When my son Tumelo received his formal diagnosis of autism at 2-years and 7- months, it truly was merely just a confirmation as Uncle Google had long addressed my concerns. My biggest advantage at the time was that Tumi is a twin and as you can imagine, the differences in the developmental milestones were glaring, driving me to search for answers everywhere.
By the time I received my son’s diagnosis, I had already read up so much on the condition and had even convinced myself that autism is really not that bad thanks to beautiful and positive autism quotes and stories of the successful artist Stephen Wiltshire, academic and animal behaviourist Temple Grandin and many other highly celebrated autistics. My child was going to be a genius, I was convinced. And while that may actually be the truth, I must say that I am both grateful and sad to have been so oblivious to the reality that was to be in years to follow.
That being said, I also know how important it is that as parents of newly diagnosed children, one is provided with the support and positivity to ground them for the journey ahead, however I truly believe that mine and my family’s lives would have been so much better today if I had been better prepared for the reality of raising a child with autism.
I was initially convinced that Tumi required low support; however, as time went by, I realized that he actually needs a lot more support as at almost 14, he is still completely non-speaking, requires moderate assistance and high supervision with maintaining personal hygiene, and is also prone to aggressive and destructive behavior when frustrated.
Looking after my son is probably something that I may have to do for the rest of my life, and thankfully this awareness no longer fazes me especially as many of the lessons I consider most valuable in my life have been from this journey, which on its own gives me so much hope for the future. This being said, I still wish I had been equipped with a bit more information on things to be mindful of so as to best prepare for me and my family on this life-long journey, especially as my son gets older.
I WISH someone could have told me to prepare astronomically, finance wise, because raising a child that requires high support has proven to be extremely costly. One could be mistaken to think that these costs are limited to those of a medical and educational nature, however there are many other costs including those of countless intervention options explored along the way in an effort to give your child a fighting chance, numerous repairs and replacements of furniture, electrical appliances, clothing, telecommunication gadgets that gets damaged during meltdown moments amongst other reasons, extra help whether in the form of aftercare or nannies, educational toys, etc.
And then of course as the child grows older and many other family dynamics come into play, such as illness, death of a caregiver, etc., the cost of assisted living, whether externally or with family, is also something that needs to be financially prepared for.
Specialized education, healthcare and even assisted living can be provided by the government, and as a beneficiary of both specialized education and healthcare for my son currently, I will be the first one to acknowledge the huge financial relief that this offers to families like mine, albeit the fact that quite a lot of ground still needs to be covered in order for the majority of us on this journey to be afforded the full value as one would imagine that to be the intended purpose.
I WISH someone could have told me to develop and empower myself for the road ahead, by either upgrading my skills, furthering my studies and especially creating multiple or consistent streams of income, so that I can have as many options as possible that would mostly allow me to generate an income without putting myself under too much pressure. Being a caregiver to a special needs individual is, after all, a full time job which is unfortunately unpaid.
Due to large amounts of time usually taken off work for one reason or the other and the animosity that this carries in the workplace, I personally know of many moms, including myself, who had no other choice but to leave their jobs. Sadly, finding yourself in an unfortunate event of navigating this journey without an income or at the very least, a reliable support structure that takes care of daily living expenses can send you into a deep hole of depression.
I WISH someone could have told me that advocacy comes hand in hand with parenting a child with special needs. That on some days this advocacy will quietly and routinely unfold, perhaps without you even noticing, and on other days, it will be very loud and draining. That on my best days, I will teach and raise awareness, and that on really bad days, I will be up in arms with the world fighting to prove my son’s worthiness to reasonable accommodation, quality education that seeks to empower him with some level of functionality and maybe even a basic income generating skill instead of being kept in a day-care environment, completely invalidated and written off amongst many other injustices within the related sectors.
Yes, advocacy is inescapable if one is to at least attempt to secure any chance, no matter how miniscule of their child one day being part of an economically active population, because even in the face of adversity, the heart of a mother can never give up on their offspring.
I WISH someone could have told me that my mental health will be significantly challenged on this journey. That I will grapple terribly with a life that has turned out to be completely different to what I had dreamt of and worked so hard for myself, and that for the longest time, I will be stuck in survival and victim mode for what I would perceive to be a raw deal by the universe. In the same breath, I wish someone could have also told to be aware when this happens so that I can quickly, and with all the inner strength I can summon, dust myself off these negative emotions and never allow all this to make me lose sight of my light for in the end, it will all make sense.
That I will be ok. That I will find my tribe of phenomenal humans, some walking my journey, others never even fully understanding the full spectrum of challenges I face, however, holding space for me regardless, thus making both mine and my son’s journey lighter and really special through their support, wisdom and kindness.
I WISH someone could have told me that the parenting journey I am embarking on will be completely different to the one I knew or had even experienced before, and that if I really pay attention, my son will not only teach me how to parent him, but that he will also inspire me to raise my conscious, delve deeper and find my purpose on this earth.
And that most importantly, it will be through fighting for my son to have a voice and a place in this world, that I, will find my own voice.