The Secret World of Autism

April is Autism Awareness Month. Prior to my son’s diagnosis, I never knew this month even existed. That’s how it typically goes I guess. People don’t pay attention until it’s their life. I get it. That was me pre-Autism. Now, my whole world is an Autism Awareness Month.

I have a six-year old with nonverbal, severe Autism, and I invite you to take a peek inside our secret world. Autism can be scary, isolating, beautiful, humorous, amazing and sad. I, along with many other families, live in this world. Honestly, having a child with a disability like autism is very lonely.

Our children are the faces of invisible disabilities. Years ago disabilities were kept quiet. They were hidden. They were removed from the home. They were institutionalized.

Thankfully, that is not the case anymore. It is the year 2017, and parents are stronger and more equipped than ever to care for their disabled children. And accommodations are made to help keep our kids safe and in their own homes as long as possible.

The Facts About Autism

I am often asked to describe Autism. People want me to explain it to them in a way that makes sense. I have to giggle. How could I ever begin to explain something that has impacted every aspect of my life.  Do I want to educate? Yes, of course. I thought about giving you facts. I could say that autism is a mental condition, present from early childhood, characterized by difficulty in communicating and forming relationships with other people and in using language and abstract concepts.

I could also tell you that in 2014, the CDC released new data on the prevalence of Autism in the U.S. The study identified 1 in 42 boys and 1 in 189 girls are on the spectrum. Pretty scary stuff.

Those are facts about autism.

But that isn’t the world that we parents live in. In my home, I don’t think about labels. My kid is not autistic or disabled. He is simply my son. I love him. I don’t think of my kid as being different. So telling you the statistics doesn’t do much for me. Then, I thought about telling you about the emotional sides of autism. The parts that parents go through every single day.

The Emotional Side Of Raising A Child With A Disability

I could tell you that I’ve lied awake countless night worrying about my son. I could tell you I haven’t slept through the night in six years. I could tell you that I’ve developed an ulcer. I’ve lost weight. I have severe PTSD.

I could tell you that I’ve completely lost my identity. I’ve become my son’s disability.

I could tell you I spend days and nights worrying about my son’s future. I am so scared of dying before my son that there are times I just breakdown. I worry about who will love him and care for him after I’m gone. I worry about what is going to happen to him when I can no longer provide care. I’ve even beat myself up for not having more children to help ease the burden.

I could tell you that I’ve cried enough tears to fill an ocean. I could tell you that I’ve dreamt of my son’s voice. I’ve heard it so vividly in my dreams that when I wake up I actually miss the boy in my dreams.

I could tell you I will stare at my son for hours just wondering what is happening in his head. I would trade anything to climb inside his head just so I could see the world from his view.

I could tell you that having a child with disabilities has turned me into a nurse, a doctor, an advocate, a fighter, an educator, a therapist and a psychologist. All titles I never wanted.

I could tell you that we live in isolation. Because my son’s autism is so severe we can’t go to stores or zoos or restaurants. If we do go to a public place like a park, we wait for a rainy day so there are less people.

I could tell you that autism has robbed us of milestones and special moments. I could tell you that I’ve grieved for the little boy that I dreamed about when I was pregnant.

I could tell you I’ve seen my son hit himself. I’ve seen him beat his head ferociously against walls and floors to get his point across. I’ve seen him in pain. I’ve held his screaming body while countless anesthesiologists put him to sleep.

I can tell you that I’ve watched people stare at us. Stare at him. They wonder if I am a bad mom. They wonder what is wrong with him. They wonder if I don’t discipline my seemingly normal looking son.

I can tell you that I’ve been judged. I’ve been shamed. I’ve even been shushed.

I could tell you that I’ve lived the past six years in waiting rooms while my son has therapy. His village has hundreds of people in it from social workers to teachers to doctors and I know them all by first name. They have become my friends.

I can tell you that I have yelled at doctors, social workers and insurance companies. I have begged, pleaded, and argued for help. I have seen the ugly side of the healthcare system. I could say the system is broken.

I could tell you that having a child on the spectrum has affected every aspect of my life. It impacted my marriage. My friendships and my career.

I could tell you I didn’t know what true love really was until I held that little boy in my arms. And then again when I was told he was Autistic. He was still absolutely perfect to me. I vowed to give him the best life ever. This is my mission in life. To be his voice.

