Before my son’s autism diagnosis, I had never even heard about the condition. No one in my family was familiar with it, and I knew of nobody who had this diagnosis either. So I started with a blank slate, with absolutely no idea what to do, how to deal with the challenges, who to reach out to or where to start. I had no clue if what I was doing was right or wrong. Just as my successes were my own, so were my failures. We, as a family, learned along the way as we experimented with different things. Over the years we’ve perfected a few things, or so we think, and there are some we are still trying to figure out. Here is a list of my top eight mistakes:
1. Trying to hide his diagnosis
For a few years after my son’s diagnosis, I would avoid discussing his condition to anyone, family or friends. Every time someone asked about his delays, I would evade that discussion or just give a vague answer. It took me three years to say my son is on the autism spectrum. It took another few years for my husband and my family to accept this. What caused this turnaround? It was the realization that talking about it is the best way to increase awareness and encourage acceptance. If I won’t discuss my son’s autism, how can I expect others to accept him? If I have a problem talking about it in the open, people may talk in hushed tones behind my back. I’m proud of my son, not in spite of his challenges but because of them. My change in attitude led to others looking at him in a positive light too. As I educated people about autism and the challenges that my son faces every day, they began appreciating him more and avoiding him less. This, to me, was the first and the most significant step in our journey with autism. With us embracing our son’s autism, the journey became easier. I know there will still be people out there who would not understand our journey, but then not everyone is supposed to.
2. Insisting on age appropriateness:
The phrases “40 is the new 20,” “age is just a number” and “young at heart” sound so good, but suddenly when it came to my son I was obsessed with making sure everything he did was “age appropriate.” I was not comfortable with the fact that he was 7 and still watching nursery rhymes so I kept pushing him to watch other stuff and try different things, but he would invariably walk away. We noticed when he was watching his rhymes, he was happier and more aware of his surroundings. It was then I realized it’s more important that he connect with something than try being someone he is not ready for. The day I stopped trying to impose social standards on him and met him where he was, I found we had more things to do and enjoy together. We were both happy when I accepted my child for what he is rather than what I wanted him to be.
3. Trying to “fix” him all the time
During the initial years of my son’s diagnosis, all my hubby and I did was research the internet for that magic potion that will “fix” his challenges. There never was one. It probably was us who needed fixing. Instead of enjoying his childhood and letting him be a kid that he was, we tried to pack his days with supplements, protocols, therapies, exercises and more protocols. He hardly had time for himself. We hardly had time for him. We were busy ensuring he was like every other kid out there. His uniqueness made us anxious. Eventually, as we came to terms with our reality and at peace with his diagnosis, we realized our son was not a work-in-progress. He was our joy. It’s OK to try and encourage him to reach his maximum potential, but it’s not OK to be obsessed about trying to make him someone he is not. We now have more time during the day for him. He loves going to waterparks and riding roller coasters. He enjoys the wind on his face and rolling down a hill… and we would have never known that had we spent all our time turning our little boy into a project that needed a repair.
4. Thinking he is not “smart enough”
Since my son could not talk, most of the time I assumed he did not know. One of the days while I was teaching him his alphabet and phonetics, I whimsically decided to go on beyond our usual A through E, and I was pleasantly surprised to discover he already knew much more than what I thought he did. There have been several instances after that have proven my smug notion of my son not being so smart was completely unfounded. I have come a long way from there. I’ve noticed flashes of his brilliance in so many things he does. I believe in his abilities much more, and I know his inability to express verbally does not equate with his cognitive skills or intelligence. My son has learned so much by just observing, listening and watching than I thought he was capable of. Every time he proves me wrong, my heart swells with pride a little more!
