The charity BRAAIN , an invaluable resource for parents and carers of children with ASD and ADHD, was set up in October 2017. We met Nikki at her day job as Head of Communications at Tamba (The Twins and Multiple Births Association) and were so inspired by her we wanted to know more about why and how she had set up BRAAIN. Here Nikki explains how it all came about:

“I met Emma at a positive parenting Attention Deficit Hyperactivity Disorder (ADHD) course. After chatting about the lack of support for families with children with special needs in the area, we decided to set up Time Out Support Group. At one of the first few sessions, Helen offered to help with the group. We had already discovered that there was a huge need for greater support for parents, so decided to expand the support group and developed BRAAIN.” 

We know that your son, Sam, was your inspiration for setting up the charity - could you tell us a bit about him ? 

Sam is a truly inspiring young man. He oozes energy, has a passion for learning and is at his happiest when he is camping with his fellow scouting friends. Sam was diagnosed with epilepsy and Attention Deficit Hyperactivity Disorder when he was 4 ½, we discovered he was autistic when he was 10 years old. He’s now 12 years old and trying to navigate his way through secondary school and the teenage years.

What is it like being a parent to a child with special needs? 

It’s amazing. I have discovered so much about myself through parenting Sam. I’m definitely a lot more patient. I have attended quite a few courses to try and understand the world that Sam lives in. I’m constantly trying to imagine what life must be like for him and I try to adapt situations to help him. For example, when Sam walks into a busy room, he is unable to filter out any noise or focus on what he needs to do. Imagine how that feels – pretty overwhelming and stressful. 

What was your trigger to set up BRAAIN?  

Being a parent to a child with special needs can be overwhelming and exhausting. I didn’t know anybody that had a child with special needs, it felt quite lonely. I searched for a local support group but to no avail hence why we set up a support group. It’s been extremely popular. The support group really highlighted how difficult it is for parents to find the information they need to support their child, so we set up a website to help parents navigate their way through special needs diagnosis and beyond! This was the start of BRAAIN. 

What can BRAAIN provide for parents / carers?

We run a local support group once a month (in Farnborough Hampshire) to give parents the opportunity to chat and share ideas. Our website, helps families find the information they need quickly and easily. We also run workshops and courses on a regular basis. 

 It is such a clearly set out and easy to use website – how do you find time (and funds) to keep it up to date?

The three of us share the load. We each have a very different skill set which has been extremely beneficial. We also have a rule that we never take on more than we are comfortable with. We’re extremely busy but what little time we do have, we want to help other parents and families. 

What are your ultimate aspirations for the charity? 

We know that there is a huge need for support for parents, we’d love to be able to run courses and support groups across the country. We also know that the support for young people with special needs moving into adulthood is severely limited. We’d like to do more in this area in the future. 

You mentioned that you offer some courses to parents – can you tell us about them and where parents / carers can find out more information about them?

Of course. We run evening workshops on special needs and puberty, special needs and sleep, sensory needs. We also run longer courses on managing challenging behaviour. We currently advertise our courses on our facebook page but hope to get them added to our website soon. 

What are the signs that your child might have ADHD or Autism?  What is the first thing you should do if you have concerns?

If you are at all worried, speak to your healthcare professional. Getting through the diagnosis process isn’t easy. It’s emotionally draining and will involve appointments, paperwork and chasing up different professionals. However, once you understand more about your child’s special needs, it will help you to understand them better and enable you to provide the specific support they need. 

If there was one piece of advice / some word of wisdom that you could give to a parent / carer of a child with special needs what would it be?   

Sadly, it’s be prepared to battle. You will need to fight for everything for your child. This is exhausting so make sure you give yourself some time off too – self care for special needs parents is vital! 

For more information and to access the wonderful advice and resources offered by Braain please click on the logo below to go through to their website.

While you are here we have lots more blogs on various topics which you can find here, as well as our downloadable webinars on topics such as behaviour and emotions, sleep and toilet training.

Don’t forget that we offer parent consultations should you need support with anything from sleep to behaviour and so much more! Details of the packages we offer can be found here.

We also have a podcast - ‘Newborn to Teen and Everything in Between’ - listen here.