  Sure enough, he surprised us again.  He rose to the challenge and spent the entire term playing European Handball with his peers – even his therapists could not believe it (see the blog posts, Never Say Never Part 1 and Part 2).

The school has always worked with us to develop ways for Daniel to participate at a physical and logical level  along with his peers. This allows him to be evaluated against the standard curriculum and achieves the fairest outcome for his educational measurement.

Just recently, we faced another one of those hurdles where we debated over whether or not we should intervene – choosing his electives for year 9.
Daniel loves art. Strangely enough, the topic that requires the most hands on work, and arguably the greatest level of precision, is the one for which he has a flair and the strongest desire.  In his last year at Primary School, with the assistance of a teacher’s aide, Daniel produced an astonishing piece of art which earned him high praise throughout his year.  The teacher’s aide on the other hand, who had to hold the pencil, pen and brushes, almost went berserk due to the constant instructions, corrections and directions which Daniel outlined in intense detail.

Although Penny and I were immensely proud of his achievement, every attempt to congratulate the teacher’s aid for assisting him throughout this four week long ordeal resulted in a glazed expression, a persistent eye twitch and an immediate loss of bodily fluids.

Needless to say, his painting hangs proudly at the Clarke Family home!

As he is in Year 8 and we are at the stage where kids need to choose their electives for Year 9. Daniel has chosen visual arts as one of his electives (and for those of us fairly removed from educational classifications present in modern day schooling, this is art).

What do we do?

Visual arts encompass working with tools and materials that are sharp, or hot, or pointy enough to take an eye out. At Primary School this was a new experience for everyone, however, in High School it really steps up a grade as the demands on applying a greater level of effort to achieve a higher quality result means the teacher’s aide will end up doing 98% of the project.  It also means there are occupational health and safety (OH&S) considerations for the teacher’s aides as they are not necessarily skilled in working with these materials.

So again, what do we do?

We decided that ultimately, we have to let Daniel make the final decision – he has to learn that he needs to take responsibility for the outcome of his decisions. We have, however, agreed with him that he must listen to Penny and I first so he understands our position on this topic.

As for the teacher’s aide predicament, this is not for us to decide.  If Daniel makes the decision to do this topic, then it is up to the school to decide as to whether they are able to resource it.  Of course, if they cannot resource the aide in supporting Daniel in this topic, then we need look for either alternate ways to resource this requirement or work with Daniel and the school to choose another topic.

This whole process leaves Penny and I a little ‘flat’.

As parents we watch the struggle Daniel has between his mind acting upon what his heart desires, and yet his body cannot achieve.

I will let you know how this goes!

He was sitting in the lounge room watching TV when Penny and I came in to tell him the news. While the first sound that came out of his mouth were screams of delight we thought we had anticipated what his first questions would be, When do I get it?, Do I get a choice?, Can I test drive it? …

You could have seen the blood drain from our faces when his first question was, How high can I jump it?

After getting over the initial shock, as well as having a bit of a laugh about it, we then started thinking of the other implications of receiving an electric wheelchair:

• charging
• transporting
• insurance
• usage
• social response.

Charging

Charging is not so much of a problem; buy two chargers, one for school and one for home. We will leave the wheelchair at school charging overnight and on the weekend bring it home.

Transporting

Transporting is an interesting question though… We ended up choosing a wheelchair that, after testing, we could dismantle it so that it would could be driven up into the back of our station wagon. Daniel can sit in a normal passenger seat of the car so there was no point in doing a $30k disability fit out of a 14 year old vehicle that had done 200,000 kms.

Insurance

As a project manager I am always on the lookout for risks and it suddenly dawned on me, what if …

• the wheelchair was damaged by someone or something
• Daniel injured a child at school by running or bumping into them (Don’t forget, with Daniel’s weight this wheelchair will weigh close to 130kg)
• Daniel accidentally ran into a parked car.

I rang the NRMA (our current house and content insurer) to find out. The result is we can have the wheelchair listed as a Specified Portable item and, under our contents insurance, we are covered for:

• the wheelchair’s theft from home, car or the school
• damage to the wheelchair
• damaged caused to property or people by the wheelchair under the current contents insurance liability cover.

