Helping Max Reach His Potential

Back to blog2 years ago by Jodie on behalf of Fiona Keary
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Canberra mum Fiona Keary with her son Max who has cerebral palsy
 
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Canberra mum Fiona Keary talks about the difference supporters make to the day-to-day life of her little boy Max.

‘Our son Max smiles and laughs just like any other child. He cries and throws tantrums like any other child. He loves vegetables and hates chocolate, prefers Playschool to Sesame Street. …

Canberra mum Fiona Keary talks about the difference supporters make to the day-to-day life of her little boy Max.

‘Our son Max smiles and laughs just like any other child. He cries and throws tantrums like any other child. He loves vegetables and hates chocolate, prefers Playschool to Sesame Street.

But most importantly he is loved and adored by his parents, bossed around by his brother and spoilt by his grandparents and extended family.

Our son Max has cerebral palsy. In 2010 he was diagnosed with spastic quadriplegia which means his limbs have all been affected to varying degrees as well as his torso and head control.

Max has difficulty feeding and will have significant challenges when it comes to speech. We don’t know for sure what the future holds for Max – we do not know if he will walk or feed himself or be able to manage the everyday tasks that we take for granted.

We believe that anything is possible – something that may be challenging today may be made easier tomorrow through medical advancements and technology.

Max’s diagnosis was not a shock given the complications with his prematurity, but nevertheless realising the extent of his disability was devastating.

I hope that when people hear stories like ours they’ll understand why we appreciate Cerebral Palsy Alliance and everyone who supports them.

Each family has a story to tell and each family faces different challenges but the one thing we have in common is the desire for our children to reach their full potential and that the support from Cerebral Palsy Alliance is integral to this.

So this is our story – Like many premature babies Max’s entrance to the world was somewhat dramatic. Born almost 12 weeks early 2 days before we were due to return to Australia after 7 years in the UK, some speculate that Max was just after a British passport like his brother. We had just sold our house, shipped our belongings and were on route via a play cafe to sell our car when I went into labour. I remember that morning after I had been signed off by a midwife to fly that Geoff and I had high-fived our luck (and of course my amazing organisational skills) that everything had gone to plan and that our move home was going to happen without a hitch. How wrong we were and how naive we were to how much our life was about to change.

Max was born by emergency C-section, weighed a decent 1.2kg and was doing really well considering his gestation but unfortunately on Max’s third day of life he suffered a massive pulmonary haemorrhage which we believe led to a significant brain haemorrhage. We were warned of the implications of this but at the time those thoughts were put to one side as Max fought for his life.

And fight he did. You see Max is very determined. After 9 long months, numerous medical interventions, surgery and weaning him off an oxygen tank that he was extremely fond of we were given the all clear to return to Australia.

The first few months after returning were pretty difficult. It was then that the realisation of Max’s disability really hit us and a lot of time was spent trying to link up with the right services and work out what we should be doing.

Max was getting to the stage where he was almost a year old but was unable to sit up or keep his head up very well. This made meal times extremely difficult – often taking an hour to get through a one course meal or a bottle and by the time he had finished he had used up the same amount of calories that were contained in the meal.

Max was also in position where he was limited to a few views of the world, from the floor or in someone’s arms. And needless to say he preferred the latter.

When Max was almost 12 months old, we made an appointment for an intake meeting at Cerebral Palsy Alliance. The intake meeting exceeded our expectations.

 

After going to so many appointments and leaving with a sense of loss Cerebral Palsy Alliance made us feel positive about what Max can achieve. It was a relief to have an open discussion about Max’s abilities as well as his current and future needs.

But the most unexpected and cherished outcome was to be given the loan of the ‘Giraffe’ chair. It changed Max’s life and ours as well.

  • His feeding improved, he found it easier to swallow and was able to gain some weight
  • He was able to engage with his older brother Oscar and other children
  • It became much easier to include Max in family activities
  • He was able to engage in independent play
  • We were able to go out for a meal, visit friends and family

What would we have done without that chair? How much in developmental gains would he have missed out on? We are so extremely grateful.

Since then we have benefited from so many wonderful early intervention and equipment services. We’ve also used the orthotics clinic which means we are able to access orthotics in Canberra rather than making a 7 hour round trip to Sydney for sometimes as little as a 15 minute appointment. We also participated in Cerebral Palsy Alliance’s CP Check-Up program which regularly reviews children to help identify areas requiring attention. This review also helps us to understand what Max’s future abilities may look like and how we can plan for that.

We are currently working on communication technology options for Max and also trialling a power chair. Both will provide Max with learning opportunities and independence.

Again we may be naive but we believe he has so much potential and my greatest fear is that we miss the opportunities to reach his potential.


Cerebral Palsy Alliance has also been a great resource for my husband Geoff and me. To get answers to questions which are difficult to ask and answer.The team in Canberra are fantastic, they are specialists and we feel supported and know that they are as motivated as we are to see Max reach his full potential.

When Max was 2 years old, he had a pretty tough time with 4 stints in hospital, 2 requiring surgery. One of these surgeries was a shunt revision (in addition to his CP, Max also has hydrocephalus) as his shunt blocked over a 5 month period which resulted in Max taking a backward step developmentally until we worked out what the problem was.

But during following year Max’s development progressed in leaps and bounds. He has his own chair, received some BOTOX® (unfortunately they didn’t offer a two for one deal) and a second skin (in lay terms it’s like a corset that provides stability to his torso), it supports him and means that his eating has improved and use his arms and hands better. He started drinking from a cup, fed himself finger food for the first time, learnt to sit unaided on the floor for 5 minutes and could stand in a special frame for up to 30 minutes when wearing his second skin.

We take each day as it comes celebrating Max’s successes with a dance of joy and some tears.

Don’t get me wrong, there are days when there are more tears than laughter, more steps backwards than forwards. I have had to learn patience and accept that I cannot plan for everything.

We have the fantastic support of our families and friends and in particular our mums who are always ready at a moment’s notice to accompany us on medical appointments both here and interstate, offering endless babysitting of my older son Oscar whenever Max has a therapy session or when we just need a break.

We can do all of this because we have the support of Cerebral Palsy Alliance. None of this has been or is possible without your support. The difference these services have made to our family and many families across the ACT and surrounding region – priceless.

With your support we are all helping Max reach his potential.

So thank you for your generosity, we are so very grateful for your support of Cerebral Palsy Alliance, and in turn for Max.