Over the past few days, I have been reflecting on my life in earlier years and comparing it to recent times, particularly regarding the financial challenges that seem to have intensified as we navigate our autism journey. It’s fair to say that this has not been due to a lack of ideas or income-generating means, as these have remained fairly consistent despite occasional socio-economic setbacks. Instead, my financial struggles, especially as a self-employed mother, have largely stemmed from the exhaustion that accompanies parenting a child with special needs.
I became self-employed when my twins were only 5 years old, and while I did not acknowledge it then, looking back now, I can confidently say that my business performed extremely well during that period (for about 6 years up until mid-2021). In addition to that, I was in a very healthy and loving relationship after my marriage ended, I maintained a healthy weight, my home was neat, my work was organized, and while this journey was still challenging, I was able to maintain a fulfilling social life! I now also know that all this was made possible by a small but very supportive community of immediate family members, close-knit friends, my autism mom support group and right at the centre of it all, our beloved stay-in domestic assistant.
While I would have paid top dollar to ensure that our domestic assistant stayed with us indefinitely, a great opportunity with excellent personal growth prospects for which we both could not refuse was presented to her in her home country. This required her to leave with immediate effect and while I was ecstatic for her, unfortunately her sudden departure complete with changes in familiarity and routine, affected my son negatively and he started regressing in his toileting etiquette and behavioural issues.
Our new domestic assistant, frustrated and visibly traumatized by the demands of a high support needs pre-teen, could not cope and was unable to adjust to my son’s needs. During this time, my work was heavily interrupted as I now had to be around my son every minute after he returned from school as the accidents became more and more frequent. In the process of trying to deal with this new situation, I decided to let my domestic worker go and embarked on structuring my work around my son as I needed to focus my energies on re-potty-training him. Needless to say, this was an extremely difficult period, both physically and emotionally as I also felt led to dive in much deeper spiritually which changed a lot of other dynamics around my home.
Managing all of the above, along with juggling work around irregular hours and unconventional spaces, left me physically, emotionally and mentally exhausted and worse, without access to the resources I needed to pull myself out that pit. Thankfully, I have once again managed to secure the services of a wonderful domestic worker who provides us with much needed relief twice a week. I can confidently say that her presence has been invaluable in helping our little family maintain our sanity, allowing me to do work that is close to my heart and even pursue other personal developmental ventures. A lesson learnt is that I am only human…and there is only so much I can do without a strong family support, which is sadly very common for many of us on this journey. It is for this reason that consciously making an effort to create or be part of a community that can hold space, anchor and most importantly walk with you is so important, it truly lightens the journey.
One of my biggest realizations over the years is that as autism moms, we understand all too well what our fellow autism moms go through and also share the same unspoken fears about our children’s wellbeing in the event that we’re no longer around. This shared experience makes us a uniquely strong support system for one another, even amid our own challenges. Just as our grandmothers and those before them found strength in each other and established societies to advance themselves financially all those many hard years ago, we too must build strong communities with sustainable financial structures that endure beyond our lifetime, ensuring the well-being of our children.
I have learnt that a strong and reliable support system on the special needs parenting journey, even if you may have to buy it, is completely invaluable. To have an extended family member, a friend or domestic assistant who connects well with your child, understands your family dynamics and helps you to maintain balance in your life is a true blessing that should never be taken lightly.
To have a tribe of mothers who understand first-hand the challenges of this journey, who walk with you, cry with you, fight alongside you, celebrate with you, work together to bring about solutions for the benefit of the community, and not only care about yours and your child’s wellbeing but also make it their business to ensure that your child is in good hands even when you are no longer here is a dream come true. If you’re fortunate enough to find people like these, value and respect them wholeheartedly. This single act can make a huge difference in your life – not only for your sanity but also for your ability to truly thrive!