Usage

This poses an interesting topic that perhaps people who use a wheelchair are much better to answer than I, but here goes …

As parents, we can tell Daniel what he can or cannot do with the wheelchair. We can also advise him that as he is now in control of a heavy motorised piece of equipment that he has to have a greater level of awareness of his surroundings so he doesn’t accidentally back up over people, etc.

On a whole other level is the concept of personal boundaries. Where does Daniel stop and public access start. This was something that I had previously had never considered before because as Daniel was always in his manual wheelchair it always took one of us to push him around but it has really important implications. For example, one of the kids at school, who is in an electric wheelchair, does not like his chair being touched without invitation as he considers his chair part of his body, i.e. Part of his space, his personal boundary. Just like us, would we have a conversation with a stranger while at the same time resting our hand on their shoulder? The answer is obviously no, however I am sure our friends who use wheelchairs have probably had this happen on the odd occasion (I would love to hear your stories on this so please reply).

The last topic is a beauty… Why does it have to look disabled?

Stay tuned for my next blog on this topic!!

Meanwhile, your thoughts and feedback on the above would be really appreciated.

You raised two important points:

• who determines the allocation of Department of Education (DET) Funding
• the responsibilities in regards to being told what can and cannot happen regarding a teacher accompanying your son to a cross country carnival.

Point 1 – DET Funding

We had the same experience with Daniel in Primary School. As a typical government department, DET is not expected to know the degree of disability every child has (the key word in this sentence is degree). How does someone like that quantify disability in regards to physical, emotional, mental, social, etc. in a way that will fairly allocate a limited pot of assistance funds?

The government’s response is to equate the level of disability into a number of support hours allocated to the school and, you are right, it is up to the school as to how this time is allocated and, if indeed, it is in fact allocated to the child that needs it.

In our case, as you would know from the blog, Daniel is in a wheelchair and cannot feed himself, toilet himself, scribe in lessons or push himself around, however, the DET only allocated support for him for 23 hours a week (a school week is 31 hours). In effect, Daniel would be without assistance, left alone, at school, with no adult for one day a week.

You are probably asking yourself … what we were thinking at the time, How bloody ridiculous! is that answer. What is he supposed to be doing during that time? Even if we took a teacher’s aide away from him at lunch time across the whole week, how is he supposed to eat and take himself to the toilet … it’s very frustrating as you already know!

We were fortunate that several of the people who managed Daniel’s teacher’s aide schedule were creative with the allocation of their time and subsequently were able to provide Daniel with care for the whole 31 hours. They could think outside the box, but occasionally we encountered people who did it according to the book and were adamant that nothing could be done … we had to go into battle for Daniel’s rights. Eventually we won but it took an incredible toll on Penny and me.

So my answer is this: the principal has ultimate discretion as to how the funds are allocated in order to support your children. The key is, you have to work with them as much as possible to achieve a happy medium. Be as flexible as possible as their hands are also tied and you are therefore relying on their creativity in order to receive the teacher’s aide allocation that your child deserves.

Point 2 – Teachers Aide Support for School Events

Your second point about the school not being able to appoint an aide for your son, so that he can attend the Cross Country Carnival and, as you have put it, he was told by the teacher that he was to remain at school, has me somewhat puzzled. If there was a teachers aid appointed by the school to be with him, why should it matter as to whether that person was at the school or not?

I don’t advocate anyone pulling out the discrimination argument as a first line of defence as, on the whole, I find everyone tries to do the right thing by us (providing you are trying to do the right thing by them first). If you have exhausted every other diplomatic angle and have been fair and reasonable in your approach to resolving this situation, then making the other party aware of the impact of their choices is very important before you take further action.

We (as parents of children with a disability) also have to be careful with the battles we choose to fight. Have you ever heard of the saying, You can win the battle but lose the war? This saying is really pertinent to my point … in every war there are many battles. Some battles we win, other battles your opponent wins – at the end of the day, it is the person who wins the most important battles who wins the war.

This analogy is important in the situation you are facing, because, for the next several years you are going to be in close contact with your school and you are going to enter into discussions on lots of topics. Your association with them will continue throughout this whole time and you will have invested considerable effort ensuring both of you are across what is needed for your children. By the time your children graduate from their school you can consider their graduation the end of the war … it is up to you to look back and see what battles you faced and won.