5. Assuming that all meltdowns are behaviors
Autism is commonly characterized by behavior challenges and so it’s not unusual for parents to believe that every time their autistic child has a meltdown, it has a behavior component to it. For a very long time I was that parent. More often than not when my son had a meltdown, I would insist it was a behavior and that we need to ignore it. That’s exactly what I did. Ignore him. I believe this to be one of my biggest mistakes. When he needed me to understand him, I ignored him. I thought by not paying attention to his behavior I would be able to discourage and eventually eliminate it. Where I went wrong was in believing all meltdowns are just bad behaviors. As I educated myself more I realized I need to be more attentive to my son’s cues. A majority of the time, there is a function to his behavior. It’s not to throw tantrums. It has a very specific reason for its occurrence. For instance, my son would have some phases during the year when his behaviors would increase. He would roll on the floor, and cry and bounce and be really irritable, grinding his teeth, banging his head. I had no clue initially until we realized his behavior peaked during allergy season. He was trying to tell us that his allergies made him extremely uncomfortable. He just didn’t have the words for it. Once we figured that out and took the necessary precautions, we saw a drastic fall in his meltdown. There are many similar examples where we were eventually able to identify the reason for his meltdown, and that really helped us help him. I believe it also helped build a level of trust between our son and us .
6. Thinking he is always in his own world
I learned to think my son is always “in his own world” wasn’t true. I was at a party where all the kids were taking turns performing and singing while my son was in a quiet corner stimming on his favorite toy. After all the kids were done singing we thought of letting our son give it a shot too. He watches a lot of nursery rhymes but we’ve not really heard him sing those unless we prompt and sing most of it while he fills in a few words. As I handed him the microphone, I did not expect much except some mumble. He floored me with not just singing (actually humming… but what matters is that he did it) the same rhyme a little girl had sung just before him (which means he was listening to everything going on in the room) but also after the huge round of applause, he got up, walked up to his audience and sang two more rhymes. It shattered my belief that he is always oblivious of the world around him. What might look like his indifference is not always what it actually is. He might not show it in the most obvious ways that he is observing and absorbing, but he certainly is. I learned never to underestimate him. He might sometimes wander off into his safe zone, just to take his sensory edge off, but he is very much where he should be… learning and adapting… even though we might not feel it.
7. Sweeping everything under the “autism umbrella”
I’ve, for a very long time, and sometimes even now, done things for him I know he can do if given a chance. One day I watched a motivational speaker with none of his limbs talk about how his parents never treated him any different from his other siblings. He talked about how that helped him become a stronger, more confident person who has achieved some of the most difficult feats like climbing Everest. That was an eye-opener for me. I realized I would not let my son try new things because I was scared he might fail. Now that I’ve stopped sweeping all his skills or the absence of under the umbrella, he is blooming into a more independent kid. I can see the change in him. He explores more and he tries more often. I still help him but not until he has tried enough.
8. Expecting everyone to understand all the time
After the diagnosis, I was in denial for a long time. I had no idea how to react to this new situation. Over the years I’ve learned to live in harmony and enjoy everything my son is. However, even now when I hear about a parent receiving the diagnosis, I’m not sure what to tell them. When I am still struggling with how to best support another parent in such a situation, why should I expect everyone else to be understanding and supportive all the time when they have not even walked a single step with me on this journey? I would initially get upset over people not getting what I was going through, but it finally dawned upon me that maybe they were not supposed to. It’s not their journey. It’s mine. People can be clueless when thrown into a situation like this. A lot of the times they just don’t know what to make out of our situation or how to react to it most appropriately. I think it’s not unusual for someone to be ignorant about something they have not encountered. What I can do is spread awareness. That I can do. I can help people understand autism better so they can be more accepting… I’ll be glad if they do, I’ll work on it if they don’t.
My mistakes taught me where I should have gone and where I went instead. They pushed me to try better and harder in trying to understand my son. My mistakes helped me get a clearer insight into my son, and they helped change my perception of autism for better. My journey is unique because my son is. It will probably take a lifetime to understand him and his challenges, and I’ll probably make more mistakes along the way, but what is important is I learn and evolve so I can be a better parent for my son.
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