Getting Support for Yourself IS Supporting Your Family
Just like most parents, parents of children with autism love and support their kids. They cherish their time together, and take pride in their child’s accomplishments. And, just as all parents are concerned about their children’s well-being, parents of children with autism worry for their child’s health, safety, and future.
Yet, while all parents face daily struggles, parents of children with autism undergo unique and heightened challenges that can increase the risk of experiencing anxiety, depression, self-doubt and stress.
The tension related to the typical tasks and responsibilities of being a parent are often intensified, and, in many cases, may be more demanding due to the many additional challenges and obligations that are necessary in caring for, and supporting the needs of a child with communication, social and adaptive skill deficits. Add to that the further requirements of negotiating between funding sources, navigating through various treatment options, securing future care, managing behavioral problems and scheduling their child’s therapeutic commitments, and the emotional strain faced by parents of children with autism becomes more clear.
While parents of children with autism experience more justified stress, inadequate time, restricted financial resources, and expended energy often limit access to previously known coping strategies for dealing with these concerns, such as exercising, meeting with friends or family, or taking a vacation.
Unfortunately, the mental health challenges of parents of children with autism do not only affect the couple. Stress, anxiety and depression may not only negatively impact the life of parents, but also affect the progress of their children. While many parents welcome the opportunity to support their child’s progress, many of the most effective intervention programs, especially for young children with autism, are highly demanding, time intensive and require parents to act in the role of both therapist and caregiver. Lack of energy, difficulty concentrating, and increased stress or sadness can all make participation and support of the child’s programs and treatment goals more difficult and less consistent, which may potentially result in increased behavioral challenges and decreased opportunities to support adaptive and communicative skills across the family.
Most intervention approaches aimed at assisting families impacted by autism focus more specifically on the requirements of the child, rather than the overall needs of the family. As parents are often relied upon to implement therapy for their children, most support for the family is often provided through parent education by behavior agencies. Understandably, as parents are better adept at assisting and understanding the needs of their children, their stress and worry may decrease; however, this does not address the additional mental health challenges that may impact parents of children with autism.
Participating in treatment services aimed at assisting parents of children with autisms’ own therapeutic needs may not seem like a realistic or reasonable option. However, getting support for themselves may help to not only move toward a more balanced and healthier life, but may also allow parents to more positively and effectively support their children and family. Enlisting the help of a therapist, particularly one with experience assisting families impacted by autism, can provide a safe, sympathetic and constructive environment where parents can express their wants and needs.
It may not always be possible or feasible, given a family’s personal circumstances to regularly attend therapy sessions. If you find yourself needing support, but are unable to access a professional at this time, or you are simply having “one of those days,” here are 10 strategies that may help:
- Remember to Breathe
Being a parent is filled with moments that can take your breath away. As a parent of a child with autism, it is understandable to sometimes feel heartbroken, frustrated or stressed. That does not make you a terrible person, or a bad parent. It makes you human. When you encounter a moment more stressful than normal, do your best to take a minute, breathe, and recognize that it will pass. Each moment can be a learning experience. Even if you do not gain any new information, at least you learn that you survived the moment to breathe again.
- Celebrate Victories
Focus on the spectacular successes and achievements of your child and your family, no matter how tiny they may seem. Many times, when parents are stressed or feeling depressed, they may minimize or miss these opportunities for celebration. If your child waved, “hello” for the first time, gave a hug to a new friend or successfully asked for a break, each of these moments are steps toward the health and independence of your child, and should be celebrated.
- Keep a Journal
Whether it be a leather-bound portfolio, notes on your mobile device, video blog or just a bunch of sticky-notes in an old shoe box, keeping a journal will help you save a record of the amazing triumphs of your child and free your mind of all the things that are running through your head at a mile-a-minute. Make a list of all the things you need to do – at least it is out of your head, and is concrete and able to be tackled.
- Education is Power
You will never learn everything, but you can learn something. Navigating the world of autism can be extremely daunting. There will always be more to learn, and the information will always change and progress. From the symptoms of the disorder itself, to the various service and treatment options, to the availability of funding sources, finding the best options for your child and your family can be intimidating and nerve-wracking. With each piece of knowledge you receive, you will be more prepared, and will gain confidence and comfort. You can be the best advocate, teacher, researcher and therapist for your child. By learning all you can, or surrounding yourself with those who can help, you can remove the worry and uncertainty that accompanies the unknown, feel supported and part of a community and confidently make the decisions that are best for you and your family.
- Everything Over Time
Taking one thing at a time may be impossible, but you still do not have to take on everything at the same time. Differentiate what you can and cannot control and take action on what you can, when you can.
- Make the Old New
Remember the things that you once loved to do and make them new. You may not be able to participate in all the activities that you once enjoyed, but that does not mean they are lost. Re-invent and re-imagine the activities that you once enjoyed, and share these experiences again with your family. It may not be the same, but it can still be great.
- Deal (Even if Not Ideal)
Just because something is not perfect or the way you expected, does not mean it is a failure. Attempt to find the positive, or successful aspect of everything, even if the only positive is that it is over.
- Be Careful of Comparisons
Comparing your family situation with others may be extremely helpful as a reference for gathering new and insightful suggestions or ideas. However, it is also important to remember that these other individuals are not “in your shoes.” Though there may be similarities, they do not share the same experiences. You will always find someone who may have a more difficult struggle, or someone who seems to have it better. Many times, those same individuals can switch sides depending on the area of focus. Comparisons can cause you to minimize your own feelings and issues, while at the same time maximizing your concerns.
- Diagnosis Not Definition
Your child’s challenges do not define who they are, or who you and your family are. They may always be present, and there may always be a need to focus and attend to your child’s difficulties, yet in spite of, and perhaps even because of these issues, your child is still an amazing, competent and loving person, who can be capable of reaching their own surprising heights.
- Find Support
Often, parents of children with autism distance themselves from others. They may worry about how their struggles will be interpreted or perceived, or may be concerned about the safety of their family outside of the home environment. It is important to remember that your experiences are your own, but you are not alone. Making a connection where you can freely share your thoughts and feelings can be exceptionally important in reducing stress.
The pressures of being a parent, especially a parent of a child with special needs, can be overwhelming. The strategies above may not solve every issue, and each suggestion may not apply to all of you and your family’s needs. But, no matter what, it is important to make attending to your own feelings and well-being a top priority. Doing so may not only make challenges seem less daunting and reduce feelings of stress and sadness, but also lead to a more positive and healthy outlook. It is important to always remember that supporting yourself is supporting your family.
Located in Los Angeles, CA, Dr. Darren Sush, Psy.D., BCBA-D, is a licensed clinical psychologist and board certified behavior analyst, specializing in therapy for parents of children with autism and special needs.
Throughout his career, Dr. Sush has recognized that parents of children with autism and special needs can significantly benefit from the guidance, comfort and empathy of therapeutic services that support their unique experiences and struggles.
11633 San Vicente Blvd., Suite 106
Los Angeles, CA 90049
This article was featured in Issue 47 – Motherhood – An Unconditional Love