Friday, 28 April 2017

What About Therapy?


Cameron 8 months old with his first Physiotherapist
He was placed in this position and could only hold it for a few seconds before collapsing

We have recently gone through a funding process with Cameron and it's been very confronting and depressing. Amongst all the questions we were asked was one that we were repeatedly asked -
What about therapy?

Cameron no longer accesses mainstream therapy - occupational therapy, physiotherapy or speech therapy. This is being strongly questioned and it is being inferred that we are not doing the right thing by Cameron by not accessing these therapies. This has made me question myself and my parenting decisions, as well as made me incredibly angry and hurt.

Cameron developed Pneumococcal Meningitis at 5 months of age. At that point Cameron was developing normally. He could suck and eat pureed solids. He could sit up with support and stand with support. His grasp was developing nicely, he'd learnt to rip paper and hold toys. He was babbling and laughing and could express his emotions. He was very sociable and liked to watch the world and interact with it in a tactile/sensory way.

When Cameron woke from his coma he had less abilities than a new born, He had no muscle control. He appeared to be unable to see or hear. He could no longer suck. He was limp and the only way he expressed himself was through crying and it was a pained cry. If you have ever been around brain damaged babies you will know, they have a very distinctive cry. His eyes were blank and you would only know he was awake if you saw his eyelids open or heard him cry.

Cameron couldn't suck so he couldn't feed. He was tube fed. My mother stood by Cameron's cot and decided that she was going to reconnect his brains pathways so he could suck. For two hours she pushed and pulled a dummy in and out of Cameron's slack mouth and slowly but surely Cameron's brain started to spark and his muscles remembered their prior learnt behaviour. Cameron learnt to suck again.

Eventually Cameron's eyes started to see and his ears started to hear, those pathways reconnected in his brain. As soon as the doctors were able to remove Cameron from all the equipment which was supporting and monitoring his body the therapists moved in. We had multiple daily visits from the physiotherapists and daily visits from the speech therapists and occupational therapists. We started hydrotherapy and our days were busy with doctors and therapists coming and going from our room all day. For those who don't understand - at that stage a speech therapist is working on developing muscles which will be used for speech, so they are interested in eating and drinking not actually speaking.

When Cameron left hospital the therapy just kept increasing. Very quickly we were doing therapy all day every day. We would go to all the therapy provided by the hospital and government and then we would also pay for private physiotherapy, speech therapy and occupational therapy. We had further therapy that we also did at home ourselves and we researched and found alternative therapies which we hoped might also help Cameron. When government provided services ceased we went out and found private therapists to replace them. This was my full time job, our bank balance disappeared but that didn't matter because we were on a mission to wake up Cameron's brain, reconnect the broken neural pathways and then to help his brain develop normally.

Cameron at RDA Brigadoon finally able to sit up and support his own body weight with support

We purposely sent Cameron to a special education school so he would receive a therapeutic based education. He was then also able to receive therapy at school from physiotherapists, occupational therapists and speech therapists. Throughout school we continued to access any available government therapy outside of school and continued to pay for private therapy and alternative therapies as well.

Cameron at RDA Swan Valley able to sit independently on a horse without support

Whilst all that happened Cameron's epilepsy developed into horrendous seizures which lasted for hours and occurred every 3 to 4 months. It became apparent very early on that these seizures were not harmless and they were damaging this brain. Over the weeks following each seizure we would watch and observe what damage had been done and which neural pathways had been disconnected. It became devastating to see him wake up less capable than he had been the day before, months and years of therapy and achievement gone. It took us years to teach him how to blow out a candle, developing breathe control for speech - gone and only just coming back slowly now 15 years later. Toileting gone - Cameron went from being almost toilet trained to looking at a toilet as if it was a scary monster and being terrified. We are still not back to being that advanced in toilet training 10 years later. At around 5 years of age he had a usable vocabulary of signing words which all went and today he only remembers - eat, drink, toilet and occasionally he recalls - more, help and hot.

