Autism: What I Wish I Knew Then

Autism What I Wish I Knew Then
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Autism. It’s just a word. A diagnosis. But i look back today and remember the fear this embarked in me when I first heard the word Autism in relation to my child. I have no idea why except the fact that the potential diagnosis of Autism wasn’t something I expected to hear. I didn’t expect to hear Autism when I took my son for his 15 month wellness visit and I mentioned a lack of words. He didn’t talk much at all then. A few babbles and that was it. Before that moment, I don’t even recall knowing anything about Autism. Just that in my eyes it meant there was something “wrong” with my child. A term I had heard in passing but dismissed as something that doesn’t happen to people like me. I also didn’t know then, that Autism is a word not the end of the world.

Autism Marcus 2015

When I left that 15 month wellness visit, I wracked my brain for any other explanation for his lack of language skills. Maybe I didn’t do enough? I am a stay at home Mom, maybe it’s something I was supposed to teach? Maybe I didn’t read enough or play the right games with him? Is it because I let the TV run non stop even if he isn’t watching it? Maybe the pediatrician doesn’t know what he’s talking about. My child is perfect the way he is. I had decided in that moment, he would talk when he was ready and we would wait it out and see. My child didn’t need therapy or other services. I am his mom and mothers know best after all, right?

Autism Marcus 2015 A few months later..

Three months later, the words he used to know and babbles he used to make had regressed. I slowly watched my funny and charming child withdrawal into himself. Where there once was laughter, soon turned to silence. He became a shell of a person he had been several months before. The longer I waited, the larger the gap in language skills became when compared to his peers. At this point I made the call to his pediatrician and requested services for my son. It could only help him, not hurt him.

I had decided if we didn’t like it, we could always stop the services. I wish I knew then that this step was going to make all the difference when it came to my son. That the studies are right when they say that early intervention is key when it comes to most children with developmental delays. At that moment I felt so weak and like a failure to my child. I wish I knew that it was brave to admit this wasn’t a battle I could handle on my own.

Marcus 2017

You see, when people hear your child has a language delay they assume it’s because you were lazy. That teaching a child to speak is so easy. But no one tells you about how deeply communication skills impact ones learning.

Noone tells you that every single thing a typical child learns to do is based on their understanding of communication. How to play with others, come up with ideas on their own, talk, etc. My child skipped this step. He had no idea what the purpose of words was let alone how communication came into the grand scheme of things. I didn’t know either. I thought he just didn’t know how to talk but it was deeper than that.

My son was missing social cues, failing to understand the purpose of language, what actions meant, etc. This eventually lead to other delays that became more noticeable as he aged. I wish I knew then that it’s okay for your child to take longer than their peers. It’s okay as long as you are doing something about it. I became my child’s biggest advocate when I finally understood that language is more than just words. Language and communication skills literally make up your entire being, or that’s how it feels to me anyways.

Autism isn’t a one shoe fits all diagnosis. In fact, rarely are cases the exact same.

I wish I knew then that Autism is just an umbrella term for so many other “issues”. The term “issues” being used loosely though because every child is different when it comes to autism. I wish I had known developmental delays are commonly labeled with the umbrella term, Autism. What I would have given to have known then that in 4 years my child will have made leaps and bounds to where we started. I also wish I had known that it wouldn’t always be easy but we would get to this point someday.

There will be progress, regression, and then progress once again….

You see, for every stride we made there was always a new evaluation that made me feel like we were falling even further behind. What started at speech therapy soon turned to play therapy and then an evaluation from the school system that would discredit his need of services. This journey had left me questioning so often where do we go from here and is this all made up in my head? Even at 5 years old I still find myself questioning if this is real or something only his therapists and I see.

Play therapy lead to Occupational Therapy. Occupational Therapy lead us to Physical Therapy. All of this therapy helped my child strive though. It helped him become the best version of himself and it taught me how I could encourage his growth at home too. All of these therapies lead to my confidence to FINALLY seek a diagnosis. I finally found a comfort zone where I was “okay” with a diagnosis. A true diagnosis and not a quickly thrown out diagnosis because it sounded like it fit the situation.

Autism Awareness 2019

Wait for a diagnosis until YOU are ready. When you feel all other avenues have been exhausted.

I wish I had known then, that waiting until I finally felt like we had reached our best potential for a diagnosis was the best choice for my son. What if I had, had the confidence that everything would turn out exactly how it should have been? What if this is a piece of confidence I had been gifted with when this whole journey began? I stayed in denial for several years that Autism could be the cause of my sons developmental delays. I can say I am thankful for the denial now. Denial lead me to question every evaluation and delay. Denial gave me the grounds to be the very best advocate for my child.

If I had not chosen the path that I did, I could have easily accepted a diagnosis back then that my child was a severely nonverbal autistic child. That would have been okay with me as well though but not until I had exhausted all other measures first. Back then I had this fear of labeling my child. As though this label would determine how far he would go or the things he could do. Like this label would inhibit his full potential in life. Autism is a word. A diagnosis. But Autism doesn’t determine who you are or how far you will go.

Every child is different. Every case of Autism is different. Early intervention is key.

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