Queensland Mother Alison Else attended The Institutes course in Melbourne last June, having already begun a program at home for her son Darcy – who was born with Down syndrome. Alison’s program was developed just from reading some of the Doman books, but after the course, she and her husband were able begin a more formal program.
Alison has written a success story for us before, but today she has taken part in our interview series with Australian parents who attended the first ever ‘What To Do About Your Brain Injured Child’ Course in Melbourne.
*It is important to know that – although Down syndrome is not regarded as a ‘brain injury’ – it does result in neurological impairment and as such, children with Down syndrome do respond very positively to programs which address injuries in the brain.
1. How did you feel when you were told of your child’s brain injury and prognosis?
Darcy’s diagnosis of Down syndrome came as a complete shock to Mark and I. We had all the prenatal tests done during my pregnancy and there were no indicators of any chromosal disorders. We were completely devastated but we were very blessed to be surrounded by wonderful doctors and nurses when Darcy was born; some of whom had experienced family members with disabilities and were able to give us words of positive support and encouragement. Once we overcame the shock associated with Darcy’s diagnosis, we embraced our little boy with love and joy and worked hard to find ways to help his development.
2. What treatments / service providers did you initially look to?
Early in Darcy’s life our paediatrician referred us to Disability Services for access to physiotherapy, occupational therapy and speech therapy. We were very grateful for the assistance these therapists provided us in the early stages of Darcy’s development and we did gain some knowledge and helpful techniques from them. At this time, we really knew no different and were taking advice from the “experts” around us as to the best ways to help our little boy.
3. Did you notice any changes attributable to your treatment?
In the early stages of Darcy’s life, we learned some techniques through therapy that helped with his ability to breastfeed and take in solid foods. We were shown some different activities that helped Darcy develop strength to be able to sit on his own. At this time, his physical development was not significantly delayed and it seemed as though the work we were doing was helping him. As Darcy became older, the gap between “normal development” and where Darcy was became greater and greater. We worked hard at doing the activities prescribed to us by therapists, who we saw only once per month, and it became apparent to us that what we were doing and the frequency with which we were doing it, just wasn’t making enough of a difference.
4. What motivated you to look for alternative treatments and find IAHP?
When Darcy was only 6 weeks old, we were very lucky to stumble upon an article in a magazine about Kristen Morrison and her son Gryffin. We were inspired and filled with hope after reading Gryffin’s story and were keen to know more about the work Kristen had been doing with him. We ordered Kristen’s book initially and then subsequently the Doman books she recommended. The Doman books were put to the side for a period of time, until our little boy was diagnosed with cataracts in both eyes. Following the surgery to remove his cataracts, Darcy’s vision was very slow to develop. It was the sense of panic we felt about our son being effectively blind for the rest of his life that lead us back to the Doman books. We were searching for anything we could do that would help Darcy’s vision to develop and this is where we started our programming after reading the “How Smart is Your Baby” book.
5. How did you feel when they demystified the world of brain injury for you?
When we first read the Doman books, we felt as though for the first time someone had given us answers about the cause of Darcy’s developmental delays and sensory problems. There was no disputing Darcy had an extra chromosome, but no-one could actually explain to us how that extra chromosome was affecting his brain and body. The Doman books explained brain development and brain injury in simplistic terms that made sense to us and for the first time we felt as though we had some concrete methods that would really help his vision to improve and his motor skills to continue to develop.
6. As you first worked out what commitment to the program you would need to make, how did you feel?
We commenced the program at home with Darcy when he was only a few months old after reading the IAHP books. At this time we were doing an hour or two of programming each day. We worked on sensory stimulation, patterning and movement on a crawling track. Once Darcy’s vision and movement started improving and his creeping and crawling developed, we stopped doing so much of the program – we thought we had “achieved” some goals and things would just keep developing from there. Over time, we progressively saw Darcy’s development become slower and slower. It wasn’t until I attended the IAHP program in Melbourne when Darcy was 2.5 years old that I realised we needed to consistently do a very intense program requiring hours of work every day. Initially I felt panicked and overwhelmed by this commitment and thought there was no way I could manage such an intensive program, especially as we also had a 4 year old son at home who needed equal amounts of attention and nurturing as Darcy. It seemed impossible to be able to do this program in its entirety with two small children.
7. As things progressed did it feel easier to live the program as results started showing?
When I came home from the WTD course in Melbourne, my husband and I followed IAHP advice – we started slowly and we wrote ourselves a daily schedule that worked through all the various activities recommended for Darcy. It was the only way we could be sure we were getting through everything we needed to do. I thought I would find it difficult to follow such a structured plan, but what I found was the opposite. Having a structured day made it so much easier for me. I had spent the previous 2 and a half years running from one therapist to another, none of whom worked together and all of whom were on different pages in terms of our son’s development. The IAHP program gave me the power to put together an individualised therapy program for our son that I could do with him at home. We slowly introduced the program to Darcy and he loved doing all the new activities (as did our older son who we involved in many of the activities during the day). Darcy was a sponge and just wanted more and more – and very quickly we started to see results. That was when I realised this wasn’t hard work. It was fun…..and it was manageable…..and it was such a blessing to be able to see the joy in Darcy as he began to improve and learn at different things and knowing that I helped him with that.
8. Did you believe that these results were possible?
There were moments early in Darcy’s life when we wondered whether he would ever be able to see. After a couple of months of visual stimulation, I will never forget the moment when our little boy finally followed a light with his eyes. This Mummy shed great big tears of joy! We wondered whether our little boy would talk. After 6 months of programming, he now has a vocabulary of over 150 words and he just loves to communicate with us. When I say “I love you”, he puts his hands across his heart and says “wuv”. More tears!
9. Do you now think that some of the physical aides people try and sell could have provided the same result?
We never really needed physical aides for Darcy, but I think if we had not undertaken the program with Darcy so early in his life, we would have ended up reliant on aides to help with his vision. Now I don’t believe we will need them.
10. Would you do it all again if another brain injured child was put into your care?
Without a doubt, we would definitely undertake a similar program if we had another child with a brain injury in our care. As a parent, we felt it was our responsibility to give our child the best we possibly could to help him develop. We feel as though this program has given us the skills and knowledge to really make a difference in our little boy’s life.
11. What would you say to a parent who might be considering attending the What To Do About Your Brain Injured Child Course?
The WTD Course is a life changing experience for any parent of a brain injured child. Whether you choose to undertake the full therapy program or not, the knowledge you will gain from the program about how your child’s brain operates is second to none. You will not regret being part of the program and you will leave feeling empowered as a parent to really be able to help your child.
Is there anything else you would like to tell us about your experiences as a ‘programming’ parent, working with your own child?
Within weeks of starting the intensive program with Darcy in July 2013 we saw significant changes in our little boy. He was suddenly so much more alert and aware of the world around him. His mobility improved very quickly with the introduction of his physical program. He became healthier as we made changes to his diet and we have not had a serious bout of illness since we commenced the program. For the first time in his life we got through the summer bugs without a serious chest infection and hospital stay. Over time, the improvements have not been as glaringly obvious as they were in the first month or two, but they are consistently appearing through the weeks and months of doing the program and we are so very proud of the developments we have achieved with Darcy in less than 12 months of doing the IAHP program. The full program is intensive and time consuming but it is also rewarding, fulfilling and heart warming as we see our little boy doing things that we wondered would ever be possible.
For more information about the ‘What To Do About Your Brain Injured Child’ Course, visit www.iahp.org.au