Parenting a neurodiverse child turned my world upside down. My daughter is my biggest learning curve in life, the biggest blessing, and the most incredible teacher.
My little girl was diagnosed with Autism Spectrum Disorder (ASD) just after she turned two. She wasn’t delayed in any aspect or sense developmentally but had a sudden regression of skills and speech, which led us to seek help in figuring out what was happening. ASD is a spectrum and quite complex in the diagnosis stage as no two people are the same.
Although autism can have similarities across the spectrum, it affects each individual differently and most of the time, a diagnosis of ASD comes with more. With my daughter, an anxiety disorder and language disorder followed.
A lot of people speak of the grief that comes with your child being diagnosed with a disability or condition. Although this is something very real and valid, I couldn’t relate. I didn’t feel grief and I don’t quite know why.
I processed it, but didn’t grieve the child I imagined. In fact, it was quite the opposite. For me, I felt more like this is the same child I had before a diagnosis and she’s the same child after. So what now? How can I help her thrive? How can I support her to become the best version of herself?
Having a child with a disability, or being disabled, is a lifetime thing – it isn’t something that you can grow out of. But as a parent, you can help and support with intervention, different kinds of therapy and doctors, as well as teaching yourself so that you can live the best life possible and ease your / their struggles. There won’t be a day when you wake up with a resolution, there is just the day that you realize you have become content with uncertainty.
On one level, life after her diagnosis changed everything, while on another, everything was still the same. I did not go back to work and put her into a nursery like I was expecting to. Instead, I found a team of therapists that created an intervention plan to help support her development and struggles.
While my friends were sending their kids off to nursery, taking pride in typical milestones, enjoying playdates and simple “normal” things with their children, I was heading from appointment to appointment, therapy to therapy, staying up at night learning and longing for the simple things that parents often don’t realize are so special because they come so easily to the typical child. Things like eye contact, answering to their name, hearing their voice, have a conversation, or holding their attention even for just a second. The little things that are often overlooked are things many parents of a disabled child pray for.
The realization that I was on a unique road taught me that I needed to have thick skin. I needed to learn to adapt, to speak up for her. I had never known anyone who had a child with a disability, none of my friends or family members had a disability, so I couldn’t – and didn’t expect others – to understand it. Some days I wanted to be treated the same, other days I wanted them to know how different life is for me and my family.
We were fortunate to be able to afford therapies for my girl, but quickly realized even seven hours of therapy a week just wouldn’t cut it. Intensive early intervention was crucial, and before I knew it my life revolved around therapies of 30+ hours a week, observations, parent training, and appointments.
Therapy also needed to be carried out at home, which is crucial to generalizing skills she learned in therapy and maintaining progress. Consistency was everything. We didn’t enroll in nursery or school, and the invites and playdates quickly became non-existent. However, we choose joy over defeat every single day. We found calm in the crazy beautiful chaos. We celebrated every tiny miracle each day brought.
Along the way, you connect with other parents of children with additional needs and you slowly create your village of people who understand your normal, who don’t bat an eyelid at the difficulties or differences. You become best friends with your daughter’s many therapists and become your child’s fiercest advocate.
Our normal may not look so normal to those on the outside, but this is all we know. The fidgets, the stimming, the sometimes loud noises, the anxiety, avoiding busy places, structure and routines, specific ways of doing things, therapies, and repetition.
As she grew older, some things got easier, but a lot of things have also gotten harder. The therapies are still ongoing, from speech to occupational therapy to therapy for her anxiety. We spend hours every day working on her educational goals in her IEP (individual educational plan) as well as lots of activities to meet her sensory requirements in order to regulate. When a child with sensory processing difficulties is not regulated, all their senses are out of balance and this can cause them to be under- or overstimulated.
We work on exposure to new places regularly as integrating neurodiverse people into society is vital. Yes, the upkeep is ridiculously expensive and a lot to manage physically, mentally, and emotionally – but it is so worth it.
I believe in my daughter wholeheartedly, but there was a time when I wondered if I would ever hear her voice and if she would ever let me into her world. Amani is seven now and she is the most determined, hard-working child I have ever met. She is a big sister to a new little brother who she absolutely adores (another common myth is that autistic people cannot show emotion to others). She can now speak and her eye contact is incredible.
Her differences and quirks are a lot more obvious than when she was younger, but one of the hardest parts is navigating society. The lack of understanding and the lack of acceptance is fuelled by so much ignorance and ableism that you don’t realize or notice until it affects you or someone you love on a personal level.
She has experienced bullying from people unwilling to understand that she stim’s in public with her hand movements or squeals in excitement. One negative encounter can have an immense impact on a child with anxiety that already has to make an emotional and mental effort to be in public situations.
We’ve had people laugh, pull their children away, whisper, stare, make fun and roll their eyes. If there was anything any parent of a child with additional needs could ask for, it would be kindness. Teach your children to be kind, to ask questions, and to be accepting because there is nothing wrong with being different.
This is the path of a special needs parent, but the words “special needs” or “disabled” don’t need to be scary. I might have never thought I would be walking this path, but my daughter isn’t a burden and her diagnosis will never define her. She is a beautiful little girl and she deserves to live a normal life just like any other child. I wouldn’t change her for the world.
For parents who might be scared or just in need of a reminder, I leave you with this: “Parenthood is about raising and celebrating the child you have, not the child you thought you’d have. …They might be the teacher who turns you into the person you’re supposed to be.” ~ Unknown