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nick bothwell with his son jackNick Bothwell​

Jack Bothwell was almost three years old when his parents first became concerned about delays in his development. In the 18 months that followed, his dad Nick, like many parents in his situation, describes the process which led to his son’s formal diagnosis with autism as a ‘long road of waiting lists, appointments, referrals and assessments’. 

Determined to help his son as quickly as possible, Nick explains how he and his wife instinctively took a proactive approach to their son’s condition.  

“My wife works within the medical profession so she’s really on the ball from a child development perspective. Fortunately from that, we were able to gauge quite early on what was going on with Jack. We were very aware that early intervention is key for autistic children, yet due to the austere times that we live in, services are stretched and the wait to obtain that intervention is lengthy and pain-staking. 

“We didn’t want to wait. We wanted to give Jack the best possible start in life by making sure that we understood his needs. We worked hard to educate ourselves by doing lots of research, finding resources, obtaining support and attending training courses run by the National Autistic Society. These provided us with a really practical environment where we could learn about issues such as eating, sensory problems and schooling, which gave us the information we needed to become well-equipped to manage Jack’s autism.”

Nick strongly believes that this early support and education is essential to parents of children with additional needs, however, he recognises that for many of them, navigating their way through a sea of information and services can be an overwhelming and daunting task. 

“My wife and I were very fortunate in accessing support but many people simply don’t know where to look. They don’t know how to find the information they need or how to identify the people who can help them. 

“It’s an extremely stressful and isolating time for parents and I know how beneficial it is to interact with others and to know that you’re not alone. Sharing your experiences with people in the same situation as you and having them recognise your struggles really validates that there are issues which make it difficult to parent an autistic child, it’s not just that you’re doing a bad job.”

Inspired by both the support he has received and the personal difficulties he has faced, Nick soon found that he felt compelled to help other parents. When someone at his local carer’s group informed him that Enable Scotland were appealing for members to join their Children and Young Families committee, he quickly familiarised himself with the work of the committee and took the decision to join. 

“The committee works to offer parents information, guidance and strategies on how to deal with lots of different issues from schooling to benefits and a wealth of other services. This support is vital because parents need to be educated on these matters to be able to fight for the rights of their children.

“We’re often at the mercy of what the professionals tell us is best, but we know our children better than anyone else and we need to trust our own judgement. So many parents feel that their voices aren’t being heard and I feel strongly about the importance of that. The parent’s perspective is one of the most important elements in the care and development of autistic children and the committee is there to represent their viewpoint. I wanted to support that. I can provide a voice, and a loud one at that!”

Nick is not afraid to stand up and be heard when it comes to representing the parents of children who have learning disabilities. Naturally confident and articulate, he is readily prepared to challenge and correct authorities and officials on their protocols, procedures and service provision, however, he also stresses that the committee provides a useful forum for gaining professional feedback.
“Of course it’s not all about making the authorities aware of discrepancies in the services, it’s about hearing their plans and establishing a good dialogue. That way, we’re in a position to work with them and help them to shape their policies. This can be done most effectively by bringing both the judgement of the parents and the knowledge of the professionals together.

“A good example of this is how we participated in the consultation on the Children and Young People Bill which is currently going through parliament. We have been informed that a variety of changes were made to the bill as a direct result of the parliamentary team’s conversations with us. That’s the kind of thing that really motivates me. It’s fantastic to be in a position to make that difference.”

While the Children and Young Families Committee have undoubtedly benefitted greatly from Nick’s involvement, he is quick to point out that he believes his personal gains as a member are just as important as his contributions.

“I get as much back as I put in. It’s a wonderfully diverse committee with very passionate people who all have their particular experience in different areas. So while I may be able to offer my knowledge and support, I’m also getting access to theirs and there is no doubt that what I learn from them makes my family life easier too. 

“I get respite from my own situation by spending time with all the other parents. We chew the fat over issues, swap tips and also share stories about the positive times. All that is very encouraging and really reminds me that the turmoil of what we sometimes go though is only in phases.”

With his own son Jack, now aged 6, currently attending both mainstream and special schools, Nick’s work within the committee is currently focused on channelling his experience into devising a school kit for families. 

“The school kit will serve to help parents navigate and negotiate their way through the educational system. I’ve been there myself and I know how intimidating it can be. I want to create some specific guidelines, in plain English, which can be accessed by the broadest spectrum of people so that they can get the advice they need to deal with any issues they may face.”

Nick’s commitment to helping families and children living with learning disabilities is undeniably admirable, but in a typically modest manner, he states that all he really wants to do is to help other parents achieve what he wants for Jack.

“I want my son to be well-equipped to achieve everything he is capable of. I want him to have the opportunity to go into a profession or a job that matches his abilities and potential. I don’t ever want to sit back and feel that I haven’t done enough to intervene in his services or his education for him to be able to do that. I want to make it happen.

I also want to promote acceptance. Jack is an amazing wee chap who brings a lot of happiness to our lives. People need to see autistic children the way we raise his brother and sister to see him - as a different kind of normal. If you look past their behaviour, past their disability, you will find an incredible person in there.”

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