Alternatively you can set out to win every battle. You will end up burning yourself out and all the people around you and eventually you, or your family, will lose anyway.

My advice to us all is to be careful when we choose where to apply our efforts (we have our families to think of) and yet always stand up for what is right, what is fair and what is reasonable.

What has been your experience in regards to DET funding and the support you have received from our school system?

Just like primary school, Daniel has had a teacher’s aide with him in order to push him around in the wheelchair, scribe for him during lessons, assist him with practical tests, etc. There was, however, one thing that we did not count on – his desire to be independent.

Until Daniel started raising this topic with us I took my moments of solitude for granted.

That is, how many times have you said to yourself, I just need time to myself?, then acted upon that thought and promptly taken yourself away somewhere so you could just chill.As a young boy, Daniel has always had mum and dad with him and never knew any different. As his body changes, however, so have his needs and wants – one of which is to have time alone.

We realised, as Daniel is now exploring his early teenage years he is wanting to have time with his peers without having an adult around all the time to bear witness to every action and intention that he has. He wants to talk to his friends using school yard language without the fear of being corrected or perhaps even reported back to the teachers or school executive by the teachers aides.

How would you feel if you had a person with you ALL THE TIME. All day? Everyday?

Daniel summed it up nicely. He said, I feel like I don’t have any privacy. My little boy is growing up and as parents it is critical that we respect his development.

We had a meeting with the school to discuss ways in which we can maintain Daniel’s safety at school while, at the same time, provide latitude for him to have time with his friends. We came up with several ideas which so far have worked very well:

Penny is dropping Daniel at school earlier so that his friends get to play with him one on one for a little while before his teacher’s aides arrive (there is school yard supervision, however, nothing that directly impinges on Daniel’s privacy).

At lunch time, after feeding him, the teacher’s aides are taking their own break and allowing him time with his peers.

The teachers have advised they will look at ways Daniel can perform tasks in the classroom by himself so that the teacher’s aides are called upon only when required.

But the main crux of this blog post is a suggestion that came from one of the teachers. Can we get Daniel an electric wheelchair so that he can be independently mobile?. Everyone in the room (the other teachers) nodded in agreement and then looked at us expectantly as if that was our action item to take away and put in place.

What is amazing is, not only the costs involved in such a simple decision, but the cascading impact of that decision. Let me explain.

Penny and I are not new to the topic of providing an electric wheelchair for Daniel and investigated it about a year ago. At the moment we have a station wagon (estate car for my US readers) and we lift Daniel’s wheelchair in and out of the back of the car by hand. Daniel simply rides in the back seat of the car as a normal passenger so the purchase of an electric wheelchair has several implications:

it costs around $15,000 (AUD)

• it requires access to power points to be recharged at both/each location
• it weighs more than my wife and I can physically lift into a car (particularly with our backs in such a mess!)
• the size of the wheelchair requires we purchase a replacement car in order to hold the wheelchair ($50,000 – $70,000 AUD)
• we then need to have the car modified in order to allow the wheelchair to be driven, or lifted, into the car ($30,000).

So while we agree in principal that providing Daniel with an electric wheelchair is an excellent idea to assist in the development of his independence and self esteem, it also comes at a significant price tag of around $95,000 – $115,000. This is currently far beyond our reach.

We did however find a second hand Toyota Tarago at the beginning of 2009 that had been converted for wheelchair access. It was perfect for our needs, however, with the car being 6 years old, odometer at 180,000 kms and a price tag still around $62,000 it was not a sensible purchase.

I would be interested to know from my readers of the resources available to us when it comes to disabled access vehicles, conversions, second hand vehicles, etc.

Also, I would be interested to know what happened to you when you purchased your vehicle – what should I look out for?

Apart from the fact I liken, volunteering as a class parent on one of those trips to the slow and consistent pain inflicted when whipping yourself with a cat-o-nine tails, she was determined to spend quality time with William.

As she delivered this news, I could see her staring at me for some reason with an expected look. I stared back at her, antagonistically, with a look that reflected some 20 years of marriage. It took a few seconds for me to come to the realisation that she wouldn’t be home for 3 days and that she had the expectation that I would look after Daniel for that whole time.

