With our second presentation of The Institutes’ course for special needs parents coming up in March, we decided to interview some of last year’s attendees.
- How did you feel when you were told of your child’s brain injury and prognosis?
Lost. Lost his future we imagined for him. Lost our future we had imagined. Lost our girls futures due to the time we thought we’d have to dedicate forever to him.
- What treatments / service providers did you initially look to?
Early Intervention, Physio, Speechy, OT
- Did you notice any changes attributable to your treatment?
Maybe. It was hard to tell. We jumped from thing to thing so often that we didn’t feel like anything worked – he couldn’t roll, sit, walk, eat or talk before we went in and he couldn’t when we stopped a year later.
- What motivated you to look for alternative treatments and find IAHP?
Lack of progress. That gnawing feeling that there had to be a better way that made more sense to us rather than “hope”.
- How did you feel when they demystified the world of brain injury for you?
Empowered. And since then we have felt more and more control.
- As you first worked out what commitment to the program you would need to make, how did you feel? Wow – this is going to be hard. But how could we not try? Our little boy relies on us to guide him. That and gosh, milk will be hard to give up on! Also we thought this could help our 2 older kids too.
- As things progressed did it feel easier to live the program as results started showing?
Absolutely. because they instruct you to build up the way you start the program, they really helped us to be confident as we took on each new program component. Even now, it is the easiest hard-days-work you will ever do – job satisfaction rating of 100%
- Did you believe that these results were possible?
No – I saw his brain scans. The illness had devastated his brain. Malformed, shrunken, too smooth….how could he ever be much more than a vegetable?!?!? Certainly he wouldn’t be mentally capable either. OH HOW WRONG!
- Do you now think that some of the physical aides people try and sell could have provided the same result?
No. I have formed a fairly strong opinion based on the 2 attempts we have had at treating Axl’s Cerebral Palsy. Physical Aide’s provide a short cut that masks a problem – it doesn’t cure it, remove it or take it away forever – it provides a short term gain that leads to long-term limitation of my son’s potential – how could I do that to him for the sake of getting more sleep and having a better social life………… or money to buy shoes more often (just thinking for my wife!!) In fact, I steadfastly believe that the people who peddle these aides are in one of 2 camps: predators who prey on parents so desperate for answers and results they will rush from thing to thing and try and buy anything OR happily deluded do-gooders with entrepreneurial spirit. In either case, I will avoid the slick sales lines, the pandering to my emotions and the therapists that shy away from the basic fact that brain injury isn’t a quick fix. It takes an amazing amount of hard work, dedication, determination, grit and above all love to see it gradually beaten back from the the very forefront of your child’s life – but we have seen it done with others and we have witnessed first hand some wonderful milestones with Axl.
- Would you do it all again if another brain injured child was put into your care?
Of course. We often spoke about this: imagine having disabled twins and how much of a tough ask that would be, but also how we would just re-arrange our lives to make it suit. Gone would be the nice house and flash car. We’d make the decision to down-size and reduce my required income so I could service the family’s needs instead of servicing our debts……..I think any child is worth that – in fact it seems a meager price to pay for opening the world of opportunities that awaits children.
Our final question for Gavin is one he answered in his Testimonial below, and again earlier blog post – which we link to below.
What would you say to a parent who might be considering attending the What To Do About Your Brain Injured Child Course? See Gavin’s reply here.
When we first found out about Axl’s brain injury, we were a bit numb. We had put some emotional strength aside as we both suspected something was wrong but to have it confirmed and be told we were “starting down a very long and very hard road” by our Paediatrician was a little scary. We both immediately jumped into that frame of mind that with a severely disabled child of 5 months, things weren’t too dissimilar to the life of a parent of an average 5 month old, but as time went on he would become harder and harder to care for – I flashed forward to him being my age (33 at the time) and how his everyday life would look: shaving him, toileting him, rolling him in bed, lifting him, feeding him and wondered how I would cope. I started to think about what would happen if we died young that we wouldn’t want our boy in a home and that we’d need special people who would care for him…..the $$$$ signs started spinning and I went straight into solutions mode. My wife asked all the questions one would expect – what does Cerebral Palsy mean? Will he progress, why is he like it? Will he recover somewhat? And I honestly think I saw her heart break in front of my eyes as she held him as the answers came back. All she had ever wanted for our children was health and happiness. She is the most practical woman in the world so she immediately went into “what’s next mode” and started planning our attack on Cerebral Palsy – she knew we wouldn’t give up on our son, we had try to help him so we might as well start now.
