âI lost two years of income when my son had to miss schoolâ
Two years ago, Kirsti Hadley was a self-professed âworkaholicâ running a successful business, and working with international clients such as Google, Nike and Samsung.
However, the single mother says she has since been forced to give up her job to look after her son and is âonly just holding on to my house by the skin of my teethâ.
Her son, 13, has been diagnosed with autism, ADHD and OCD and he struggled to adapt with the transition from primary to secondary school.
Miss Hadley, from Brighton, said the lack of suitable provision for children with special educational needs and disabilities (Send) at her sonâs secondary school left her with no choice but to withdraw him from education.
Despite years of trying, she told the BBC she has been unable to get him an education, health and care plan (EHCP) â a legal document which requires councils to meet a child or young personâs needs.
The time spent out of school rocked her sonâs confidence and left him feeling âbrokenâ.
The school has since set up a Family Forum âto support all studentsâ, and its head teacher added all schools âare supporting a very high level of need with little resourcesâ.
A spokesperson for Brighton & Hove City Council said it is âcommitted to working closely with families to provide local children with the most appropriate education and to identify any additional supportâ.
While her son was absent from school, Miss Hadley was not able to work.
At the same time that her finances began to dwindle, she began to struggle with her mental health.
âThe downward spiral is so swift that it sort of gives you whiplash,â said the 51-year-old.
It means Miss Hadley â who described her business as âmy second babyâ â now relies on benefits to support her family and pay her mortgage.
âI feel like I shouldnât have been in that position of dipping into the public purse.â
Miss Hadleyâs son has started back at school this term â and she hopes to return to work soon â but she added âthere needs to be a solutionâ for parents of children with Send across the UK.
âItâs horrific,â she said.
Miss Hadley spoke about her experiences in front of a live Womanâs Hour audience on Wednesday, where experts, parents and children themselves were invited to talk about Send provision in schools across the UK.
A survey by the BBC Radio 4 programme suggested 73% of mothers think the various Send systems in England, Wales, Scotland and Northern Ireland are broken.
School standards minister Catherine McKinnell told Womanâs Hour that the government wants to âput education back at the heart of national lifeâ.
âBy doing that, we get education right for everybody and we get the best for every child,â she said.
Some parents told BBC News about their better experiences.
Nigel Stansbie, from Burnopfield in County Durham, said he accepted that there might be problems elsewhere, but that his own familyâs experience was âhugely positiveâ.
His eight-year-old son, who has Downâs syndrome, is in Year 4, and has received lots of education support from the local authority since he was born.
âWe have constant communication with them â heâs had a one-to-one from day one,â he told BBC Radio 5 Live.
âWeâre not in a particularly wealthy part of the country up in County Durham, but the school have actually managed to fund [his additional needs] without an EHCP.â
âI should be sitting my A-levels right nowâ
On the other hand, 17-year-old Katie Nellist â who is autistic â told Womanâs Hour the school system âcompletely ruinedâ her life.
At primary school, before she was diagnosed, Katie started to âreally struggleâ with the âpressureâ of Year 6 exams.
She says the school leadership did try to help her, but that she did not receive the support she needed â and has since been diagnosed with post-traumatic stress disorder, which she says has been linked to her time there.
Katieâs primary school said it âalways worked hard to reduce the pressure on our childrenâ sitting exams and it âfully supportedâ her decision not to take Sats.
The head teacher added the school remains âproudâ of Katie and âhow she is acting as such an amazing advocate for young people with Sendâ.
Katie later struggled to cope with the âoverwhelming, and loud, and busyâ environment of secondary school. Although she says the school was supportive, she âcrashed out completelyâ with a mental health crisis, after three months.
She then tried to find a place at a specialist school for children with Send â only to be told by the council that all the suitable locations were full.
An Oxfordshire County Council spokesperson said it is unable to comment on individual cases.
âFighting every step is so hard,â said Katie.
She added that the county council â which is responsible for making sure children in the area receive appropriate education â was âfailingâ to help her.
Katie tried a couple of other alternative schools, which âdidnât work outâ either, and has now been given an EHCP specifying that she should continue her education outside school.
Although she is now learning to be a horse-riding instructor, she wishes she was still in school.
âI should be sitting my A-levels right now but Iâm not,â she said.
âThat is not good enough because I know that I am smart and I would like to learn.â