An inspiring Alexandria mum has launched a new community group to support children with complex needs and their families.
Kirsty Campbell has set up Daniel’s Wish, which is named after her seven-year-old son who has severe autism and learning disabilities.
The group already has over 240 members on Facebook and aims to support parents and carers, while providing opportunities for children and young people with complex needs to participate in activities in a safe, stimulating and non-judgmental environment.
Kirsty, 32, says there is nothing else like it in the local area and hopes funding will help realise its full potential.
She said: “The inspiration for the group is my son Daniel who has complex needs.
“He is non-verbal, has autism, learning difficulties, Pica, Raynaud’s disease which affects his circulation, and a genetic disorder.
“I have never been able to find a group that would meet his or my needs as a parent and I have found it really isolating.
“The groups I’ve looked at don’t offer the level of support I would expect as a parent as they are targeted at people with specific diagnoses.
“We recognise there is a massive demand for support for children and families with complex needs in West Dunbartonshire. Daniel’s Wish pledges to support all children with complex needs regardless of diagnosis and all of Daniel’s Wish complex needs groups will be needs-based rather than diagnosis-based.
“Daniel has more than one diagnosis and each one brings him challenges. I would need to go to four or five different groups to find support for each one.
“This area is really lacking when it comes to this kind of support.
“A lot of agencies also stayed closed after the lockdown ended and I’ve been helping families across the area who have faced lots of different challenges.”
Kirsty, who also has an 11-year-old daughter Leah, set up the group shortly after we reported on the plight of Alexandria mum Caitlin McLaughlin whose son Barry also has Pica.
The rare condition causes him to chew wall and floor coverings and Caitlin fought a two-year battle with West Dunbartonshire Council to make his bedroom safe.
Kirsty said: “It’s always been something I’ve wanted to do. When I saw Caitlin struggling I thought I can’t sit back anymore.
“Parents and carers of children with complex needs are constantly facing obstacles.
“Even in the community, you can be judged for the way your child behaves. Daniel has ticks and flaps his arms and people look at him and me.
“He is seven but still needs a buggy and I have been to some groups where I’m judged for walking in with a child of that age in a buggy.
“Just going to Asda is such a challenge. There’s so much judgement and it’s easy to feel alone and isolated, especially in the early stages when you are waiting for a diagnosis.
“I want to provide an environment where children and their parents are not judged so they can be themselves and feel comfortable.
“I also want to support parents who feel isolated at the start of their journeys, which is why we also have a group for parents of children at the pre-assessment stage, as well as those who have been going through the journey for a long time without support.
“It’s a place where parents can put a post up saying they are knackered because their child has been bouncing off of the walls all night without being judged.
“If they are up in the middle of the night and feel alone they can ask if anybody else is around for a chat.
“I’m also wanting to set up a dads group as we find dads really are the rocks of the family.
“We’ve heard a lot about men’s mental health lately and think it’s important we acknowledge they need that support too.”
As well as parents and carers of children with complex needs, the group also has members who are social workers and health visitors, who provide support.
Kirsty added: “The word about the group has got out fast and we’ve had a lot of support from outreach teams.
“Health visitors have been recommending the group to local families which has really helped.”
Going forward, Kirsty will be recruiting more volunteers for the group and has applied for funding, which will kickstart the planned activities.
She is hoping to secure a community facility with aspirations of eventually opening a dedicated centre.
Groups will include parental support sessions, arts and crafts, social clubs, sensory play, and life skills such as food preparation, washing up, hair brushing and styling.
She has also had meetings with a charity which has offered to provide sports coaches for learning disability football groups.
Anybody wishing to reach out to the group can find them on Facebook by searching for Daniel’s Wish – there is a public group and a private group.
Those who do not have Facebook can be put in touch with Kirsty by calling us on 0141 309 3515.
