AN OPEN LETTER ON KIDS WITH ASD or AUTISM
This is an open letter on kids with ASD or otherwise known as Autism. This is for those who have these super kids as children, siblings, nieces/nephews, grand sons/daughters, friends, neighbors, etc. and those who are not otherwise specified. Most especially to those who do not have to take care of kids with ASD.
Earlier this morning, my niece had an early bout of her tantrum. Usually, it doesn’t happen that early because she sleeps in until about 8 or 9am. Today she woke up early. As with kids with ASD who are yet non-verbal, we struggle every day to understand what she wants to say. You see with these super kids, they have trouble with communication. Therefore the usual routine of Q&A doesn’t work with them. You have to be really creative and imaginative in interpreting what they’re saying to you, even if it sounds like a gibberish German-sounding jargon. There are a few lucky times when we positively respond to her call (by sheer luck!) but most of the time, we fall short and thus a cascade of hitting, head banging and slapping ensue.
It is unfortunate that we had to go through that at 6:30 in the morning. My niece’s voice boomed louder than any alarm clock my neighbors could possibly own. I don’t expect anyone to be happy about it, I mean, come on! Mad shrieking early in the morning?! Who likes to wake up to that? But neither did we expect a neighbor to shout the ever heart-shattering “HOY!” back.
To all those who don’t have to take care of a kid with autism, specifically those who are currently in a tantrum, our kid doesn’t mean to wake you from your deep slumber and disrupt your daily routine. Nor did she really wanted to punch us in our guts, throw heavy objects at us,slap our faces or bang her head on a wall if we don’t understand her at all. Earlier she simply wanted to see her Lola and go outside and call the cats. We didn’t even know it until she did.
Any layman might say that it’s just an excuse for a severe case of a spoiled brat throwing a tantrum. Oh how we wish that were true! You see, taking care of a kid with autism is absolutely bittersweet. That’s really something seeing that I’m only the aunt and not the parent. But really, it’s still a mystery to us since our kid has only been diagnosed with Autism Spectrum Disorder or ASD last March 2014.
For those who gave us “the look” at the mall when my niece started shrieking and kicking and the neighbors who just shout “HOY!”, I would like to tell you a story. There was once this 2 year old girl, pretty and charming, who wouldn’t even look at the call of her name. Who can’t even utter a single word, not even “Mama”. Who only took interest in Mickey Mouse and nothing else. Who cries at the sound of the hair dryer or the gushing sound of a water fountain. Who can’t even hold your gaze for more than a second. Now, 5 months after she was diagnosed with ASD and a series of painstakingly expensive and tedious OT (Occupational Therapy) and SPED, by God’s love this little girl can now wave good bye, call her aunts “Tata”, call the cat “Mi Mi”, point to her eyes, nose, mouth, teeth, can play hide and seek, remove her shoes and socks, and can look us in the eye and kiss us here and there.
All those may seem ordinary to many. But for us, families and friends of these kids, it is precious. Of course, there are the occasional monstrous tantrums, we cannot fully avoid those yet. But then again, my point is, if it’s annoying you to see and hear our kid in a tantrum, I could say why don’t you think how we must feel? After all, we are the main shock absorbers, not you! Yet that would be plain selfish. On the greater picture, think about the kid. How difficult must it be for her to simply say she’s hungry or thirsty or that her nappy’s full?
We don’t expect you to understand or give a free pass all the time. But at least show some RESPECT. You don’t know how derogatory that simple “HOY” is until you’re in our shoes. So if you have a problem, come up to us and then we’ll talk.
Meanwhile as I write this I can imagine my niece playing at home with her toys, calling the stray cats “Mi Mi”, totally oblivious that her Tita A is posting this open letter. I’m just sick of not being able to do anything for my niece. I am not the confrontational type, I leave that to my Dichi, she’s more articulate in that area. This is just a simple plea for RESPECT to those kids (and adults) with Autism or Down’s or to anyone with extra-special needs or to all humanity in general because for the past months that I’ve lived everyday with my niece I learned a lot of things. That love can bring so much sorrow and joy and that to earn the good days you must get through the bad ones. If Hazel Grace (from the book/movie “The Fault In Our Stars”) said she was a grenade, well I could say my niece is an atomic bomb! Kidding aside, you never know what happens next if she’ll hit and slap your face or bombard you with hugs and cute smiles and light kisses. You just never know, nevertheless you learn to love. Genuinely love.
I hope this shines even the smallest ray of light on understanding kids with ASD. After all, they are more than their autism.