My Spectrum of Thoughts #autismmom

8:39:00 PM


If you have a preconceived idea about what autism parents must be like and going through, scratch it out and start again. The only way I could possibly explain to you and make sure that you understand the actual situation is if we swap brains. Borrow my mind and heart and you'll get a glimpse of the fluctuating stress level we endure, the littlest milestones that seem like we just conquered the world, the tiny victories when kiddo is able to express his basic needs in few words and short sentences, the anxiety we feel when we don't know what's wrong, the happiness when we see him smile, the blessing he is that we cherish every single day, and the list goes on. It might seem like it is "normal" parents worries and concerns, but they are not.

Our journey into parenthood has shifted away from the norms - from what society is used to - and that's ok.
My husband and I are both very familiar with going against the current, through his radio host status, his music activism and support for hip-hop and local talent, and in my case, through advocating for plus size fashion and the body positive movement, as a blogger. We have an unconventional approach to life and I think this has prepared us as parents, as we welcomed kiddo into our lives.

A big part of our strength as a family comes from our faith in Allah, and from always expressing gratitude for the numerous blessings we have, including our health, having a roof over our heads, security, togetherness, family support, and above all love. With highs, there are always lows, so I cannot sit here and only write about the good side and our strive for optimism.
Just as autism is a spectrum, life carries its beauty in different shades, from light to dark, from white to black, when sometimes wandering in the grays can be helpful transitional periods, the weak links that revive a bad situation. There is enough sugar-coating on social media to ice the world's largest fake cake, so there is no place for that in this context. Life is all about balance: there wouldn't be room for change and evolution if everything was only black or only white.

You take the good with the bad, and you go with the flow, one day at a time. It takes a great deal of energy and a handful of patience to start every day. Sometimes, unpredictable  things may occur and it could shift your day 180 degrees. You eventually master the art of adapting to any given situation and to improvise.
How to redirect a tantrum or a sticky situation to a calmer more soothing one, when in public, with a child who is hypersensitive to new environments and unfamiliar noises. Luckily, with time, kiddo has also mastered his own ways to adapt, whether through prompting (which makes him feel prepared and full of anticipation) or through his curiosity (he likes to google anything that tickles his fancy) and that helps him understand his surrounding more. Again, another example of how balance is important in life. There is always a way, and it all takes hard work, attention to details, observation, compassion and dedication. Patience, so much patience, and when you receive the colorful fruits of your high-minded actions, you feel blessed.

On another note, you also learn to ignore judgmental people and relentless stares. Your ultimate focus is your child and nothing else really matters. Strangers will walk away, nosy family members are not part of your day to day and sudden-philosophical friends will recommend a few articles and tactics, and  - as the Penguins from the animated movie Madagascar would say - you will "just smile and wave, boys. Smile and wave." I wasn't always 100% confident in the beginning. I used to be very self-conscious about what people might think of him, if he were to react in this or that manner, especially when we are out. Mama instinct kicks in the second our children are born, but I switched to turbo mode, once we discovered Ahmad's diagnosis and we realized that people's opinions seriously don't matter one bit. At the end of the day, my husband and I and our little man will be going home. It is our life and we like to handle it the way we see fit, while we set a solid layer for kiddo to thrive, to explore and to experience all aspects of life.

What I hate the most is when people are just so quick to judge. My husband and I have had our share of parent shaming in public. Many think we are foreigners, because of the way we look, so the people would shame or curse at us or talk about our lack of responsibility and incapacity to "handle" our child in public, our incompetence as parents, all spoken in Arabic, thinking we wouldn't understand.
We ignored many times, but this one time it was just the last straw and my husband couldn't stand it anymore. It was one of the harshest comments and he replied in Arabic - even brought out his Saudi accent for extra shock - and they were just stunned. They froze.
They were so embarrassed when we told them that our son has autism, and there is no need for quick judgment. I hate how people are so impatient, so annoyed, so extra-unnecessarily sensitive towards things that they can either try to understand or offer to help instead.
Society is normalizing this kind of behavior, because - again - social media. We are so used to typing comments and clicking on likes and dislikes - behind the comfort of our screen. But now, words are blurred out publicly. People want everything fast. Kindness and tolerance are a virtue, use them! 
As parents and as a couple, we are very conscious individuals, we don't like to let things get out of hand, but if people step on our toes, it is 100% bear instincts.
Mama Bear and Baba Bear got kiddo covered. 

Here are some of the random things people (not family or friends) tell us:
"He doesn't look autistic"
I always don't know what to make of that comment. I find it borderline offensive.
I am not sure what they were expecting.
I know most people don't mean any harm, but to be honest, especially as a mother, I would never express such a comment. It is so raw and blunt, even coming from a nice person. It will always backfire. It would be nicer to ask something like "What does he like?" // "What's his favorite toy/game?"// "What does he like to do?"

"He must be really smart - like a genius! Is he good at math?"
This is another misconception about children on the autism spectrum. They are not all prodigies with high IQs or potential genius mathematicians.
The media and film industry has recently been tapping into characters that are on the autism spectrum, and they are all portrayed as geniuses, whether it is "The Good Doctor" or "The Accountant". Maybe a little closer to reality would be the series "Atypical" - knowing that the teen in this production is actually verbal.

"Are you worried about the future?"
Sure, I think all parents would be worried and concerned about their kids' future. But for the time being, we are trying the best we can to provide him with tools, to prepare him for life. It is all a work in progress. I guess that's what parenting is. That's what raising children is all about.
Preparing them and equipping them with confidence, power, values, ethics and always stay humble and open-minded to all possibilities, because you never know what their calling might be. You need to be their biggest support system, and believe me they will pick up on your love, as they are very intuitive.

These were the most recurring comments we get.
Some people probably don't mean any hard but they were just clumsy in their attempt to start a conversation about our son. We have no hate towards anyone, and we do like people who are genuinely interested in getting to know our son, and what it is like to be his parents.
Subtle curiosity is not a crime. We welcome it. That's how we wish to propagate our message that #autismisnotadisease,  it is a way of life. My husband uses his public appearances (as an MC), his interviews on TV, and his social media platforms to promote our life loving and message of tolerance, acceptance and love towards our son and autism.
Always shouting out our ray of sunshine.

But when comments are demeaning and charged with ignorance, despise or judgment, then obviously we don't tolerate. No one would.



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1 comments

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