Parenting a Child with Special Needs . . . Make Sure to Put Your Mask on First!

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. The selflessness these mothers often exhibit can become problematic in a myriad of ways.

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.

- Dr. Joni J. Johnson

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.

  1. 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!

 

  1. 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.

 

  1. 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.

 

  1. 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.

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