Jaclyn Harron, COS – Member in Focus #51

Interview with Jaclyn Harron from Circle of Support

Tell us a bit about yourself and/or your organisation.

My name is Jaclyn Harron, I am 41 years old and married to Simon. We have 3 children, Eoghan age 12, Conal age 10 and Aoife age 6. I work as a Data Scientist, having obtained my PhD in Social Work from QUB in 2012, and volunteer as a Grants Officer with Circle of Support (COS) for Autism Families.

In 2017, when my daughter was 2 years old, we realised that her development had started to regress and the few words she had stopped and she would not answer to her name or make eye contact. After speaking to our Health Visitor, she decided to refer Aoife to Community Pediatrics. At this appointment, the Paediatrician told us that Aoife had Global Developmental Delay and was likely on the autism spectrum. At this stage, I did what I always do and started to research to find help and information and this is how I found COS.

COS aim to make a practical difference to children and young people with Autism Spectrum Disorder (ASD) by providing a strong support network and a range of activities and services available to all and any families and children in need. Their objectives are to:
• Be child and family centred;
• Offer support to parents;
• Provide support to siblings and the opportunity to meet and form friendships;
• Reduce the feeling of isolation experienced by families with children who have additional needs;
• Develop a community of Autism through a support network; and
• Further raise awareness, acceptance and inclusion of Autism and other related conditions in the local community.

It was a further two years before our daughter received her formal diagnosis of ASD and, during this time, the support and advice I received from other families through COS was invaluable. I have made lifelong friends and nothing is ever too much to ask. Although COS is fully parent-led (we do not receive any government or statutory funding), all families take time to help each other where they can.

How well have you/your organisation adapted to the pandemic?

COS is a charity that is run by autism families for autism families so, as our group is fully parent-led, the lockdown due to the pandemic was particularly difficult for us in terms of supporting our families with our usual outings for children. During lockdown, we continued to provide support virtually in terms of advice on many issues facing children and young people, which became more prevalent during lockdown with many services for families being stopped. Families of children with autism told us that they were very isolated during this time and, with all routines such as school cancelled, children’s lives were disrupted causing distress to both them and their families.

We have a private group on social media where we can engage with all of our members and we do so on a daily basis. The group is used as a support network where parents post questions or issues and there are contributions from the wider community of parents. In addition to continuing this, we also ran a few other socially distanced projects during lockdown such as:
• Providing all registered families with packs of face masks, accompanied with a social story to help the children and young people either wear a mask or to understand why those around them were wearing them.
• Delivering care packs to families of older children.
• Running arts and crafts competitions online.
• A drive through Santa experience at Christmas time where children could visit Santa from the safety of their car and received a gift and a photograph.

We are looking forward to getting back to what we do best and that is providing face to face support for families that need it most.

How well have people/organisations in your area collaborated throughout the pandemic?

Many of the community and voluntary organisations in the area faced their own individual challenges and collaboration was difficult with many of our families housebound. However, there were some positives with a lot of organisations starting to provide their autism training and information sessions online.

In the past, families may have been limited in what they could attend due to work and family commitments and the distance they could travel to attend training. A lot of agencies collaborated to keep training available and move online. I was able to attend many things that I couldn’t have before due to work such as sleep training, toilet training and a 6 week long wellbeing course.

What key needs are becoming apparent and/or are likely to arise this year?

It has been a very difficult couple of years for everyone and families of children with autism been particularly badly affected with much needed therapies and supports being removed at short notice. We are seeing a substantial increase in requests from families to join COS, there were 52 requests for membership last week alone, and this is indicative of the effect of the pandemic on families.

It is likely that we are only seeing the tip of the iceberg in terms of the long-term damage of the pandemic to all of our children and the most vulnerable are going to have a lot of key needs to be met in the coming year such as access to advice, therapy and additional family support.

ASK: What do you need, right now, that the members of Community Network NI and/or the wider community may be able to help you with?
What we need right now is more visibility in our community. We need all families of children and young people with autism to know that we are available to support them. If any of the members of Community Network NI have contact with autism families, or have anyone in their own family, who needs support please ask them to contact us 
👋 If you would like to respond to this ask, please follow the link below and enter “COS” to the first field.

OFFER: What support are you currently offering and are you open to members of Community Network NI and/or the wider community making contact?

We are open to everyone that needs help and support with regards to autism. We are currently in the process of opening a new purpose-built community centre for children and young people with autism. The centre will be child and family centred, providing therapies for all ages and abilities on the autism spectrum through music, art and play-based therapies. The centre will be a hub for families to meet and provide support through a weekly youth club, drop-in service, autism training for the wider family and sessions from Statutory Agencies and autism professionals.

If any other members provide additional, similar or complementary support, we can also signpost families to them.

👋 If you would like to be connected with this offer of support, please follow the link below and enter “COS” to the first field.

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