I can tell you that some people who read this post will think I am being negative about my son and his future. They think my words are lies. Or dramatic. Or negative. They think I’ve given up hope. Or worse yet, that I don’t love my son or celebrate his victories.

None of those things are true. I’m not being negative. I’m telling you about the hard parts of raising a child with severe autism. And if I don’t say them out loud sometimes I feel invisible.

Simply put, autism is my life.

My Sweet Boy

I would like to introduce you to the little boy that has completely changed my life. This is Cooper. He is six years old and loves trains, funny sounds and being tickled. He is smart and loving and silly. But those qualities often get overshadowed by words like autism, disabled and nonverbal. He is so much more than those labels. He is a complete joy. He is my son.

Being Cooper’s mom has given me a purpose. I now know what it’s like to fight for things like milestones and services and equal rights. I take nothing for granted anymore. Autism has made me strong. Autism has given me a voice. Autism has shown me love.

An Invisible Disability

So, how would I describe autism? I would say it’s an invisible disability. My son has his arms and legs. He can see, hear, run and jump. He looks like any other child. But the reality is he has never made a friend. He has never spoken a word. He has never been invited to a birthday party or a play date. His disability isn’t fatal. He will hopefully live a long life. But he will most likely never move out or live on his own. He won’t drive a car or manage his money. He may never learn how to care for himself. He may never understand safety. This is the reality of severe autism. But, we still have hope that he does achieve all of these things. We just don’t know.

Autism is an invisible disability that affects 1 in 68 children. I want my son to be seen and heard. I want him to be invisible no more.

Photo Credit: Kacie K. Photography

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(This post originally appeared on Twin Cities Mom Blog)

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Comments

  • Sharon L Johnson

    April 5, 2017 at 9:37 pm
    Reply

    Hello, my name is Sharon I have a son who has Autism and he is 15 years old I he still needs help with some […] Read MoreHello, my name is Sharon I have a son who has Autism and he is 15 years old I he still needs help with some things. I am a single parent and I had him when my other 2 kids where all ready grown up. So I am 59yrs old and I am his only caretaker. His brother and sister help when they can. I have been through days and evenings at different places with my son and also had angry people yelling at me because of what my son did ,in a slide when I couldn't even see what happened. They threaten me and screamed at me snd my son he was only 5 years old then and they called the police on him too. [email protected] From Sharon L Johnson you can email me if you want. Read Less

  • jen

    April 6, 2017 at 6:28 pm
    Reply

    I truly enjoy reading your posts, they are comforting! I have an 11 year old nonverbal son with severe autism, and it is so […] Read MoreI truly enjoy reading your posts, they are comforting! I have an 11 year old nonverbal son with severe autism, and it is so hard and I can truly relate to you, and reading your posts really hits home! Read Less

  • Belinda

    April 7, 2017 at 10:43 am
    Reply

    Thank you for your honesty and for inviting people in to your world and the world of your gorgeous children. I am blessed to be […] Read MoreThank you for your honesty and for inviting people in to your world and the world of your gorgeous children. I am blessed to be the mother to 2 beautiful children and I am a teacher who will be eternally grateful to you for your insight into what it is like to live with a special little man like Cooper. There is only so much that books can teach us about children who have special needs and what you share will forever be with me as I aim to educate all children with respect and dignity and to the best of their ability xxx Read Less

  • Rod

    April 15, 2017 at 9:51 am
    Reply

    Hi Kate, You cannot continue to go through this on your own - you have to find someone who is willing to partner you in this […] Read MoreHi Kate, You cannot continue to go through this on your own - you have to find someone who is willing to partner you in this journey. Most partners run from situations where a disability is involved, but some individuals respond to such situations in a very positive light. You need to hook up with such a person and you need to make this your main priority at this point in your life. Don't be disheartened; there are is someone out there for you and your sons - just be careful that you don't shut yourself off from recognising this person when they come along. I wish you all the best for a much brighter future life. Rod Read Less

  • Maxi

    April 16, 2017 at 12:17 pm
    Reply

    Yeah it would be more difficult to be caring for a person with a disability but who doesn't look disabled. I am a Support Worker […] Read MoreYeah it would be more difficult to be caring for a person with a disability but who doesn't look disabled. I am a Support Worker for a Disabled Man on near Coffs Harbour, but because he looks disabled, people are very understanding. Read Less

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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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