Parenting a Child with Special Needs . . . Make Sure to Put Your Mask on First!
By Joni J. Johnson, MD, NBC-HWC
Introduction
After 13 years of working exclusively with mothers who have children with special needs, one day about 2 years ago I had a vision. Most mothers adore their children and will make whatever sacrifices are necessary to ensure that their child’s needs and wants are met, but mothers who have children with special needs are different. They are probably the most selfless people that I have ever met. Two years ago, I realized that their “selflessness” could become problematic in more ways than one.
I started to notice a pattern. It is not that I had been oblivious, but my focus was on the child, so to some degree I ignored what I was seeing. That is, until I could no longer turn the “blind eye”.
This led me to ask one simple question of the mothers that sat before me. “If you go down, what will happen to your child?” Because the reality was, that at this pace, inevitably, this mother was going to go down. Much like on the airplane, if there is any chance for survival and growth for the family, Mom must first nurture herself.
What I Saw
What I saw was burn out, depression and at times anxiety to the point of inaction. I witnessed failed marriages, distant relationships, and sibling neglect. I also identified unrealized isolation and underutilized social networks. I watched all this dis-ease culminate into ignored health problems and addictive behaviors. All, the results of overwhelm and selflessness frequently exhibited by the mothers of children with special needs.
If you have flown on an airplane more than once you can probably recite from memory the flight attendant’s safety script which is reviewed prior to take off. What has always resonated with me when the attendant gets to the part about losing cabin pressure, it is emphasized that parents should ALWAYS put their masks on first before attempting to assist their children with their protective equipment. In that moment, two years ago, as I watched these mothers symbolically losing “cabin pressure” due to the overwhelming stress of caring for a child with special needs, I understood that the solution was that they needed to put on their mask first.
But the problem is that these women are selfless and often see selfcare as being selfish. It was even said to me on more than one occasion that they would address their issues once their child was stable. As the doctor, I knew that the stability they sought was far off in the distance. Too far, in fact, and my concern was increasing that these women were not going to make it.
This led me to ask one simple question of the mothers that sat before me. “If you go down, what will happen to your child?” Because the reality was, that at this pace, inevitably, this mother was going to go down. Much like on the airplane, if there is any chance for survival and growth for the family, Mom must first nurture herself.
The Four Core Concepts
So how do you fight the inevitable? By focusing on four core concepts that will bring the situation into clear focus.
- Acknowledge That the Stress is Real
- It is hard to parent a child with special needs. You have numerous appointments to attend, you may have frequent mood shifts or meltdowns to deal with and you might even have intrusions of different therapists in your home. You may also be in “fight” mode all the time since you are the only advocate to ensure that your child receives the support that they are entitled to in order to be successful. It is a lot and most days you may not even know which obstacle to tackle first. And let us not forget your other children, your job, your relationship, your social activities, and yourself. Acknowledge that all of this adds up to tremendous stress and responsibility and you are human. Give yourself the same compassion that you have shown to others. You deserve it!
- Set Realistic Expectations
- Now that you have acknowledged that your plate is full, it is time to be realistic. Your child has special needs and although you may believe in your head that they can do anything that a typically developing child can do you know in your heart that they cannot. That does not mean that you do not push them and encourage them to stretch beyond their obvious limitations, it does mean that your expectations need to be in alignment with their true capabilities. Once you set realistic and attainable expectations, you and your child can focus on what is really important.
- Find Balance and Prioritize (Yourself)
- Finding balance is about being intentional. Knowing all that you have to do and deciding what is going to get done and what can wait. Now, finding balance means that everything that is important get some attention – including YOU. For a mother that has a child with special needs, it is easy to prioritize yourself right out of the equation, but do not do it. You must make yourself a priority or everything else will fall apart. The key to finding balance is NOT to try to keep all the balls in the air but instead to DECIDE which ball is going to fall today.
- Practice Mindfulness
- If you have a child with special needs, you may consider mindfulness as trying not to lose your mind but that is not exactly what I mean. Mindfulness is giving yourself permission to spend time with yourself. Mindfulness allows you to be present to think, feel and be. There are many ways to practice mindfulness including meditation, journaling, yoga, praying, walking, breathing, listening to music, gardening, etc. Basically, it is anything that you enjoy that allows you to decompress, even if it is only for one minute at a time. Think about it, as busy as you may be, I think you can spare one minute for yourself.
“True self-care is not bath salts and chocolate cake, it’s making the choice to build a life you don’t need to escape from.”
– Brianna West
Joni Johnson, MD is a Pediatrician and certified Health and Wellness Coach with over 12 years of clinical experience exclusively supporting individuals with ADHD, autism, learning disabilities, mood disorders and behavior problems. In addition to being a physician, Dr. Joni is also a retired Army Colonel, disabled veteran, author, public speaker, entrepreneur and an individual with Dyslexia and a Visual Convergence Insufficiency. As the founder of UnCharted Territory LLC, Dr. Joni serves as a Health Consultant and Empowerment Strategist working with individuals seeking to discover underlying causes for difficulties in home, work, school, and social environments. She provides a roadmap for navigating support services and overcoming obstacles related to treatment plan adherence. Additionally, Dr. Joni’s coaching practice focuses on three areas of health and wellness which include Empowerment, Balance, and Inclusion.
Spread the word
Medical Disclaimer: All content found on the HER Health Collective Website was created for informational purposes only and are the opinions of the HER Health Collective experts and professional contributors. The Content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this Website. If you think you may have a medical emergency, call your doctor, go to the emergency department, or call 911 immediately.
