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As a mum to an awesome little boy with nodular heterotopia, I am frequently told by well-meaning friends that ‘I couldn’t do it’ or ‘I don’t know how you do it’. Matthew’s condition means that he has difficulty with his mobility and communication so, in reality, I have no choice – he’s my child, I love him and I want the best for him. These phrases are what parents of children with disabilities often hear. It’s like we have some inner strength they don’t have that enables us to care for a child with additional needs; but it’s not a choice, and you’re no different, you just ‘do’.
You experience a roller coaster of emotions: from grief to determination, to exhaustion, to love; from defeat to acceptance. Sometimes, all in one day. You carry the weight of the world on your shoulders – you’re a parent, a teacher, a nurse, a campaigner, a fundraiser and a fighter. It’s mental and physical exhaustion every single day, and you worry about what is to come and obsess about what could have been.
New parents have baby groups, playgroups, support groups, coffee mornings, soft play, swimming, advice, singing groups, etc. But you realise how little there is out there for new parents of children with disabilities.
Even if your child could physically or emotionally cope with these group activities, it’s not to say the parent can. You are exposed to everything you wanted for your child but didn’t get. You feel isolated, staying away from groups and social events because it’s too painful, but staying away puts you in an even worse position. You’re on your own and no one understands. There are a few places, but finding them is like looking for a needle in the proverbial haystack. Unless you know what you are looking for, or what it’s called, you are on your own.
I had never heard of conductive education, and most people I’ve spoken to since have never heard of it either, but it does exist, and speaking as a parent of a child with disabilities who is benefiting, it can bring you back from the brink.
Conductive education centres like Footprints in Nottingham give parents support and advice, and most importantly, hope. Until you find somewhere like this all you have had to deal with are hospital appointments where you are told what is wrong, physio sessions about what they can’t do, awkward questions, or avoidance from friends and strangers. The negativity is draining; you don’t know where to turn or who to turn to for help, and it seems this is it for the rest of your life.
Conductive education brings parents together and creates an environment where you have an immediate bond with others because they just get it. They know about the bad days, the mental exhaustion, the loss of hope, the tears – they just know, and it makes you feel better. Nothing in conductive education is negative or about what the child can’t do; it’s all about celebrating the child and their achievements, no matter how small. It’s about empowering parents to know how to help their children develop and progress, and be the best they can be. It awakens and stimulates a child’s self-awareness, and their capacity to play, form friendships, have some independence and enjoy life. It’s just a shame these centres are few and far between and don’t have the funding to reach more families.
I’ve seen what conductive education can do for the whole family, and it’s changed mine and so many other parent’s perspectives about additional needs and disabilities. It’s something that needs more recognition. Early intervention is key, so the younger the child is in accessing the programme the better, but often parents don’t find out about where they can go until their child is older and they are thinking about their education. As a mum, you’re under a cloud – you feel like you are walking through quicksand. Someone needs to show you the way from the beginning, but so many parents are left in the dark.
Being told your child might never walk or talk or be independent is heartbreaking, you feel like everything is lost and all hope is gone. Conductive education offers hope and some feeling of control. It gives you the strength to help your child prepare for the future and helps you to understand that having a disability isn’t the end of the road, just the beginning of a new journey.
Dr Anne Emerson from the School of Education at the University of Nottingham conducted research into the benefits of conductive education at Footprints (formerly School for Parents) and found that the stress of having a child with a disability is profound and wide-reaching, affecting all aspects of the immediate (and often extended) family.
The initial wait for a diagnosis can be an agonising time for families, particularly when they have concerns for their child that are not shared by medical professionals. The disabilities and developmental conditions have a life-long impact, but often in the early years, it is the child’s health difficulties that cause the most stress to parents, directly due to concern for their survival, and indirectly through the endless appointments and procedures.
Some of the experiences described by parents could be considered as trauma, leading to a need for a high level of support and care for the whole family.
Image credit: Footprints
Lucie Gregory and her son Matthew have been attending Footprints’ sessions to help Matthew cope with nodular heterotopia, a brain malformation limiting his cognitive development.
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