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3 Psychological Needs of Parents of Kids With Disabilities

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I’m tired. As a mom of an adult with autism, my energy tank is often on empty, and it has little to do with my character or intellectual prowess. I live on high alert 24/7, and am really skilled at handling chaos and crisis at the drop of a hat. That gives me some pretty awesome skills, but it also makes me more vulnerable to burnout. Like the quick trip to the doctor’s office this morning . . . and the resulting disorientation and brain fog that’s still with me, three hours later. I have to be wise about living well and embracing powerful contentment. For me, this is about managing my energy and motivation.

Our Energy

Psychologists say that motivation is the energy to act. When you think, “I am exhausted,” is it the same as saying “I have no energy to act”? If so, what causes that? You may be rolling your eyes, since the answer appears obvious. All our energies are being used dealing with our child’s disability. But is that really what causes our exhaustion? How do we create energy? When we are healthy, we can create all the energy we need. We do this by meeting our basic needs. This gives our energy creating systems the fuel it needs, and they jump to the task of creating what we need. When we can’t create the energy we need to act, we can become quite unhealthy.

The perfect example of this cycle is in our physical bodies. We need air, sleep and food (to name a few) and when we meet these needs, our systems use the air, sleep and food to create energy work well. If we don’t get these needs met, our energy can drop so low that, even if we get the air, or sleep or food, we can’t use them well. In the physical body, we have to monitor ourselves so that we keep up the cycle of meeting our needs to create energy. Once the cycle breaks down, we will need an intervention to get it moving smoothly again.

We don’t only have physical needs, though. We have psychological needs. And when these needs aren’t met, it’s hard to maintain our energy to act. The self-determination theory argues that humans have three basic psychological needs:

• To have connection and care in relationships.
• To feel effective and competent in what we do.
• To choose, and be whole heartedly behind our various actions.

I often feel guilty about not feeling motivated — about feeling so tired. After all, I know this stuff. When I’m battling overwhelm and exhaustion, sometimes the simple answers are the best. Take an hour for yourself. Watch Broadway scenes on Youtube, re-energize your faith.

So what are needs we should consider?

1. The need to connect and care for others.

As a mommy, one would think this need is always adequately met with the amount of caring we do. Not so! This need isn’t only about caring for children, but about the relationships we build with family, friends, colleagues and others, and the ways those relationships give us opportunities to give and receive care. It’s a two-way street. We need to both — give and receive care — for this need to be met.

What happens to many moms of kids with disabilities is that our circle of close friends begins to shrink. It did for me. I became deeply focused on caring for my son and people just didn’t understand our life.

We usually connect with our friends during predictable moments in the day: at our coffee break or at lunch, after work or at specific times on the weekends. But that predictability stopped working for me. Hanging out became hard. It takes planning, energy and just more effort to plan to have child care and support so that I can have a girls’ night out. Lunch times and after work before getting home are precious slices of time that many moms use to problem solve situations or meet with a therapist. The sleep deprived mommy who is struggling to problem solve the daily emergencies, and handle the resulting effect on work and everything else, may just not have time for anything extra.

Then, if you are somewhat introverted like I am, deep, meaningful, one-on-one connections are the most meaningful types of relationships. These deep dive conversations don’t usually happen in two minutes in the elevator. I definitely lose my desire to connect with people if I fear the gathering will be full of surface “party talk,” especially when my deep dive relational tank is heading to empty. So, our relationship circles shrink and we can find ourselves undernourished in this area.

2. The need to direct your own actions.

The need to direct your own actions and be fully behind those actions is a really tricky psychological need. When you have a child with medical or other developmental challenges, it’s hard to feel like you’re in control of your actions. For much of Jaedon’s early childhood, I lived in response to what doctors, teachers and therapists said. The ability to control the quality of care, education and therapeutic support for our child seemed as elusive as the unicorn. In response to what I faced, I became therapist, teacher, mommy at the drop of a hat. This constant rapid-fire response to demand sometimes felt completely out of my control.

Night after night of three to four hours of sleep, especially when that sleep was interrupted often, helped create my feeling of being completely out of control. For my sanity, I had to take some control back! So, I would stay awake or work until I was sure I could have a couple of hours of uninterrupted sleep. I also took control of my time by watching endless hours of Netflix after J had gone to sleep. I just wanted pockets of time that I owned completely, to do exactly what I wanted to do, even if it was watching TV and browsing Facebook. I also started crocheting and knitting because yarn obeys me! (Yes, a little bit of a control issue, I think).

Directing your own actions, no matter how small, meets a basic psychological need that you have. Finding small ways to do this will increase your motivation to act in more significant ways. You may need to start small, to rebuild your energy reserves, so that you can tackle some of the other areas in your life and work that feel outside of your control.

3. The need to navigate your world effectively.

This need is about knowing that you can do a good job and feel effective doing it in your environment. But, when your environment is changing all the time, it’s hard to feel competent. Perhaps this is why so many parents of kids with a disability live with an overactive stress response and even show symptoms of post-traumatic stress. This feeling of incompetence can overshadow management of the various developmental challenges, advocating and negotiating for services for your child while navigating simple household tasks like paying bills on time. Add the struggle to feel competent in a professional space and successful in relationships and the disorienting feeling of the “bottom falling out” is a daily occurrence. Though it can feel impossible, creating experiences for yourself that help you show your competence and expertise, separate from the daily outcomes of your child, is important to your health.

More Energy to Act

When you are meeting these needs in healthy ways, you will probably spend more time doing activities that you are interested in and that reflect your deeply held values and beliefs. It will be easier for you to be aware of your deeply held desires. You will be more creative, solve problems more effectively, be more contented and emotionally balanced. You will have more energy and resources for your complex parenting journey.

Our psychological needs, like our physical needs, are just part of your makeup. Meeting them does not make you selfish. t’s not selfish to create more joy with friends during an ongoing season of night wakings and meltdowns. Neither is it selfish to eat when you are hungry.

Plus, meeting these needs sends a message. Everyone around you, especially your children, especially your disabled child, sees that even though it may be hard, you will push through to be healthy, so that you can offer your best personal, parenting and professional gifts to those within your support and care.

Your children need to see you live this message. Especially your child with a disability. Because they will need to push through to be healthy, even when the simplest things seem very hard. But pushing through will add energy and vitality to their life, just as it did to yours.

What plans do you have to meet these needs?

The Self Determination Theory –

This story is a version of an excerpt from my book, “Parenting Like a Ninja,” an autism mom’s guide to professional productivity.

Getty image by Rawpixel

Originally published: January 13, 2019
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