What if you Didn’t Need Me Anymore?

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My son,

So many changes are happening at our house right now. Your brother is starting kindergarten in three days. You are getting a new brother in five weeks. We are still settling into our new house.

And yet, with you and I, nothing has changed. We are still inseparable. I am still your person.

I’ve spent time today thinking about my role as your mama. And your brothers.

Sawyer is five going on fifteen. He is social. He has so many friends. Many whom ring our doorbell daily.

I hear it all day long.

Every time the bell rings, the dogs bark, Jamie and I curse it for being so loud and you…you squeal. You get so excited.

You run to the door. You typically beat Sawyer. You wave to the kids. Sometimes five or six asking for your brother.

‘Can Sawyer play?’

Sawyer will rush past you yelling ‘bye mom.’

And you shut the door behind them. It never crosses your mind to go with them.

From morning until night this goes on. Kids in and out. They play tag, collect rocks and ride their bikes.

If Sawyer isn’t with his friends, he is at T-ball, or a play date, or playing Legos. He is growing up before my eyes. Of course he still needs me. And we snuggle every single night. But he truly is growing up. Faster than I ever thought he would.

I sometimes joke that my empty nest happened too soon. Or maybe I was just so oblivious to when little people develop lives of their own because you are on your own path kid.

I’ve noticed lately that it’s just you and me and your dad.

The three of us are always together. You are always listening. Always near us. I joke that we are the three musketeers.

If Dad and I are on the couch, you are on the floor next to us.

Yet, I am your favorite.

I am never out of your sight. Not ever.

I joke that I am going slightly insane from the sound of your Kindle. My life is narrated by Barney and Thomas.

If I’m in the office, you are in the office.

If I go upstairs, you follow behind.

I have never been in a room with out you. Not for more than a second. You always wander in after. Sometimes you will wave as if saying, ‘there you are.’ Sometimes you just appear to be completely oblivious. Either way. We are always together.

I think I am your comfort item. I understand you. I know every sound. Every flap. Every smile.

You show me something every 30 seconds. You giggle with delight. You communicate with me in your own way.

I see a side of you that the rest of the world doesn’t.

I am your person.

As a mom to a child with severe autism, I’ve had to let myself say goodbye to the typical milestones. Especially around independece. We’ve had to talk and prepare about the future in an entirely different way.

In a sense, my life has revolved around you Cooper. From day one.

I have accepted that it will be this way for the rest of our lives. When Dad and I think about retirement, you are with us kid. We bought a house that will allow us to provide you the best care long after you are 18.

We are ready. We’ve taken the emotional journey of acceptance.

But lately, a feeling has been creeping up around my edges.

What if you suddenly change. Or improve.

What if one day, we wake up, and you start communicating and seeing the world around you? What if all the therapy starts to work? Or the Medical Cannabis? Or the long hours we put in every single night teaching you to be part of the world?

And it all pays off. What if what we prayed for comes true?

What if you suddenly develop a hobby? Or make a friend? What if you want to go outside and play with the kids? Or decide that you want to spend time in your room? Or go to grandma’s house? Or leave the house in general?

What if you learn to ride a bike and I watch you pedal off like I watch your brother a dozen times a day?

What if I am no longer your person? What if seeing me isn’t the best part of your day? What if your favorite person becomes a friend or a girlfriend?

What if your most common used phrase on your speech device is no longer, ‘I want mom?’

What if you start telling me you want to join a team? Or a club?

What if there comes a day where we are no longer together? The constant sameness of the day before.

Honestly kid, I don’t know what I would do.

I think I would be lost.

We’ve been inseparable for seven years kid. And I’ve accepted that it’s going to be that way for the rest of your life.

I wonder if I’m as dependent on you as you are on me?

I spend my days teaching you independence. I pray the words daily too. ‘Please God, let him be okay.’ Because if you were, then I wouldn’t spend nights worrying about your life after I am gone.

But in all that, through it all, I’ve never stopped to think there may come a day when you don’t need me anymore.

Which would be the absolute best day of my life. And the hardest.

I love you so much kid. You will always be my person. My shadow. My life.

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Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

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2 Comments

  1. Julia on September 3, 2018 at 6:28 pm

    Your son is beautiful. He reminds me of my 6-year-old, Jack, who had moderate-to-severe autism until this past year. (I think I may have done the crazy autism mom thing and PM’ed you via your FB page when I first saw one of your videos about the switch… what you’d hope for your child’s future vs. the reality.)

    We had tried everything (every kind of therapy, supplements, CBD oil, etc.) and nothing made a measurable difference for us, until we tried three (cheap!) supplements that you can buy anywhere: fish oil, olive oil, and a prebiotic called inulin (INSTEAD of probiotics). If you’ve heard of the Nemechek protocol, that’s all that is.

    These three little supplements have changed our lives. My son did have some speech at age 5, but it was very simple one- or two-word phrases. “Mik” (milk). “Go bafroom.” The Nemechek protocol gave him speech… made him start noticing and interacting with people aside from me… calmed his rages (unlike your son, mine was NOT happy even at home — he was in a constant state of raging/screaming/melting down). I never thought this would be possible, but he is not only fully verbal, but CONVERSATIONAL now. He chats about what other people are feeling and what he wants to be when he grows up and why he’d rather go under the ocean than go into outer space. “NORMAL” kid things!!

    Your video came up in my feed again and I had to reach out to you… I know ABA is working well for Cooper (we’ve never been able to afford ABA and our insurance doesn’t cover it), but three ridiculously simple supplements will make all his therapy so much more effective… in fact I keep saying it’s turning every-day experiences into therapy for my son. Please, please consider Googling “Nemechek protocol and autism” and see what you think. And either way — blessings to you and your sweet family!!



  2. Julia on September 3, 2018 at 6:40 pm

    Oh!! I’m so excited to read you’re already using the fish oil that’s working for my son (NN Ultimate Omega)… and the other supplements you’re doing are fantastic, EXCEPT I would consider trying this for three months: Drop the probiotics and Benefiber. Instead of those, give Cooper NOW organic inulin powder (it’s one of the few supplements my son won’t notice when it’s mixed into his yogurt — 1/2 tsp./day made ALL the difference for him). This is something like $5 through Amazon and will last several months!!

    We’d been using probiotics since Jack was a toddler… three DAYS of inulin instead made a more dramatic difference than 4+ years of probiotics. There is science behind why probiotics can actually do more harm than good for our autistic kiddos. Please try it. If not three months, even just a week and see!

    And then if you can, mix in a smidge of olive oil into his yogurt or any other food. Make sure it’s genuine olive oil (a lot of it in the U.S. is cut with soy oil). We use California Olive Ranch because I can buy it at my grocery store.