Dear Friends and Family Outside of Our Autism World:

I want to thank you for loving my son. And no, this isn’t another letter about my little superhero Cooper. It’s a letter about my other son. The sibling to a boy with severe autism. My little four-year-old Sawyer. He is my wild, adventurous, exhausting, never-stop-talking, little angel. The one who doesn’t understand autism and all of its constraints. The one who doesn’t understand why it feels like our world revolves around his brother. And I don’t expect him too…he’s four.

I Want To Thank You

I simply want to thank you for loving him and for stepping in when I am caring for his disabled brother. I want to thank you for doing all the things with him that I can’t. I want you to know that I will never be able to truly thank you for being in his life. His other life. The one I’m not really a part of. The one I need him to have. And I want you to know it kills me to admit that. He needs a world outside of autism and I can’t give him that life myself. At least not right now. So, thank you. You are doing that for me.

You joke that it’s no big deal. You love him. And I know you are telling the truth. When he comes home he will talk for hours about your day and my heart will actually burst.

Maybe you went to a beach that day or went to a movie. See, it doesn’t actually matter what you do. What matters is that you are giving him time away from autism. You are giving him time to simply be himself. He can relax or run and jump or see a bridge. And he can do it with you. His time isn’t controlled. He has no anxiety about leaving or meltdowns.

I can’t thank you enough actually. You are doing what I can’t do. And accepting that has been a journey in itself. When they say it takes a village they don’t mean just around the child with a disability. It’s around all of us.

A World Outside of Autism

I need you to know how much it means to me as his mom. More than I can put into words actually. In a sense I am trusting other people to show him a world outside of autism. In a way that makes me jealous and sad. What I wouldn’t give to see his smiles firsthand as he experiences something new. If I think about all the things I’ve missed out on I get too sad. So, I don’t. I focus on the positive. I focus on how amazing you are making his life.

Did you know that he associates you with fun and happiness and me with autism? It’s funny how that happened. Even at four he knows I care for Cooper and if I am there it typically means his brother is too. And that changes everything. That stings a little bit.

And I would be lying if I didn’t admit the animosity I feel at times. Our life is so different. I gave up my life willingly for my first borns disability. As any parent should. I jumped in with determination and devotion to Cooper. What I didn’t know is at times it feels like I am forced to choose. I am either caring for Cooper or living life with Sawyer. No one prepares you for that.

But this letter isn’t actually about the little boy with autism. It’s about the family with autism. That’s the part I didn’t know before I had a boy on the spectrum. The whole family has the disability. No decision is made without factoring it in. It dictates what we do and when we do it and where we go and how long we stay. As much as we try to maintain some sense of normalcy it bleeds in. Trust me. I know. My son’s dad and I tried. Oh, my God did we try.

Maintaining Normal

For years we tried to keep a normal life outside the chaos of Autism. At first for us and our sanity as adults. And then when Sawyer came along we did it more for him. When the boys were younger we truly believed that we could still go on outings and be part of the world. Cooper could sit safely strapped into a stroller on his iPad while Sawyer took part in an activity at a zoo or built a sand castle at the beach.

We were wrong though. He would scream no matter what we did. If there was sand he would throw it. If there was a line he’d push and fall to the ground. He refused to sit or ride or walk. He pushed and hit. He ran. He yelled. He melted down. No matter what we did we could not regulate him. It almost seemed like it happened overnight too. Age three was a tough year.

As Cooper aged the severity of his autism started to show even more. You can hide a tantrum in a two year old. You can’t in a seven year old. Every outing ending in tears, sweating and fighting. The stress of an autism meltdown is hard…add in a family and a confused, angry sibling, and it quickly turns into an explosion.

Feeling the Isolation

So, we started separating during outings. Jamie would take Sawyer and I would follow Cooper as he cased the perimeter. That worked for a while. But it started to feel like one parent was always feeling the isolation of autism…even out in the world.

Then, one of us started staying home with Cooper. The other parent would go with Sawyer. That was even harder on morale. It always felt our family was divided. Talk about isolation and animosity. Every six months or so we’d try another outing…which would fail. They all ended terribly.

Then the guilt started to build. Sawyer started saying things like…’I don’t want my brother to go. He wrecks everything.’

For years I thought we failed. I truly did. Every outing was a failure.

We failed to leave our house.

We failed to give our other son a sense of normal.

We failed to accept the chaos of autism and find our balance.

But mostly, I secretly felt like I failed at being okay with the isolation.

I failed at being devoted to autism. I missed my other son. I missed life.

Finding the Balance

I was wrong though. So, unbelievably wrong.

Our family didn’t fail. We survived. We never gave up fighting for our normal.

This is why I am thanking you. Your kindness and love is allowing us to find balance. After almost seven years I’ve learned to admit that our life is largely controlled by autism. That is a huge part of the journey of a special needs parents. But the even bigger part is finding balance. Because if you don’t…the isolation and guilt will eat you up.

One last time, I simply want to thank you for loving my son. I want to thank you for doing all the things with him that I can’t. And I want you to know that I will never be able to truly thank you for being in his life. His other life. The one I’m not really a part of. The one I need him to have. The life without autism.

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  • Heather Sanchez

    September 4, 2017 at 11:21 am
    Reply

    Beautifully written! My current feelings & emotions right now. Even though our other children are older, I still feel the isolation due to the fact […] Read MoreBeautifully written! My current feelings & emotions right now. Even though our other children are older, I still feel the isolation due to the fact I know what will happen, I know what'll come next! I feel the animosity because I'm the one having to do ABA Therapy sessions everyday, OT, & work FT... My husband is a wonderful father but it's always me! Keep up the awesome work! Love ur posts! Love ur videos! They keep me positive! 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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