Paulina attended the ‘What To Do About Your Brain Injured Child’ Course in June 2013 to help her son Miller – who was born with Prader Willi Syndrome.
1. How did you feel when you were told of your child’s brain injury and prognosis?
Completely devastated. Miller was but a few days old when he was diagnosed with Prader Willi Syndrome. He was hypotonic and essentially asleep at all times and we got an A4 piece of paper with a shopping list of horrible things about our little baby, including how he would suffer from hyperphagia (an unstoppable urge to eat) which might have him scour rubbish bins for food. We were shocked beyond belief that this was on the cards for this tiny innocent little baby. I felt like he had not even made a sound, and yet his future seemed filled with things that carved my heart. I just couldn’t get my head around it. I knew nothing about genetics and it felt like some kind of black magic to be able to tell the future like that because of some result on a genetics test.
2. What treatments/service providers did you initially look to?
We just sort of blended into the system. We were fortunate to find a wonderful Paediatrician and then eventually joined Early Intervention. We had weekly physio appointments in the early days. It was pretty light-on though. We also joined a quarterly clinic at The Royal Children’s Hospital. This was a real box ticking kind of affair – “measure this, record that, come back next time, wait and see” was the pervasive attitude. The prognosis had a pretty clear outline of how it was likely to progress, and while we could expect him to meet his gross motor milestones, there were some big unknowns about intellectual ability and some of the peculiarities of the syndrome, such as the hyperphagia.
3. Did you notice any changes attributable to your treatment?
Miller progressed through his milestones steadily, albeit at a delayed rate. Because of his diagnosis we didn’t expect that he wouldn’t meet the basics, but we were hoping he would be on the mild end of the spectrum and were pleased that he moved along. I did feel that the physio was definitely helpful, it was as though his muscle memory was good and as she worked with his body showing him how to sit and crawl he would do so shortly after.
4. What motivated you to look for alternative treatments and find IAHP?
Because Miller was “doing well” in our book, and that of EI, I wasn’t really looking for anything. In fact I didn’t know there was anything to look for. I figured if there was something to be done Early Intervention or the clinic we attended at The Royal Children’s would tell me – how very silly I realise now that was! I came across IAHP by sheer chance as it caught my eye in our older son’s school newsletter. I was rather undecided whether to do the course, wondering if it was really going to be a big enough benefit to warrant the time and expense. When I now think of how close I came to missing it, it gives me chills.
5. How did you feel when they demystified the world of brain injury for you?
That week was truly one of the most amazing and expansive weeks of my life. Finally I felt like I could understand what was happening. I could put what I observed within context. All the different specialists I saw spoke about their little bit, but there was no big picture so to speak. I found the genetics really hard to get my head around too. This might sound crazy but I wondered to what extent he was actually like me. One of the profound gifts I got was being freed from the label, as well as “the diagnosis” and therefore prognosis. I understood that he was exactly just like me, but had his sensory dials tuned differently. My mind literally boggled as I understood what I was working with, and most importantly HOW to work with it. It made such perfect sense that I couldn’t believe no one had told me. I was actually angry for a while afterwards that the purported experts (The RCH and EI) had such little to say, while the IAHP had been doing this work for over 50 years! It seemed profoundly remiss to me that this was not general knowledge.
6. As you first worked out what commitment to the program you would need to make, how did you feel?
We felt enlivened by it. I sent my husband to Singapore to immediately undertake the same course. We both felt so inspired and bonded and deeply infected with the love and commitment displayed by the IAHP staff. As the time passed, the day to day commitment was certainly challenging, and remains so today. However, we are clear that as we meet this challenge, we get back far more than we put in. This is both in terms of Miller’s wins, but also includes us pulling together, the incredible sense of purpose we have, and who we are becoming as parents and people. We also have learned so much that we have applied to the benefit of the whole family.
7. As things progressed did it feel easier to live the program as results started showing?
It became easier to the extent that I could make it part of our everyday life. I still have not managed to do the full program, but the results are great and I just keep moving forward. I don’t give myself a hard time about what I have not achieved, instead celebrate what I have achieved. When I look back at what we have done so far I am so proud of us all.
8. Did you believe that these results were possible?
Absolutely not, especially with how simple some to the principles are. For example, one of the cornerstones of the program is diet. With the changes I have made neither of my boys have been sick once. In the past they had both been hospitalised for asthma, however I have not used even a puff of Ventolin since the changes! Despite the prognosis predicting an inevitable hyperphagia, there is none at all! I firmly believe that the diet is key to this. Miller also stuttered before we began the program and his speech was quite unclear. He now talks beautifully non-stop with a very rare stutter. I am also amazed at how much stronger he is. I was told that he would always have low muscle tone and so in the past I gave him a break with physical activity. I now push him and I can see how it is actually possible for him to be physically sturdy! I am so glad that I didn’t just settle for his “doing well” and am moving him closer and closer to realising his potential. I am so curious and excited by how he will create his own future.
9. Do you now think that some of the physical aides people try and sell could have provided the same result?
This was not really relevant to us so I can’t comment here.
10. Would you do it all again if another brain injured child was put into your care?
Absolutely, and I would begin as soon as I could.
11. What would you say to a parent who might be considering attending the What To Do About Your Brain Injured Child Course?
I would say jump! There are so many things in this course that alone make up for the expense in time and money. I just cannot see how anyone could walk away without a ton of gold for themselves. To move from uncertainty and fear into a space of possibility and inspiration, and concrete tools to achieve goals, is quite simply priceless.
Is there anything else you would like to tell us about your experiences as a ‘programming’ parent, working with your own child?
I think it is safe to say that our life has literally been transformed as a result of doing this course. I am without doubt that what we have learned and applied will exponentially achieve amazing health and happiness benefits for each member of the family. I feel like I am in the drivers seat of this incredible family adventure. Our hearts are on fire and life seems bright and wonderful. I am awed by the Doman family and the place they hold in their hearts for my child. It is a rare organisation and I feel privileged to have come under their care.
For more information about the ‘What To Do About Your Brain Injured Child’ Course, visit www.iahp.org.au