Autism is oftentimes confusing, unpredictable and hard to manage. As parents and caregivers you are required to traverse the highs and lows of the autism diagnosis.
From the outset of parental/caregiver concern to the day your loved one receives the diagnoses on the autism spectrum and everyday of your life thereafter, you must make difficult decisions and understand a daunting array of processes which will impact you, your loved one and your family… forever.
The information required to absorb, while caring for your loved one, is relentless. The obligation to make life altering decisions on an almost daily basis can take its toll. The endless questioning of oneself as to your proficiency at determining the proper course of action may become overwhelming: “Have I learned enough about X, Y, or the new Z therapy? Should I consider this or that treatment? If I try that treatment, how much or how often should I try it? Have I seen progress with this or should I change to that? Which specialist are we seeing today? Is the school district participating with us or do I have to fight for services? What do I need for due process? Who will take care when I am gone? Do I need to get guardianship for my loved one? How are my assets protected? Who has the answers I can trust?”
With so much going on, it is vital that you are in optimal health and emotional well being. If you do not take very good care of yourself you cannot be on top of the situations you will be faced with.
Here are some tips about caring for yourself. This is very important. Do not feel guilty about keeping yourself healthy. If you are not healthy, both physically and emotionally, you cannot provide the optimal care, direction and discussion making you will need to provide for your loved one.
Madeleine’s Top 15 Tips for Self-Care
- Get Enough Sleep. Sleep enables your body to replenish, grow, and heal. If you are having difficulty sleeping, listening to peaceful, slow music and/or doing relaxation techniques just before you go to sleep may be very useful. Sleep is how your body strengthens your immune system. Sleep issues are not uncommon with a diagnosis of autism. Work with your loved one’s therapist and medical team to help find solutions. If your loved one is not sleeping, chances are no one in the household is getting a good night’s rest.
- Eat Healthy foods such as fruits and vegetables. Try to avoid skipping meals. A good metabolism relies on frequent replacement of energy (food). That said, make healthy choices in your diet a priority. As a rule of thumb, the less processed and more organically grown a food, the better. Avoid simple processed sugars like sugary sodas. Avoid overuse of alcohol and quit using cigarettes. These are not aids in taking care of yourself if you use them. The momentary feeling of ease or calm does not offset the harm you are potentially doing. Many individuals with autism are on specialized and/or restricted diets. Seek out sound nutritional advice in concert with your medical team for your loved one.
- Drink an Ample Amount of Water. This will help hydrate your skin and your body. Water also flushes toxins out of your body and keeps your internal engine working properly. Hydrate…Hydrate…Hydrate. Try and drink enough water so that your urine is clear. Water is not coffee. Water is not tea. Water is not soda. Nothing but water is water, preferably filtered.
- Organize Your Spaces. With everything that is going on it is easy to get overwhelmed. An organized place where you can find what you need is going to be extremely helpful. Start small, if you have a very disorganized home. Start with one room or even one drawer at a time. Having a dedicated filing system for all of the reports, medical team evaluations and school documents will be very helpful. Create a file with business cards of all those involved in the care of your loved one.
- Create a Sanctuary. Any room in your home can potentially be a sanctuary. Your sanctuary may be a “Mom cave” or “Man cave.” If you do not have the space, a good place to start is simply in the bath. Wash yourself with great smelling soaps in one of your favorite scents like strawberry or calming lavender. There are bath salts or bath bubbles if you prefer. Treat your hair with a great smelling shampoo/conditioner. You can be a little indulgent and take this time to unwind and decompress. Literally wash the cares of the day away. There are great manly scented soaps and lotions out there as well. Real men do take baths!
- Stop, Breathe, and Tell Yourself, “I will get through each situation one step at a time.” Autism is the reality through which you see the world and it takes time to incorporate the breadth of what this diagnosis entails in your life. Identify the steps you need to take first, and focus on each step one at a time. It may be helpful to write down what you need to accomplish in a daily or weekly planner. Give yourself time and be kind and patient with yourself and what you are able to do.
