‘The system has let us down..I’ve lost all hope’
NO SCHOOL PLACE YET FOR AUTISTIC FRANKIE (5)..AND PARENTS BOTH ILL
A MOTHER is “losing all hope” for the future of her autistic son, who still doesn’t have a school place as she and her partner are facing serious health issues.
Shauna Spain (31), from Swords, Co Dublin, is pleading for help as her non-verbal son Frankie (5) is without a school place three weeks into term.
The mother is terrified he will continue to regress without socialisation and expert help. Frankie has always been at home as he was refused by 43 playschools and never got a place.
Now, the parents are struggling to get him into primary education. They have applied to 30 schools and he hasn’t yet been accepted.
Shauna told The Star: “We’ve had him down for numerous schools and he is on the waiting list on many ASD units. We’ve had no real help with trying to get him into a school. At this stage, I’m losing all hope for my child’s future.
“The system has let us and so many other families down beyond belief.”
The situation is even more desperate as Shauna and her partner are both struggling with serious health problems.
Shauna was released from hospital last week after being diagnosed with Functional Neurological
Disorder (FND). She suffers from eight to 10 seizures a day.
FND is a medical condition that impacts the functioning of the nervous system and how the brain and body send and/or receive signals. It can cause symptoms like limb weakness, tremors, numbness or blackouts.
She said: “I’m really struggling to walk with my left side being so weak and am constantly feeling like I’m going to faint.
“The thing with FND is because it doesn’t show on a scan a lot of people can think your symptoms are fabricated or made up, which is so frustrating because you want your body to work and it feels like it’s failing you.
“I’ve been out of work a long time now caring for my partner and my son, who both need full-time attention. We’re all just trying to rally together to make the best of a bad situation.”
The young family has been through the wringer. In July 2023, Shauna’s partner Darren Edgeworth (43) was diagnosed with Central Nervous System (CNS) Vasculitis after suffering nine strokes.
Surgery
He was working as a security manager at a late-night bar, but since then has been unable to work, and it is unlikely he ever will.
The father underwent brain surgery and doctors found a 7cm bleed and aneurysm in his brain, but are reluctant to remove it as it could cause further damage. CNS Vasculitis is a rare disease that causes inflammation of the small arteries and veins in the brain and/or spinal cord.
Darren underwent six months of chemotherapy, infusions and steroids and he is now on a lowterm treatment plan at home.
Shauna added: “This has really taken its toll on him and us as a family.
“Darren’s peripheral vision is gone in both eyes, due to the strokes, he had an eye bleed, and he suffers from nerve pains daily.
“The illness he has can go into remission but it is not curable, it can only be treated.”
Shauna said her family has not yet been given any support, and they are “completely alone and struggling”.
For this reason, her friends have set up a GoFundMe account with a target of €6,000 to help the family cover rent, food and utility expenses for the next eight weeks.
A spokesperson for the Department of Education said the National Council for Special Education is “continuing to offer support and guidance to the family”.
They added: “The provision of appropriate school places for children with special educational needs is a priority for the Government.
“In response to an increased level of need for special education placements, the NCSE and the Department have worked with a number of schools over the summer period to provide extra capacity.
“It is expected that there will be further progress in relation to the admission of students into these additional places very shortly.”