5 Things I Wish I Could Tell Me 4 Years Ago:

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1. It wasn’t you.

It wasn’t that you were too busy as a mom now trying to juggle two kids instead of one and you just didn’t give your second child the same amount of attention as your first. It wasn’t because of that one time that he hit his head. It wasn’t any decision you made or didn’t make for him. You were just being a mom the best way you knew how. This wasn’t about you. This was just going to be. Let go of the why. 

2. Autism doesn’t care what you do for a living.

During those early days when I questioned why my baby’s language wasn’t blossoming or why his babbling continued past the age it should or why he wouldn’t always respond when we called his name, my career of being a speech-language pathologist really got in the way.

First of all, I thought that this couldn’t happen to someone who got language stimulation 24/7 within his home! Even if it *was* autism or a language delay, I thought I would be able to provide what he needed to overcome that in no time at all!

Little did I know, what would later become moderate to severe autism doesn’t work that way. Also, my heart didn’t care what I did for a living. It doesn’t care how you spend your days or how you earn a paycheck. Your heart as a mom can only see your shattered future, your baby struggling, your dreams as a parent and for that child dashed and altered. You cannot emotionally look at your child and provide them with therapy the same way you would able to do for your students or clients.

Your attentional resources that are normally planning activities, gauging their motivation, planning your next move… are overcome with flooded emotions. “Why is this so hard for him? What did I do? If he isn’t able to understand this, what will this mean for his life? Will we still be doing this at 20 years old? Will you make progress? What if you don’t? I can’t do this. It’s too hard on my heart.” These are not things I think about when I’m working with a student of mine regardless of the love I have for them.

When it’s your own child, your OWN future, your heart will always be intertwined in everything you do and can sometimes get in the way of all the logistics of data tracking, goal making, and making those on the fly decisions about treatment.

If you are a teacher, SLP, OT, PT, advocate, you need to cut yourself a break and get yourself a team to help you when your emotions prevent you from looking at things the way they need to be looked at sometimes. Don’t get me wrong, having knowledge of language stimulation techniques and background in the therapy world IS helpful and does make me feel more comfortable with a lot of what I do naturally with Wyatt every day in my interactions with him.

However, when I assembled a team to help my son and allowed myself to just be MOM, I felt so relieved and it took so much pressure off myself when I was drowning in it. Parents, don’t ever feel like you could do better for your son or daughter if you were a therapist. Those emotions mixed in make even therapists in the same boat as you when it’s your own child. It is hard no matter what you do and we are one in the same. 

3. Take advantage of your time with your little one as you can’t get it back.

There is SO much worry about the future (and there always will be to some degree), but don’t let that worry prevent you from soaking up those toddler years. They may look different and the parts that are missing from it may make you sad. The meltdowns and the uncertainty and the pain will be hard on both of you and the whole family.

However, you won’t get a redo. Make the best of the good times and the windows you have. Even if you aren’t where you would like to be, when that kiddo looks up at you, they don’t see the missed opportunities. They aren’t thinking about what they’re missing out on. They see their whole world in you. They see that they have everything they need because of you.

Make the memories anyhow. You can’t go back and live any of those years again and you will miss that little boy or girl and you will be thankful that you lived life anyway! 

4. There will come a time when you truly don’t care that others are doing things differently, that people close to you have left, that a whole bunch of people may disagree with decisions you’ve made.

You will learn to roll with the stares, even smile at them! You will learn to live your own life and compare it to no one else’s. You will laugh, you will dance, you will feel like you’ve been given a ticket to a special world where anything goes!

You will marvel in the unique being of your child and feel lucky to witness and be a part of it. You will realize that normal is boring and different is cool. 

5. Life won’t be rainbows.

You will still feel bitter at times when you’re seemingly surrounded by families that don’t have to jump through hoops and work so hard to do basic things like go to a movie, get their teeth cleaned, get haircuts.

You won’t fit in at the neighborhood cookouts and attending your kids events at school as a family sometimes just won’t happen. You’ll miss out on family pizza night at the school and have to try and explain why to your other kids who will be disappointed and confused.

You will feel uncomfortable when strangers try to make conversation with your child and wonder how you’ll explain what you need to respectfully in a 30 second exchange. You’ll cry on your laundry room floor because you can’t take another accident on your couch for the 30th time this month and wonder if the hard will go on forever.

You will feel so alone in this big old world. Your son will also put bacon in the microwave for 20 minutes until it almost starts a fire and say “It’s READY” when you come running down the stairs frantic about what that burning smell is. You will laugh!! You will laugh so much. 

This is your beautiful life to live and you will take your grandpa’s advice to heart every day to make the best of it. He was so smart that man.

You will find your people, you will find your new “normal”, and you will find your happy and your purpose. No matter what path you choose, you will do so in love and your child will see that love in your eyes and that you would do anything for them. That’s always going to be what matters most. 

Go easy on yourself and hang on for the ride! It is a roller coaster like no other with extreme ups and downs, but at the end of it I think you’ll look back and want to do it all over again.

Written by, Deidre Lueneburg

Deidre is a mother of three sweet boys and a speech-language pathologist by trade, but is currently a stay at home mom trying to figure out her next move once those babies are all in school this fall. She lives in Wisconsin with her husband Matt of 18 years and together they have weathered some storms but have kept each other laughing and somewhat sane. Their middle son Wyatt was diagnosed with autism just before he turned four years old. Their family loves Disney trips, movie nights, camping, and being anywhere outdoors with their loud, amazing, adventurous, loving boys. 

You can follow Deidra on Facebook at Making the Best of It – Wyatt’s Way.

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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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