Our fertility journey to the conception of our son, was a long and winding road, full of highs and lows. I discuss this journey in more detail in a subscriber-only blog called “Clouds & Rainbows”. Our birth story was also quite adventuresome, and that is further detailed in another subscriber-only blog called “The Big Entrance”. For those that are interested in our first few months as a new family, I discuss this in another subscriber-only blog called “A Bit of a Blur”. Though you will find a plethora of publicly available content on our website, please consider becoming a subscriber to Life on CAPS LOCK, to read more detail about our personal journey. Some blogs have been made available to subscribers-only because they contain more sensitive subjects and some intimate family photographs. I feel more comfortable sharing this sort of content with a select audience of parents, who could perhaps better understand and relate to some of our stories, and not with the wider web. This protects both my family’s privacy to some extent and allows me to be far more candid about various special needs challenges that there is still stigma around.
*Please note that the subscriber page is not yet active, but we will update you as soon as it is.
A lot of people have asked me when my husband and I first realised our son is autistic. To be honest, we knew something was different about him very early on. And this is mostly because we signed up to be part of an antenatal group when we fell pregnant.
My then-partner, now-husband and I, were older parents. I was 37 when I conceived our boy, and my husband was 42. We felt as though it would be a good idea to join a parenting class, so that we knew what to expect from pregnancy and birth. First, we signed ourselves up for a First Aid course that was conducted by a facilitator in our home (it was COVID lockdown at the time). Once we’d completed that, we began searching for a good antenatal class to join and heard great things about Thula Baby Centre through close friends who had just done the same thing. We were excited to get started!
The antenatal classes were conducted over Zoom, as so many similar things were during COVID. There was a big group of us, perhaps 15 couples in all, with similar due dates – all within a couple of weeks of each other. There seemed to be a diverse and good cross section of attendees which made us feel very comfortable. There was a navy couple, a couple that worked on yachts, a lovely gay couple who were going the surrogate route, socialites, introverts, very young, and older-than-us couples. There was even a couple who were having their second child and just wanted a refresher course.
Once a week, we all signed on, on a Thursday evening after work, and learned about the various stages of pregnancy. We were given a very thorough explanation of female anatomy which made many of the fathers-to-be squirm in their seats! We learned all about our baby’s growth development through all three trimesters, health and sleeping tips for us moms-to-be, and what pregnancy symptoms we might experience. We were taught about different birth plans, how to recognize Braxton Hicks contractions, how to identify actual contractions, how to put a diaper on a baby, how to bath a baby, and how to care for the umbilical cord site after birth. It was a very informative fun class, and we all had a lot of laughs! Over the course of our weeks together, we formed a WhatsApp group for the moms-to-be, so that when our babies started to arrive, we could keep each other informed and updated.
It was being a part of this WhatsApp group that first indicated to us that our gorgeous little guy, was more sensitive than most of the other babies. Once Aidan was earthside and so were his little pals, us moms naturally fell into chatter about our early days with our babies at home. We talked about great care products, baby clothing, bowel movements, breastfeeding challenges, and sleep issues. Ours was probably the most traumatic birth story in the group, and we really battled from as early as the first week home. While the other little bubs were mostly sleeping or feeding, our little cub seemed very out of sorts; he couldn’t latch to breastfeed, was barely sleeping, hardly pooping, and seemed to be experiencing pain somewhere.
I was very self-conscious of the fact that our journey had few parallels with anyone else’s. Other moms were getting the hang of breastfeeding, booking newborn photo shoots, getting their babes all dressed up to go and meet extended family, meeting up with each other with their babies in slings and strollers at various beauty spots around Cape Town, and just generally being out and about. We… were not. Not at all. We found ourselves completely homebound, trying to find our feet with our high needs child.
