CP Kids NZ

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



Speech Language Intensive

Notes below from our July/August week at Step by Step and what we focused on and future goals now we are home.

  1. Huge improvement in his belly breathing and strength and capability to get our more than 4 words in one breathe over his last visit
  2. Saying the end sounds of words is exceptionally hard work so they chose to focus on intonation and adding more words.
  3. Oscar talks in ‘statements’ rather than utilizing questions and as we are getting better communication we have actually just accepted it.  Additionally, more words allow better understanding as some words are clearer than others and we can start to deduce from those additional words more context.
  4. Redirecting him instead to provide a complete question before we will respond eg: ‘What’s that Mum?’ needs to provide more info ‘What is that blue car over there Mum?’  If not enough info then I will ignore him until he works that out.
  1. Singing – I haven’t managed to get the singing into his world and we have a self consciousness issue to deal with here.  I had found a Karaoke app but he does not want to do it.  I am thinking that I will have to go back to looking at a music therapy option once a week potentially if I can fit that in and find a suitable practitioner up our way..
  2. The Hare and The Tortoise Play – they worked with Oscar on this for the entire week in which he had to alternate being the Hare (fast) and the Tortoise (slow and steady). They used this to get him to drop his voice for the Tortoise and slow it right down and speed up and make it high pitched for the Hare.  They used arm/body movements as well to help with the visual side of it.   Oscar really enjoyed this and they think it might be  a good thing to factor into his learning if possible some small plays.  

We went back!

Oscar improved so much after our Step By Step intensive last year that in July/August of this year we went back.

This time it was only for 5 days based on what we could fit in around a rather crazy work schedule so we couldn’t get as much done.  This time we focused on OT and SLT.

One of the great outcomes I got was a chance to stand back and look at how Oscar had improved which included some of the following:

  1. Straighter and stronger gait
  2. Breath control – one of the issues we have with Oscar’s speech is last year he could get 3-4 words out on one breath.  We incorporated a range of activities to work on that with his SLT that comes to school and his TA during varying activities in class.  It worked and I hadn’t really noticed it!  He can now get 8-10 word out in a single breathe
  3. Fine motor skills – his co-ordination there has improved and his ability to pick up objects was better
  4. Swimming – last year we really needed some bouyancy support and the Wet Vest helped with that.  In the last year Oscar can now float front and back and swim in his own way.  He is far stronger on his back I think as his is tone is lower on the front and naturally is more bouyant on his back.  However, in one of the last swims in the sea in May of this year he actually jumped off our boat with no bouyancy aid and swam from the side around to the back to get back up on the boat.   So pleased for him to get this far
  5. Reading – Oscar is still behind in his reading but is currently tracking 8.5 years to 9 years and is in Year 5.  I am fairly certain the kick he has got here this year relates as well to the work his SLT is doing on phonetics, blends and sounds to aid his spelling and comprehension as well as the fact he can write his spelling words now rather than just do them on the iPad.  He wants to read like his mates but struggles.  I have found an app called Bookshare International for vision impaired that runs on an iPad and is configurable to highlight and/or read but so far school and Oscar are not that keen on working with it.  I think it would truly aid him so I’ll put that in the mix in our Summer holiday break.
  6. Jumping – Oscar can now jump with a more even combined jump.  Last year it was very much one leg dominant and advanced but this year it is more even.  This gives me hope that eventually he will bounce on the tramp like all the others 🙂

What are our challenges still?

  1. Vision, vision and vision – this is still a major problem and we don’t really have any options to resolve this for us but we do have some strategies that Tracey the OT put in place around light boxes that help him and we are incorporating that
  2. Working Memory – an interesting test we had was with a 4 letter nonsense word on a sepia coloured paper.  Oscar struggled when first tested with this – he got 7 seconds to memorise it ‘say it backwards Oscar, say it forwards Oscar, what is the middle letter etc. However, when the same card was put on a lightbox with a yellow clear background behind it then he could do four letter words.   So we have some ways to work on this and also playing cards, explaining rules etc
  3. Eating – oh my word is this a really difficult area for us.  Oscar loooooooves food!  However, his fine motor skills means that his eating is messy and uncordinated.  He mostly uses a spoon, cannot use a knife to cut and struggles with a fork.  This was one area I asked specifically to focus on
  4. Speech – so while the breath support has aided him, he still has difficult with many ends of word blend sounds and still it is hard to understand Oscar but the communication has improved from Oscar so we will keep plugging away at it.

I was so pleased to be back with Pia and her team, it feels like coming home.  They focus on all of Oscar and put so many pieces together that change outcomes for us that I cannot thank them and Karen Pape enough for what they are doing for us.

I’ll add some specific posts on our recent trip soon.