With the skill of a well honed parent, she immediately interrupted the silence with a, You’ll be alright! as, I can only imagine, she must have seen the blood drain from my face.

Now, we all love to have time with our children, however you can’t dispute the fact that, over time, our parental roles develop in isolation from each other. Caring for our children in a direct and dependent manner had not previously entered into my job description.

I liken my experience to an email I received recently comparing the differences between men and women. It claimed that mums remember their children’s birthdays, boyfriends/girlfriends, favourite foods, favourite movies, favourite toys, etc. while dads are only vaguely aware that they share their house with small people.

With less than 21 days notice to prepare for my 3 day ordeal (and I was going to need every moment) I had to put a plan into action:

• 3 days of food – Check
• 3 days of clothes – Check
• 3 days of school books laid out – Check
• 3days of school lunches ready- Check (Rod’s handy dad tip … I found out later that you make the sandwiches on the day. By planning this particular task 2 weeks in advance I made the sandwiches inedible ;-)
• 3 days of pre-cooked dinners – Check
• A large wad of takeaway restaurant giveaways by the telephone – Big Check.

The planning was all going well when Daniel asked me, What if mum and William were delayed an extra day in Canberra …? I didn’t feel the impact with the floor!

I knew I had to implement a backup plan.

The backup plan was basic and yet contained the necessary components to sustain life … that is, putting the takeaway restaurants on speed dial and inquiring with the local pizza shop as to whether they serve breakfast.

Needless to say, by the time the big day came around I hadn’t slept for 2 days but took solace in the fact that the following 3 days had been planned to the minute with military precision.

The time I spent with Daniel was really great. It ended up being a valuable experience for both of us and gave us time to reconnect. We ended up with takeaway food every night (typical) and watching movies that mum doesn’t normally like watching – action stuff!

There is no doubt about it that looking after kids is hard work. I take my hat off to all those parents out there that have a sole responsibility – it must be enormously tough.

I don’t pretend that 3 days of looking after Daniel was comparable to being on my own all the time but it was enough of a reality check to know that I love my wife, not just for who she is, but for what she does for our family and the responsibility she takes on, on a 24 hour basis.

(I love you Penny)

Even with a modest, human sized, level of compassion how could any caring God do that … to anyone?

I do not have a religious background, however, I started looking into Christianity several years ago as a search for answers. This quest for answers was prior to Penny and I having children and yet, even when Daniel came along, there were still questions unanswered.

When the diagnosis came through that he had cerebral palsy, it again provided me with challenges regarding how a God could allow this to happen? In fact, according to what I have read, designed it to have happened?

Many people have suffered the loss of loved ones, been forced to witness the deterioration of family members at the hand of a sickening disease, or, in our case, live a lifetime of angst witnessing the struggle of a child with a disability.

What did I do to deserve this? What did my wife do to deserve this? Are we bad people? We have always lived our lives based upon sound values that are reflected in all religions such as: care for your fellow man, respect others, etc.

While I can’t answer the question as to why my child has cerebral palsy, I can at least choose the belief of how I handle my situation going forward.

For me, if there was ever a situation where my belief in a God was questioned it was when Daniel was born and it taught me this; my belief is in me, my faith is in my ability and my future is my choice.

The choices I make are my own and I take responsibility when acting on my choices. I have decided I don’t believe there is a God and I am fine with that.

There are, however, many stories I have heard where people have lost their faith after having their children diagnosed with a disability, and yet there are many who have experienced a strengthening in their faith from being ‘tested’.

There is no right or wrong answer with what I am posing here as we must respect each others beliefs. We all have our own opinion based upon our beliefs and I am sure we could all debate our positions well. The key to this blog post is this … respect.

So what happened to you when your child was born with a disability. How did that strengthen your faith, or, how did it rock your world to the point where it made you question otherwise?

We try and focus on the positives that come out of every situation. In essence, we always look for the silver lining in every cloud. We don’t deny the existence of the obstacles that are right in front of us, we just focus our minds on what is the good that will come from this opportunity.

I can only speak from my perspective, and I know your family situation is different, but there is one thing that is the same between you and me … we have the ability to choose our response to every situation.

How you perceive your situation is critical to your own mental wellbeing and health – your thoughts affect your health.