- Acknowledge Your Feelings. Once you identify, name, and accept your feelings, you will feel less out of control. After that, find a comfortable place to express your feelings. Anger, tears, sadness and frustration are normal, so do not feel guilty about expressing yourself in this manner. It is important during those times of powerful feelings to acknowledge your feelings as your own and do not lash out at others.
- Embrace Supportive Relationships. It is important to find others who are going through the same thing that you are. Though you may feel very isolated, there are others going through the same things as you. The company of others is important for your emotional well being. Make spending time with people you enjoy a priority. Choose friends, neighbors, colleagues, and family members who are optimistic, encouraging, and interested in you and your family. It is going to be challenging to find people who will truly understand what it is like to care for a loved one with autism or any other disability who is not a caregiver themselves. Be patient and be practical. Seek out those who will be supportive of you and what you are going through. Look for area support groups which meet regularly.
- Know Your Limits and When You Need to Let Go. For situations within your control, remember change takes time. You may be able to control more than what you think you can. One of the hardest things to do is to acknowledge that some situations are beyond your control. If something cannot be changed, work at accepting it for what it is. It may help to repeat something like, “It is what it is, I am going to accept it.” If you feel like you need help letting something go, you may find that creating a journal and writing down your experiences can be a helpful outlet.
- Art is Healing. Studies show that simply walking through an art gallery can lower blood pressure and reduce stress. The same goes for strolling through a park, admiring architecture, or watching a sunset. Expressing your feeing through the artistic process can be very healing. Try poetry, painting, dance or theater to express what may be going on inside you. The arts and artistic processes are also superb activities for your loved one with autism. People with autism have a lot to tell us and utilizing the arts is an excellent bridge to that communication.
- Be a Lifelong Learner. It is very easy to eat, sleep and breathe autism twenty-four hours a day. As compelling as that may be, try to take time to expand your interests. Take an adult education class, join a book club, visit a museum, and/or learn a new language. Get away for a while through meditation, a book, a movie, or taking a short trip. Return to nature. Take a long walk. Breathe the fresh air and smell the flowers. Garden, plant and enjoy the growing natural process.
- Engage in Physical Activity. Engage in activities that naturally release endorphins such as walking, bicycling, dancing, and playing team sports. Include your loved one when you can and take time by yourself when you need. Get out from behind your TV or computer screen. Screens will never have the same effect as a look of concern, a comforting hug or a stroll through the park, arm in arm.
- Volunteer. Doing something that helps others has a positive effect on your self esteem. The meaning and purpose you find in helping others will enhance and develop your life beyond your everyday focus on autism. There is no limit to the individual and group volunteer opportunities you can explore. Schools, places of worship, nonprofits, and charitable organization of all sorts depend on volunteers.
- Join in. You are asked to be an observer and report so much of the time as a caregiver. You may potentially be asked to observe the effect of a new medication, activity or therapy. You are then asked to report on those observations to the therapeutic, clinical or school team. That is quite enough observing…Join in.Join networking, social action, conservation, and special interest groups that meet on a regular basis. These groups offer wonderful opportunities for finding people with interests that match your own.
- Understand When You Need Help. Manage Your Stress Levels. Stress takes a heavy toll on physical as well as emotional health, so it’s important to keep stress under control. While not all stressors can be avoided, stress management strategies can help bring things back into balance. Try to avoid becoming absorbed by negative thoughts about yourself and your loved ones. These thoughts may drain your energy and trigger feelings of anxiety, fear, and/or depression. Know when you need to seek help yourself. If you are feeling overwhelmed with your situation, seeking professional help is nothing to be ashamed of and is to be encouraged. Your insurance provider is a good place to start to find mental health providers in your area. Finding the help you need will not only help you, but will also give you the ability to best care for your loved one.
- Madeleine Goldfarb is the Executive Director of Noah’s Ark Institute, which provides program support and training about autism for the community. “We must give every individual the opportunity to build skills and thrive within the fabric of a caring community. If we can do that, then we have fulfilled our promise to our families,” Goldfarb said.
Noah’s Ark Institute is a nonprofit organization. Find out more about Noah’s Ark Institute at www.noahsarkinstitute.org.