West Bridgford mum of boy with rare brain disorder highlights School for Parents

A mum of a little boy who has a rare brain disorder writes about the work of charity School for Parents. 

There are so many children born with many different disabilities and it’s not an easy thing to accept as a parent. So many people don’t understand what it’s like and don’t realise when they see you laughing or smiling that inside you’re constantly thinking and worrying and juggling a hundred different things each day.

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You never switch off.

It can be a very isolating and confusing experience at first, so I wanted to share our story to hopefully help others and raise awareness of an amazing charity we couldn’t live without.

When our youngest son was born there were no concerns about his future development, we thought he was a happy healthy little boy, like our other son.

You start to imagine brothers playing together, family holidays, movie nights, watching them both grow up together and finding out what they’re interested in and what they’re good at.

It was only when our youngest started missing milestones that we realised something might be wrong.

After expressing our concerns on many occasions, we were finally sent for an MRI scan.

A few weeks later I had a phone call from the paediatrician and she told me the MRI scan had shown he had a rare brain disorder, but couldn’t give us any more information and we’d have to wait to hear from the neurologist.

It was 3 months before we saw the neurologist. We couldn’t find any information on his condition, didn’t have anyone to talk to, had no idea what we were dealing with, for months we were totally on our own.

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There are so many families struggling to come to terms with an unknown future ahead of them.

When there’s no one to talk to who understands its very lonely and scary. It’s like someone giving you a new job that you’ve wanted for ages but on your first day they tell you you’ll have to speak a foreign language, but you’ve never learned the language and you’ve not been given any training, you just have to learn it all by yourself. And it’s exhausting.

You’ll eventually start getting in touch with professionals who can help, and you’ll have a great team around you, but some weeks you’ll feel like you’re living at the hospital, and you’ll still feel very on your own. The way through is talking to good friends and family and accepting help when its offered but there’s nothing like meeting people who are going through the same thing and know exactly how you feel. It’s hard to find somewhere you fit in and feel comfortable going to, you worry about looks and questions at local playgroups and activities and you can’t help comparing your child to others.

You wonder if you’re the only one thinking how am I going to cope with this, will my child ever walk, will my child ever talk, will my child ever have friends, will my child ever get excited for Santa coming or for their birthday? You go through stages of denial, shock, distress, grief, acceptance and then you get tough and determined. You get on with it because you have no choice, people say “I don’t know how you do it, I couldn’t do it”, but you could, because you have to, you love your child more than anything and you’ll never know the strength you’ll have when you need it.

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There’s an amazing charity called School for Parents who are so welcoming, understanding, supportive and you get to help your child reach their potential in a group with others who know exactly how you feel. The children have fun and make friends and you are no longer alone in the journey to help your child. This charity runs purely on donations and they change so many lives.

If you think you could spare some time to fundraise for them or to donate it would mean so much to lots of families in your community and the surrounding areas. Raffles, sponsored runs, cake sales, quiz nights, fancy dress…anything you can think of to raise money and help keep them going would be wonderful, and we thank you in advance.

Our son’s brain condition doesn’t give us any idea of what the future holds but we’ll just have to see how he progresses. Even though it’s often upsetting and exhausting he’s one amazing happy little 3 year old boy whose smile is contagious and he’s totally worth it. He’ll be the best he can be as long as there are charities like School for Parents looking after us.

Lucie Gregory

http://www.schoolforparents.org/

Donate here to the justgiving page


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