The amazing Tomatis

Having read Norman Doidge’s The Brain’s Way of Healing it has opened up my thoughts to the benefits of Listening Therapy.  The book itself is not solely about that but details how a Parkinson’s sufferer has used really focused walking exercise and changing approach in how he picks up things to overcome many of the symptoms of this debilitating disease for over 20 years.  There are also stories about the benefit of PoNs, device that is placed on the tongue like a lollipop that provides stimulation through to the brain – amazing gains for those with brain injuries, parkinson’s etc as well.  While I’d love to get access to PoNs that is still in the clinical trial stages as some truly amazing results with balance, co-ordination and muscle strength.

However, something we can look at and that is available in New Zealand is Tomatis Listening Therapy.  Wow…  This chapter I read spellbound in terms of the implications not necessarily for Oscar but especially for kids with Dyslexia, ADHD and Autism.   Tomatis was a French ENT who started working out the difference between listening and hearing by trying to help Opera singers get over problems they were having which were actually not based on the larynx but rather that they could no longer hear tones they once used to be able and therefore could sing the same.

There is an amazing centre in Toronto which Paul Mandaule, himself initially one of Tomastis’s clients who overcame huge issues to then become a doctor himself and to really target this therapy for others.  Before I worked out there are a number of  practitioner’s here then I was ready to head there with Oscar because he is so passionate and experienced in this field.  You can find out more about it here

However, this week I was in Nelson for a Breast Cancer Fundraiser for my sister-in-law who is currently undergoing treatment for breast cancer and not more than 400 metres from there house is a dutch practitioner of Tomatis that has moved to New Zealand.  It was an amazing hour to talk to her about the potential and what it changes.

The base premise is that using low and high frequency interventions of both music, chanting and in a child’s case the mother’s voice as you progress retrains the listening ear.  This has implications on speech, learning and is proven worth doing when learning another language as we grow up hearing the tones and frequencies of our own language which makes it harder to harder to lower tones or higher tones used in other languages.  This is why it is easier to learn additional languages as children as our ears haven’t already focused on set range of frequencies.  All that is interesting in and off itself to me in the context of our translation business.

The process is one where they customise what the child or adult is to listen to and then they listen to this for about 2 hours a day which a headset that is cordless and allows them to do it as they play, eat, etc.  The original Tomatis approach only uses the headset but a psychiatrist whose daughter had fetal alcohol syndrome Ron Minson created a new approach called iLS that uses both some gross motor functions as well as the listening.  This centre is in Denver and their website is Integrated Listening.

There is also an active centre that operates in Auckland and Tauranga  run by Rosemary Murphy called Develop Learning and I have had a detailed discussion with her about the benefits for Oscar.

The hard thing is they benefit from its use 5 times a week and it can be done at home but there are sessions with the higher frequency part of the programme that needs to be done in the centre.

The therapy itself makes a lot of sense to Grant and I based on his knowledge of music and tone and how the brain can change.  I know we will be factoring this in for Oscar but it might be for us given we are heading to Denver in November for a few weeks that we get underway there  at Integrated Listening and then come back to the the centre in Tauranga/Auckland for the next phase as it does work in phases.




Video’s over the years

A selection of video’s showing Oscar’s progress since about 18 months of age.  Hopefully this is of help to other families on this journey as my biggest need when Oscar was younger was trying to work out ‘what will he be like’ as he ages and grows.  This brings back some memories of all the work that Oscar has done to be as strong as he is.  All the food bribery we did to get him to crawl, walk and to participate in the ‘work’ he needed to do.  Bless his happy, fearless and determined soul for being the character that he.

Video’s at Step by Step

Great things we have achieved so far

There are some truly amazing things that Oscar has achieved with our short time at Step by Step including:

  1. Being able to properly blow bubbles – with an even breath out.   This is a big change in him being able to control his breath which is important for his speech development.
  2. Locating his belly muscles and being able to ‘fill his balloon’ so that he can strengthen his core, again important for speech but the strong core Oscar needs for fine and gross motor control
  3. Better able to do a jump.  I’m looking forward to seeing how he goes at Jump the trampoline place this week but jumping has taken a long time to come for Oscar but he has managed now to ‘activate his rockets’ and crouch to jump.  This helps strengthen his quads as he is weaker on his front side across his whole body than his back.
  4. Swing – he learnt how to swing himself on the swing – trying to co-ordinate two feet together to achieve a joint action has been a challenge but by tying his feet together with a little plastic loop helped him learn this.
  5. Writing with his two fingers and a thumb, ie normal pen grip – amazing!  Oscar has only ever written with a dagger grip but by simply taping down his ring finger and pinky in one day he had achieved separation in the ulnar part of his hand.  Prior to that really his 4 four fingers operated as one part not as they should as 2 separate areas that can be isolated. Still more work to do on this but great progress intially
  6. Much improved pincer movements – using therapy putty and also posting coins into a container with tight slots in
  7. Stairs – faster and able to walk downstairs with just one hand holding the railing – still a little nerve wracking to walk to next to but big changes in how he is doing this
  8. Able to cut with scissors more accurately and move the paper to reposition with his right hand as the aiding hand. Oscar is showing his liking of cutting out at home and doing this by himself.

