As Lindsay McKeown and her daughter, Siouxi, are greeted at the doors of the Haven Centre in Inverness, the loving bond between the pair is evident. Lindsay, a single mum, describes Siouxi (20) as amazing, funny and strong willed. But day-to-day life with Siouxi is also challenging as she has a rare genetic condition, Angelman syndrome, which causes severe learning and physical disabilities.
She is non-verbal and also has ataxia, a disorder which affects co-ordination, balance and speech. “She is pretty much 24/7,” Lindsay says. “It can be very difficult even when she is being absolutely fantastic.
” The Haven Centre, which Scotland’s first multi-purpose centre for children and young adults with profound and multiple learning disabilities, has made a massive difference for the pair, who live in Inverness, since it opened one year ago. • • • Having taken the Elsie Normington Foundation 10 years and £4.8 million to achieve, it features an indoor specialist play centre, a community café, meeting spaces and garden plus three respite flats for children and young adults up to the age of 30.
During its first year, this pioneering centre in the heart of Smithton has seen more than 200 families and young people use its services. While the foundation operates the respite suites, the play centre is operated by its partner, the Special Needs Action Project (SNAP), which has launched new services and initiatives during its first year. Siouxi is among the young people who attend one of its youth clubs for two hours each week when she is able to join in a range of indoor and outdoor activities from going into the ball pool or sensory room to going on outings.
“With its calm atmosphere and beautiful setting, there are things she can do independently,” Lindsay says. “It is the one place she can really be herself.” During a snatched conversation, she outlines life with Siouxi.
Until recently, for example, her daughter would wake between 3am and 4am although Lindsay has managed to extend this to 5am or 6am and very occasionally manages a lie-in until 8am. Life during the coronavirus pandemic and lockdowns was also intense for the pair. But Lindsay remains upbeat and retains her sense of humour as well as being adept as using various techniques to distract her daughter.
“She is amazing,” Lindsay says. “She is so funny. “She is very impatient as well.
“Some people call her stubborn. I say she is determined and strong willed. She knows what she wants.
” And although Siouxi is non-verbal it does not mean she has not got a voice and communicates by signing. The staff at SNAP, who espouse the core values of fun, friendship, experiences and respect, have also got to know Siouxi. Lindsay praises them for their team spirit and hard work in getting to know the people in their care as well as offering support to the families and making good use of the space at the Haven.
“It is that relationship between SNAP and the Haven Centre which makes a difference,” she says. Since the centre opened a year ago, it has developed and grown. The Elsie Normington Foundation staff team has grown from two to five while SNAP has also seen its own staff team grow.
The Haven Suites have provided short breaks, overnight stays, emergency respite and independent skills sessions with families from Inverness-shire, Nairn, the Isle of Lewis, Brora and Fort Augustus and many other places in between. The café, open five days a week and is staffed mainly by volunteers, has welcomed centre users, members of the public and the local community to enjoy homemade treats, coffees, lunches and snacks. All the money made is invested back into the charity to develop the services.
The café will soon develop supported work placements for young people with additional support needs and disabilities. Elsie Normington, chairwoman and founder of the foundation, described seeing the centre fully operational as a dream come true and said it provided a lifeline to many families. “We remain ever humble and thankful for the support shown for our charity by the local community and beyond as we have navigated our first year of operation,” she said.
“We are a small charity with big ambitions and will continue to develop and deliver new projects in the Highlands which will support local children and young adults with learning disabilities, and their parents and carers." SNAP chief executive Dawn Walker, said feedback on the centre and its services has been “fantastic” and being part of the Haven was a dream come true for the team. “Being here has allowed us to create so many more opportunities for children and young people in Highland with learning disabilities or complex needs to have a place where they feel they belong while having fun in a supportive atmosphere,” she said.
“We now have sessions such as toddler groups, young adult (over 16s) sessions, and family play sessions at the Haven that families or carers can book to attend, allowing those who don’t have a place at our current clubs to be able to access the facilities that SNAP run at the Haven.”.
