Dr Safeeya Mohammed
“They choose you, they choose their parents,” shared Tracy Hutchinson Wallace, co-founder of Autism Spirit as our first encounter while processing his diagnosis. Though Tracy isn’t here with us anymore, those words stay with me, and it is the gift that keeps giving, as that line continuously offers consolation to parents of these ‘extraordinary children’.
Today, World Autism Awareness Day, I reflect on that conversation of six years ago when we received the diagnosis, a diagnosis the doctor in me knew, but the parent in me did not want to accept. It meant, something was wrong with my child and no parent wants that acknowledgement. However, the day I viewed autism through the lens of ‘AWE-TISM’ was the day it all changed.
I’m inclined to believe that autism is an extraordinary gift. When viewed from the outside, autism is challenging. When viewed from the inside on a granular level, autism is much more than that.
With autism, we are given the opportunity to learn how to meet a person where they are at, with no judgement, just unconditional love.
Having a child on the autism spectrum gives to us the opportunity to develop the gifts of understanding, empathy and extreme patience. Autism gives us a chance to be more than we might be as parents, grandparents, friends or family. I recognised very early on, this world was not equipped for his existence, and it was up to us to create a world that was not only more aware, but MORE ACCEPTING.
Spend a day in the world of an autistic
Many children with autism have difficulty processing everyday sensory information. They experience difficulties interpreting and organising input from what they see, taste, touch, hear and smell.
Picture yourself calm and relaxed. Suddenly, a stereo blasts in your ears, and you are punched in the arm! An autistic experiences this sensory input in an amplified way. What we may experience at level one, they experience at level 100. These sensory perceptions can become frightening or even painful and can lead to high anxiety and meltdowns.
Raising a child with autism is a constant resilience challenge of ‘snakes and ladders’, and being his mother is an exhilarating roller coaster ride! A positive outlook is key to meet almost any challenge. We get to approach problem-solving from a unique perspective. We get to see challenges and outcomes that can be completely different from day to day. We must constantly be on our toes and use the very best of our abilities and insights.
Without a doubt, my autistic son made me a better human. I was placed in a position to learn how to communicate with him and help him learn how to communicate with the world. In my quest to improve his life, the lives of so many others are also improved. With every life touched within my roles as a doctor, multimedia host, and executive leadership coach, each person that crosses my pathway benefits from that level of empathy and patience. Autism gives us the chance to be something more than just ordinary, but extraordinary with super-hero parenting skills.
Pouring love out
The feeling of overwhelm and frustration does creep in and in those moments, I have to remind myself that I am human, and it is okay to feel not okay, it is okay to lean in. Instead of allowing negative feelings to overpower my daily activities and the many roles I balance, I choose to pour my heart to God, and stay in faith, that there is a plan and purpose for Musa’s life, as well as my own. The tribe created around us becomes crucial. Self-care becomes vital. To all parents of these extraordinary children, I urge you to develop a self-care routine and not be guilty of it. Remember, in order to pour out love to your children, there must first be something inside. Let’s not pour from an empty cup!
WE can’t pour from an empty cup, but how often do WE try?
Let’s clear up one common misconception from the get-go: Self-care is not synonymous with self-indulgence or being selfish. Self-care means taking care of yourself so that you can be healthy, so you can be the best version of yourself and serve all the roles you are committed to, so you can do all the things you need to and want to accomplish in a day.
If you think you’ve been hearing more about self-care lately, you’re right. One indicator: according to Google Trends, the number of searches for “self-care” has nearly quadrupled since the COVID-19 Pandemic.
Self-care is part of the
answer to how we can all better cope with daily stressors and challenges, especially when one is a parent whose ‘nurturing fuel’ is on heavy demand. While each child is a unique, a child who is differently abled can wear a parent to the bone.
Following are some of the practices I subscribe to and recommend for these extraordinary parents. Remember, you have special needs, too!
1 Give yourself personal time in the form of a walk, meditation, writing in a journal, being creative or some other activity you enjoy. Do this every day. Replenishing your cup is so necessary.
2 Educate yourself about your child’s different needs. Knowledge provides understanding. I found that the more I learnt about my child’s medical condition, the more effective caregiver I became.
3 Get support. Asking for help doesn’t mean you are failing as a caregiver; it means you are wise enough to know the bounds of your capacity. Many parents of children who are differently abled share that they feel isolated. A parenting network or support group provides a community to ventilate the daily stressors and recognise you are not alone in the challenges.
4 Cry if you must. Stress hormones, found in tears, affect every system and organ in the human body. Crying provides a healthy outlet by eliminating harmful stress hormones. Haven’t you found that you feel relief after a good cry? However, be mindful of depression, it can easily creep in. Knowing these signs and when to seek therapy is important.
5 An attitude of Gratitude. Did you know that gratitude reduces anxiety and stress, while increasing positive affect? Yes, gratitude improves your physical health, leads to better sleep and improves your overall awareness and consciousness.
Self-care requires checking in with yourself and asking yourself how you’re doing physically, mentally, and emotionally. Different people will adopt different self-care practices, and even your own definition might change over time. What is self-care for one person will likely differ from someone else, and what’s self-care for you one day might not feel like self-care another day.
The more balanced, relaxed, and recharged you are, the more patient, caring, and proactive you can be as your child’s protector, nurturer, and advocate.