Our son Elijah was born in June 2015 and has a long and complex medical history. Offically, he has an “undiagnosied genetic condition” which results in a list of about 14 issues. This list includes microcephaly (small brain), horizontal nystagmus (resulting in severe visual impariment), global developmental delay, heart and bowel issues. At 3 years old, he uses a walker to assist his walking but requires help to transition into it as he doesn’t yet have awareness of his balance, he doesn’t talk and is fully tube fed due to an unsafe swallow action and risk of aspiration.
At around 15 months old, Elijah’s delays were becoming more and more apparent, so we began to search for ways which we could help him. We were seeing a neurodevelopmental therapist weekly for an hour, but felt he needed something more. At the time, we were living in Waiouru so drove down to Wellington to meet with Andor to find out more about Conductive (Conductive Education Wellington Trust). I was immediately impressed with everything Conductive had to offer Elijah. Daily stretching, a sensory room, swimming, horse riding, music therapy, art and of course, toys and play time. We began to take Elijah to Wellington each Friday and his progress was staggering and astounding, giving hope and excitement.
We saw so much improvement by travelling to Wellington once a week that we decided to move our family, so Elijah could attend more often. Once in Wellington, the true scope of Conductive became even more apparent. There is an excellent relationship between the hospital and Conductive. Both the hospital therapists and Conductive have worked together to source all of Elijah’s equipment needs and footwear. Conductive also liaises with other organisations he is involved with for example BLENNZ, the Blind Foundation, Ministry of Education’s Speech and Language Therapists and TalkLink. On top of this hospital, Home Care nurses come regularly to Conductive which cuts down trips to the hospital.
Conductive becomes more than just a place where you take your child. You get to know the other families and children. It is comforting to be in a place with families that are experiencing similar journeys and you get to learn from each other and share experiences. There is a small but extremely dedicated staff that truly want the best for your child. They get to know every child and all their little ‘quirks’ and tells.
Conductive is seen by some as an “alternative” type of therapy and I have found it not often recommended by medical professionals in a hospital setting, in fact we have been actively discouraged from it. I feel like this is totally unjustified. I think there are a few key things that make Conductive successful. The first of these is that therapy is incorporated into the entire day, it is not something that simply takes place for an hour and is then forgotten about until the next time. Secondly, children are pushed to reach their potential. Yes, sometimes they will cry and protest, but they also grow, learn and develop. And finally, all the children are viewed as just that, children. They are not different to everyone else in this environment, they are simply a child growing alongside other children. They are not defined by their medical diagnosis or labelled, and they can simply be who they are. I believe it is the combination of these things coupled with the devoted staff that makes Conductive such a special place where children with complex needs can excel. I am fully supportive of Conductive and am eternally grateful for everything they have done for Elijah and every other child.
We did speak to several GPs about our concerns. Not surprisingly they were loathed to suggest that Max may have actually had an issue. We don’t actually blame them or think that they failed in their duties. We’re sure that many parents approach their doctor asking similar questions and in most of those situations their child is able bodied child and is just waiting patiently to start sprinting around the house. In a perfect world we would have been referred to a developmental paediatrician – to be honest though there are no guarantees that cerebral palsy would have been their diagnosis at that time. We recall that gross motor problems tend not to be confirmed until about age two – particularly where the child is not presenting with cognitive challenges.
In the end Max’s diagnosis was made as a result of good fortune rather than parental persistence or professional intervention. Not that Max would agree with good fortune bit. He was in hospital receiving treatment for a chest infection, dehydration and constipation. Not a fun few days for him, but in the end fortunate, as a developmental paediatrician saw him on his rounds. His focus was fixing the problem at hand, however we also took the opportunity to ask questions about Max’s mobility. A formal appointment was made, MRI completed and diagnosis was confirmed. We still had to proactively seek this specialist’s opinion but had we not been in hospital already we do wonder how difficult this process would have been.
Those first weeks and months after Max’s diagnosis were hard. We worried for his future and had so many questions. Would he be able to walk? Would his cognitive ability eventually be impaired? Would he be happy? The DHB were great in providing advice and some assistance, although they were and still are limited in what they can achieve because of their inadequate funding. It was not until Max started at Conductive Education that we felt that we had gained some level of control over the future. We still had many questions and most of those remain today. One of the most important differences between the public health service and Conductive is the amount of hands on therapy time that your child receives. Max went from one to 18 hours per week. An easy decision to make. We still rely heavily on help from ‘traditional’ sources (for equipment, formal medical assessments, botox treatments, etc.) however we can’t help but wonder how Max would be now (health and happiness) if we had never discovered Conductive Education. It is a place where the staff understand the trials that these kids are going through and they also do what they can to bring out the best in each child.
Another critical advantage of being part of the Conductive whanau is to know that you are not alone. We have gained strength from the knowledge that many other children have moved through the Conductive system are more mobile and happy as result. You are also provided with perspective. You discover that children with cerebral palsy have their own personalities, their own strengths and weaknesses and in particular they make their own unique contribution. All this sounds obvious right? When you initially find out that your child has a potentially serious lifelong condition one of the first things you lose is perspective. A few years down the path with the help of many people and the Conductive Education organisation, our family has found that again. Max’s future will continue to have hurdles over which we will need to jump together, however we are positive that he will also lead a happy and fulfilling life.