Would you believe me if I said that a thought can trigger a physical reaction in your body that you cannot control? I’ll prove it right now … close your eyes and imagine there is a ripe lemon on the desk in front of you, it’s beautiful. It’s so yellow and ripe you can smell the citrus flavours from here. Now cut that lemon in half and watch the sweet juice flow out of it. Pick up the half that you cut, bring it to your nose and smell it. Now open your mouth and bite into the ripe lemon and feel the juices flowing down your throat …

… so is your mouth watering? The text you are reading put a thought in your mind and it caused a physical reaction in your body.

The power of your mind is overwhelming.

Your thoughts create reactions in your body all the time. Picture this, if you go through the rest of your life with negative thoughts of, I can’t, I won’t, I feel tired, I am always upset, then imagine what these thoughts are telling your body and how your body is supposed to react to this.

Instead, look at a situation (any situation) and see what the silver lining is. There is always good in even the worst situation.

A friend of mine’s father passed away a short while back and, while this was tragic for my friend, we sat and talked about it for hours. His initial thoughts were centred around his loss and the grief he was feeling. I encouraged him to find the good that came from the loss of his father, and although it took a while, by the time we had finished he had identified several clear understandings in his, and his family’s, life that they could hold onto in a positive way when remembering his father.

Now I am not advocating going through life and taking a pollyanna attitude (that means someone who is blindly optimistic) towards everything, I’m saying, Acknowledge the situation for the facts as they present themselves, but focus your thoughts on the good points instead of the negative.

When we are faced with difficult times in the care of our children, it is sometimes very hard to identify that silver lining. Sometimes I find it is our belief systems that need adjusting to help us cope.

When have you found focussing on the good in a situation beneficial for you and your own wellbeing?

Have you been able to get your child in or near water? Does it terrify you that they would drown due to their inability to right themselves if they were in trouble?

All of these concerns plagued Penny and I, and for good reason. Even babies can drown in only a couple of inches of water, let alone young children (see my blog Complacency Kills).

So we set about tackling the problem head on. It, however, was not without its own hurdles. More importantly, we didn’t want to scare Daniel, so we started in the bath. We slowly dribbled water from his head down over his face and made a bit if a game of it. When the water went into his eyes, we met him with smiling faces and happy noises to reassure him of the positive experience. Once he got old enough, we started him with swimming lessons … but then came the first hurdle.

There is one thing that you have to do with a child in water, that is, keep them afloat! Surprisingly elementary! However, this is not easily done with some of the existing and traditional water flotation devices.

Do you remember those blocks of foam on children’s backs that have a tummy strap that goes around the kid’s middle? What a debacle! I am surprised they are still in use. Try this test. Get a large piece of foam and strap it to your back in water, what happens? It pushes your face down into the water because it wants to stay on top – not really successful.

We jumped on the internet and looked at several swim schools. At that time, however, there was a limited choice of flotation devices available. I am pleased to say that, lately, there have been some more creative solutions provided.

It took quite a while of trial and error because we were looking for a flotation device which provided a combination of the following criteria. It should:

• keep a child upright in the water with equal uplifting pressure all around its body
• not inhibit the movement of a child’s hands or arms so that they can play comfortably whilst in the water
• not require the flotation mechanism to be attached to the child’s arms, inhibiting their arm movements
• be able to keep the child’s head completely clear of the water, that is, the water level should be around the top of the child’s shoulders not make the child top heavy, putting them at risk of capsizing.

We were introduced to a product that was strapped around Daniel’s upper torso, but which was also sculpted around his arms to allow free movement. This device has been invaluable in allowing him to enjoy water and not have an adult right next to him all the time. This has significantly improved his independence and self confidence. As a result, Daniel has developed a genuine love of swimming.

What have you done to ensure you child has been introduced into to the water successfully?

There was a news story recently where a father of three children drove onto one of the largest bridges in Melbourne, Australia, stopped the car, removed his four year old daughter from the car and dropped her over the edge, then drove off.

According to news reports, the parents were going through a custody battle and in the court the day before they had agreed to share custody of the children.

From many angles this is a tragic story: his daughter, while initially surviving the fall, died later in hospital; the two brothers in the back seat of the car and the other motorists having to witness such an event; and the grieving mother who has to endure a lifetime of loss.

