Invisible No More: Day 30 of 30

April is Autism Awareness Month and my Invisible No More Project. Autism, like many other disabilities, is an Invisible Disability. I have shared the pictures and stories of 29 beautiful children with the intention of inspiring you and providing hope. The isolation that parents of disabled children feel can be suffocating. I feel it often as well. You are not alone. Other parents are experiencing the same things.

Today is day 30 of 30. Here is my son’s story.

The Beginning

Cooper was diagnosed with ASD at age three. As his mother I knew something wasn’t right from the day we brought him home from the hospital. I get asked all the time what I think caused my son’s autism. It’s like people want to place blame. I simply answer, my son was born this way. And that is the truth. Cooper never lost any skills. He rarely regressed. I read stories all the time about other kids that were fine one day and not the next. That wasn’t Cooper. He was born Autistic.  I never lost my son…in a way, it felt like I never had him. And that broke my heart in a way I can’t fully put into words. I will say though Coopers birth was very long and drawn out and very dramatic. When his 9 pound body finally appeared it took a minute or so to get him alert. I will forever wonder if he was deprived of oxygen.

From day one Cooper was never content. I wouldn’t say he was crabby…I would describe it more as busy. His mind wouldn’t shut off. It was very confusing for me. Now, I know he is a sensory seeker who loves sounds, colors and deep pressure. As a mom to a newborn though I couldn’t figure out why my baby hated everything. He hated sleeping, sitting, moving, riding in a stroller or car…I could go on. He needed constant change of movement and scenery every 10 minutes. That was the max time he would do anything. But what can you really do with a newborn? At times I thought I was losing my mind.

At nine months Cooper started watching cartoons and never stopped. I would see other kids playing and I couldn’t figure out why my son refused. Everything about him confused me and I felt like a failure. He didn’t want to snuggle me. Or play with me. Or interact at all. At many points I developed anxiety about spending long periods of time with him because I didn’t know how to make him happy. I describe it as walking on eggshells. Cooper’s anxieties and rigidity dictated our whole entire life. And to make it worse he never slept. So, from 3 am to 9 pm he needed constant technology stimulation. Only he couldn’t tell me what he needed. Ages 2-3 almost killed me. We didn’t have a diagnosis…nor could I get one. He made eye contact. He pointed and waved. He saw airplanes in the sky. He had joint attention. Doctors and therapists tried to ease my fears constantly. They said it couldn’t be Autism. I knew though. Or at least my mind knew. My heart though was a different story. When I would do late night Autism questionnaires I could always trick the answers into saying he wasn’t autistic. Cooper met every milestone on time except for speaking. We were told he was deaf at one point. And that he was just a late talker. Then developmentally delayed. Don’t forget boys are just late bloomers.

The Middle

At age three I put his name on a waiting list for an autism evaluation. The appointment was three hours from our house and came with a six month wait. My heart said we wouldn’t need the appointment because in six months he would be fine. I kept thinking that one day he would just snap out of it. When Cooper was diagnosed I felt every emotion possible. I felt relief and sadness. And, oh my God, was I scared. I knew his life was going to be hard. I immediately worried about bullying. I also felt validated. I felt angry. But most of all I felt the isolation that having a disabled child brings. I immediately told my self he would be high-functioning….or not severe. I dove into every single therapy and treatment possible. I truly believed in my heart if I tried everything we could still fix him. By age five this would be fine.

Only, I was wrong again. Cooper’s Autism progressively got more severe. You can hide quirky behaviors and lack of talking in a two year old. At age six it is a different story. It’s not cute anymore. Cooper is a big boy. He’s rammy and loud.

I describe Coopers life as a roller coaster. Every week it’s something new. And in a weird way I’m thankful for the constant chaos…because, when it stops…I let myself think about Autism. And all the milestones and memories it’s robbed us of. Parents of disabled children have to grieve. I’ve had a few mom’s fight me on this and say I’m a monster. I don’t care anymore. I love my son more than I can put into words. That’s a given. But Autism changes everything. What should be easy and natural is hard and a struggle.

