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IRELAND: 'We are broken'; desperate autism parents get no support

Sept 9, 2023, Independent: ‘We are broken, we are tired’ – Stark report outlines how families of children with special needs are left to fend for themselves Some parents prescribed anti-depressants to cope, while others forced to delay doctor appointments
A lack of appropriate services and supports for children with special educational or acute needs is forcing parents to delay urgent self-care and medical appointments, with some left relying on anti-depressants.

More than 20 families have spoken about their experiences of daily struggles to support children with autism or intellectual disabilities this summer without access to vital services and structures.

A new report, compiled by parents in difficult situations, shows the stress they manage daily. School closures over the summer months are highlighted as a significant factor, with very few of the parents able to get access to summer programmes provided by the Department of Education because schools may opt out of them.

Poor access to respite care, Child and Adolescent Mental Health Services (Camhs) backlogs and a lack of residential care places are also cited as factors contributing to burnout, parents losing work and a visible deterioration in their children over the summer months.

“As a family, we are broken, we are tired,” said one mother of a nine-year-old girl who is autistic with a moderate-to-severe intellectual disability.

“Myself and my husband both work full-time in order to pay the mortgage but I don’t think we can continue. We are barely functioning in work and the strain of our home life is starting to affect our productivity in work.

“[My daughter] is constantly screaming. Not just shouting — I mean banshee-type screaming. She’s hurting herself by punching, pinching and throwing herself against walls and furniture and she’s attacking her family. She has regressed in every sense of the word.”

Parents pointed to cases where siblings of children with special educational needs were isolated because parents struggle to juggle life at home.

The report, seen by the Sunday Independent, was compiled by the Special Needs Schools and Classes Parents’ Group. It asked 24 families to outline how they coped with the care needs of children over the summer months.

These first-hand accounts are due to be sent to ministers and TDs in the coming days. Many of the parents cannot be identified to protect the anonymity of their children, but a spokeswoman for the group said school closures disrupted many of the children.

“As the majority of special schools do not run the summer programme in school, many children with high support needs were left facing a long summer break with the structure and routine that they are used to simply pulled out from under them abruptly,” she said….

The Department of Education said “children with the most complex special educational needs, especially in special schools, should have access to a school-based summer programme”, so it has tried to expand this.

It said 42,000 children participated in summer programmes last year, a 300pc increase compared to 2019, and efforts are being made to increase this further.

One Government source said they would like to see more schools provide summer programmes, but it is not possible to compel them.

“We have doubled funding to €40m [$43M] but unfortunately we cannot turn around and demand they open, because contractually they are not obliged to,” the source said….

Unfortunately, as the years progress we don't see a future where we can continue to live with the current lack of supports. My husband took five weeks’ unpaid leave from work to support our sons this summer as I cannot support two grown men with high support needs and a severe seizure disorder….

The school wrote to us in December stating that they would have to consider his place there in the new year if he wasn’t able to participate. We were devastated and the stress on our family was unreal. No one was able to help….

My boy has potential. I am screaming out for services for him to reach his potential but no one cares. He desperately needs speech and language therapy.

His frustrations stem from not being able to communicate. He needs a psychologist for his extreme moods. He needs an occupational therapist and a nutritionist and a dietitian.

I cannot keep going. I feel like I am in an abusive relationship with my little boy. I am not allowed to speak to another adult in his company or I will be punched in the face.

I spend all day every day trying to guess the best course of action to avoid a bad reaction. I live minute to minute.

Following the closure of school for the summer, the violence increased due to disruption to my boy’s routine.

I have had a black eye and a severely swollen nose from him throwing his head back. My chest is constantly bruised as he finds comfort in running head-first into me.

I cry most days and feel like I am failing both my children.

My children deserve so much better than this. My boy deserves a chance at life with supports and services to help him reach his potential.

His sister deserves the chance to feel safe and secure in her own home. I am desperate for help.


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