Aidan was such a gorgeous baby – honestly, the cutest little button you have ever seen! But he was also a very sensitive and unhappy little boy. He was 100% a Velcro baby and wanted to be held at all times – day and night. He would not allow us to put him in a sling or carrier, he would cry when we put him in his pram, he didn’t like being unchanged or changed, each diaper change was a drama, and he wouldn’t fall asleep unless he’d been tightly swaddled, carried, and walked up and down for 40-45 minutes. Even once he was asleep, he’d only cat nap for an hour or so, always on our chests, before waking again. Aidan also struggled with trapped wind, battled with burping, didn’t want to breastfeed, and instead preferred a formula bottle. He seemed to sense strangers and anyone who wasn’t Monty or me couldn’t hold him. He hated the car more than anything, especially being strapped into his car seat! This was tricky, because we were so concerned with his wellbeing, that we spent a lot of time going back and forth to doctors and specialists, trying to get answers. I remember having this overwhelming feeling that our precious little cub was overawed, overwhelmed, and scared of the big wide world. I felt that if he had half a chance, he would gratefully return to the warmth and safety of the womb.
Aidan wasn’t a good sleeper and wanted to be right between us both at night. He wouldn’t tolerate being laid down in a crib, bassinette, or co-sleeper next to the bed. We ended up having him propped up on towels in a baby nest, where one of us could always have a hand on his chest, but neither of us could roll onto him. Nonetheless, we were so nervous about that possibility, and about SIDS, that my husband and I ended up sleeping in shifts, so that one of us would always be awake with him, and the other could get some proper rest. Nonetheless, we were both completely exhausted all the time.
As the other little babies in our antenatal group started to settle and progress, Aidan began to cry… day and night. I became convinced it was a formula issue and we moved him between quite a few, trying to find the right fit. Each formula seemed to have some awful effect on his tummy, and it was clear to me that Aidan was really struggling. Despite this, he was putting on weight very nicely, and was in the upper percentile for everything, so thankfully, we weren’t experiencing “failure to thrive”. But we were growing increasingly alarmed. We would panic, and take him to the ER afterhours sometimes, but there were no paediatricians in triage. They were all young doctors, getting general experience hospital-wide. None gave us much reassurance, or workable solutions. Every single time we went, Aidan in tears, me in tears, a nurse would ask me if I was a first-time-mom, and attribute my obvious overwhelm to that, rather than taking my concerns for our child seriously. I grew to massively resent being asked that question – it quickly became a pet peeve of mine. I just wanted someone to help us, and it seemed as though nobody could.
Frustrated by it all, I ended up cycling us through three or four paediatricians. None seemed overly concerned that our baby might be in pain, or struggling with a serious health issue, because of his great length and weight. They kept suggesting over-the-counter colic brews, spoonful’s of Panado, and new brands of formula, leaving us to battle alone with tinctures, tonics, and transitions in the trenches at home. It sometimes felt like Aidan’s worst moments only happened afterhours, when phoning a doctor’s practice for advice was impossible. Aidan’s distress was such an acute source of pain to me, that by the time he was five months old, I had become very anxious and depressed. I lost my sense of self, and along with it, my appetite. I dropped a lot of weight very quickly. And I cried a lot. A LOT! Those early weeks were just my newborn crying, and me crying, and my husband feeling completely helpless. It was an awful time, honestly. I desperately researched Cape Town-based specialists every night, and I eventually found a highly accomplished pediatric allergist named Professor Claudia Gray. She ran a practice called the Kidsallergy Centre, which operated out of Life Vincent Pallotti Hospital, and we went to see her.
Wow guys, when I tell you that I knew instantly that we’d found the right doctor, I can’t emphasise that enough. She was so gentle, so considered, so knowledgeable, and she knew exactly what to look for in Aidan. She took a thorough history, she properly physically examined him despite his resistance to being touched by a stranger, and she was concerned about our wellbeing as his parents too. One of the very first things she ever said to me was, “your boy has a very sensitive brain” in answer to my question about why Aidan would become super hyperactive, when given a medication designed to have a soporific effect on him. She suggested we do an allergy scratch test to see if he was allergic to any common allergens… and he was! She also diagnosed him as having silent reflux. We moved him onto a prescribed hypoallergenic formula called Neocate and began giving him Nexiam, and we were OFF! With proper expertise and sound medical knowledge under our belts at long last, we were able to pave the way for our little cub to become far happier than he had been in many, many months.
