Tips for Avoiding Burnout When Caring for a Special Needs Child
Posted on 12th October 2020 at 17:45
By Julie Wales, Special Needs Counsellor
Caregiver’s burnout is when the person who is taking care of the individual with extra needs is exhausted mentally, physically, and emotionally. Unfortunately, this is something that is quite common in parents who have children with special needs.
Considering the stress that parents are already under, having a child with special needs takes that extra toll on you.
Many families like mine who are caring for adults with learning disability are approaching burnout throughout the lockdown.
Being at home 24/7 with the person you are caring for brings isolation, stress, and many other mental health effects, if we are not careful at looking after ourselves.
According to Mental Health UK 77% of people agreed that increased caring responsibilities could contribute to burnout.
I remember many years ago when my then, 4-year-old son was diagnosed with Fragile X Syndrome. His sister was also struggling at school and I was trying to hold down a responsible, full time job and balance work/family life and a new diagnosis. We had to fit in numerous medical and developmental appointments weekly. As well as be teaching our son how to be in the world, teach him social skills and find ways how to communicate with him that would enable him to understand and express.
Each day when you have to offer personal care as well as emotional and social care that can take its toll. It felt to me after some time that I may be approaching burnout. I know I was feeling stressed and irritable and was having tearful outbursts at work, but it made me reflect on how I was coping (or not) and what I needed to function better for me and my family.
Sometimes it is only with hindsight that we look back and reflect what was going on and how we would have done things differently.
It was a sign to me that something needed to change. That I did and I have never looked back!
Common signs of burnout:
Feeling tired or drained most of the time
Feeling helpless, trapped and/or defeated
Feeling detached/alone in the world
Having a cynical/negative outlook
Procrastinating and taking longer to get things done
Symptoms of burnout:
A wide range of emotions throughout the day
Catching illnesses easily or feeling sick often
Feeling fatigued and run down no matter how much you sleep
Becoming socially isolated by always cancelling plans or going out of your way to avoid being around people
You have no hobbies because you feel you have no time or energy
You neglect self-care
Have problems sleeping
Having negative thoughts about your child or your situation
An American study followed a group of mothers of adolescents and adults with autism and published the results in the Journal of Autism and Developmental Disorders. The researchers reported that a hormone associated with stress was extremely low, consistent with people experiencing chronic stress such as soldiers in combat. Mothers of adolescents and adults with autism experience chronic stress comparable to combat soldiers and struggle with frequent fatigue and work interruptions. These mothers also spend significantly more time caregiving than mothers of those without disabilities.
“This is the physiological residue of daily stress,” says Marsha Mailick Seltzer, a researcher at the University of Wisconsin-Madison who authored the studies. “The mothers of children with high levels of behaviour problems have the most pronounced physiological profile of chronic stress…”. Such hormone levels have been associated with chronic health problems and can affect glucose regulation, immune functioning and mental health”.
Some tips to avoid burnout:
Ask for help.
This is something that a lot of us can do more of. We do not like to be a bother, we do not want to bug anyone with our problems, but we need to. You know how they say it takes a village to raise a child? How many villages do you think it takes to help with a special need’s child? We cannot do this alone.
You may need support from family or friends or respite carers (depending on Covid rules)
Talk to other parents and ask how they manage
School/College support teams may be able to signpost
Contact a Parent Support Advice Line
Contact Adult Social Care Helpdesk in your Local Authority to see how they can support
“You Time” Is Important
You make sure that your child is fed, dressed, clean, and satisfied. If they are bored, you find a way to keep them entertained. If they are tired, you put them to bed. But what about you? If you let your self-care slip, you will not be at 100% when taking care of your child.
Give yourself time to soak in the bath with a good book and sensory soothing candles.
Go shopping for something that no- one but you would enjoy or benefit from.
Go for a walk,
Make a Self-Care Plan and try and stick to it.
Arrange to meet a friend
Go see a movie by yourself with no popcorn spills or ten-bathroom breaks.
“You time” is important.
When you have a child with a disability, people are going to stare. People might say things that hurt your feelings or do things that make you upset, and you are going to have to learn how to deal with it. You don’t have to sit idly by while a grown adult makes fun of your child, you are just going to have to learn not to let it take a toll on you while you deal with the problem. SO many parents including my family have had to endure this, and we eventually develop a thick skin to cope with time and self-care. We cannot let other people determine how we feel because it is their stuff!
Your child with special needs is not the only important aspect of your life. In her book The Mad Myths of Parenthood Susan Jeffers offers valuable 'survival' tools to cope with parenthood, including looking at our life grid (as below) showing all the things you have in your life.
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