The other tragedy in this story is the father. No matter how you look at this terrible story, one of the characters (the father) was pushed so close to the edge that he chose a very dark path.

What were the exact circumstances leading up to this event? I don’t know. But it would be safe to say that leading up to this he was under a level of emotional stress that he was not used to, before breaking.

Did anyone see it coming? Friends, family …? Did he demonstrate any signs that were ignored? Who should have seen it coming? Could anyone have seen it coming? Was it spontaneous – a reaction to a situation in the car that spurred this response? Whatever it was, he was already on the edge and it just took something to push him over.

As parents of children with a disability, we have a lot more stress in our lives than other people. A friend of ours the other day mentioned how much stress she was under because her oldest able-bodied child wouldn’t clean his room. My wife’s response was priceless, Walk in my shoes for a day and see how you feel!

But what about the dads? How do we deal with our stress?

We are very poor at sharing our stories and perhaps revealing a weakness, but I have since realised that it is vitally important that we do talk to each other for our own mental health. I don’t mean sitting around in a circle, like an AA meeting, saying things like, Hi my name is Rodney, and its been six months since I talked about my son … and everyone cheers.

I mean seek to understand what is going on inside us and how we are managing it … Now I can hear you fathers out there reading this and saying, I’m managing this just fine, I don’t need that … Well maybe you are … but are you sure?

Maybe you aren’t the best person to answer that question?

So dads … what is out there to help us get our minds on the right track? Do we do it by ourselves or are there other groups, organisations or programs that can provide us with some mental relief?

I hope your New Year has started with a BANG! Ours did!

… and with every bang Daniel jumped out of his seat!

We were invited to go to our friend’s house for New Years Eve celebrations and as their house is positioned on the Sydney skyline, we were able to watch the New Years Eve fireworks on Sydney Harbour live for the first time in our lives.

Penny and I are not ones for crowds and, after having Daniel, we are particularly sensitive to having a child in a wheelchair amongst crowded party goers, so this opportunity was something not to be missed.

Have you heard of the Moro reflex – more commonly referred to as the startle reflex? The startle reflex occurs in response to any sudden movement or loud noise. An able-bodied baby will fling their arms out, fan their fingers, extend their legs and then quickly pull their arms back in towards their body in an embrace position. They, however, lose this reflex at around the 8-10 week mark.

Children with cerebral palsy don’t. In fact, most of the time they never lose this reaction and, in some cases, it becomes quite exacerbated.

Has it got you worried? Well it shouldn’t …

Over the years it has been quite a source of entertainment (for which Daniel erupts in fits of giggles and hysterical laughter). Each time we clap our hands or touch his shoulder he jumps (or more like flinches). Even if he watches our fingers approach his shoulder and he knows we are going to tap it (lightly of course) he still jumps. Then he starts laughing, we start laughing and soon enough we are all rolling around in fits of giggles.

So, as you could imagine, the New Years Eve fireworks includes a lot of loud bangs. It was hysterical to watch Daniel enjoy the fireworks, but at the same time jump with every bang even though he was expecting it every time!

For this reason, we ensure that glasses of water, and other breakable stuff, are never placed near his arms. If there is a sudden loud noise you can guarantee it will be smashed or at least end up on the floor.

There are quite a number of interesting articles explaining this in conjunction with CP if you Google cerebral palsy moro startle reflex.

Have you noticed the same thing with your kids? I would be interested to know. It’s all very well reading on the internet that it happens, but to hear it from you and about your experiences would be great.

There have been many times where Penny and I have looked at an activity in advance and come to the conclusion that Daniel would not be able to do it. We don’t do that anymore.

As time passes, we are constantly surprised at both Daniel’s ingenuity for working out how he can participate in games, as well as the ingenuity of his classmates …

Remember the game Knuckles (or Jacks) – you know the one where you throw five knuckles on the ground and you have to pick one up, throw that one up in the air while trying to gradually pick up all of the other knuckles on the ground one at a time? Daniel’s brother, William, wanted to play this, so while we were away on holidays we went to a $2 store and bought a set of plastic knuckles.

We explained to Daniel that this was not a game in which he could participate – how wrong we were!

