The Forgotten Side of Autism

The forgotten side of autism is something my son Cody lives every day.

And as his mother, everyday I live the severe, nonverbal, sometimes even aggressive side.

You hear so much about the children labeled autistic that go on to become speakers, lawyers or even doctors. And that’s amazing.

However, that’s not our autism.

I just want my son to be able to put his pants on the right way. I want my son to learn to bathe himself. I want my son to be able to tell me what he’s feeling or to be able to verbalize his needs and desires.

I want my son to have happy days. I want my son to feel like he’s got a place in this world and that he’s valued.

I don’t know why the world doesn’t talk about this side of autism. It’s forgotten and so needs to be talked about.

I remember how hard the early years were with Cody. I remember the daily meltdowns for hours at a time where I would just sit against his bedroom wall and watch him thrash about screaming and flailing not knowing what he needed. I remember just making sure he was safe and feeling so very broken.

I remember how my stomach would ache just before he was to arrive home from school. I remember car rides when Cody used to choke me while I was driving.

I remember taking him to a drive-thru for a hamburger, just to get out of the house and sobbing as I watched all the kids inside with their families having a night out enjoying themselves and not knowing how to connect with my son or what he needed.

This is the forgotten side of autism.

Watching my son walk in circles while staring at the floor, the constant prompting to remind him not to stuff his mouth with food and the repetitive behaviors are just part of being a mom to a severely autistic child.

Knowing it’s 365 days a year, every minute of every hour is extremely exhausting and sometimes I forget to breathe. I feel like when your living this life it’s so easy to forget there is a world out there because you’re so consumed with the day-to-day issues it’s easy to lose yourself. I always feel like I’m not doing enough to help Cody. He should be doing this or that by now. Blah, blah, blah.

This is the forgotten side of autism.

The constant questions. Why is he not speaking in complete sentences by now? Will he ever or will it always be one to two words in a back and forth conversation? Will I always need to prompt him with a yes or no when asking a question and there’s no response?

I don’t know the answers so I keep working with him and hoping he will continue to make progress.

There are no next chapters in our autism. Every day is the same day, the same cycle of repetition and rigidity. The same questions are being answered the same way over and over again.

This is the forgotten side of autism.

Why does Cody need to be stimulated every single minute all day long. This is extremely difficult especially during the weekends. Cody is unable to structure his own downtime with activities he likes. He needs to be prompted and encouraged to participate in these activities. It’s like he forgets he even likes to do certain things.

Cody will circle the house over and over until I prompt him to do an activity. He has no idea how to fill his time. He’s always been this way.

It’s rare I find him doing an activity on his own without being prompted. If he has too much down time he ultimately has meltdowns and it’s very difficult for him to maintain a calm body. It’s a bit of a double-edged sword. Meaning that if Cody has too much down time he he will have a meltdown and if he is too structured for too long a period of time he will also have a meltdown. It is a very fine line we must tread.

This is a constant for me and I’m slowly learning to just enjoy him in his progress even if it’s not where I had hoped he would be by now.

I struggled for a very long time not knowing what he needed.

I tell you this so you will understand that once I understood what Cody needed it was only then that I was able to guide him and understand his different abilities and work with those strengths to help him thrive and ultimately be happy.

I’d like to share a quote that I find to be so very true for life in general. Just like the forgotten side of autism there are other sides to life that aren’t often captured but we still can learn so much from.

“People take pictures of the happy moments in their lives. Someone looking through one person’s photo album would conclude that we had led a joyous leisurely existence free of tragedy. No one ever takes a photograph of something they want to forget.” –Robin Williams

What I take from that quote is simply the fact that autism can be very difficult, sad and all too consuming and those are the times we try to forget but I challenge you to look deep internally during those times to see how you can learn or understand more and ultimately grow from these difficult or sad times.

Oftentimes, when I’m out and I come across a special family, I’m drawn to them and if somehow our eyes connect it’s like we have this deep understanding without even speaking a word of what we’re going through and even if we only exchange a smile I feel that connection.

There are so many of us out there walking the same path sometimes we’re just unaware because when we are on that path we feel so alone but I now know there are so many on this journey and when I’m fortunate enough to come across an amazing family I am truly inspired as I watch from maybe across the room or across a restaurant. It’s like someone sprinkled angels all around to give us hope so we may continue on this journey and know we’re not alone.

The forgotten side of autism needs to be talked about so more understand. It’s not just about the ones who go on to college or become speakers. There are so many more which we can learn from and help others understand and accept.

I urge you to continue talking about the good as well as the struggles. Only then will you and others continue to grow and ultimately understand.

This is dedicated to a special person I had the pleasure of meeting one time many years ago at a support group and who just recently messaged me and so once again our paths have crossed and I am forever reminded of how amazing and strong you truly are…this is for you Karina.

Written by Leasa Hoogerwerf

My name is Leasa.  I am the mom of Cody who is 17 years old and diagnosed with severe autism.  We were told to institutionalize him early on and decided to do the complete opposite keep him with us, love him and work with him nonstop.  Cody spoke his very first word at 9 years old.  I started Cody Speaks to document our journey and share with others hope and encouragement.

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  • Susan Anderson

    May 29, 2018 at 11:00 am

    Just wanted you to know that you are not forgotten by everyone. I will include you in my prayers.

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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 my page!


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