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60 Stories - Maire McCormack

Photo of Maire McCormackMáire McCormac
 
Between October 20 and 26, the nation celebrates Parent’s Week. To mark the event, we speak to Máire McCormack, who fought to improve the quality of life of her son, Matteo, and other young people in Scotland like him.
 
Máire McCormack has dedicated her life to obtaining the right services for her 20-year-old son Mattéo. She knows too well how isolating and frustrating it can be for parents of children who have learning disabilities to ensure that they have a good quality of life.
 
Mattéo, who is profoundly deaf and has Asperger’s Syndrome, now enjoys a semi-independent lifestyle, living in his own flat and working as a trained pastry chef. But as Máire recalls the difficulties they both faced when he was a child, she appreciates that it’s been a long haul.
 
“When Mattéo was born I was working for the European Parliament in Brussels. I realised very quickly that for him to be profoundly deaf in a multi-lingual environment was going to be extremely difficult so we moved back to Britain to allow him to focus on one language. As he got a bit older, we also discovered he was on the autistic spectrum and the issues we then had were around the fact that although there were lots of support organisations for each condition, none quite understood the combination. That was a very desolate time for me because I didn’t know any other parents in that situation.”
 
A professional acquaintance of Máire suggested she join ENABLE Scotland’s Young Families Support Committee – and only then did she feels she had finally gained the kind of peer support from other parents she had always craved.
 
“I was doing a lot of work around disabilities and rights at the time in my role as Head of Policy at Scotland’s Commissioner for Children and Young People. Through that, I knew someone who worked for ENABLE Scotland and, when she found out about Mattéo’s disabilities, she suggested that I join the committee. She felt that I could offer professional advice on the technicalities of legislation and policy and also contribute from my own personal experiences with my son. But for me, it has given me so much insight into what other parents are going through and I don’t feel alone anymore.”
  
Although Máire has now been a member of the committee for more than three years, she initially resisted the opportunity because she has always been conscious of allowing disability issues to take over her life. 
 
“I was already living and working disability and the thought of taking up another commitment around it felt daunting. Yet now I feel I have gained so much from my involvement. Because the organisation is led by its members, there is a really strong focus on bringing policy and practice together and the committee is as much about the interaction between the parents and the feedback they give each other as it is about the issues they are discussing.”
 
As a result of interaction and feedback, Máire was encouraged by the other parents to apply for self-directed support for Mattéo - something she hadn’t previously thought would be appropriate for him due to his age and semi-independence. 
 
“It’s easy to feel a bit lost and abandoned when your child makes the transition from children’s services to adult services because sometimes they aren’t very well co-ordinated. That’s where the support I get from the other committee members, particularly the parents of older children, has really helped me. 
 
“Mattéo is very protective of his independence and because of that I have shied away from applying for ‘support’. But the truth of the matter is that he is still very vulnerable and my colleagues at ENABLE Scotland have helped me to appreciate that I was looking at it all the wrong way. It’s not about supporting him - it’s about facilitating what he wants.”  
 
Máire contacted the advocacy service ACE, which is led by ENABLE Scotland members and they found a young person named Greg to offer support to Mattéo. Since Greg’s arrival, Máire feels that she has been able to take a step back from her son’s life, while feeling reassured that he is not completely on his own. 
 
“Matteo is supremely confident and outgoing, due in part to his Asperger’s. He doesn’t always fully realise that not everyone is his friend or that people might take advantage of him. If I try to interfere, he becomes frustrated with me and that’s where Greg’s support is really effective. He’s sensitive to what Mattéo wants and he accommodates that, while helping him to understand what is and isn’t appropriate. Mattéo accepts this support much more willingly from Greg, in a way that one friend would from another, because no 20-year-old man wants his mother’s advice!”
 
Máire also feels that she has benefited professionally through her participation in the committee in relation to the work that both ENABLE Scotland and the Children’s Commissioner are doing around the Children and Young People’s Bill. 
 
“My work is largely rights-based which is key to the person-centred approach of ENABLE Scotland. So while I give my input to the committee, I also filter what I learn there back into my job, particularly in terms of their effective campaigning and petitioning.”
 
The importance of this worthwhile work is what continues to drive Máire in her role within the Young Families Support Committee and she is both passionate about, and committed to, ensuring that members and their families have their fundamental rights respected. 
 
“It never ceases to amaze me that parents and young people who have learning disabilities are still given such a raw deal. Stigma and discrimination is still rife. I want to see that improved and for them to receive the correct services and entitlements. If I can do anything about that, then I will​​."

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