We started showing William how to play the game … watch where all your knuckles are, pick up one, then throw this in the air and pick the others up one at a time. If you get through all of them, next time try to pick up two at a time, and so on.

Daniel watched intently. I can do that! he said.

My heart sank as I knew this was something that would cause him great frustration and eventually end in tears … once again, how wrong I was?

Daniel said, Dad, if you say GO, throw one knuckle up in the air and then yell STOP once you have caught it again, that should give me enough time to pick up the remaining knuckles on the ground.

We tried it and it worked BRILLIANTLY. I have never played knuckles so much in all my life and it ended up that the game of knuckles was the highlight of the entire holiday (we could have stayed home and saved a grand!) ;-)

The next one was card games.

Whenever we played UNO, we always showed our hands. This made it difficult for the game to get too serious, as you couldn’t employ a winning strategy when you could openly see all the other players cards.

Daniel’s school friends came around one day and started playing UNO and, within a few minutes, they worked out that if they sat at the coffee table, with their bottoms on the floor, Daniel was able to have his cards under the table so no-one else could see them. The dealer was also able to pass him cards (under the table, face down) or select the cards that Daniel wanted to play without anyone seeing them!

Penny and I sat back and were amazed at the ingenuity of the kids, to work out a solution that allowed Daniel to participate, and yet not spoil the game for the others.

We have learned over time to stop ourselves making the decisions for Daniel ahead of time based upon what we think. We now give anything a go!

What have you done with your kids to help them participate in games without affecting the games competitiveness? What other games are out there?

How would I know? I’m just a dad and really my wife handles most of this sort of stuff … I just pay the bills and weigh in on the debate when we start discussing how much it will all cost.

Daniel is at the end of year 6, so we are currently experiencing all the highs and lows of moving from primary school to high school. We are also experiencing going from the public system through to an independent school, which is also a bit of a learning curve.

Here are some tips on choosing a school …

Principal’s Attitude

When your child is young and you are looking for a primary school, be aware of the attitude of the principal. Like any good organisation, the culture of its people is a direct reflection of the attitude of its leader. If you meet with someone who you think is not the right fit for you, then think again.

Why is the attitude of the leader so important?

Team Effort

From the time your child starts school you are no longer just two parents putting your kid through school – you have to start looking at it as a team effort. This team effort is shared between you, the principal, occupational therapists, physios, integration consultants from the department of education and, of course, your child’s teacher.

You have to be able to work with the executive committee of the school as a team. If there is someone in a commanding position that, for whatever reason, does not agree with you or the needs of your child, then that will be a stumbling block the whole way along the road.

Allow Enough Time

On the whole, we have found people in the education system to be particularly receptive when you provide them with enough time to respond and plan for the integration of your child into a school. Don’t forget that integrating a child with special needs takes time and planning; it’s like turning the Titanic, you can spin the steering wheel, but it will take a long time before something actually happens.

Providing you take a cooperative approach, our experience has shown these people will go out of their way to assist.

Manage their Expectations (Profiling)

Please remember that these people have never met your child, so have a look at a previous blog post that will assist you in helping to manage their expectations and ultimately assist you: Your Children – Start with the End in Mind.

CP Awareness Training

Before Daniel started at school his teacher, fearing the worst, put herself through a training course on teaching children with a disability. This was fantastic and as parents we recognised the initiative of the teacher and were reassured of the proactive nature of the classroom he was going into.

The school also worked with a disability program called Wheelchair Roadshow to bring 20 sport wheelchairs (those really fast ones they use in the Olympics) and got Daniel’s class to use them in the school hall as a sport event.

The kids really understood what it was like to be in a wheelchair, but they also had a lot of fun too. Daniel stayed in his wheelchair and was able to compete with them all at the same level. Not only was it the best workout he has ever had, but it brought him and his classmates together more.

Bullying

I was terrified that my son would receive bullying and abuse from children zeroing in on someone that was different, however, I was pleasantly surprised that the opposite was the case.

From the time he started school it’s been interesting, in terms of child psychology, that he was seen as untouchable. Much to my relief, it was an unwritten law that you don’t pick on Daniel and everyone knew it.

Does anyone have any questions, concerns or experiences about integrating their child into school that they would like to share?