13 Sep My Autism journey through my Daughter

Autism Spectrum Disorder (ASD) is a lifelong range of neuro-developmental disorders characterized by impaired social functioning and communication disruption. It is often diagnosed in children before the age of three. Symptoms include but are not limited to; an intense focus on one item or activity, unresponsiveness, repetitive or self-harming movements like head-banging, lack of understanding social cues like tone of voice or body language, lack of eye contact, meltdowns, and social withdrawal. The severity of the symptoms and level of functioning varies from child to child. It sounds so mechanical on paper, in person… It is a whole lot more because of the emotions behind it. In both child and parent. Emotion has got to be the most left-out topic despite being the backbone of the whole ‘movement’. The push and pull, the peaks and pits, the frustrations and acceptance, the wins all around. The whole nine.

Like most of you, I was gloriously ignorant about Autism…until it landed smack dab on my door. I had heard about it but I had not bothered with the intricacies. Presently, I am possibly a walking Autism dictionary. I read and re-read anything that touches on Autism. I have a burning need to be informed, I cannot afford to be in the dark.

See, my 7-year-old not yet verbal daughter is Autistic.

She was diagnosed with delayed developmental milestones before she turned 2 years old. By the time she was 2 and a half, the true diagnosis was made after several tests were done by different doctors. Her hearing was also checked to rule out deafness as at some point she was completely non-verbal. Just like that, I live and breathe Autism research. I made it my business because this is my child and if I don’t champion her, if I don’t find out what makes her tick, if I don’t find out what’s good for her, if I don’t find out how to help or guide her… who truly will? The day I got the call about her possibly being Autistic is etched in my mind. I was at work, a computer on my desk, so I did the first thing I thought of… I Googled. Foreign words that did not describe my child jumped out at me, ‘lifetime condition’, ‘no cure’, ‘special needs.’ I completely broke down.

I was in denial for a couple of weeks, I dined on pity parties, I drowned in sorrow thinking of my poor child. I took it pretty hard one would have thought the diagnosis was mine. But that’s how we mothers are, we carry our children’s burden as our own. I finally decided to properly read up on it and be more informed as I only had a negative outlook of Autism in mind. Wolfgang A. Mozart, Sir Isaac Newton, Albert Einstein are some of the most significant figures in history who are believed to have been in the Spectrum.  How cool is that! Geniuses. That right there is how I got a massive mind switch.

Despite their social deficit, Autistic children may exhibit unexpected and extraordinary exceptional skill or brilliance in numerous fields including memory, music, the arts, calculations, or mathematics. The medical term for it is Autistic Savant. My daughter has exhibited some remarkable skills with mathematics but mostly with memory. She rarely forgets and often remembers anything exactly as she saw it. Jigsaw puzzles have nothing on her. She will see the full image and in less than 15 minutes has it completed, no matter the number of pieces.

She also does not forget a route to a place we have visited before especially if she enjoyed herself. I usually have a time of it distracting her whenever we pass any Mall, shopping center, or building that houses a lift or elevator. Her idea of fun is being ferried up and ‘dropped’ back down…repeatedly. I noticed she enjoys mental activities that challenge her, she will obsessively work on it until she is satisfied it is correctly completed. But once done, she gets easily bored. Getting content that fulfills her curiosity is not a walk in the park, my effort sometimes is met with a resounding ‘No!’

It has been 5 years since her diagnosis. As her primary caregiver, she has opened my mind up in ways I did not think possible. Quitting formal employment was one of the major decisions I made without regret. In my opinion, I truly believe being her primary caregiver has given her more confidence to make the progress she has made. The highs and lows that we have shared have cemented our relationship where she knows she is loved, accepted, allowed, and encouraged to be herself while expressing her needs no matter the circumstance. Raising a child who has not yet mastered the art of speech has connected us to a different realm. It is as if we are in our world removed from everyone where speech is secondary. Every eye, hand, and body movement is a form of communication. We found a way to communicate and understand each other in a way no one has yet to fully join in. This has got to be the most beautiful bit about our story, to me.

Approximately 1 in 10 persons with Autism has some savant skills, this is how I chose to look at all this. That I am raising a genius who possibly possesses savant skills. I don’t focus on the fact that she is a government-registered Person With Disability (PWD), or that she is taught by a certified special needs teacher, or that I will always stand up for her, be her voice and protect her. Nope, none of that bothers me because, at the end of the day, she’s my child and my responsibility. I will do whatever it takes to provide her with a healthy environment in which she needs to grow and thrive mentally, spiritually, physically, and independently.

To endless possibilities!