After we had the diagnosis provided, which was not definitive in any case, we asked what treatment options we had. Our Paed put us straight on to the local Early Intervention Service which is very well renowned for the great care they put into helping disabled kids under the age of 5. We weren’t told of any alternatives. As we commenced the treatments, we were all revved up and really looking for as many answers and strategies as possible. Don’t make that mistake. We have since learned that focus and intent are far more important than “a little bit of this and a little bit of that” type strategies. How does one measure progress and it’s cause if you don’t even know what was the treatment technique that actually gained some sort of reaction? We were running about like proverbial chooks with our heads cut off trying to go from medical appointment to therapy session and all we seemed to get was tired, poorer, frustrated and disillusioned. That seemed like a waste of 12 months I can assure you.
It was this disillusionment stemming from a almost complete lack of tangible, sustainable progress that led us to seek alternatives. Given the severity of Axl’s symptoms, we looked to the Cerebral Palsy Alliance and they immediately espoused that they had a full range of services and could help with twisted limbs by splinting or surgery and plaster casts etc. While I can’t say I was enthusiastic, it was the done thing so I just resolved to justify it all in the name of helping my son. There was always the voice in my head saying there has to be a better way but when you are looking for answers and have none, any solution seems to be better than having none at all. It was at this time while I was making contact with the Cerebral Palsy Alliance, that we worked out that the local Early Intervention Team was in competition with the Cerebral Palsy Alliance for the government-sponsored treatment dollars. This immediately rankled me and I wasn’t comfortable that all motivations were being made clear. I can’t fault my chief Physio – she is a lovely lady and really cared for Axl. Ditto for my Speech Therapist and Occupational Therapist – so too my case worker and the facility manager and staff (everyone needed paying, so Axl’s therapy was paying the bills). Everything was focussed on physical aides to circumvent the issues Axl faced. They absolutely wrote off his ability to develop along a normal pathway and we took this as gospel. As this was going on, my practical and fantastic wife was searching the web for answers when she found a book named “What to do about your brain injured child” which caught her attention as its second title went on to refer to every common diagnosis brain injured children get and sure enough “Cerebral Palsied Child” was on the cover. Our Early Intervention Physio warned us….I’ve heard about this stuff and its pretty full on – as though what we had been trying to do was easy.
Reading that book was incredible. I read it before my wife who was actually getting a little despondent, a little tired, overwrought and was losing hope. I kept saying to her “you have to read this book” over and over again as I would get a page or two further in. The way the book was written so plainly and directly made the story of brain injury understandable, and in doing so made it far less of a mountain for me to try and wrestle with emotionally. As I understood that the physical things I see are directly attributed to the injury in the brain I felt I got a better understanding of Axl’s existence. I had so often looked at him with great love and great pity that I admonished myself for mentally writing him off. He was better than I knew and he is proving that, even today as I write this 12 months later.
My wife prepared herself mentally and started to read the “What To Do” book as it is referred to by the “in” crowd these days. She was blown away. An immediate change had overcome us. We had never before seen or heard what Axl was facing with such clear, concise logical explanations that we just couldn’t stop remarking on how “obvious” that point was or how “couldn’t we have clued up on that before now”……….the book on it’s own was enough to make us feel like we could make Axl’s life better. But the real eye opener came when we were fortunate to get a spot at the “What to do about your brain injured child course” in Melbourne, 4 months later in June 2013. We continued to be impressed with how simple the messages were. Having the human brain demystified and being able to have (for the first time) a diagnosis of what his brain injury was from a functional perspective was nothing short of emotionally liberating. Then we actually assessed him and could give it a name and rating. All this was important as it then gave us a plan of attack. It gave us bullets for weapons and targets to aim at. Try and get that empowerment somewhere else: climbing mountains doesn’t come close. To actually feel like you were the best placed to help all along when you had been travelling back and forth was both exciting and annoying as we considered we had just had it confirmed – we had wasted 12 months at Early Intervention but at least we could do our best to make it up.
