Measuring Success a Little Differently Than Most

A few days ago, Cooper had an event at his therapy center. This was the first event he has ever had. While many of you parents may have had different outcomes, Cooper was never included in any programs when he was in public education. Looking back I am pretty sad about it. But that’s a story for another day.

Anyhow, today, he attends a full-time autism program. We made the decision to pull him from public education during his kindergarten year when it started to feel like he was being babysat rather than learning. It was the toughest decision we have made to date about our son’s care. The decision proved to be the most monumental and also have the most positive impact.

If he was in school he would be in first grade. It’s hard to say goodbye to the typical path.

He has been attending his center for nearly a year now. Since he has started there he has made huge improvements. He sits. He tries. He communicates. He puts on his shoes and drinks from a cup. It’s been life changing. And honestly, given us so much hope for the future.

The long term goal with Cooper’s program is to get him back into an education based program. Cooper’s center offers that. They have a school specifically for autistic children. But, the key is, the children have to be able to sit and learn. Our son is not there yet. I say yet because I truly believe it will happen. So do many others on his team.

The event we attended, a Beard-a-Thon fundraiser, was at the high school. A high school just for autistic children. I say that again because when Cooper was 3 and 4, and I knew in my gut that public education wasn’t going to work, I researched like crazy for an option like this. I couldn’t find one.

I am so thankful these options. Trust me when I say I know that they aren’t available to everyone.

Jamie, Cooper and I arrived right before the event started. We were a bit nervous and honestly set our expectations super low. Cooper really struggles in public settings. He gets anxious and runs a lot. So, mom and dad were just hoping we didn’t have to leave early.

Thankfully, his ABA Lead Therapist was attending with us.

At the event, Cooper was expected to sit with the rest of the contestants in a large gym and wait for his name to be called. We knew this would be nearly impossible for him. We went anyways.

We also knew he was ‘expected’ to wear an itchy beard that I made and walk to the front of the gym when his name was called. We knew this would also be nearly impossible for him. We didn’t care though. We were just so excited that our son was included.

The event was planned to last an hour. About 55 minutes too long for Cooper. We knew that. But that’s okay.

I want to start by saying Cooper did so great. He made it through the whole hour. Yes, he ran, darted, rolled, and dropped to the ground.  And yes, he walked to the front after his name was called while ripping his beard off, throwing it and dropping to the floor. And we didn’t care. We just helped him along. We are Cooper’s team. We are here to encourage him, challenge him and support him, all while keeping his safe.

I am so proud of him!

If someone outside our autism world was watching they would have probably been shocked by his behavior. And by our behavior. But they also have no idea how hard we’ve worked to get where we are at.

They would probably have thought the event was a disaster. And not successful in anyway.

Before I had an autistic son I thought about success differently too. If I was at the event that Cooper was at I would have watched and been in shock. I would have tried not to stare. I would have found it hard to look away. I would have seen a little boy completely out of control. A little boy who refused to sit with the other children. I would have saw the parents walking a distance behind. Not chasing unless it was absolutely necessary. I would have been so confused. I would have thought, ‘why don’t they just take him out?’ ‘Why are they letting him act that way?’

To anyone outside our world, they would have probably been so confused.

As his parents, we didn’t see it that way. We were ecstatic. He did amazing. But we also measure success a little differently.

Let me break it down for you.

Cooper stayed in the gym. At certain times he sat near us. He laid by us. Yes, he ran. Yes, he dropped to the floor. Yes, he rolled. So what. This was a drastic improvement from a year ago. Cooper watched our phones. He responded to a timer and to our encouragement. He resounded to ‘first’ ‘then.’ And gave us a strong ‘no’ when we asked if he wanted to leave.

We didn’t chase him unless it was absolutely necessary. Instead, we asked him to stop. And 9 times out of 10 he did. He listened. THIS IS HUGE. He has been working on a stop/safety goal for years.

He smiled. He laughed. He clapped. He cheered. He engaged with people around him. But most importantly of all, he enjoyed himself. And so did Jamie and I. We were out somewhere with our son.

He was so unbelievably happy to be there. I am so proud of my boy.

As I sat there looking around at a room full of autistic teenagers, I noticed one thing. All the kids were sitting. They were participating. At one point I looked at my son running around the gym and back to the older children. And instead of getting sad, I saw hope. I saw so much hope. I saw the future and what trusting in therapy can bring.

This is different than I would’ve felt a year ago. I would’ve wondered why my child was struggling the most. I would have been sad. Not this year.

Sometimes moms measure their own success differently too. My kid went to an event. That is a victory in our world. And I am thrilled.

I can’t wait to see what the next year will bring.

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.

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Comments

  • Kim

    May 9, 2018 at 9:26 am
    Reply

    I love to read your updates. I have known people with autistic children and I know it's a full time job. I admire you for […] Read MoreI love to read your updates. I have known people with autistic children and I know it's a full time job. I admire you for your willingness to raise your son and fight for his right to be happy. You are a true hero. Read Less

  • Fred Nicholson

    May 9, 2018 at 9:34 am
    Reply

    Great beard! Great kid! Congratulations on your wonderful way of viewing events. Wishing Cooper the best.

  • Fiona

    June 9, 2018 at 4:02 pm
    Reply

    Hi Kate! Love your blog❤️ My Jackson is going to be 22 in October and was diagnosed at 20 months at Frazer ctr in MN. […] Read MoreHi Kate! Love your blog❤️ My Jackson is going to be 22 in October and was diagnosed at 20 months at Frazer ctr in MN. We now live in PA and I have watched Jax and his classmates grow since kindergarten. Back when they were Coopers age... very few of them could sit through what you are describing. Now they all do and I never would have believed it! Now restaurants and festivals and family meals are all possible. You have every reason to feel the same😍 love to your Family xo. Fiona 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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