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CP Kids NZ

One kid's journey and a Mum's aim for better therapy options in NZ

Our Journey

So how did we end up here?  After a normal pregnancy and a scheduled C section (my first son was emergency C section and it was deemed unlikely Oscar would get out unaided) , then life seemed to be fine.  A small hiccup the night he was born when his oxygen stats were low and they took him to Nicu overnight but nothing to be concerned with it seemed.

Oscar though, only ever looked to his left, but he was a gorgeous happy baby who fed and slept well.  There is just short of 2 years between Louis our eldest and Oscar so I had some similar time of year experiences to compare things.  At 5 months Oscar would hold his bottle with an open left hand and a closed right fist.  At around 7 months I thought that there was something amiss, in the highchair it seemed like he was over reaching for items and he never bothered to look over the edge if he dropped something.   Despite some well meaning views that Oscar was ‘fine’ I was beginning to believe things were slower to progress.  After all Louis crawled at 10 months and walked 15 months so I was not comparing one keen to move with one not keen to move.

Oscar’s first Christmas highlighted that at 9 months he was not sitting unaided like his big brother had.  So in early 2008 I went to our Plunket appointment with concerns.  That kicked up a vision test (OK) and a referral to a nuero development therapist (NDT).  By the time we saw Rosemary the NDT Oscar had just started to sit in a very wobbly manner but she agreed it was slow to come and we should seek a developmental paediatrician’s view.

I saw locum doctor as my own doctor was on leave and I got a platitude that was rolled out that families like ours shouldn’t have to hear.  ‘They all do things in their own time’.  Actually some of them do not.  More often than not mother’s know when something is wrong and he was not my first baby.  I did get my referral as we were paying privately anyway and it was no skin of the public health system to get what I asked for but not without some robust debate!

The Developmental Paediatrician told us that it was either a mild stroke or CP and to come back at 18 months if he was not walking.  The NDT continued to visit us fortnightly for an hour and to give me some things to try and strengthen him up.    At 16 months went to Europe for 3 weeks and I told my husband that when we got home we needed something more intensive.  Oscar could roll and pivot but he was no where near crawling let alone walking.  Our NDT told us we really only had one choice  – Conductive Education.  She told me it was hard, we would struggle with the rush hour traffic and usually most families in the Whangaparaoa/Hibiscus Coast area lasted no more than 6 months.  She said I’d find it hard as I would see kids way more disabled than Oscar but she told us about it, and she gave us a chance to try it.  Something that many paediatricians would not tell their patients families about.

We also went to a neurologist and he organised an MRI for Oscar.  It confirmed CP with nothing remarkable showing damage beyond some delayed myelination.  With that diagnosis we went to Conductive Education and met an angel named Gaby Tomay.  She assessed Oscar and said ‘We can help’.  That was one of the hardest days of my life as I really wanted her to tell me he would be fine and it wasn’t necessary.   That was  Thursday and the following Monday we started Conductive education 5 mornings a week term time from 8.45 to 11.30am.    We had a six week trial and it was difficult for both of us – Oscar cried a lot because we made him do things, not painful things but when he’d been able to roll and pivot and play with what took his fancy focusing him took a little getting used to.  I cried as it was hard to come to terms with an unknown future and wondering how we would manage a business and this therapy schedule.

We were blessed though, at 5 months we got our first nanny just for 2 days a week, then 2.5 days then when his therapy kicked in we were lucky that Kara jumped in boots and all and we shared the therapy run.  Without such a supportive and loving nanny in our family it would have been much harder.

Oscar achieved a lot at Conductive (now called Glowkids) – with great conductors Judit, Gaby, Zsofi, Illdi and Zsofia.  All amazing and all gave us the skills to make sure Oscar was pushed to develop independence.  He crawled at 20 months not in a pretty, fast or left/right traditional patterned way but he got there.  He took 28 steps in his support boots at 3 1/4.  By the time he was 3 3/4 he took about 5 wobbly steps in his bare feet.  By the time he started school he could walk about 3 or 4 steps unaided and then would often fall.  At that time he then was out of Conductive Education care and now under the MOE which meant no PT, OT or SLT beyond some ‘guidance’ to his teachers.  The therapy that made him was at an end.

So now 4 years after receiving no therapy I decided we needed to find other options to give him some dedicated and intensive therapy.

 

About

This site and blog is to create awareness and to develop the fight for our CP kids in New Zealand.

I’m a mum to three boys Louis, Oscar and Jude.  I am the Chief Operating Officer at Straker Translations a company founded with my husband Grant Straker.  Oscar has Ataxic Cerebal Palsy  (CP) and right now I’ve had enough of the inequity in our healthcare system in NZ for our CP kids.  The reality is stroke victims get more therapy and options as they deemed capable of recovery and it seems that our CP kids are not.

It is time that as parents we came together to say this is not right.  If we want to change the disability stats for our kids and allow them as active, full and engaging lives in which they earn and contribute to our economy and society then we need to get them good Occupational Therapy, Physical Therapy and Speech Language Therapy.

I hope you will join me in this fight.

Nueroplasticity

A few years ago I read a book by Normon Doidge ‘The Brain That Changes Itself’.  I was incredibly inspired as it validated my past reading on the subject of neuroplasticity.  This is based on the fact that the brain is not a finite level of development capability as thought in the past and the fact that it can recover and improve therefore is ‘plastic’ in its capability to learn with the right inputs.   This means there is the ability for kids like Oscar to improve by creating new neural pathways and forgoing some of the ones that were faulty for them.  That especially important when CP is finite impact on the brain and is one they can continue to improve upon and is not a degenerative issue.

In Normon Doidge’s book there were  two key programmes of interest to me.  Firstly, Barbara Arrowsmith  who has created an amazing training/education programme and which was available in New Zealand via a couple of School’s but not where we were.  It was topical as at the time one of the NZ documentaries ran a programme on her approach in the US/Canada.

Secondly, a programme from the US sold to NZ via an Australian company with a programme called ‘Fast ForWord’ developed by neuroscientists in San Francisco.    That was a programme that we could do and as our oldest son was having a few issues at school as well I enrolled by Oscar and Louis in it.  They had to do 30 minutes on the iPad or laptop a day for 5 days a week.   It is not a cheap programme AUD$843 for 3 months and at 30 minutes a day versus the 45 or 60 minute option per day you can’t get through the course in that time.

However, I felt like we were proactively doing something to help Oscar beyond the normal education system.  The programmed worked wonders with Louis and really boosted his reading age in about 4 months from age 8 to up to 11+ and he was 9 at the time.

With Oscar it provided insights into some of the areas he was having issues with such as phonological awareness.  There were some tasks that he struggled with and sequential instructions such as locating an image of 4 where ‘the big girl pulls the small boy in the red trolley’ threw him.   We got improvements but he also got a bit antsy about it so we moved to doing it at school but we couldn’t always achieve it.  We’ve stopped for now but it is something I may come back to with him next year.

Why is Nueroplasticity as a concept important?  Because it validates that if an adult stroke brain is capable of relearning tasks they knew before their stroke in an ageing brain why on earth are our CP kids not capable of the same?  Logic dictates a young brain has greater potential to learn than an older degenerating one.  However, the approach in New Zealand seems to have vastly different outcomes.  In NZ we provide intense therapy for stroke victims and put expectations on recovery.  Our CP kids though, once they turn five do not get the same treatment.

Normon Doidge has a new book out that I have just downloaded to read ‘The Brain’s Way of Healing’.  I would encourage other families of CP kids to get  copy of these books to help you understand what the brain is capable of and why would shouldn’t accept a mediocre outcome for our kids.

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