Autism and Us

When I was pregnant I dreamed of raising my son and his future. I saw baseball games and bike riding. I saw play dates and having the cool house where all the kids would hang out. I never for a second thought I would spend the first six years of his life fighting for a diagnosis, fighting for help and services and praying that one day he would just wake up. Or snap out of it. I didn’t know that there are kids who don’t talk. Or get potty trained. I didn’t know that there are some kids that seem to stay frozen in time…even though their bodies keep growing. I didn’t know that some moms shave their son’s faces. And give them baths when they are teens and grown men. And I really didn’t know some kids don’t grow up and move away. I lived in a naive world before Cooper was born. If I let myself think about the future I plummet. It’s too hard.

Autism has impacted every area of my life…in good ways and bad. Having a disabled child has taught me patience and to see the beauty in the smallest things. My son finds more joy in a silly sound or family picture than most do in a lifetime. He knows no greed. Autism has affected my relationships in good ways and bad. I have amazing, beautiful friends that have stuck by me through my darkest days. They love my son like their own. I’ve lost friends too. Autism is too extreme for some people. Too messy. Too hard. It’s affected my marriage, my job and my finances. Autism has shown me true ignorance in the world. There are really bad people out there. Autism has also brought the most amazing strangers into my life. I’ve met true warriors. I’ve been inspired. I’ve cried. I’ve given up more times than I can count. And every day my son wakes me up with a smile and wave and by rubbing my face. And just like that, I am motivated to fight again. Autism has affected my sanity. I struggle to sleep and think about anything else besides helping my son. I’m working very hard on finding a balance. I need to be more than just a Mom to my Autistic son.

The Now

Today, Cooper is six. He is technically nonverbal and has no words. He uses an iPad and baby sign language for basic requests. He loves trains and music. I call him a hoarder because he loves gathering up things in the house and moving them into piles. His latest obsession is chairs. I think he feels that the chairs are his friends…it’s pretty dang adorable…although it drives me bonkers sometimes. His only activities are jumping on a trampoline and swimming. He spends all of his time on his Kindle. He receives in-home ABA therapy five days a week. We tried public, special education for 3 years. Cooper needs more intense services. He still hates most foods and struggles to leave the house. He is happiest at home with his family. We have made our home a completely safe space for him. He is not potty trained, nor does he have any self care. He also doesn’t understand safety or danger.

Cooper is a complete joy. He has taught me more than I ever thought possible about love and patience. He not only made me a mother but he made me an advocate and a fighter. Cooper will be with me for the rest of my life. And I firmly believe I was put on this earth to give him the best life possible. He has taught me about hope.

The Future

Cooper is loved by every person that meets him. I am proud to call myself his mom. My hopes for my son’s future have changed from when I was pregnant with him. And that’s OK. No, I’m not giving up hope. I’ll never do that. I’ve just learned to modify it. I want him to learn to tie his shoes. And bath himself. I want him to learn to read and write. I’d love if he learned to communicate with me…in any way. I’d love if he was able to make a friend. And get a job. I want him to be able to sit with me and be content. I’d love to take him somewhere he really enjoys. I want him to give affection without being prompted. My greatest fear is that he is lonely and can’t communicate it.

And most of all, I hope that he is truly happy in every sense of the word. I hope that he inspires people and shows other Autism parents how beautiful this journey can be. When Cooper was younger severe Autism in teens and adults scared me. I couldn’t even acknowledge it existed. Now, I realize my son is growing up. Autistic kids turn into Autistic teens and adults. And I’m no longer scared like I used to be. He is an absolutely amazing kid. He’s friendly and funny. If you take the time to truly get to know Cooper he will touch your heart and soul. I say that with certainty. I invite you to see the world through his eyes. Listen to his laugh. Watch his eyes dance with joy and his smile light up a room. You will see everything that is good in the world in my son.

Click to see the entire list: https://www.findingcoopersvoice.com/invisible-no-project/

 

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About Me
About Me

Hi, I'm Kate. I am the mother to a little boy with severe, nonverbal Autism. This is a glimpse into our heartwarming, sad, scary, funny, loving and secret world. Check out my video tab to hear me ramble about Autism.

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