Catherine and Arnold have been married for 15 years. In a decade and a half, they have survived financial crises, deaths in the family, and rocky roads in their relationship. But nothing “compares to the challenges – and ultimately, the gratification – of raising a child with autism,” says Catherine.
At 40 years old, Catherine describes herself as an “active supporter of the community,” with a penchant for reading and a love of dogs. She volunteers regularly at their local humane society, and tries to finish a book in its entirety every two weeks. She does yoga, communicates with a circle of close girlfriends daily, and left her fast-paced, full-time position at an advertising agency to pursue a small retail business she operates out of their suburban home.
Her husband, Arnold, is quiet – he’s a self-described homebody whose guilty pleasure is football and renovation shows on TV. He enjoys tinkering around the house, refusing to call plumbers and electricians for the jobs he says he can do on his own quite well.
Together, the couple is raising Brody, their 10-year-old boy. Brody was diagnosed with autism spectrum disorder two years ago.
Brody, the couple says, is unaffectionate and hot-tempered – he shrivels back at the touch and is quick to get angry when things don’t go his way. He reacts harshly to disappointment, whipping things across the room or displaying a full-on tantrum, in public and at home. He’s easily disgusted by certain textures and smells, and announces his distaste by screaming or wailing.
“By the end of the day, most days, I am physically and emotionally exhausted,” shares Catherine. “This beautiful boy takes everything out of me.
“I think I go through these moments of guilt when we’ve had a particularly hard day and I think, ‘Oh my God, I can’t do this anymore.’ I’ve come to learn that feeling like giving up is acceptable and normal, but you can never give up. You don’t really want to. You want to see your child through and help guide them in this world. It’s challenging. You don’t see the world the way they do just as they don’t see the world the way you do. So you navigate the best you can and you try the best you can and you forgive yourself for the mistakes and keep applying the things that work.”
One of the things that works, Catherine stresses, is the act of self-care.
As a parent of a child with autism, you are faced with this expert-backed fact: you likely experience more stress than a parent of a child who is not on the spectrum. On any given day, you’re probably juggling a tantrum (or several), threats of running away, loud meltdowns in a public space, and a trip to a physician. You’re doing all you can to visibly appear, to your child, as his or her rock, a solid guide, a strong presence. Inside, however, you may feel as though you’re falling apart.
Use acupuncture as a way to relieve your anxiety and stress.
Parents of autistic children experience stress on a variety of fronts, limited not only to the child’s immediate needs, but in other areas too – relationships can break down, financial stability may be affected, and personal time might be severely decreased, if not entirely erased. Some parents not only experience bouts of stress, but may eventually become diagnosed with depression.
Which is why, experts agree, self-care is so important. There is help for parents of children with autism, and fortunately, much of the suggested work can be done right at home or anywhere.
Tip 1: Journal
Journaling for a few minutes a day is a cathartic experience. Make sure to not only journal about the challenges or difficulties of the day, but the positive things that happened too. Also, don’t feel pressured to write long, descriptive paragraphs if that’s not really your thing – there are many kinds of journaling methods, including bullet point journaling or even three-sentence journaling. Just pick the right type for you and release and honor your thoughts that way.
“I don’t do the traditional journaling thing,” says Catherine, “but I have an app on my phone where three times a day I write things I’m grateful for or things that have happened that I want to remember. I’ve got Arnold started on it too. I look back sometimes on what I’ve written and it’s always a nice surprise or memory to see some of the things I can still be grateful for now.”
Tip 2: Make time for alone time.
If at all possible, take an hour out for yourself each day. If that’s too much, take an hour three days a week. This is a time when you can read, work in the garage, organize your closets, or simply be alone in a bedroom with no noise and no interruptions. Consider your space, wherever you are, your recharging station: this is your time to refuel and center yourself, so you are the best and most rested version of your for your child who needs you.
Arnold, who’s typically quiet and says he keeps to himself usually anyway, still tries to maintain a regular schedule of being alone in his garage. “I might not say much, but all this affects me too,” he says. “What I do is I try to take some time out just for me and I don’t let myself think of all the stress in the house. My hour alone is my hour alone, and I try to do things I like, like taking apart the lawn mower and fixing it. It seems simple, but it works.”
Catherine agrees on the importance of alone time. “Having this time to myself and knowing it’s coming up prevents me from wanting to run away,” she says with a laugh.
Tip 3: Create a strong support system.
While alone time is a wonderful way to recharge, having a solid group to hold you up when you need it is key. Seek out support groups designed for parents of autistic children, or simply round up a group made of members of your family and friends that you know will be there for you when you most need them. Having a number of people to talk to, vent to and share things with will make the daily challenges of raising an autistic child either. These are the people you can call at any time when you just need a friend, when you need objective advice, or when you simply need a laugh to get you out of an otherwise painful or negative day.
Learn about our group therapy sessions for children with autism.
Tip 4: Seek professional guidance.
You may need help on how to improve your patience with your autistic child. You may feel you’re experiencing PTSD after having cared for your special needs child for so many years. You may need a host of strategies you’re not finding here on how to start self-care. This is where therapy for yourself comes in handy; it’s a great benefit to you to keep yourself in-check.
“I’m not going to blame my child for my loss of self-esteem or my stress levels – that’s my responsibility,” says Catherine. “At first, when I considered seeing a therapist for myself, I thought, ‘Wow, how self-indulgent – who do you think you are?’
“But then I realized, if I’m not a fully functioning person, and I’m a mess, how am I going to keep it together for Brody? It’s unfair to think you don’t deserve care too. In therapy I’ve learned how to set boundaries and how to really love myself, so I can be the best parent for my son.”
Read about the fears that stop people from starting therapy and finding peace.
If you are the parent of a child with autism spectrum disorder and would like more guidance on self-care, visit us at allianceaba.com. We are located in Fredericksburg, VA.