Autism – Care for the Caregiver
by Tom Bohager B.Sc.
“Please place the oxygen mask on yourself ﬁrst before helping small children or others who may need assistance.” These are the words we hear whenever we ﬂy. The reason is obvious; we can’t help others until we ﬁrst help ourselves. It seems simple doesn’t it? But in life, it is rarely so easy to discern. When we are tasked with the job of giving care to a loved one, we often overlook the needs of ourselves. This, however, can be counterproductive, since the care given is only as good as the energy levels, emotional stability and attitude of the caregiver.
Let’s take a step back and look speciﬁcally at the caregivers of a son, daughter, or loved one with Autism. Though this will be our focus, the principles apply to anyone providing needed care to others. The Center for Disease Control (CDC) reports that 1 in 68 children have been diagnosed with Autism. Some believe the number is even more shocking; 1 in 45. Regardless, it is an epidemic today and 1 in 20 households are affected. If yours is not, you likely know someone who is. This means there are millions of caregivers who regularly assist small children, adolescents and adults who live with this diagnosis. The disorder is considered to be part of a spectrum, so there is a wide array of symptoms, from the not so obvious, to the very serious and everything in between.
Though the symptoms vary, there is one thing we can be certain of — much care and oversight is required. As a result, one of the parents frequently becomes a fulltime caregiver and this often lasts a lifetime. The demands of providing full time care contribute to an enormous amount of additional stress on marriages, family and outside relationships. According to Psychology Today, “The diagnosis causes stress in many different ways that are not always obvious, and the stress can be signiﬁcant. Some suffer from acute and chronic stress that can often take a toll similar to Post Traumatic Stress Syndrome. In addition, the diagnosis often changes entire family dynamics, not just the marriage. It also can change relationships with friends, extended family and coworkers. It can take months, sometimes years to come to acceptance and also to adapt to the new level of stress that often accompanies the diagnosis.” Add to this the potential increase of anxiety, health problems, frustration, burnout and lack of sleep often associated with caring for the needs of others and you can see why self-care is essential. So what can be done?
The importance of good nutrition is essential to maintain the energy level needed to care for your child. This is often under-estimated and overlooked, since the intake of something sweet or bad for you feels like a way to disengage and do something for yourself. In other words, “I deserve this.” This can take a huge toll on energy levels and attitude.
Besides the need to manage the foods we eat by avoiding deep fried foods, fast food, sweets and desserts, while consuming a balanced diet of vegetables, fruits and lean protein, the caregiver should add some essential supplements. The basics include the daily intake of a multi-vitamin (preferably one from whole food sources), probiotics, ﬂax or ﬁsh oil and a digestive enzyme with each meal. This can help recharge and maintain your metabolic batteries. When you maintain a proper diet, something sweet from time to time does little damage and really feels like a reward, after all — you deserve it.
The proper amount of rest is necessary to be a good caregiver. The National Sleep Foundation recommends 7 to 9 hours a night. They also state that some can get by with just 6 hours of sleep. You likely know how much you need to feel well rested. The lack of proper amounts of sleep can alter the attitude of the caregiver and create an atmosphere of frustration, anxiety and lack of patience. Often getting the rest that is needed can be challenging if other demands are placed on them. It is essential, though, to ﬁnd the time! The solution often rests in delegating other responsibilities to family members. Another option is to sleep during down times, such as when the child takes a nap. Don’t under-estimate the value of a “power nap.”
It is essential for most caregivers to have assistance that will allow them to take some “me time.” Some have the means to hire a qualiﬁed helper, but for many, this simply is not an option. This means that you must learn to ask for help from family members, friends and potential volunteers. Keep in mind that, although it can be hard to ask for such assistance, it is likely the only way you will get it.
The Power of Knowledge
They say knowledge is power and how true this is when it comes to caring for the needs of a child with Autism. There are some wonderful resources that cannot only help with some of the behavioral challenges associated with Autism, but also with maintaining balance, communicating with your child and maintaining your marriage. My favorite resources include:
While proper nutrition, adequate rest, getting help when needed and gaining knowledge can help, there is much more one can do. Psychological First Aid — 2016 adds: “Using stress management tools, practicing brief relaxation techniques, regular exercise, staying aware of ones limitations, increasing activities that are positive, along with limiting the intake of caffeine and tobacco can also reduce some of the stress and anxiety associated with providing long term care.”
Finally — Avoid the Guilt Trip
Guilt can be a powerful reason for many not to take care of themselves when they are consumed by the challenge of taking care of someone else. Sherrie Bourg Carter, Psy.D. at Psychology Today states: “Some people feel guilty about taking time for themselves. They see themselves as the one who should be taking care of everyone else and their needs often fall by the wayside. However, taking care of yourself is something that you should never feel guilty about. It not only models healthy behavior for the ones you love, it also keeps you happy, healthy, and strong so that you can continue doing what fulﬁlls you; and if that’s taking care of others, then you’re in an even better position to do that.” So…put the oxygen mask on and take care of yourself ﬁrst! You will be a better caregiver as a result and ﬁnd even more joy in doing so.