I shared all our findings with my fellow moms in our antenatal WhatsApp group. My thought being that if anyone was experiencing the same and were too embarrassed to admit that they might be struggling, I could give them some of the hard-won advice we finally had. But nobody was… The more I shared with the group, the quieter the response became. There was the odd sympathetic acknowledgement, but it felt like crickets and tumbleweeds for the most part. Looking back, it was at that stage – when Aidan was around 4 or 5 months of age – that I consciously realized that we were walking a different path, with a unique set of challenges that weren’t “the norm”.
Funnily enough, I am still in touch with some of those moms today. We still check-in with each other every few months. Obviously now, everyone knows that Aidan is autistic, and that we are special needs parenting. But those early weeks of struggle, and those months of feeling “other”, had a profound impact on me. It made me extremely private about the extent of our challenges. I stopped going into details of our experiences with family members, fearful that I sounded oversensitive or even paranoid, building mountains out of mole hills. I also stopped reaching out to our circle of friends, other than to send them photos of Aidan. It was easier than having to explain or defend why something as simple as meeting up for a coffee or attending a birthday party was so difficult for our little family. Lingering COVID was a good enough excuse back then not to attend many functions or frequently be around large groups of people. And, within that quiet space, we began to understand our son’s needs, and find our footing as parents.
Looking back, I guess I didn’t want to expose the fact that we were 100% winging it at home. We had no idea how to manage Aidan’s many sensory sensitivities – smell, sound, light, weather, temperature, and textures – other than to avoid as many triggers as possible. We didn’t know why he cried so much until he was diagnosed with allergies and silent reflux. We were wary of opening ourselves up to judgment because we already felt like failures as parents. But most of all, this mama bear didn’t want anyone to look at Aidan as anything other than the gorgeous, sweet little boy he was. It ultimately meant, that we efficiently emotionally isolated ourselves from our support network, despite some of the hard and scary things that we experienced as special needs parents.
I was extremely fortunate, to have an incredibly supportive husband who took weeks off work to help me with our son. I know that not everyone is as lucky! Early on, I became too anxious to take Aidan out of the house on my own as I was nervous about his over reactivity to all sorts of everyday things. I lacked the confidence to do things other moms were doing and really enjoy my motherhood. My worst nightmare at that point, was to find myself far from home, with a baby in meltdown, struggling to comfort him while other people stared at us. Our home was our haven but also our prison. It became the first tightly controlled, highly manipulated environment we built around our son’s needs. There was a ritual and routine for everything because we quickly discovered that Aidan thrived on the sameness of things. He seemed to crave predictability. Monty and I were a stellar team when it came to Aidan’s care, and I knew I could tag him in to help me with whatever needed doing, day or night. He was – and is – an involved and incredible father, a supportive husband, and 100% a team player. I don’t think either of us could have gotten through the first few months without each other. But I’ll never forget the awe and pride I felt, watching my husband step up to be the best man and father he could possibly be. His actions and consistency showed me how much he loved us both. Those first months bonded us close together as a couple. And though there are still some very hard days, we’ve grown so much together, learned so much about autism, and know that we can depend on each other absolutely, which is a truly amazing gift!
If I could give another first-time-mum, or special needs mum, some advice… it would be to reach out to your Village, as early on as you can! Bring them into the fold, tell them what you’re experiencing without shame or embarrassment, and allow them to share their advice with you – even when you know it doesn’t easily apply to your unique situation. Make them a part of your experience and motherhood journey. You may feel like you have to do it alone, but truthfully, you don’t! Be brave. Be bold! Take yourself and your baby out of the house as much as possible. Even if you need to bring along your partner, a family member, or a friend for company and support. You can do this! And you deserve to have some semi-normal formative experiences, and to celebrate your beautiful baby – just like everyone else.
