Anyone who has been a parent, let alone parent to a child with a disability such as autism, will tell you that parenting can be tough. In my book, it’s definitely one of those conundrums where it is the toughest yet most rewarding thing you can do in life. Let’s then consider parenting or caregiving of a child with a disability, and immediately the challenges become exponentially greater in many ways. Meeting the high care demands of a child with a disability or special needs often takes even more time, effort, patience, and financial resources than that of “typical parenting.” (Is there really such a thing?) Many parents of children with disabilities such as autism are said to experience high levels of psychological distress resulting not only in mental stress but also in physical health problems. That said, many caregivers of children with autism also report that they feel they have gained positively from the experience. Many caregivers I know, myself included, report they have begun to feel stronger emotionally from their journey, and that parenting a child with a disability has given them a more positive perspective on life overall. They feel they can actually “not sweat the small stuff” and embrace what is truly important in life. It’s important to realize, too, that some caregivers waver on a daily basis from feeling stressed to hopeful. Some parents report they eventually settle into a more positive outlook but only after year after year of caregiver burnout. For some, their reported quality of life is directly proportional to the “ages and stages” and/or overall well-being of their child. Just as it is with autism, there is no “one size fits all” outlook for caregivers either.
Regardless of where we are with our caregiving experience, I think it is important from time to time to assess where we are on the journey as caregivers for the sake of both our child and ourselves. One somewhat sobering but obvious reality I will share after over 25 years “experience” of parenting a wonderful young man on the spectrum: I realize with every passing year that I am not going to be here forever, and that I need to do everything in my power to stay as mentally and physically strong as possible for as long as possible. I remember early on in our journey that many caring professionals would say to me, “Don’t forget to take time for yourself. It will make you a better parent. Don’t worry so much about the future, just do the things you can get done today.” I also remember giving them an “eye roll” as soon as they turned around, thinking who has time for yourself when you are trying to raise a child who has trouble with communication, needs constant supervision, is a runner/wanderer, and barely sleeps at night?! Fast forward many years, and I now find myself on the other end of the “eye roll.” I now feel like I have learned to live more in the PRESENT, which is a gift, pun intended! While we as caregivers may not always find ourselves able to relax and unwind like other families typically do, my advice in a nutshell is this: “Carpe Diem, or Seize the Day!” In other words, do as much self-care as you can, when you can, while you can, and however you can!
Now that I’ve discussed why this is so important, let’s look at a few tips that are probably obvious, but that we may have let slip while in the day-to-day trenches:
- Get as much sleep/rest as you can. This may mean that you have to let some other things go such as a clean house, finished chores, etc., but in as much as is possible, try to catch up on some of that lost sleep. Be creative: sleep when your child is at school or a day program, or when there is someone to provide respite time. If you can’t sleep or rest, take at least 5-10 minutes of your day to do something YOU enjoy. For some parents, it may just be having that cup of coffee by themselves; for others, it’s a walk around the block or an hour at the gym. We don’t always have to have a week away in the Caribbean or a day at the spa to invest in our mental/emotional health. The little things we do for ourselves each day add up. Some days, that 5-10 minutes may be all we can muster, and that’s okay.
- Don’t be afraid to ASK FOR HELP when you need it. One of the hardest things I learned to do as a young mom was to admit I couldn’t do it all and ask for help. This may mean allowing others to help more with your neurotypical children while you are at a therapy session. It may mean allowing a friend or family member to cook you a meal or just drop everything and have a cup of coffee with you so you can vent a little.
- Speaking of venting, LOOK FOR SUPPORT and consider joining a support group. The ASNC Chapters across the state are made up of parents who have been there and understand what you are going through and how you feel. They are invaluable means of support and offer you hope, encouragement, and a brand-new outlook on those tough days, not to mention potential friends and playmates for your children!
- Don’t skip your physical health appointments! With all of the added therapy, doctors’ appointments, and other activities we must help our children access, we often feel like the last thing we have time for is our own physical appointments. Remember, to be there for our children, we must NOT neglect our own physical health. In my workshops as an Autism Resource Specialist, I often remind parents to think of what the airline stewardesses tell us as we board a plane: “Put your own oxygen mask on before that of your child.” Remember that one of the best things you can do for your child is to be the best and healthiest “you” that you can be.
- Cry when you need to but don’t forget to CELEBRATE the smallest milestones and victories. Every family is so different, and we all deal with challenges in different ways. Resist what I call the “martyr syndrome” by feeling you always have to be “strong” for your child and on top of your game. I’ve found my local “autism community” to be among the most accepting people in the world, and they simply don’t expect me to always have it together, or judge me when I don’t! We are definitely parents/caregivers who will have opportunity to find joy in the smallest things, but don’t feel as if you can never let out your true feelings. It’s better to have a good cry every now and then than it is to hold it all in until you explode emotionally. That said, once you move on, don’t forget to look for the good and celebrate it in the ways that you can.
- While you are reflecting, take an opportunity to JOURNAL your thoughts and feelings. Studies have shown that writing down our feelings is therapeutic to our physical and emotional well-being. Make lists of the milestones/victories you have seen this past year in your child. Think of what a gift to yourself that will be in years to come as you see the changes both big and small in your lifelong learner. Take inventory of the many people on your child’s “team” who have been supportive and then take an opportunity to let them know how thankful you are for their support. An attitude of gratitude can go a long way in improving and maintaining our mental health. Doctors and therapists can often benefit from your written impressions of what’s working well and what’s not. You are the expert on your child, so be kind to yourself as you realize your parenting requires more diligence and grit than most families need in a lifetime!
- Remember that “this too will pass,” so keep your head up and keep your sense of humor. Let’s face it, some days are just going to be hard, but don’t miss an opportunity to laugh whenever you can. Even today’s toughest scenarios may someday be something we can look back at and laugh. In our family, we don’t miss an opportunity to laugh at some of those crazy things that happened out in public, things which mortified us at the time but that we now realize are those “things that just pass.” The more we look back and laugh, the more we realize that some things don’t get better, we just get better at handling them. Things are going to happen no matter how diligent we are. People are going to judge when they don’t know our circumstances. The list goes on, but all that matters is that at the end of the day, we know we’ve done our best and it doesn’t matter what others think. Other parents may be on Instagram posting those ‘perfect’ family pics, but our children are constantly teaching us and making imprints on our hearts and souls that no social media could ever capture. Take care of your body and soul so that you can give your child the best gift ever: more time with you, their greatest cheerleader and advocate. Now before you give me your best “eye roll,” go look in the mirror and tell yourself how important you are and what a great job you are doing! “Carpe diem!”
Wanda Curley, an Autism Resource Specialist in the Triad office, can be reached at firstname.lastname@example.org.
Tags: ASNC, autism, autism asperger parenting tips, autism nc, autism north carolina, autism resources, autism society north carolina, autism society of NC, Autism Society of North Carolina, Autism spectrum, Autism Spectrum Disorder, Autism Spectrum Disorders, autism support