When you Take the Lens Off

I am not new to the autism world, in fact, I’d like to think of myself as almost a professional autism mom. 

Many times, I am called in by a lot of my social media friends to be the one they connect to, when another mom has a child that is showing developmental delays, or behaviors that just don’t seem very typical for the age. 

My son is almost twelve, and we’ve been through so much since the day that 6-pound 13-ounce baby was placed into my arms.

When he was a baby, nothing seemed different.  Nothing seemed off.

When he turned 6 months, that’s when the delays started showing. 

The older he got, the more I realized just how behind he was compared to same age peers and family members. 

I fought for him to be seen by all the specialists, and by fought, I mean that it took him until he was 4 years old to truly be seen. 

Everyone always stated to me that he will develop on his own terms, boys will be boys, and I shouldn’t compare him to his older brother who did everything way early. 

But, that deep down gut feeling knew something was wrong.  

And with that, came heartache, because as mom, you don’t want to admit that you think something is wrong with your baby. 

At four years old, we finally got word of a rare chromosome disorder that our boy had.

We knew at that moment, that life was going to be a struggle, because the geneticists had no clue how this was going to affect him later on in life, and it is a day by day type thing. 

We left more confused than when we went in.  But at least there was an answer.

The older he got…age 5, 6, 7, 8…the behaviors were just unbearable. 

My husband was deployed for most of those years, and it was definitely a trying time for me.

I never felt adequate to be this sweet boy’s mom.  I was always researching, trying to find a way to help him, what therapies, what special needs programs, what could I do to help him?

My mind was always racing.  My brain never stopped and neither did he.

I had so much hope that with the right doctor, or the right program/therapy, he would “snap out” of these delays and just be a typically developing kiddo.  

I began to go into a deep depression, because the hope that I had for so many years, was beginning to diminish quickly. 

He was still developing at a slow pace, but his age was not stopping.

His behaviors were getting harder, he was put into a special needs’ classroom attached with a 62-page IEP and behavioral intervention plan. 

My heart would break knowing he was in therapy 5 days a week for 3-5 hours a night, while other kids his age were at youth sports or hanging out with their friends well into the night.

I wanted so much for my son and I to enjoy those moments I was seeing on Facebook. 

I was wearing myself so thin trying to create a childhood for him that is plastered all over social media.  

And then I am not sure when it happened, or what event occurred, where I just basically clicked my heels like Dorothy in the Wizard of Oz and realized that I was forcing my son to live a childhood that he could care less about. 

That always ended in tears, sweat, and a frustrated momma who never understood why.

Why our life had to be so different, why we couldn’t be like all the other families.  

I took the lenses of a typical family off, and after taking the lenses off, I began to see so much clearer what my son needs to thrive. 

He needs structure, he needs family time in the backyard playing hoops, kickball, or football.

He needs McDonald’s burgers and fries.

He needs SeaWorld and the zoo on insanely slow days where he can be free (for the most part). 

He needs tags off his clothes.

He doesn’t want to be pushed out of his comfort zone very often, but when he does, it is a cause for celebration…a huge one!

He needs sensory breaks, and his video game at times.

He needs sensory hugs and crash pads. 

He needs to be told things literally and he needs extra time to process things.

He needs a week in advance of plans, so that way his body and mind can prepare.

He needs rewards. He needs the movie Elf all year round.

He needs special needs dentists, developmental pediatricians, and a special needs haircut place. 

He needs to get his energy out early or all day he will have behaviors.

He needs understanding from his mom that sometimes he just can’t handle what we had planned, and it is okay.

It is okay to miss out on events that other families post about.

It is okay to miss out on a typical childhood for your kids, because the most important part about childhood is happiness and having memories that are cherished. 

I just needed to realize that sometimes those memories don’t have to mimic everyone else’s’ memories.  

When you take those lenses off, it can be scary and you will probably have regrets and think that you are not doing enough; but I promise you though, you are doing enough and it is a beautiful world full of smiles and deep breaths that come when your child is seen with what they need to thrive. 

Not what everyone else needs.

My son is extraordinary. He lives an extraordinary life and one that is beautiful…so beautiful.

Not conventional, but very beautiful.

I am not saying that some days I don’t fall into a depressive state, or that there is still a glimmer of hope that one day it won’t be so hard, but we have more days where we know that he is living his best life, even if it is not the one we had pictured when he was placed in our arms.

If I am being honest, I am exhausted keeping up with him and his needs. 

With each passing day and with each meltdown we tackle.

With each outing where people stared or commented on my parenting or my child’s behavior; I grew stronger.  

They say to try not to focus on the negativity of people, but when all your outings were met with negativity it is hard to not focus on negativity and feeling like a failure. 

But, with these new lenses, I am able to know that they don’t parent him.

They don’t know what we go through and in that moment in time I am focused solely on my son, and not on their thoughts or words. 

I am not sure when I felt like I received this invisible autism mom badge, but I wear it so proudly.

We have conquered mountains and dug our way out of deep valleys that I thought we’d never make it through. 

Written by, Tonia Brown.

My name is Tonia Brown, I am 32 years old and I have two sons, Kyler aged 15 and Noah aged 11.  Kyler is my typical teenager whom I hardly see due to after school activities and homework.  Noah is my sidekick, my shadow.  I married my high school sweetheart 14 years to the day (December 10th), and just trying to survive this roller coaster of life.

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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.