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Why I Need More Than Self-Care as the Parent of a Child With Down Syndrome

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At roughly this point last year, when I was clinging onto my teaching job with my fingernails while trying, and failing, to meet all of my daughter Betsy’s needs, I was given a piece of “advice” on how I could “cope better.” That advice was to practice “self-care.” I had no words at the time to explain how utterly dismissive, insidious and even a touch gaslighting that comment was. Suggesting that an exhausted carer is in that position because they haven’t taken good enough care of themselves is pretty damaging, not to mention dangerous. I have some words now, though.

It’s time carers weren’t dismissed, forgotten about and excluded. It’s time we were listened to, supported and given practical solutions to help us raise our children in the way they deserve. Society has a responsibility to put its arms around its most vulnerable families.

I don’t need self-care, I need society to care. I need the government to care. I need you all to care.

Rachel and Betsy standing in a field of grass and flowers.

I don’t need self-care, I need educational funding for children with disabilities to be restored to councils so my daughter can access the support she needs to actually attend school. I need her human right to an education restored, as without a legal obligation to provide the intervention requested on her EHCP, she is being denied an education because of her disability.

I don’t need self-care, I need the NHS funding restored so my daughter can access the physiotherapy services and equipment she needs. I need her to have access to the support boots more privileged families can afford to buy. I need to not have to spend two years battling with letters, emails and complaints to even get an appointment. I need her to have her human right to medical care.

I don’t need self-care, I need the DWP to recognize that Down syndrome is a physical condition that causes mobility issues. I need them to acknowledge that my daughter needs help to get around. I need them to help her be able to afford support for her hypermobile joints and a vehicle to transport her in. I need her to be enabled to move about and travel safely.

I don’t need self-care, I need a disabled badge to enable her to access places easily. I need our council to recognize the physical effect of Down syndrome on my daughter. I need them to show some empathy when I ask for an extra two feet in a disabled parking space to get her into her pushchair safely. I needed to spend the time I allotted to writing and appealing the refusal of a blue badge on working towards mobility goals with my daughter.

I don’t need self-care, I need the DLA department to recognize that sleeping on the floor of your child’s room in order to monitor her breathing and administer inhalers is doing care at night time. I need them to treat me like a human being and not a robot.

I don’t need self-care, I need the government to build more social housing so we have a chance of escaping our current housing situation. I need you to care about my daughter having a secure home for her future that we can afford. I need them to care about families trapped in expensive private rentals they could afford before they had to give up work to become a carer. The problem is that our rent isn’t “expensive” to those in government. It’s a drop in the ocean to them.

A banner promoting The Mighty's new Caregivers' Corner group on The Mighty mobile app. The banner reads, Get the support you give. Join the Caregivers' Corner to connect with others who are taking care of someone with a health condition or disability. Click to join Caregivers' Corner.

I don’t need self-care, I need to be earning the U.K. minimum wage. My job is 24 hours a day, 7 days a week, for which I get paid £67.25. That equates to 40 pence an hour. I used to work full time. After spending two years in and out of hospital with my daughter, while at the same time trying to fight battles on all fronts to get her the services she needs, it became impossible. I left my career to manage my daughter’s care. £67.25 a week keeps us trapped in poverty. I need the government to care about us being able to afford to eat. I need them to care about my daughter’s standard of life.

More than anything, I need you all you care. I need the voices of people who aren’t as exhausted as we are to raise up and argue our worth to those who have the power to change things. And then maybe, I might not have to spend every night wrestling with prejudice.

If everyone cared about our children with disabilities, and if everyone held the government to account over their treatment of children with disabilities, perhaps we might actually have time for a little self-care.

Originally published: June 14, 2020
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