We felt a little daunted by the prospect of the Program and found the dietary aspects hardest to adjust to but IAHP had given us the tools and timing to implement sustainable changes bit by bit, so we felt very happy to attempt it.
Now to make something clear, I had specifically gone down there a pessimistic sceptical dad hoping not to get ripped off. I would have paid 5 times the course fee for what I left with…..10 times even. That’s how relevant it was to our son and we weren’t prepared to give up on him – we knew when we looked in his eyes there was someone on the inside trying to get out. The IAHP confirmed it for us.
“we had a son who interacted for the first time”
So we set out and implemented the first version of Axl’s home program and it was an instant success. He was more aware of his surroundings – we had a son who interacted for the first time. We made slow but steady progress with his feeding. We eventually got him on solids and he eats like a horse now. He isn’t on medication to help with constipation like we had been told he would be on forever as “immobile kids all get that”. That was one way we had improved Axl’s life – he was no longer in pain.
We just didn’t think some of the results were possible so quickly. He had had a persistent crackly cough for months and months – gone within weeks. He had tried for 15 months to eat solids – eating like a sumo and putting on weight. His high tone subsides during therapy, he has increased his core strength considerably – he had NO abdominal muscles and couldn’t do any form of real movement – now watch him go hard down his ramp!! There’s so much – his awareness of his surroundings, interacting with his family – especially his sisters, laughing, voicing his opinion – all so much fun for us to share. Can you imagine our surprise when we started our reading program that on his 2nd birthday he could recognise words he has seen written 2 months earlier (he could tell his sisters names apart!!). We now use a choice board with 4 options so he can express himself. It is absolutely priceless.
With all these wins have come safely into the knowledge that we are building a sustainable and steady base for Axl to move forward from. We look back and shudder on the physical aides that we were nearly trapped into buying. In fact I am so angry with some of the purported “child disability experts” that I think of them as nothing more than predators who prey on heartbroken parents desperate for help with their children’s seemingly insurmountable issues – let me assure you of one thing if nothing else as I think back on our contacts with one certain salesman who trades off on other people fantastic progress – a magic wand does not exist and that sustainable progress comes by building our children from the ground up. I think of some of the parents on the Melbourne course who had paid outrageous amounts for “Intensive Physiotherapy” for a week only to find that $7,000 was a lot of money compared to attending the What To Do course in Melbourne that week. You name it…Theratogs, Therasuits, Hart Walkers etc etc they are all designed to get the holy grail – independent movement. The fact that so many Cerebral Palsy sufferers who have moved in their own various fashions have worn out joints or have severe back problems should be the biggest warning of all – the movement without the foundation strength just leads to a quick win while long-term, the disability becomes worse. Inflicting pain on top of disability just scares me for Axl.
What we plan on doing here is to get Axl 100% of the progress we can get with the IAHP Program and then see what is available for helping bridge any final hopefully significantly smaller gaps.
So today sees us into the second “Program” and we love it. We have a plan on what to try and achieve each day, a routine that sees us get the kids off to school on time, the groceries purchased, me off to work by 8am and home again by 6.30pm. It’s almost perfect except Axl likes to sleep so much. Ultimately, we ask ourselves every now and then, if we had our choices over, what would we do from the moment we were told we were “starting down a very long and very hard road” and this would be our answer. We would ask the Paediatrician for our options, we’d then be handed the What To Do About Your Brain Injured Child book and we’d go straight to the next available course. We’d listen intently, start doing the program immediately and give it 100%.
If you are asking how soon should I start – the answer is yesterday – time is critical. Good luck with your search for answers and I wish your brain injured child the absolute best. I also wish you strength and determination to start to help your child find themselves – because once you start the process, it’ll just be fun that you share together.
For more information about the ‘What To Do About Your Brain Injured Child’ Course, visit www.iahp.org.au