Autism Series: Lost in Translation

Posted by Joanne Ma on

This entry is from a mother who have experienced many types of loss in her life. The pain is real and the struggle is real. Living with a child on the spectrum is not easy. It tests you, your relationship with your partner, your character, your patience, your relationship with others, and everything in between. And it is lifelong. Here is a raw and real emotional response from a mother who truly just wants the world to know... autism is never going away, so don't be afraid to reach out and extend a hand. You'll never know how much that would mean to a mother. 



Extended Family "Lost in Translation"

The definition of family is something I struggle with as I am sure many parent’s of a child with Autism do. I understand the “nuclear family” but am at a loss of the definition of an “extended family”. Although I am positive that some Autism families relish this phrase and all that contributes to its meaning.

I feel as though for us “extended family” is lost in translation. For myself it does not seem to exist when translated into the language of Autism. It slipped away as so many other things have done. It is strange when your child’s therapists, consultant and school support worker feel more like family than those actually related by blood. They know your child’s favorite color, the toys they play with, the names of their friends without even a hesitation in their voice. Yet those that are family remain distant. I am unsure if it is the unknown to them or whether or not they simply do not want to be a part of our lives, but it hurts.

It is a pain that builds inside and chips away at you. Feeling as though you are on the periphery of a family unit that you so desperately need. Hanging on a cliff looking up hoping that someone will extend a hand but instead seeing a blank expression across the faces of those closest to you as they step back and judge your every move.

I wonder why they can’t see how much we need them and if they do why then do they look away as if the Autism does not exist or is simply bad behaviour. Sometimes family seems more distant than strangers, looking into our “secret society” but with no desire to belong. Tonight my heart has broken into a million shattered pieces of glass. Shards too sharp to pick up without the pain searing through my skin, pieces of my spirit gone forever, my heart filled with emptiness and a sadness that will never be filled.

April is suppose to be Autism Awareness and Acceptance month but as I cry myself to sleep tonight I can't help ask why why some of those that are suppose to be the closest have never asked one question to understand, support or accept autism.

Autism is not bad behaviour ignorance is!

After tonight I don't think my heart will ever heal, I've just lost a bit more of it to sadness. Another part of me chipped away.

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