Still lots for us to work out but some really great areas where Oscar could see improvement himself and that motivated him as well.  It’s all fine and well for me to be motivated but his is 9 and we need his buy in to the benefits of putting the work in for us to continue on this path.


The amazing Step by Step centre

Having read Dr Karen Pape’s website then I knew that we needed to do something proactive for Oscar so I contacted her and she put me onto Pia Stampe at Step by Step Pediatric Therapy in Rochester, NY, USA.  Man oh man I felt like we had found the holy grail of options for Oscar.    Pia’s site has many testimonials that speak volumes about Karen and her approach to helping not just kids but adults with CP and Brachial Plexis Injury (BPI) or also known as Erb’s Palsy.

So how did it work when NZ is on the other side of the world?  First up Pia asked for some specific videos and photos to be done of Oscar including:

  • walking
  • running
  • talking
  • standing
  • sitting

Then we had a call with Pia and I talked about Oscar’s history and what we wanted to focus on.   Pia said ‘yes, we can help you’ and unlike our initial ‘Yes’ from Conductive Ed when it was turmoil of hoping he wasn’t severe enough to need help I was so ready to hear a yes from Pia!

They have options for 3 day, 5 day and 10 day intensive therapy sessions but with how far we had to go we took on the longer stint so that we could maximise benefits.  Our therapy was to be split into OT, PT and SLT with an hour each a day.

Our first day was one of assessment and they worked him from top to bottom 🙂  They got a great sense of how his body functioned but not necessarily his personality as he was very quiet and compliant in that first week. No the bolshy Oscar that we can get!

Video’s were sent backwards and forwards to Dr Karen Pape and on the third day  Pia said we believe his biggest single issue is CVI (Cortical Vision Impairment).  They are not experts in CVI but have some experience and have factored that in but recommend we see an expert in that to help him.  CVI is basically the brain not communicating normally with the eyes and that impacts his balance, his reading, fine motor skills, catching balls and many aspects for him.  It is not looking promising in NZ when our neurologist doesn’t actually know what CVI is but the expert that Karen Pape advised is Christine Roman based in Pittsburgh.

Our great issue for Oscar has always been speech.  With confirmation that something was wrong at  10 months,   I had not even contemplated speech would be an issue.  I had just assumed his weaker right side would leave us with gross and fine motor skills issues. Oscar has Dysarthria, a motor speech disorder which results in poor articulation of phonemes.  IN simple terms it is an issue of the muscles that control his speech.  However, like many stroke victims Oscar can actually sing better than talk and the singing area of the brain is in a different location.  We know Oscar can do it, the challenge is to unlock it and for that we have been recommended singing therapy as an adjunct to his speech work.   We have an appointment booked for assessment with Raukatauri Music Therapy next week to start a plan in place for Oscar.  This part excites me a lot – we know Oscar loves music and perhaps he has a genetic predisposition with it from Grant, his Dad, who is a musician.

We came home with detailed OT, PT and SLT assessments and therapy suggestions for us.  I’ve put together a schedule – a lot of it can be a little bit fun and it does not have to be onerous.  Next week I meet with Oscar’s teacher to factor in some parts of that into his daily school routine.

We hope and expect to continue to get benefits from what we are doing for Oscar.  Whatever has happened for Oscar – be it genetic, or a physical event – his brain has recovered.  Karen Pape believe’s that his speech is a product of the only way he could learn to talk when his brain was still recovering but now that it has we have to try and retrain that.  The most amazing thing to never loose site of is that it is possible to change it for kids like Oscar but it doesn’t happen on its own.

If you are interested then please check out StepByStep




Who is Dr Karen Pape?

Well for me I think she is pretty much as close to a ‘God’ as I would ever worship.   I first found Karen Pape when searching on line for neuroplasticity and I came across her TedX talk that she gave in October 2012.  I saw it in November 2015 and I contacted her because what I listened to and then made my husband listen to was exactly what I was looking for.

Someone who said yes the brain is capable of remarkable change.  Yes, the kids with CP can do so much more with the right kind of therapy.  And, best of all she had case studies to validate it.

Karen Pape is a neonatologist and neuroscientist from Toronto.  Over time she has courted controversy with her view on what can be done with our kids from within the medical fraternity.  She is as far as I am concerned a risk taker and someone who has put our kids needs ahead of established doctrines on what we should be able to expect.

Her mantra’s are ‘Cure for some, improvement for all’ and ‘Habit hides recovery’.  Both of which I believe relate to our CP kids.   The brain’s ability to recover is clearly shown in Karen’s work.

I urge you to watch this talk and then to go to her website and read the wealth of info on there.  She has a book due out called ‘The Boy Who Could Run But Not Walk’ in September 2016 on Amazon and having been lucky enough to read a pre-release.  It will change your view on what you can and should do to help your child.

See more on on her website  (updated website also due for release soon)


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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.


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