The family faced a difficult time ahead as they struggled to find the right help.
There were five different schools to contend with but Lindsey’s son is now 17 and settled at The Scott Centre, a special support facility at The Littlehampton Academy.
What Lindsey needed was information and when she joined West Sussex Parent Carer Forum in 2007, in its early days, it changed her life.
“I felt immediately that I had support and help from other parent carers who knew my situation and could understand,” she explained.
“We first worked from someone’s front room and since then we have grown from strength to strength.
“It helped me immensely. Part of the reason why I got involved is because I had such an horrendous experience.”
Lindsey, who lives in Worthing, is now a trustee and her role on the management team has enabled her to share her experience and give back to other parent carers.
It was her influence that changed the format of the forum meetings just over a year ago and helped them to evolve into a more practical information and networking event, called Coffee, Cake Info and Networking (CCIN) .
“What people want is information,” she explained.
“They want to know what services are out there and who is going to support them to support their children.
“We wanted to provide coffee and cake and give them a chance to network while offering the information they want.
“We fill the venue with stands from organisations from all over the county. It gives them an opportunity to get out to the people in the community and talk to the families about the services they offer.
“It also gives the parents the chance to come out for a while and talk to people face to face. We usually get lots coming and it is a relaxed atmosphere.”
There are four set venues – Crawley in January, Bognor Regis in April, Billingshurst in July and Worthing in October – and the forum will run the CCIN at each, once a year.
Although the meetings have grown, with 90 families turning up at Crawley this year, the team still wants to increase parental engagement to ensure parents from all backgrounds are represented.
The next CCIN will be a drop-in session at Bersted Park Community Centre, Lakeland Avenue, Bognor Regis, on Wednesday, April 5, from 10.30am to midday. Coffee and cake will be provided and children are welcome. There will be about 20 organisations represented and plenty of information available.
There is also a special event targeted at the older age range, 14-plus, to help parents find out about what happens after school and what support is available. First Steps to Adulthood will be at Horsham Youth Centre, Hurst Road, Horsham, on Wednesday, March 8, from 6pm to 8pm. This is an information sharing, drop-in event.
Visit westsussex.local-offer.org for details.
West Sussex Parent Carer Forum is an independent parent carer led charity representing the views of members in the county.
It works in partnership with the local authority, education, health, social care and other organisations to positively improve the planning and delivery of services for children and young people with additional needs and disabilities and their families. It is pan-disability for young people aged up to 25 years old and parents can join for free.
There is an office in Littlehampton and administrator Niki Websdale is the only paid member of staff, the rest are volunteers.
Trustee Lindsey Butterfield said: “Historically in the county, it has been a Parent Carers Action Group. It was four times a year and covered the whole of the county, so it was quite a big remit. It was in joint partnership with West Sussex County Council.
“It was basically like a meeting for a couple of hours and you would have one of the parent carers and one of the professionals addressing the meeting. It was a bit of a chance for the local authority to be in the same room as parent carers.
“As it went on, it became apparent that no parent carers were coming along, the room was filled with professionals and people from the voluntary sector. I said it is not working. We rethought the whole thing and organised four set venues, going to each once a year.
“Often, although the disabled child is at school, they my have younger siblings so parent carers can happily bring them along. They come away from these events feeling much more empowered and much more clued up with all the information.
“A lot of people don’t realise what exists that can help them, for example we have a specialist dental nurse with toothbrushes designed for children with autism.
“We are getting requests from parents to come to other areas, so last year we squeezed one in East Grinstead.
“The main aim is about getting parent carers involved. We are very much at the forefront when they want to reorganise a service.
“We represent about 1,000 parents but we don’t do campaigning. We are about participating and empowering our parent carers. Training courses give our parents the confidence to ask the right questions and we help them to navigate the system.
“It keeps them in the loop and it gives them a sense of belonging.”
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