For our May issue, The International honours mothers of children with special needs - stories about strength and perseverance.
Photographs: Sara R. Newell
Text: Michaela Medveďová
In honour of Mother’s Day, our own writer Sara R. Newell shares her story of fighting to get the right help for her daughter and how she found strength in a network of other parents.
The winding road toward help
“My daughter has always had an amazing imagination and fascination with details. When she was two or three years old, I began to suspect that she had autism since she was so sensitive and would easily become overwhelmed and stressed,” Sara explains. But the first time she talked to Pædagogisk Psykologisk Rådgivning (PPR), the Pedagogical Psychological Counseling unit, they responded that she must be stressed or that it must be challenging to be a single mother. Her daughter must be reacting to Sara, so she should consider taking mindfulness classes or yoga.
“I thought it was impossible to get anyone to take me seriously because I was a foreigner. It wasn’t until several years later that I found out that this is a pretty typical scenario for parents (including Danes) who try to get the municipality to refer their child for psychological testing.” It wasn’t until 11 years later that her daughter was diagnosed with autism and ADD. By then, her daughter was 14 and was very unhappy in school and struggling socially. “The only reason we could even have her tested was that we paid for it ourselves in the private sector.”
Now, her daughter is almost 18 and is thriving in a great residential home - where she has lived for the last year and a half. “We are so grateful for the collaboration we have with the people there. They treat the adolescents living there as if they were their own. But the road here has been brutal and has had a lot of personal and economic consequences for our entire family. The struggles we have been through were incredibly unnecessary - sometimes I wonder what life would have been like if somebody had taken me seriously when my daughter was three.”
A lack of knowledge
Sara points out that while about 18.000 children in Denmark have autism, there’s a lack of knowledge about autism in general, especially about how it presents in girls and women.
When #enmillionstemmer, a movement fighting for the rights of people with disabilities and mental vulnerabilities, asked parents where they found information about special needs - only 2% named their municipality. “My experience was definitely of being sent away. It was as if the primary purpose of the people sitting across the table was not to help but to get me to go away. It is often based on people not having relevant knowledge about disabilities, but thinking that they do.” It was a never-ending story of trying to convince caseworkers that her daughter needed assistance and that it wasn’t a matter of Sara’s parenting abilities. “I was never informed of the option to apply for compensation so I could work fewer hours to help my daughter. Instead, I had to use vacation days and then vacation days without pay - I simply didn’t know any better and was never informed otherwise.”
According to a survey carried out by #enmillionstemmer, 59% of family members of people with a disability had to leave the workforce entirely because of the inability to get help.
Sara points out that it’s definitely not the children that make their parents’ lives difficult - it’s having to put the child’s needs aside to fight the system. “And then you realise you used all this energy to get the system to work instead of helping your child. Having a child with special needs doesn’t have to be this hard.”
But parents don’t have to be alone. “Realising I wasn’t the only one was a real eye-opener and a lot of help. Having a network of people to talk to meant I wasn’t so isolated and could get advice from people in similar situations. I wish I’d known about parent networks years ago.”
Different Facebook support groups were also where Sara connected with the other four parents behind #enmillionstemmer. At the start of their shared journey, there was a petition of 53.000 signatures to try to remove the responsibility for disability assistance from the municipalities’ control, where it has been since 2007.
The motto of the movement is the right help the first time. “People don’t get the right help in the very beginning - and instead, the family’s situation snowballs until they become less and less well-functioning as a family.” In March 2022, a report published by the National Audit Office criticised municipalities for the handling of disability services and criticised the Ministry of Social Affairs for failing to properly supervise the municipalities. For the parents who experienced the realities of the system, the disclosure of the report was incredibly validating.
Talking to others can also give the parents the strength to keep fighting. “Through networks and support groups, you use togetherness to help each other find the right help,” concludes Sara.