Self Care when you are a parent of special needs kids

Self Care is important for everyone, regardless as to whether or not you have children. Having children in general impacts the implementation of when and where you can go to do something to “fill up” your reservoir of patience and energy. For some, it’s simply getting a nap in when they can. For others, it’s being able to exercise to some degree and still others, it’s carving out some quiet time for prayer and reflection. The various ways people recharge are endless based on personal preference. Challenges arise, however, when a parent has a child with special needs. It’s not so easy to find child care, or even working out something at home, due to possibly being the stay at home parent who is not simply sitting back “eating bon-bon’s”. Fortunately, often times the other parent can step in and give the parent some respite, but with some parents, it’s very brief or involving “getting to go to the grocery store alone.” If a parent is a single parent, that problem is doubled as they don’t have the other parent readily available to give a break.

Given these circumstances, (which are a various degree of all types of challenges), what is a parent of a special needs child to do regarding self-care? I know from experience how easy it is to stay up at night, just to have time to myself but then suffer the next day from being too tired. Of course, there were even times when my child would wake up during that time and then my well-laid plans to get any amount of sleep was all messed up, which of course, affected the rest of the day and my patience.

The tension between where a parent of a special needs child finds themselves and the often, unsatisfied needs of having resources to “refuel” is daunting. Many parents hear the message from others “I don’t know how you do it!” Well, often times, the parents themselves don’t know how they do the hard jobs they do day after day, often with little support from friends or family. They just do what they can each day “to survive”. But not without a cost. Some parents become isolated because it can be challenging to go out in the community. Some parents silently struggle with anxiety or depression. There are those who take their kids to various therapies throughout the week and resort to various escapes, whether alcohol, the Internet, social media, while also having struggles in their marriage, or other relationships, having very little “adult time” with people their age. The challenges some of these kids are facing are hard to deal with, some with medical or serious behavioral issues. The health of some parents may begin to suffer and they are running on sleep deprivation.

A group of mothers of special needs kids were asked what they would like more of in their lives and the answers were revealing of the huge gaps that need to be filled in regards to self care:

Solitude, time to recenter without feeling guilty; do something that brings joy; time to decompress; exercise; personal retreat with the Lord; More time to enjoy one’s passions; getting a massage; doing arts and crafts; a relaxing hobby; having adult time; date nights; taking a vacation; finding a trustworthy and reliable babysitter; having quiet time to either read or do some creative outlet; go to the gym; time with friends or even some uninterrupted time in the bathro0m

The answers were varied but the theme was the same: they all feel the gap between where they needed some time to recharge and the ability to have the time to do so. They all understood that the best way to take care of their kids was to also invest time in themselves. The way that could be achieved varies based on each person’s individual circumstances, desires and personalities. What works for one person may not work for another, although each person has similar needs.

During a coaching session I was participating in, I spoke of the need to find my “oasis” within the stormy waters of my home life after getting home from work. It isn’t easy going from working with needy children to coming home, as a single mother to my own needy children. I needed some way to refresh, even if for a few minutes once I got home. Since the kids often met me with their various issues as soon as I got home I worked out with my coach that something that would help me and yet still be present to them was to have a simple cup of tea to drink while dinner was getting made and joining in the various discussions with each child. It just so happened that the first night of trying out this technique, the two older kids, with the delayed effects of their days due to the stress of trying to keep regulated, both easily reacted to one another. This then set off the youngest child who has autism. During this brief storm, I found myself smirking inside while looking at my little cup of tea, my “oasis”. Being a Christian, I felt like this was simply an attack by the enemy to undermine my attempt to have some sort of planned family time in the evenings like we used to, as I had wanted to re-institute our evening devotions. After sending two kids off to separate locations to calm down and helping the youngest regulate, I informed them that they were to still expect to come back around at 8:30 PM for our family devotions. We got through it and hopefully, the kids were able to see that despite the challenges, we have a God who cares about our struggles and knows us each by name. I want my kids to know the comfort there truly is to sit before God and pour out our hearts. He understands and He strengthens and supports us. That fed my soul, as imperfect as it was, and gave me what I needed with a taste to seek out more of what truly satisfies my soul; much better than Facebook or Instagram or even watching something on TV and binge on dark chocolate and wine.

The goal I have with my family, and perhaps others with kids who have special needs can relate, is that no matter what is going in one’s life, there are healthy ways to take care of oneself that feed their souls. Moderation is the key, I am reminded, and if my son needs time to “regulate” by playing on Minecraft for about 30 minutes, or jumping on the trampoline, that’s okay. I also want to teach him about going for walks, exercising, reading, gardening, playing music, playing catch with the dog, coloring, doing crafts, talking with a friend, playing a game, spending time in prayer even! All sorts of things are available that we can do to help us deal with the pressures of life.  The neat thing is we are not alone and there is a supportive village who understands. It just takes the courage and determination to reach out and ask someone to join in the journey.

What will it take to make that first step?

How can you ensure that you can be consistent once you do so?

What is keeping you from starting something new?

What kind of support do you need?

Think of one thing you can do today and make your plan to begin the transformation process and remember, step by step, new habits can start and it begins with the positive mindset that change can happen. Babies start to walk in stages and this is not different.

Enjoy the journey and what you learn along the way!


Sheila Hughes, Life Coach


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2 Responses to Self Care when you are a parent of special needs kids

  1. Robert Marzullo says:

    Sheila, I am also a caregiver working with a 70 yo with Cerebral Palsy and autism, plus have an older sister in Southern California in the final stages of dementia and being cared for by her husband. These suggestions are also for families dealing with an older family member as well.

    • sheilamh67 says:

      This is so true, Robert. It’s so important for Caregivers to remember that the best way they can care for their loved ones is to also take time to care for themselves.

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