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"The support for my child is one thing but the support for my family through advocacy when I alone cannot speak to other organisations is amazing and I can only thank the conductor of the centre, Andor for that as he goes above and beyond to help each family."
Elijah
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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 impairment), global developmental delay, heart and bowel issues. At 3 years old, he uses a walker to assist his walk but requires help to transition into it yet doesn’t have awareness of his balance, he doesn’t talk and is fully tube feed 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 neuro-developmental 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 (Wellington Conductive Education 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 to Wellington, 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 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.
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 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.
Azalea-Rose
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My mokopuna Azalea-Rose started at Conductive Education Learning Centre in November 2016 at the young age 5 months. In December of 2017 Azalea-Rose was put on the palliative care list where she will remain for the span of her life time whatever that may be?
Azalea-Rose was born with CMV infection which gives her severe neurological disorder, cerebral palsy, total deafness, CVI (Cortical vision impairment), colonic tonic seizures, COPD chronic lung disease, refluxing & aspirating, low muscle tone causing floppy syndrome being unable to have body movement control & peg fed through the stomach. Conductive Education Learning Centre has been a real blessing as they strive to bring the best potential out of each child no matter how severe their disability may be and their Conductor enables families to observe and learn different techniques which promotes repetitive learning for the child within the home. The support for my child is one thing but the support for my family through advocacy when I alone cannot speak to other organisations is amazing and I can only thank the conductor of the centre, Andor for that as he goes above and beyond to help each family. My family and I love how the centre has an open door policy that allows us to come and be apart of Azalea-Rose’s day and how the staff practice manaakitanga, whakawhanaungatanga, aroha and how they are culturally diverse embracing each culture equally. I also have to pay homage and acknowledgement to the many long serving volunteer workers whom give up many hours of their free time to come and help out at the centre shows great dedication and to the ESW (Education Support Worker) who has played an enormous part in Azalea-Rose therapy and learning. Azalea-Rose has learnt so much in the past two years at Conductive Education from not being able to move her limbs and being a very sick little girl in 2016 to now walking in a Rifton walker, standing in a standing frame, free swimming with a life jacket (aided by the ESW), lay back pony riding for disability, learning baby sign language, visual tracking, reaching for objects, learning how to move her arms and legs, learning about all of her other senses, holding her head up a little more each day, kicking her legs frequently, personal cares but most importantly through all of the therapy as we are coming to the end of 2018 has seen Azalea-Rose to have had a great year of well health and for that we are thankful. There are many other things that contribute to the continuous growth and development of Azalea-Rose such as music therapy, tactile stimulation, artwork, sensory room, little room and learning to brush her teeth just to name but a few. Although these are Important, for the well-being of Azalea-Rose’s health it is imperative that her secretions do not become blocked in her lungs therefore with the direction and guidance of the conductor all staff work on all areas of therapy that aid in this area. Sadly due to Azalea-Rose having quite severe neurological issues she will always struggle academically to process what she sees which makes it harder because she cannot hear, so this is an area that we don’t necessarily push on to her as she has enough to deal with in her daily life and as our respiratory specialist had recommended it is best to give Azalea-Rose Quality of life not Quantity of life, so that is what we as a family live by now and it seems to be working out fine. Every day is a good day when our little girl can share all of her many emotions with us as these are things that we quite often take for granted. With each movement she makes is exciting, with each vocal noise she makes is music to our ears, when we are at our very lowest she lifts our spirits up and when she is at her lowest in health we feed her all the energy and good thoughts we can to help her lift her spirits. My family and I always try and give back to the centre where ever we can whether it be helping the children and/or staff, cleaning or just simply making other families feel welcome. Ali Houpapa Ehara taku toa i te toa takitahi engari he toa takimano. My strength is not that of an individual but that of the collective. Mauri Tū, Mauri Ora |
