Her nine-year-old has Foetal Alcohol Spectrum Disorder (FASD) and Attention Deficit Hyperactivity Disorder (ADHD).
This means he has long-standing brain dysfunction, faces severe challenges with executive functioning and processing information and needs support all the time to be kept safe. He can have aggressive outbursts and needs a structured routine and therapeutic approach to help keep him calm.
Despite the challenges her son faces, his mum calls him an ‘absolute superstar’ who ‘brings sunshine to our day’, adding: “We all adore him. He’s so funny, smart, kind, energetic and full of love.”
She went on to describe how brave children with FASD have to be every day as they can struggle to fit in and understand the world.
He was diagnosed with FASD in the summer of 2019 in Key Stage 2, when it became more difficult at his primary school as they could not offer the level of support he needed. While he liked his friends and other aspects of being at the school he just could not cope.
Already on a reduced timetable, the decision was taken jointly between staff and the family to take him out of mainstream school permanently in February 2020. He has not returned to full time education since due to the difficulty in finding him a special school place.
His mum approached West Sussex County Council about support and in particular some kind of funding for respite care.
She explained: “If you are a carer, you need to be in a good place to cope with those challenges. If you are doing this 24/7 it takes its toll on you and your ability to provide the essential care these children need.”
In her personal case it has caused stress related anxiety, for which she takes medication. The situation massively affected both herself, her husband and daughter.
However she was ‘outraged and devastated’ when the county council took just an hour after her request to tell them her son would not even be assessed for support as he did not meet their criteria.
This has led to a struggle lasting more than a year to secure the support he needs and culminated in a report late last month from the Local Government and Social Care Ombudsman, which expressed concern about the council appearing to gatekeep access to its services.
In response to the findings WSCC has apologised for how it handled the boy’s case and has agreed to action the recommendations made by the West Sussex boy denied support because he had ‘wrong’ type of disability ombudsman.
Eight months after the initial enquiry, the council started providing six hours of respite care a week.
They have now been allocated a dedicated social worker and they are due a full assessment in the coming weeks.
His mum said they were ‘amazed and shocked at how brilliant the ombudsman’s report was’.
And while the county council has been told to pay some compensation it will not cover the full emotional and financial toll the last year has had on their family.
She estimates they have taken a £15,000 hit on loss of earnings and also paid for a solicitor to help fight their case.
She said: “It’s been so hard, we have just about managed with the emotional support of family and friends. I’ve been near breakdown so many times.”
It has been extremely taxing on both her and her husband who works full-time.
But she was full of praise for SENse Learning and Angling4Education, the two alternative provisions who have been ‘outstanding’ in supporting her son on a part time basis.
Following the ombudsman’s findings, she wants to raise more awareness about FASD and encourage parents and carers who find themselves in similar situations to fight for the support they deserve.
She said: “Make sure you keep going and seek help from SEND charities. Do not be fobbed off. Keep track of everything, just stay strong even if it is so hard.”
She believes their experience is not an isolated one and was surprised at the barriers they ran into considering they have gone through the adoption process twice, which is extremely rigorous.
In their case they were unhappy at being ignored when they knew their son should be assessed due to his complex needs.
His mum thinks one of the reasons they ran into such problems is because FASD is rare and hard to get a diagnosis as they had to travel all the way to Suffolk.
It has many crossovers with autism, but because it did not fit the council’s ‘box’ he was denied support, which should not have happened.
After the initial approach for support was rejected it took months of chasing for their case to make it through the council’s complaints process during which time they felt ‘pretty lost’.
She says she drew on her business experience to keep track of the huge volume of information and research while keeping a timeline, something that might not be easy for other parents in their situation.
And although they have secured him a place at a school in September, she believes there are ‘simply not enough’ SEND schools locally to accommodate children like him. She hopes the county council takes on board the lessons from their case and it now has a better understanding of FASD.
The family are looking forward to September and his start at a new school and hopefully an increase in respite care.
His mum said: “We hope the school works out and we can go back to a vaguely normal life with the proper support in place.”
She highlighted resources such as The National Organisation for FASD at www.nationalfasd.org.uk and SOS!SEN at www.sossen.org.uk