Caregivers burnout: Tips For Parents Of Children With Autism And Other Special Needs

Techniques Parents Of Children With Special Needs Can Use To Manage Caregivers Burnout

What is caregivers burnout?

Parenting a child with special needs can be full of joy.  But the stress caused by the systems that are supposed to support us, the injustice of battling for resources and support, alongside the challenges of meeting daily care needs, and balancing fairness for siblings, can be relentless and overwhelming, and when our kids need our help we just keep going beyond anything we thought we were capable of.  

There are multiple physical, mental and emotional challenges you might be experiencing.  Constantly chasing a child who is never still, maybe with no sense of danger.  Lack of sleep. Trying to work out solutions, searching for reasons for challenging behaviours.  Considering what to do for the best.  Pain when your child hurts or rejects you.  Dealing with judgement, isolation, lack of social support.  

Feelings and signs to look out for that signal you are burnt out

You might feel guilt or sadness.  You may be feeling pressure to fight and change the world when you already have too much to do.  You may worry how this happened to your child, and if other children in the family or future might be affected.  Simple daily activities and schedules can feel like huge mountains to climb every day.  You might have additional financial issues as your ability to provide for yourself and your family changes.

We all have different coping strategies when times get tough, avoiding feelings, keeping busy, often we are putting everyone else’s needs at the top of the list so ours never get a look in.  You might say - ‘How can I take care of myself when my child is struggling/in pain/in distress?’.  You cannot pour from an empty cup.  You must look after yourself too.

 Telltale signs of impending burnout:

1. You may notice changes in your sleep.  These might include not being able to get to sleep, or waking frequently and unable to get back to sleep, or sleeping but waking exhausted.
2. You may not feel any pleasure at what you normally might, or feel like you are not fully ‘there’ at important moments.  You may feel like you are ‘pulling away’ from friends and family.
3. You may suffer from anxiety and constant worrying that doesn’t ease.
4. Stress over a long period can cause post duress stress, constantly rescuing your child from dangers in the home can cause PTSD.  You might get flashbacks to near misses, or visual flashes of potential dangers to yourself or your child.
5. You might be feeling overwhelmed and depressed and every task feels too much.  You might feel like you simply have nothing left in the tank.  You might have brain fog and be more forgetful than usual.
6. You might feel like your emotions are close to the surface, unpredictable or intense and quickly changing.
7. Your weight might increase, or decrease dramatically.  You might suffer other health issues such as high blood pressure or gastrointestinal issues.  You might find you catch every bug going and take a long time to recover.  Your self esteem may be low.
8. You may start to notice an increase in alcohol or drug use, or overspending, or gambling, or other behaviours that might suggest you are not coping with your stress levels.
9. You may have feelings of wanting to hurt yourself, or others, or imagining extreme ways to bring an end to the struggle

Techniques you can apply to manage caregivers burnout

Parenting a child with additional needs is likely to be a marathon, not a sprint.  You must try to pace and look after yourself.

1. Hydration – are you drinking enough water to flush and hydrate yourself? 
2. Sleep – you can’t function well without it. If you aren’t getting enough, what steps can you take?
3. Nutrition – it can be hard to afford the money and time to eat well.  If this is the case for you, get some supplements.  Feed your family for £20 is a handy book for eating well with less.
4. Movement – are you getting enough exercise?  It doesn’t have to be a gym, it can be a walk around the block, or a dance around the kitchen.  What movement are you doing for you?  Are you getting outside for fresh air?
5. Connection – how are you connecting to other people?  Are you getting to do any activities that take your mind elsewhere and don’t involve a screen?  Having a craft or a hobby can feel like a ridiculous suggestion, but any tiny moments of ‘flow’ you can create will help.  If you don’t have much available time or cash there are lots of short relaxation videos free on Youtube.

Having a child with SEN often means endless health appointments and tough meetings, schedule in time after the appointments to allow space to process them.

Spend a little time trying to remember what you like and noticing what energises you to see if there are ways you can bring small amounts of this into each day

Keep notes for how you are feeling, energy levels, any unusual symptoms.

Make a self care plan.  You don’t have to change the world overnight, small, sustainable steps are sometimes better than huge changes.

Ask for help.; It's hard to ask for help, or to admit that you are struggling. Remember it's ok to ask and it's also absolutely ok to be specific about what help or support you really need.  It may be someone doing online research for you, or cooking a couple of meals for the freezer, or other types of help that are less obvious.  Think about what would really make a difference for you.

If you struggle to find babysitters or child care options, reach out to join local groups.  There are often social groups or support groups specifically for SEN or sensory children where you might be able to get recommendations for babysitters or helpers with more specific experience.

Note the behaviours of your child that are causing challenges and see if you can get help with behaviour strategies.  

Take a break from social media.  Seeing everyone’s summer holiday photos when you are struggling to get through each day is not helpful.  Seeing online judgements and criticisms is also deeply draining.

Don’t be hard on yourself.  Caregiver burnout is not failing, It is simply that you have been working at chronic stress levels around the clock without a suitable break.  Are you expecting too much of yourself?  It’s ok to reduce expectation levels at difficult times.  It’s ok to say no to extra events or requests.  Boundaries around your family and your energy levels are absolutely valid and healthy.  Be honest with yourself about how you are feeling, and if asked how you are, try to be truthful.  Talk to someone you can trust.  If you don’t have a friend or family member available who understand, reach out to mental health services, charities or helplines.  If you are burned out you should also talk to your GP who may know of local services who might be able to help.

Taking care of you is a vital part of being a caregiver.  You can’t help others if you are in bad shape yourself.  You can acknowledge and meet your own needs, take time, treat yourself, without feeling guilty.