Living in the Present as an Autism Mom

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“Is he going to be like this forever?”

My seven-year-old niece was quiet and hesitant with her inquiry.

Her mom and dad have talked to her about my son’s autism and I was thrilled when they told me that she had some questions for me.

I love spreading autism awareness. I especially love talking about my sweet boy and all of the unique, wonderful and challenging pieces that come together to make him so very special.

I could barely contain my excitement that someone so young was taking an interest in learning more about autism. I said, “Ask me anything!”

“Is he going to be like this forever?”

I wasn’t expecting that. I was certain she was going to ask why he doesn’t talk much, or listen to her, or why he lines up his toys over and over again.

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I started rambling on and on about how he will always have challenges and possibly be delayed for his age, but he won’t stay like this. I’m quite sure I lost her.

I do know that I avoided saying, “Yes.”

I often write and talk about how important it is to stay in the present when raising a child with autism. I don’t allow myself to think too far ahead when envisioning my son’s future. There is so much fear and worry about the unknown, the stress over it can send me down a spiral to nowhere. I try really, really hard to avoid this. But once a week or so, I have a meeting or conversation that forces me to think of my boy’s future.

The other day we were in a session with our OT, who I adore, she has been such an integral part of my son’s progress, treatment plans and my overall understanding of autism and what he is experiencing. We were talking about cognitive testing and upcoming IEP meetings and preparing him for kindergarten.

Kindergarten. I seriously say that word like I am allergic to it. I have so much anxiety about him entering kindergarten but that is a whole different spiral that I will save for another day. She mentioned something along the lines of “if he graduates high school.”

IF.

I had absolutely never put it in my mind that there was a possibility he would not graduate. I mean, look, I can’t bring myself to think as far ahead as kindergarten next year!

That thought stayed with me the rest of the day. These are the kinds of conversations that trigger that pesky spiral to nowhere. I shouldn’t have to be thinking about IF my son will graduate from high school. He is five years old.

I should be dreaming about him graduating and going on to be an engineer, a firefighter, a professional climber, whatever he wants to be. He can be whatever he wants to be. God, help him be something. He’ll be something. Let’s see, his interests are keys, eggs, pirates, and trains… and music! He could be a musician. No, some sounds literally hurt him. That won’t work. How will he even get to work if he isn’t ever able to drive a car. I can drive him. He’ll probably be living with us anyway. Maybe he could take a bus? No. No bus. I just can’t get old, or unhealthy or busy so I can take care of him. No one else can take care of him like we can. God, please make sure I stay healthy for my boy. I need to be here.

I share these thoughts with hesitation. I know some people would call this a pity-party or complaining. Call it whatever you want. I still want you to know what it looks like, and how quickly it happens. I know some of you know what it feels like, too. The fear, worry and anxiety that some parents face. The push-pull of telling yourself it’s ok and it really not feeling ok.

I kept the excerpt short, because I will not allow myself to stay in that rabbit hole for long.

Negative thoughts are exhausting and they take their toll. That’s why it’s so important to stay right here, right now and continue to grow.

I know my boy is going to do amazing things. He already has.

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4 thoughts on “Living in the Present as an Autism Mom

  1. Oh, this post left me in tears. As the mom of a 30-year old autistic son, it took me back to those scary, sad unknowns. We love having Jimmy living with us, and we have surrounded him with the things that bring him joy. Is it the life I anticipated for him? No. But, is it his – and he still surprises us with continual growth and independence. You will find the families who embrace his personality … those are many of our closest friends today. If you ever need a break, I’d be happy to spend a day with Wilson!

    Liked by 1 person

    • I love this so much!! ❤️ Thank you! I can’t wait to see what’s in store for this special guy- one day at a time. A very happy birthday to you and Jimmy! My mom told me about the fun trip ahead! 🎉
      You are so so sweet- thank you again!

      Like

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