Cameron doing therapy at The Institute of Functional Neuroscience

After school had finished and Cameron had transitioned out of the children's hospital and government provided therapy services we made the decision to stop accessing mainstream therapies. This was not a rash decision. At the Institute of Functional Neuroscience we had seen significant changes in Cameron, his epilepsy was under control and we had weaned him off all medications. When we made that decision Cameron had already achieved more development in a few years at the IFN than he had in all the previous 19 years of therapies. The only other therapy which had made such a significant impact for Cameron was Riding for the Disabled.

Today Cameron is still continuing to improve, his epilepsy has not returned and we are starting to see some movement towards toilet training. We've also noticed an increase in attempts to say words. He is developing at an extremely slow rate but it is developmentally appropriate. He is currently around a 2 year old in development.

Because we were repeatedly being asked if we had considered therapy I started to seriously question our decisions about Cameron's therapies.

Had we done the wrong thing going to the Institute of Functional Neuroscience?
Should we return to mainstream therapies?
Had we made the wrong choices?
Are we doing the best thing for Cameron?
Would mainstream therapies at this stage be a wise use of money and time?
Should we be doing both?
Could our family cope with the stresses and demands of mainstream therapies again?
Could we afford more therapy?
Am I just being stubborn and pig headed?
Am I being narrow minded?
Why is this distressing me so much?
Am I going insane?

After some serious discussions with family, friends and professionals; and stressing a lot, I started to understand what was going on.

We have made the decision to use a therapy which is not recognized by the government. We also still use RDA for therapy and it is also not recognized as a therapy by the government. The system doesn't understand our chosen approach but to us it is common sense - we are using therapies which are making a difference. Why spend money and time on therapies which have not made a positive change just so that people can tick a box?

Cameron can not be taught to do something that his brain is not wired to do. It doesn't matter how much speech therapy you give him or how many reward charts you set up for toileting, if his brain has not made the developmental connections to learn and retain that learnt behaviour he just can not do it. That is what the IFN is trying to do, help Cameron's brain to develop normally. He has reconnected all the pathways that had connected before he got sick and now we are in uncharted territory trying to connect pathways that never had the opportunity to connect when they should have.

It is never a bad thing to question your decisions. To step back and take an audit of the situation. However it is extremely distressing when the mainstream system wont acknowledge that something out of the norm is actually working. We experienced this previously when Cameron's brain showed no seizure activity for the first time during a hospital EEG. The hospital didn't ask if we had done anything different or had a discussion as to why this change had happened. To this day the children's hospital does not know that we took Cameron to the IFN and they never questioned the changes. The saddest part of that is that other children have missed out on trying what we discovered.

I don't regret any of the decisions we have made. They have been right for Cameron who is just a little different to the normal and definitely doesn't fit the box. It would just be nice if professionals who haven't even met us could accept that we always put our child's best interests first and have spent a lot of time, money and effort to do everything possible to help him live the best life possible. Instead of trying to make him fit in the box just accept that the box isn't always the right shape.

8 comments:

  1. Jane you and your family have done the right thing for Cameron he is loved, cared for, nurtured. I enjoy reading how well Cam is developing and this is all down to you Jane. You are doing the right thing for Cam xxxx

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    1. Thank you Wendy.
      I think writing this post has reminded me of how far Cameron has come. It's a miracle he is even still with us.

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  2. You have put in so much over the years. Cut yourself some slack and do what YOU think is right for Cameron and for the quality of life for your family. xx

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    1. Thank you Bright Side of Life.
      Writing this post has helped me to remember how hard we have worked, how far we have come and the obstacles we have had to overcome. Bit of a therapy session.

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  3. I feel wholeheartedly that you are on the right track Jane. With stroke victims, the brain can relearn pathways but with children they have to be shown, taught and loved. You are doing just that. I believe what you are doing is perfect. I admire you for your courage and determination, your love and patience and your belief. Every positive outcome you celebrate is deserved and I feel it for you too. Keep strong :)

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    1. Thank you Margaret. We will keep the faith and continue to do what we believe is right.

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  4. I accessed a similar therapy here for my daughter and it did have some benefits - but I saw others who gained their disabilities after birth achieving sensational results - and none of us told the State disability services! Keep doing what you're doing, it's clearly working and it's great to read about Cameron's progress xx

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    1. Thank you Candi. I'm glad your daughter saw some benefits from her treatment.

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