THE ROAD TO THE LIGHT – ONE SOLO MUM’S MISSION TO NEVER GIVE UP ON HER SON

AllOfUs

Me, Nick and Maddy

IT WAS A LONG ROAD FOR SOLO MUM, CASSANDRA, TO FINALLY GETTING HER SON DIAGNOSED WITH AUTISM AND BEING ABLE TO GIVE HIM THE INTERVENTION HE NEEDED TO LIVE A BRIGHTER LIFE. HERE’S HER STORY…

When my second child, Nick, was born, I quickly recognised there was something different about him. He cried non-stop, wriggled constantly and generally seemed agitated. As a second-time mum, I confidently went through the usual checklist to comfort him… milk, a nappy change, more sleep, extra clothes, baby carrier, the pram – none of it worked. He just would not settle – every time. Eventually I found a routine where I’d remove all stimuli, swaddle him tight, rock him strongly and shush in his ear, and finally both of us would get a little rest.

By the time Nick was two months old I noticed he wouldn’t make eye contact. Even when I held him above my head and brought him closer for a kiss, his eyes showed no recognition, and even after being reassured by friends and family that it was probably nothing, I couldn’t put it out of my mind. At the time, Nick’s dad was so tired from a combination of working, poor sleep and Nick’s intense reactions that he just wanted the problem fixed… he didn’t care how or why, he just wanted a happy baby.

It was when Nick turned one and still wasn’t using words or showing interest in the outside world, that I knew I had to take control. He’s now seven, but when he was born autism wasn’t on anyone’s radar, so I had no idea where look for help. Initially I went to Tresillian to improve his sleeping. When they couldn’t get him to settle, it cemented the idea for me that we were outside the norm.

From there we tried neurologists and then ended up seeing a neo-natal paediatrician. At first he sent us to an occupational therapist, and from her assessment he suggested that Nick had Global Developmental Delay. As I sat there with my baby in my arms, he told me that this meant Nick would never attend a normal school, yet seeing my obvious shock and distress at a diagnosis that seemed to come from nowhere, he offered me no validation that my feelings were normal or that anyone in my position could expect to be feeling slightly insane with the challenges and intense sleep deprivation I was facing. Instead, he told me that my anxiety was making Nick’s agitation worse, and I was put on anti-depressants. In hindsight, I sure did need anti-depressants by then, but I still hate the fact that I was made to feel that Nick’s problem was my fault.

With no other avenue to turn to, we continued to see the paediatrician for two long years with limited levels of success, and even though each appointment was full of umms and ahhs as he seemed to be grasping at straws, having them scheduled helped me muster the extra strength I needed to get through each day with the hope that ‘this time’ we’d have an answer.

At one point, we had a minor win when Nick was put on formula to combat the food allergies that were contributing to his agitation, but while it did help a little, it had the side effect of painful bouts of constipation. The doctor’s answer to this was to give him more laxatives, which was never going to help considering the resulting affects on his brain development and cognition, and so as we got deeper and deeper into each treatment and theory, it felt that instead of fixing his condition, we were continually slapping bandaid after bandaid onto it.

I knew that one day it’d get better. I kept imagining myself walking along a road towards the light, my fear was that I wouldn’t have the stamina to get there”

After almost two long years of more and more questions and even fewer answers, the situation took its toll on my relationship and my husband and I separated. At the time, it didn’t affect me that much, I was so incredibly tired that it was all I could do just to get through each day and as I’d collapse into bed each night, I’d lie there imagining myself walking along a road towards the light – and while this was my hope, it was also my greatest fear, because I didn’t know whether I had the stamina needed to get to that light. And so, my life dissolved into a whirlwind of appointments and new therapies, management strategies and trials. My job on the weekends the kids were with their dad provided some relief, but overall, no one seemed to understand my situation. There were days when I’d be at the supermarket and I’d just wish that someone would see me struggling and offer a kind word or a smile.

One day, as I was enjoying this simple act of chatting to a customer at work, she mentioned her twin grandchildren were autistic. I asked about their symptoms and so many of them matched Nick’s that I couldn’t wait to book into the centre she’d told me about, and finally, after a few observations and tests, Nick was finally diagnosed as autistic.

At last I had an answer. I went to our next paediatric appointment filled with renewed confidence. ‘I’ve found out what the problem is, Nick’s been diagnosed as autistic’. I told him as I sat down.

‘Well then, that’s good if it makes you feel better ‘, he replied without looking up from his pile of paperwork.

His blatant dismissal of us that day gave me the resolve I needed. I was on a mission. I devoured every shred of information I could find about autism, secured funding for an occupational therapist and found an integrated doctor who helped us with nutritional approaches to calm Nick’s nervous system and promote sleep. I started him on supplements and implemented an SCD diet (restriction of starch, sugars and dairy). We also saw a chiropractor and had cranial sacral therapy regularly.

Maddy@Nick

Maddy and Nick

With the support of Nick’s older sister, Maddy, who is so wonderful with him  – teaching him social skills and always happy to explain things in a way he can easily understand, I became his daily therapist with endless repetition and reinforcement to help him use more words and speak in longer sentences.

Step by step we’ve now put together a plan that works for Nick. I can see it in him every day, and slowly my ex-husband is even supporting me more as he can see the progress too. Today, Nick’s a quiet, but delightful, funny and easy-going character. He’s calmer, sleeps better, is more social and more able to understand abstract concepts – and he’s always asking questions so his mind is alert and keen to learn. After some adjustment time, he’ll now play alongside others and will even try to make them laugh. He goes to an autism specific school with sensory breaks that ensure he comes home calm and happy, and slowly but surely, we’re working towards the day where he can be more independent. Just recently he joined in with the school book week parade in front of a crowd – it’s such an amazing accomplishment from all those years ago.

We still have our challenges, of course. I will always have to watch his food, be vigilant about excessive stimulation in places like parks and schools and make sure he gets enough sleep to avoid agitation and aggressive behaviour. The money needed to keep up with his supplements and therapies is an ongoing weight on my mind, but I hope we’ll be able to get the NDIS (National Disability Insurance Scheme) that will help.

“I always wanted to be a mum, and while I never expected it to be the journey it has been, it’s taught me that while nothing is guaranteed, all things are possible” 

As for me, well, over the years mindfulness and meditation have become the mainstays I use to manage my stress levels, stay in the moment, appreciate the simple things and make sure my thoughts don’t run away into made-up scenarios of the future. Now that Nick’s health is more stable, I can finally start to focus on myself again. The power of nutritional medicine and the brain’s ability to relearn is something I’ve come to believe strongly in, and so I’ve enrolled in study to be a health coach. I’m looking forward to helping others who are where we have been and building more support that is so needed for people with disabilities and their families. I don’t know exactly how that will unfold, but I’m excited to find out, and perhaps even one day share it with a loving partner.

Not once did anyone tell me that Nick would get better, but I decided I’d aim for the highest outcome possible, and because of that he’s far more advanced than he ever would’ve been without intervention. So when I look back at every dark day and every sleepless night when I thought I might not make it to the light at the end of that road, I’m proud of every single step I took, because our lives are now brighter because of it.

 

 

 

 

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