Self Care While Caring for a Child on the Spectrum


What is sanity when you have a child on the spectrum?

I ask because these special children can be very difficult to manage, especially if/when you haven’t yet been able to translate their individual language and implement effective strategies. You live your life on high alert as you work hard to meet their needs and cope with frequent meltdowns. By necessity, your definition of sanity needs to be an ever-changing, flexible thing that moves according to what is happening on any given day. On some days, you can feel like you’ll explode if it continues for a second longer, and on other days it’s positively blissful by comparison, even when everything seems to be going wrong!

It can feel like the tough stuff never stops. And then the smallest of things will remind you why you keep doing what you do. You take a moment to feel the pride in your child’s accomplishment, inhale a deep breath, and continue to expend every ounce of your energy into meeting his or her needs.

And then, somewhere along the line, you realise that you forgot to take care of you. The daily grind of getting your spectrum child (and any other family members) through each day, week and year takes its toll. You feel tired and stressed, and on the rare occasion when you have more than five minutes to yourself, you feel restless and unable to sit still. And if someone asks you how you’re doing, it releases a flood of tears that seem to come from nowhere! You feel like you should be coping better and you feel guilty when you can’t.

Trust me when I say that you’re not alone. At a guess, I’d say about 85-90% of the people I work with feel the same. And the science backs this up. I’ve done a lot of study about how the brain and body react to stress. Every time you encounter a stressful event such as your child having a meltdown or becoming violent, your brain interprets this to be a threat to your survival. The body’s inbuilt survival mechanism is activated. Your body is flooded with stress hormones (adrenaline and cortisol, for example), the purpose of which is to prepare you for either flight or fight.

The first few times this happens you can cope reasonably well with it. You take a little time to recover and you’re ready for the next round. The thing is, you’re dealing with a child on the spectrum. If you’re not coping with a tantrum or meltdown, you’re managing the many things associated with it. Therapy appointments, school meetings, researching strategies and techniques, attending support groups, nurturing your other children, and just generally maintaining a household that functions. Chances are high that you don’t have a whole lot of time to recover before the next onslaught.

When you don’t get this recovery time (which is what your body is designed to do) your survival system remains activated. Your body is continuously flooded with adrenalin and cortisol and it adapts and gets used to being on high alert. This state of being becomes your new normal, which happens gradually so that you don’t notice you’re living in a heightened state. And then, on the rare occasions when you get to stop rushing around your body can’t cope with the slower pace. It literally starts going into withdrawal from the stress hormones and you feel restless and antsy as it tries to come down from the high. You can feel like you’re about to climb the walls.

I mentioned earlier that your body is designed to be in survival mode only for short periods of time. The idea is that you get through the crisis (the thing that threatens your survival) and then allow rest and recovery to return to normal functioning. When your survival system is switched on for long periods (also called chronic stress) your body begins to break down.

Your immune system weakens, you crave carbs and sugars, it’s easier for you to gain weight and harder to drop it, you become more prone to heart disease and diabetes. You’re also more likely to be moody and your ability to cope with day to day challenges is reduced. And the list goes on.

And aside from all the physical risks, your family will undoubtedly pick up on your emotions. Even when you try to hide it from them, your children (especially your spectrum child/ren) are sensitive to that energy and will reflect it back to you. Have you ever noticed how, when you feel tired and cranky, your kids’ get into all the things you ask them not to? This feeds into your moods and creates a cycle of negativity and craziness that has you wanting to pack your bags and run away from home!

The fact is that if you want your household to be calm and peaceful, it needs to start with you.

The greatest gift that you can ever give your children is a parent that takes care of him or herself.

When you’re so used to living in a heightened state it can be challenging to put yourself first, especially if you have never done it before. The following list will give you some ideas on how you can do just that. The key to success with this is to start with small, achievable things. Things that you feel will be easy to implement and maintain. Once you have mastered the first small change, implement the next one. Continue making small changes and you’ll soon notice the difference in your life. These are in no particular order (except for number 1), so start with something that you feel is achievable for you.

Diaphragmatic breathing- When your survival system is activated you breathe shallowly in order to obtain as much oxygen as possible, as quickly as possible, with the aim of getting away from the threat. Your body and mind learn that this is normal and it sets a “program” to say that this is how you breathe. Turning your survival system off is achieved by breathing from the diaphragm. This relaxes your muscles, calms your breathing and signals your body that you are safe and no longer under threat. It promotes blood flow around the body and allows you to think more clearly. Practicing this regularly also helps you to “reprogram” your default breathing so that in a crisis you naturally turn to the deeper breath. Once you learn the technique, the best time to practice is before you get out of bed (when your body is relaxed) and last thing at night (which relaxes your mind and body to get it ready for sleep). Start with just 5 breaths each time you do it and build up to allow your body and mind to get used to it. Aim for 20-30 breaths. You can ask your counsellor or psychologist to show you how to do this kind of breathing, or there are plenty of apps these days if you have a smartphone or tablet.

Talk to someone- Sometimes getting things off your chest and out of your head can be invaluable. This can be with a trusted friend/partner, or a professional such as a psychologist or counsellor. This can allow you to offload and sort through anything that might be troubling you.

Mindfulness- This is the act of being fully present in the moment. I like to think of it as the opposite of being caught up in the chatter in your head. If you’re in the moment, you are fully aware of your surroundings and what is going on in your environment. You might know what it’s like to be on automatic pilot as you drive your car and to not remember your trip home. This is mindless. Being mindful will have you remembering the turns you made and the things you saw. To bring you back into the moment try naming 5 things you can see, 5 things you can hear and 5 things you can feel. Then repeat that process but name 4 of each. Repeat again and name 3. Continue counting down till you get to one of each, and then spend a few seconds checking in with your body and mind to see how you feel. This technique can help you to feel more relaxed and to quiet the mind chatter. If you try it as you’re going to bed, it may help you to get to sleep a bit quicker.

