7th November 2017 was the first time I told our story on makchic, as we navigated our journey through our son’s autism diagnosis. In my conclusion to that piece, I wrote this:
“Every day, I hold on tightly to the sources that say the first five years of a child’s life is key to their development. The silver lining to me is that early detection leads to early intervention.”
It is hard for me to admit this, but when I wrote those lines, I imagined that most of my son’s challenges would have been overcome when he turned five. He is turning eight soon – and the good times and the challenges are still aplenty.
My son is a happy and healthy boy. Haans can share a joke with me and even throw a tantrum or sulk when things don’t go his way. He gets cheeky every chance he gets, and he shows me a lot of empathy when I am down or sick. He is autistic with apraxia of speech. Speaking is a lot harder for him. I can’t remember the last time he had a meltdown. He was diagnosed with autism six years ago.
After much pondering, I thought it was time for me to pen down six things I wish I knew from the start.
1. Autism is a lifelong condition requiring support
I think there is so much hype around “early intervention” that it creates some false hope that our kid will someday just be ok and not have any challenges. Early intervention does help in so many ways. However, there is no expiry date for intervention.
Autism is a spectrum, so every person will have different needs. Some may need prolonged occupational therapy for years, whereas some may only need it for a short span of time. However, this doesn’t mean that the child requires no other support. Going to school, for example, requires accommodations to meet the child’s learning needs. As they grow into teenagers, there’s also hormones and mood swings which they experience differently sometimes, due to sensory processing challenges. Then, what about the adults who go to work?
Depending on their needs, some may require lighting accommodations at work, or special headphones to block out noise. Let’s not forget mental health as well. As our children outgrow their paediatricians, it is important to transition them to psychologists or psychiatrists. Mental health is often a neglected element.
2. Learning is lifelong for the caregiver/ parents
So, I thought that I could attend expensive parent training courses, and do my Masters in Education (Special Education) – and that would be it; I would know all I needed to know about autism and how to care for my son. Boy, was I wrong!
Again, autism is a spectrum. My son’s autism does not manifest in the same way as another person’s. Additionally, my son will continue to grow up. He will not always need early intervention. So, as my son transitioned from an early intervention to a school readiness setting, it dawned on me. I had spent my time learning all I needed to learn about early intervention, only to realise he turned seven, and I had to start learning again.
Since my son finds it harder to speak, teaching him to read, write and count takes on a different approach. He was also able to read full words, but still struggles to spell. We are quite fortunate to have teachers and therapists who work so well with him. The learning continues. Remember that training, regardless the cost, does not necessarily fit your child 100 percent. Always use your judgement as a parent to take what makes sense to you, your child and your family.
3. No one will truly understand your parenting journey, unless they too have a special needs child
I know this sounds harsh or bordering on “self-pity”. But that is not the intention here, this is a reality. No one can truly fathom your daily schedule, or why you choose not to attend a party, unless they live with a child that has special needs.
Granted, there are many who empathise and try their level best to be as inclusive as possible. There are many who do this well, by not pressuring you and always giving you options, or making extra accommodations for you and your child. However, it will surprise you that some of those closest to you may bombard you with toxic positivity where your life and lifestyle are concerned. It comes from a well-meaning place. Perhaps, people feel pressured to say something positive, but I think is more respectful to acknowledge the challenges.
My family and I do not want pity. We want to be understood and accepted as we are. We have good days, fantastic days, bad days, and horrible days. On those horrible days, telling us we should be grateful to be alive sometimes, makes me want to punch the person telling me that. No offence, but this is the cold-hard-truth.
4. Find your tribe, or build your own
Having a circle, or a few circles of friends, on similar journeys is so important. In the early days, I must admit, I did feel isolated; not knowing if I should wallow in self-pity, keep my challenges to myself, or just nod along when people told me to be grateful to be alive. Eventually, I found and built my own circles of friendships that are so valuable to me.
As friends, not all of us use the same approach for our kids, and that is the beauty of it, because we get to learn from each other. Having similar challenges allows us to share and not feel judged for feeling upset or sad. This is the kind of learning you cannot find on Google, or in books. In fact, I have found the best sources of information are fellow parents who have been on this journey a lot longer than me.
If you find a person who has an older child than yours, and wants to be your friend, I say take them up on their offer. Chances are, they have hit rock bottom many times, and would be more than happy to sit with you, hold your hand and be your shoulder to cry on when you need it.
5. Non-speaking does not mean they have nothing to say
I always knew in my heart that Haans was communicating with me in his own unique way. I also had this impression, that if I gave an alternative to speaking, he would not even try to speak. I wish I had come to the realisation earlier, that speaking was just so much harder for him and that this isn’t the only form of communication. When I saw a post on Aurora Autism, I started being more open to Augmentative and Alternative Communication (AAC) devices.
Thankfully, the person who runs Aurora Autism is a friend, and I reached out to her. She was only too happy to share her experience with her son. So, my husband and I decided to take that step. We got a secondhand iPad, bought affordable software, and worked with a speech therapist to get started.
We are all still learning, but I can’t tell you how amazing it is that Haans has this means of telling us what he wants and needs. By the way, I did get some flak from “well-meaning” people asking why I gave my child a device, instead of teaching him sign language. My answer is simple; I do not want to limit who my son can communicate with.
6. Autism is not the only defining factor of your child
This is something I always knew about my child, but I think it is important to emphasise this. Our children are children first. Autism is just how their brain functions. They still have wants and needs, like any other child and human being. Our son had other challenges not related to autism, which were so much harder to detect due to his autism.
He had a tongue-tie, which we detected at age two; he also had something called “glue-ear”, and like any other kid out there, he once swallowed a 20 sen coin. He still needs regular checks at a dentist, he still gets stomach aches, fevers, falls and scrapes his knee. He also has likes and dislikes; he can also sulk if I don’t let him have his way, and he does this by hiding his face or walking away from me.
The reason why I bring this up, is because society still defines autistics by their diagnosis first. I once called a hospital, looking for an ENT to check my son’s ears (due to his history of glue ear). After explaining why my son needed the appointment, I asked if the doctor had experience with autistic kids. She immediately said we needed to see a Developmental Paediatrician. Even a healthcare practitioner in this instance defined my son by his autism first.
Looking ahead
The point is, the journey with autism is lifelong for our children and for us. I am so grateful to have a life partner, my husband who is so hands-on with Haans. They have the most beautiful bond a father and son could have. Nevertheless, the struggles are also quite real. My husband and I are quite honest about our struggles, and we are never one to shy away from the reality.
I think we need more honesty and openness in our society. Recently, an article on World Down’s Syndrome Day by fellow makchic contributor, Li-Hsian Choo, touched on the theme for 2023: “With us, not for us”. I think this phrase very aptly sums up everyone who has any kind of challenges, be it a neurodiverse diagnosis, a terminal illness or physical disability. Collectively, we need to move away from the “charity” and “pity” model. And it starts with us – the parents, and caregivers. Let’s be more honest and tell people things as they are.
By Desiree Kaur
Desiree Kaur was in PR for over 8-years until she found her true calling in the education line. After her son was diagnosed with autism, she decided to pursue her Masters in Special Education. She enjoys writing and advocates inclusion for children of all abilities in every little way possible.
Read her earlier pieces on her family’s journey here: My Story: Beginning My Journey With a Special Needs Child and My Story: Starting to Learn About Autism.
