Every parent deals with some level of stress. For parents of special needs children, of any age, the stress can be unrelenting.
This is called chronic stress. An example is this: say you have been diagnosed with the flu. This is a sudden ailment that, barring any complications, will be gone with appropriate medical attention. It won’t last forever. It’s an acute illness. On the other hand, Type 1 diabetes is a chronic illness. It’s always there and has to be monitored and managed as long as the person is alive. It’s a chronic illness.
Chronic stress is unrelenting. There’s always something. As a mom of a young adult with autism, we can be having a good day then, out of the blue – he can’t find a certain book or pencil, and it starts a chain reaction of tantrums and meltdowns. Or, the day starts with a meltdown and it just ends up getting worse. Not knowing how a day will go, or dealing with a child’s special needs, means a parent is under a great deal of stress.
When I was working full-time outside of the home, I would receive multiple phone calls in a week to either talk with Sam in school or come get him. The stress of attempting to balance work with home and a special needs child put me on eggshells all the time. That level of stress cannot be good for the human body.
A study published in the Journal of Autism and Developmental Disorders, as reported in DisabilityScoop, found that parents of special needs children, specifically kids with autism, were lacking in a key hormone associated with stress. This low hormone is “consistent with people experiencing chronic stress such as soldiers in combat,” stated the article.
Did you get that? Soldiers facing combat and parents who have special needs kids have very similar levels of this stress hormone. That’s a lot of stress.
Another study dives deeper into this important subject. A study published in Pediatics found, “Mothers of children with neurodevelopmental disabilities often experience poor health, high stress, anxiety, and depression. Highly stressed parents are less effective in their parenting roles, risking their childrens’ developmental progress.”
This makes sense. I know that when autism rears its unpredictable and violent head, my anxiety goes out the window. Depression sinks in. I don’t eat as well or take care of myself. All these things make me a less effective mom to Sam and my other children.
But it’s interesting, to me, that this is a vicious cycle. Sam’s stress adds to my stress which adds to his stress. The next thing to happen is complete caregiver burnout – which only adds to parental and child stress.
The Family Caregiver Alliance, which mainly deals with elderly care, has some key ideas for caregiver self-care in the article “Taking Care of YOU: Self-Care for Family Caregivers.” Their hints can be adjusted for parents of special needs children of all ages.
Your child is not responsible for your self-care. You have to be the one to manage your own care and take the initiative to do so. When Sam was younger, this often meant I’d take my bath after he went to sleep. Now that he’s an adult but still living at home, I take my bath when I know my husband is awake or if I know Sam is occupied (and yes, that means a favorite television show).
Many times, we put hurdles in our own path in the form of misconceptions that hinder our caregiving and self-care. Thinking we’re the only ones that can take care of the child, or not wanting to ask for help, or believing that you’re being selfish if you take time for your own care – they are all lies.
Reducing stress in parenting special needs children, and avoiding caregiver burnout, helps you and your child. Indeed, it helps the whole family. We are on a community well, and when the neighborhood loses power during a storm, we lose water as well. No matter how many times I turn the handle, water will not pour from the faucet. It’s the same with not taking care of yourself – you cannot help your family if you’re running on empty.
So, what can you do to fill up your caregiver cup? Recognize the warning signs of caregiver burnout. Sleep problems, irritability, and forgetfulness are all warning signs.
Identify the sources of stress. For Sam and I, it’s not sticking to a recognized schedule. Life is so much better when we keep on regular bedtimes, wake-up times, lists for daily activities, and staying on his medication regime.
A note about a “medication regime”: when Sam was a little boy and newly diagnosed, his grandmother fought me on giving Sam meds to manage the symptoms of autism. My point was this: if the medications help him by reducing the symptoms so he can focus and not be a hindrance to himself, why not? Now, this is a highly personal and volatile decision, and is solely up to individual parents. But, for my child, trying out different medications for various symptoms until we (the doctors and I) discovered the right mixture of medicines to give him was well worth it.
For my daughter who has Type 1 diabetes, I would never second-guess her doctors’ insulin recommendations. In my mind, there was no difference in managing her diabetes and Sam’s autism. But again, that is a decision parents must make for themselves. All I know is this: the times Sam has been off his meds, his autism is incredibly more pronounced, stress is increased ten-fold, and he is miserable – along with everyone else.
After you identify the sources of stress, you need to take action steps. Here is a brief list of things you can do to reduce stress as a parent of a special needs child:
Floor exercises are something you can do at home, and even with your child. Or walking in the neighborhood. Exercise is good for all.
Eating right, without junky processed foods, helps the whole family. Getting the groceries, though, can send stress levels through the roof, and no amount of blueberry superfoods can help that. Look into grocery stores near you that offer online ordering, curbside pick up, or delivery. Use the tools available to you to make your life easier.
Drinking water can help you and your child. If you or your child hesitates to drink water because of the taste, or lack thereof, invest in essential oils that can be used internally. I love to flavor my water with tangerine, lemon, or orange essential oils – and they are good for you too!
Time to yourself
Asking a friend who has knowledge and, even better, a relationship with your child, to watch him or her for a couple hours while you get your hair done, or a massage, or run errands by yourself, is not being selfish – it’s allowing yourself time away and your friend or family member the opportunity to build a relationship with your child. Having a marriage when special needs kids are in the mix is a huge topic for another blog post – suffice it to say, moms and dads have to work together. Each of you need downtime, away from the child, to regroup, refocus, and to be able to simply think.
If you want to enlist a friend, be sure to first have the friend or family member over several times to establish the relationship beforehand.
Churches, this would be an incredible outreach ministry to help parents of special needs children – offering a parents’ Saturday off. You want to gird up marriages of parents who are under an incredible amount of stress? This would help.
Something the Lord God put on my heart a few years ago was to have a retreat for mothers of children with special needs. I am very excited to share that Near Your Altar’s first Arise! Shine! Retreat for Moms of Special Needs Children will be held this year. There is something profoundly cathartic and healing about going away for a retreat, away from the stresses of home, to help you regroup. This is what Near Your Altar's first retreat is designed to do.
To be held at Bonclarken Christian Conference Center in beautiful Flat Rock, NC, Arise! Shine! will feature rest, respite, rejuvenation, Christ-encounters, worship, and fellowship between mothers who all share one thing in common: they get it. They also have kids who have special needs and are in the trenches with you. The retreat is for Christian moms who have a child (or more) with any type of special need or disability.
The retreat cost per person is $295 which includes two nights’ accommodations, all meals, snacks, drinks, program materials (including my brand-new Bible study The King’s Table: A 4-Day Bible Study for Parents of Special Needs Children), a 15-minute chair massage, mani/pedi, and a lot of surprises. The goal is to love on these moms in Jesus’ Name. The retreat will be held April 6-8, 2018; click here to register.
As a mom who is in the trenches of special needs with you, I understand. I get it. I’ve had some terribly bad days lately with Sam, and some incredibly great days. Weirdly, though, every day has some level of stress. The key is to not let the stress consume you, and know when to get help.
© 2018 Terrie McKee
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