Play- Rediscover your childhood by allowing yourself to have fun. Relax and simply be.

Pamper yourself- This can be getting a professional massage, mani or pedi. Or you can do it yourself. Have a relaxing bath, give yourself a facial or a complete body exfoliation. Anything that will make you feel pampered and relaxed.

Movement/exercise- Moving your body can have incredible benefits. Try to tune into your body and what it needs in any given moment. You may have an excess of energy you need to burn off or you may need to nourish with gentle movement. Your body will tell you what it needs by sending you urges to do different things. A gentle walk in nature, a run on the sand, some boxing, a game of cricket, dancing, cycling, hiking or simple stretching could all work well. There is no right or wrong way to move. Trust what your body’s telling you, follow its cues and find something you love.

Healthy, nourishing food- Take care of your body by feeding it food that will nourish and give you the energy you need to get through your busy day. I know it’s difficult to find time to prepare, but for your overall health and wellness, it’s worth the effort and you do get used to it (something I am learning myself). Remember to start with small achievable steps.

Boundaries- Say no, especially when you’re being asked to give up your down time. This may be difficult at first, and obviously, there are times when emergencies happen, but if you are always giving away your own time (even to your partner and kids), you will forever be withdrawing from your energy account. You need to make regular deposits into this account in order to have something to withdraw.

Fill your soul with joy- Do things you love. Things that make your heart smile. Things you are passionate about. Things that fill you up.

Laughter- Watch a funny movie, read a book, see a show, watch YouTube videos, attend a laughter therapy group, or play with your kids or pets. Do anything that makes you laugh. It relaxes your muscles and releases all kinds of feel good hormones into your bloodstream.

Take time out- Regular time to yourself (which can be used for everything else on this list) can support you to fill up your energy bank account.

Sleep- Getting enough quality sleep can never be underestimated. Everything seems so much worse when you’re tired so getting enough can be invaluable to helping you manage everything you need to deal with when you have a child on the spectrum.

Ground yourself- When you’re feeling frazzled and stressed sometimes the best thing to do is take a few minutes to come back to centre and rebalance your energy. A good way of doing this is to literally make contact with the ground. Try taking your shoes off and walking barefoot on the grass. Or sit under a tree. Lay back on the ground and watch the clouds skid across the sky. The more skin you have in contact with the earth the better. If possible try to do this in an area you connect with; near the water, on the sand, in the mountains or even in the outback. Whatever resonates most strongly with you.

Natural therapies- Massage, kinesiology, acupuncture, Bowen Therapy, Qi Gong. These are just some of the many natural therapies available. Sometimes these alternatives to western medicine can support you to regain your balance.

Physical health- I see many parents who neglect their own medical care due to a lack of time and the demands of their spectrum child/ren. Ensuring your own health is taken care of will help you to prevent serious issues down the track, which will ultimately benefit your children. A short term time out to get things taken care of is always better than a prolonged absence if you fall over from stress.

Spiritual practice- When highly stressed it can be difficult to find time to connect with your spirit. But I believe it’s important to do because it helps us tune into a part of ourselves that keeps us connected to the essence of who we are. We all do it a little differently. For some, it’s going to church. For others, it’s through nature or simply by spending time with ourselves and our creativity. Regardless of how it works for you, spending this time can help you to regain your energy.

Creativity- We are all creative in some way. Art, writing, colouring in, mechanics, photography, craft, woodwork, cooking, sewing, dance, music, cartooning, or making videos. The list is endless. If you don’t know what works for you, try something and see how it fits.

There are plenty of other things that can be added to this list. It’s limited only by your imagination. The idea is to simply provide you with a place to start. Don’t try to do everything at once as it will likely leave you feeling overwhelmed and pressured to do it all. There is no right or wrong way to take care of you. You are a unique individual and your self-care is also unique. You might like to do some things with your family or friends, and other things by yourself. Some will be great for your child on the spectrum to share in, and others won’t.

Whatever you choose to do, start small and build it up. It’s normal to feel lost at the beginning. It’s ok to feel like you don’t know where to start. Since the idea is for it to be self-care, try starting with something you feel drawn to. See what jumps out. Or try something that’s not even on the list! Do what works for you. Have fun with it and take away the pressure to do it perfectly. There’s no such thing.

As always I’d love to hear about your experiences in the comments below. I’d encourage you to share the things that work and the things you find challenging. I’ll comment where I can and hopefully, that will help you tweak things to make it work better for you.

Taking care of you will not only help you, it will give your children a more relaxed parent who is better able to remain calm when things don’t go according to plan. Also, by taking care of you, you are sending 2 clear messages to your family. First, it says that their parent deserves to be taken care of. And secondly, it gives them permission to take care of themselves.

ali headshotAli Bengough is currently studying her Masters degree in Applied Psychology at the University of Queensland. She has been working as a counsellor for ten years and loves what she does. She is passionate about helping people find their purpose and overcome the barriers that hold them back from living their dreams. She blogs over at The Mindset Effect, where she writes about anything related to the way we think and feel. This is complimented by aFacebook page andTwitter account. She loves to hear from her readers and welcomes feedback on what they would value reading about. When she graduates, Ali plans to use her blog to launch her business, creating a comprehensive site offering a variety of individual sessions, group workshops, online programs and other resources. She is currently in the process of writing the first of many books.


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