A Constant Sense of Urgency

I felt a sense of urgency the second I realized that something was different with my son. An urgency to help him. An urgency to do everything at once. An urgency to ramp up, take autism head on, knowing in my heart that the more we did, the better the outcome would be.

I remember the day our Pediatrician did a referral for the Help Me Grow service to come to our home to evaluate Cooper. Their job was to see if he had delays. I called them immediately. I wanted them in my home as fast I could get them there. I thought, this is urgent. My son needs help. Let’s do it right now. If we do this now, he will be fine later.

I remember adding in Speech. And then Occupational Therapy. Then an autism diagnosis. Soon we had social skills, music therapy, feeding therapy. Throw in a gluten free diet and so on. Before I knew it I was living in waiting rooms. My only phone calls and emails were to people that worked with Cooper.

I got to the point where I couldn’t keep up. I missed my life. I missed being home with Cooper. I missed enjoying being his mom.

Want to know what’s funny? I am a project manager by trade. I can handle multiple huge scale projects with huge budgets and multiple people and moving parts. No problem. I can handle it all.

But with my kid it is different.

Some days all logic goes out the window. When he was younger, I felt the need to do as much as possible at one time. Whether it be therapy, speech, OT, feeding, whatever. Something deep inside me would say, ramp up! Do more! Maybe this ‘one thing’ will be the magic pill. Or the magic trick.

And maybe on some level that was right. We all know it is proven that early intervention is key.

But what I lost sight of was that cooper was just a little boy. He could only do so much. Our family could only do so much.

And then, around age three, I snapped. I reached a point where I couldn’t do it anymore. I didn’t recognize myself anymore.

I was working, running to therapy appointments. watching my son struggle, crying, secretly wondering if I had the only kid therapy didn’t work for, hating myself, hating my husband, missing my friends, missing myself and so on.

One day I said no more. What we were doing wasn’t working. Actually, it felt like it was doing more damage to Cooper and our family.

So, I stopped it all. I think Jamie thought I was crazy. I picked up the phone and canceled every appointment. I told them I didn’t know if we’d be back either.

One woman said…’You are making a big mistake.’ I remember being so scared.

My gut told me we were doing the wrong services. The urgency I felt wasn’t actually warranted. Cooper was a kid and needed to be a kid. And I need to be his mom. Taking some time off wasn’t going to be the determining factor in him speaking or not. Or being able to sit at a table.

We took one month off from services that summer. We went to parks and beaches. We sat in our backyard. It was unbelievable. And then, I did my research, and found services that were better for Cooper. I felt smarter. I didn’t feel as rushed. I felt like I could be choosier.

I’ve stopped services and ultimately the chaos twice in Cooper’s seven years. Both times the decision felt monumental. But they were the right decisions at the time.

I’m writing this because it’s happening again. I’m feeling the urgency. I’m feeling the intense pressure to do more. I get glimpses of Cooper living a more typical life and I feel like if I just do more we can get there.

So, I stretch myself thinner than I ever thought possible. I am chasing a healthy kid. I am working on his ears and other health issues. I am working on speech, sitting, walking. interacting, engaging, eating dinner with our family and engaging with his brother.

We are working on taking away the Kindle so he isn’t so dependent on technology. And learning to wear headphones when he is engaged with a Kindle  We are working on behaviors like bed stripping, lining up objects, destroying and hoarding pictures, and tearing apart bathrooms.

I’m also working on the emotional side. Don’t ever forget the emotional side. This is the part the depletes you and is often overlooked.

I dreamt that my son spoke to me last night. God, that is soul crushing. He and I were sitting side by side laughing. And he looked at me and asked me about my favorite train.

I heard his voice. He was sitting. We shared a moment.

When I woke up I felt like crying. I was flooded with grief. It’s so hard.

But, I have to cut myself some slack. I’m doing every single thing I can to give my son his best chance. And one more speech therapy appointment or one more phone call isn’t going to change that.

I get so caught up in the urgency and needs of autism that I sometimes forget that I am his mom first. I am not REALLY his therapist. I am not REALLY his doctor. I need to be a mom first.

My son is getting older. And I want you to know that even at age 7, not a day goes by when I don’t wonder how we got here. How did this happen? How can this be my life?

There are days where I will watch him flap and hum and line up objects and bounce and I’ll wonder why.

Last night, I felt the urgency overtaking me. I’d spent the whole day arguing with Midwest Immunology, making appointments and researching Pandas. It was Valentines Day and I was exhausted.

I had my limit. I was snapping at my partner. I was annoyed with Sawyer asking me to play. My conversations were all about the stress I was feeling.

I saw the insanity. I saw the urgency I was exhibiting. Yes, medical stuff warrants urgency. That won’t stop. But I get so manic about doing everything at once. And I am human. I have a job, two kids, a life, a home, etc. I can only do so much.

In all this urgency I forgot that two amazing things happened last Sunday. Two monumental, huge things.

Two things that make me so proud of my son.

Last Sunday, I took Cooper’s Kindle away and sat with him on the floor and did puzzles. He was silly and goofy of course but eventually settled down. I asked him to spell cat. He did. I asked him to spell dog, He did. And then mom and Cooper. He spelled both. Yes, it took him a few minutes of rolling in between letters. But who cares. My kid can spell words. I had no idea.

And then later than night, I asked him to say shoe. I modeled and helped and plain as day he said shoe. Even Jamie heard it.

I was floored. It was the first word he’s ever said…even prompted. Here is a video of him saying it this morning. Try not to smile.

I’m trying to teach Cooper to say shoe. It’s the closest word he’s ever had. He can make the ‘shh’ sometimes. He can always make the ‘oooh.’ Pairing them together is hard. We are trying. And he’s sure a cutie. #autism #speechtherapy #speechtherapylife #apraxia #severeautism #nonverbal #ineedsomehappy

A post shared by Kate (@findingcoopersvoice) on Feb 15, 2018 at 5:37am PST

I had someone say to me this week…’Do what works for your family.’ I thought that was so simple yet so complicated. As Cooper’s parents we have to find some balance. We need that for Sawyer too. And that means we can’t do everything at once. We need to work on small chunks at a time.

That’s my plan. Do what works for our family. And my advice to you, don’t let the sense of urgency overtake you. You can take a day off from therapy. Or even a week. You can take time to think about your decisions. You can even make the wrong decisions. It’s okay. You will eventually get to the right places and the right spot. You got this.

Interested in writing for Finding Cooper’s Voice? LEARN MORE

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.