How my ego got in the way of giving my son a resource that could have helped him

I was talking with someone on the weekend, and he was telling me about how his niece, currently 15 years old and non speaking, is giving his sister a hard time.  He went on to give me some examples of the kind of behaviour she exhibits.  My first question to him was does she have access to an AAC device?  He didn’t know what an AAC device was, so I continued with my questions.  Does she have a way to communicate.  For example, cards or an app like Proquolo2go?  He simply responded no; she can’t talk.

I walked away from this conversation angry, disappointed and completely heartbroken for two main reasons.

The first reason was because here was this non speaking autistic girl who had lived for 15 years unable to communicate with her family about her needs and wants.  Can you imagine being put in a situation where you cannot communicate with the outside world what you preferences are or that you needed the bathroom or that you were in pain?  The frustration would be immense and yet sometimes we look at our children as just giving us a hard time.

The second reason was that it ignited something within me.  I was offered Proloquo2go when my angel boy was 2 years old.  Our speech pathologist at the time had recommended it.  I flatly refused.  I didn’t even want to consider it.  “Don’t be ridiculous” I said.  “He’s going to start talking very soon.”  I was so offended by how our speech pathologist had just assumed my angel boy wasn’t going to start talking. I knew in my mind that he would talk.

The problem here is that my ego, my fear was stopping my angel boy from communicating with us.  I held back the one thing that would ensure his needs could truly be met because I didn’t want to accept the fact that he had autism and that he was non speaking.

I also knew that if we allowed the AAC device I couldn’t hide behind my façade that he was just a slow learner.  It would be obvious to everyone that he indeed, did have a diagnosis, and I wasn’t ready to walk over that bridge yet.  I couldn’t walk even remotely close to that bridge because then I would have to face the fact that my future and his future would truly be set on a different path.

Looking back now, I wish I had a coach to unpack all the thoughts that were going through my head at that time.  To unpack why I had reacted so quickly and so defiantly to someone who was just trying to help.  What did the device represent for me?  I wish I could go back to that time and unpack the anxiety that the AAC brought me.  I would have held hands with the past version of me, reassuring her that this indeed is the way forward.

I often wonder, had we introduced the AAC would his language be further along than it is right now?  Would we have been having more sentences?  I will never know because that is not the path I chose.

My question to you is how many non speaking autistic children are out in the world right now, who do not having access to an AAC device in order to help them communicate?

How many mothers are under so much pressure and stress that they simply cannot think clearly.  Don’t do what I did.  Don’t let your ego or your fear stop you from allowing your child to thrive because you’re too scared, like I was, to make that decision.

I was too worried about what everyone else was going to think rather than what he needed in that time.

My thought process is very different these days…..Someone else’s opinion is of no concern to me.  My only concern is for the wellbeing of my children.  What resources can I give them in order to help them on their way and pave a way for a brighter future.

Non speaking does not mean an autistic child cannot hear you.
Non speaking does not mean an autistic child cannot understand you.
Non speaking does not mean an autistic child cannot feel things.

Don’t be so quick to judge a book by its cover.

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