Wednesday, February 18, 2015

Five Things About Autism I Wish Someone Had Told Me

Most of my grown up life already didn't look anything like I expected it to. And then along came autism and really flipped our world upside down. I heard so many different perspectives on autism from different professionals and parents: This is going to be so hard on your marriage. You are the only person who will advocate for your child. The world is full of judgement- people stare and comment on your parenting skills. Over and over I heard these exact same statements, so I accepted them as truth.

I was scared and depressed about how bleak the rest of our life clearly was going to be. I was frightened my sons would never know happiness. Scared my marriage would crumble from the stress. Scared of everything really. 

But now that our own life has unfolded, I realize that many of these truths do not have to apply to us, and the ones that do- that is not where we put our focus. Life is hard, yes-  but it is also too good and too short to miss out on all the blessings it holds. Here are five good things that people don't tell you about raising a child with autism.


You will realize just how good people can be. Our life is a journey and we have met so many wonderful people along the way. Caring, kind, patient people with extra love to give. Those who have been affected by autism and those who haven't but are willing to learn more. I've met so many teachers with so much passion they inspire me to want to change the world. Behavior Therapists who have been hit and kicked and screamed at again and again- and they still show up for work the next day with a smile on their face. They've taught us skills that we carry out at home that in turn have made my sons lives so much easier and happier. They rejoice over milestones and advocate for services right along side us.

We've met so many kind people that want to help. 

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Greyson, Parker and Frank


Even our garbage man is now a personal friend — he would text me before he got to our street because he knows how much my boys love the trash truck. People are good.

If people do stare when my son is having a meltdown- I don't pay any attention. I am more concerned with helping my son in those moments. I don't focus on the people who just don't get it. They are not worth any sacrifice of our precious happy.


Failure doesn't mean not doing it right- it means not even trying. I can't tell you how many times I've sacrificed awesome in the quest for perfect. And then feeling like I failed because something didn't go exactly as planned. I berate myself for the tiniest mistakes and the smallest of flaws. Why did you say that? Why didn't you do that? One day it hit me—what kind of message is this sending my sons? They are not perfect, yet I love them exactly for who they are. I love them even more for their human-ness. They get up every day and do so much out of their comfort zone. They try and try and keep trying- even when they aren't able to get it right. That isn't failure- that is INSPIRING and amazing and incredible. They have taught me that perfection is over-rated and failure isn't a lack of perfection- it's a lack of trying. I now try to offer myself the same grace that I extend to my boys. I want the world to love and accept my sons, and to do that, I must practice by loving and accepting myself — exactly the way I am. Now whenever I'm in unfamiliar territory and I don't want to do something I think- You can do this. If Greyson and Parker can move through this uncomfortable feeling- than so can you.


Everyone is going through something. I try my hardest not to compare the 'somethings,' because it's a terrible waste of energy with no good outcome. What's that? Oh, my life is harder? Okay, I win  or uh- lose then actually. Comparison is a game with no winner. Here's the deal- life isn't balanced or fair, and the sooner you accept that- the sooner you can move forward and seek happiness. Hard circumstance in life can open you up and make you softer to the world and to people suffering. Autism has grown my heart ten million times bigger. Now, when someone else is going through something hard in life, I try to reach out to him or her, and not be afraid to mention the word, whether it's death or cancer, divorce or autism. I've found an empathy for mankind that never before existed to this degree. We are all in this human thing together. There are so many ways we can inspire, share and connect, regardless of circumstances. We must pave the paths for those that walk with us and after us. If you focus too much on what isn't, you miss all the what is — and oftentimes, what is...is amazing.

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Milestones feel like your own personal holiday. Like fireworks and Christmas and York Peppermint Patties and Disney Land and puppies and a million other good things rolled into one. They have the ability to make your whole day, week, month and sometimes year. YES- YEAR. I still SMILE when I think of the first time my son Greyson pooped on the potty or was first able to make a C sound and say "car". I realized early on that our family's milestones don't look like others, but that doesn't mean they aren't amazing. Sometimes I want to call them ten-milestones, because they arrive so infrequently. But because of that, every inch forward is celebrated in this house.  In fact, I might go so far as to say milestones are more amazing because they had to be fought for, earned and may have even taken forever.



Life doesn't have to be perfect to be amazing. This unexpected life also holds so much beauty. There is no parallel universe where everything is good and perfect and easy. When you visit that land of fiction in your imagination, it blocks you from being able to live and accept today. This is how your story goes, you have two choices, fight it or embrace it. I've done both, and fighting it takes too much energy. I'm going to screw up, I'm going to try things that don't work. I'm going to do 99 things to find the one thing that just might possibly be the home run. That's the path with autism, winding and weaving exactly how it is meant to be. My sons teach me to slow down. They help me notice so much beauty in the world. 



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They teach me the importance of hard work, taking breaks and never ever giving up. They make me believe that life can be amazing. Sometimes I still can't believe that God really gave them to me...I am so lucky.

When I meet new parents just starting out on their journey with autism, I tell them the good stuff. Because it exists. And I'm sure everyone else has already repeatedly told them the downsides, heartaches and difficulties. I just want to remind you that your life can still be amazing too. In life, happiness isn't a guarantee—but each one of us deserves to find it. 

15 comments:

  1. Chrissy, thank you for sharing your kind and generous heart with us all. xoxo

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  2. Thank you. Sometimes (ok, a lot) it is easy to get lost in the day to day/problems/nothing is going right. Thank you for reminding me there is so much more...I just need to look from a different angle.

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  3. I had to share this on Facebook-it was so beautifully written and every word of it is true. You're an inspiration!

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  4. Amazing! Thank you.

    -Colleen

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  5. Wow! Incredible writing as usual!!! I would agree 100% on all five of your discoveries. For my hubby and I, we've constantly thrilled with the realization with how many beautiful people there are in this world. The kind, loving, patient and wonderful folks that our son Brady has brought to us through his autism are the finest humans on earth! People who choose to work with special needs kiddos are the absolute BEST of mankind! In this brutiful journey, my family and I have also become kinder and more compassionate people. Yes Chrissy, every little milestone seems so HUGE and you just want to celebrate! Thanks for reminding me to stop playing the "comparison game" it's self destructive! I try so hard not to look at the neighbor boy who's the same age as my son and think "gosh, his young man could of been Brady's best friend if things were different or thinking about the team sports the neighbor boy enjoys....hard not to think about how much we wish Brady could do that BUT it's NEVER good to let you mind go in that direction! My son is beautiful, unique, sweet and his smile is the best in the entire world! Accepting ourselves and our children right where we/they are at is critical! We've worked really hard to be VERY happy despite the challenges we face and it's incredible how absolutely wonderful can be when you choose to be positive! Have a wonderful and blessed day with those gorgeous blue eyed boys of yours Chrissy! Carpe Diem! Stacy Bauer from Michigan

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  6. Awesome. I wish I could have read this right after my son's diagnosis!

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  7. As a retired speech-language pathologist you encourage me with every word you speak. I have shared your blog with my SLP friends who are still working and they thank me for connecting them with your blog. When I began reading your blog I promised to pray for you and your family every day. I am still doing that.....Cheryl

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  8. Such a beautiful post!

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  9. Inspirational.

    Rebloged on 61chris.sterry

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  10. As a mom of a special needs child, I can totally relate. Raising her helps me to see beauty in imperfections and allows me to experience the world from a more positive and hopeful perspective. She is now almost 10 and every year is a struggle, especially now that she's transitioning form mild to moderate/severe special needs program but I find solace in the fact that she belongs nowhere else but here- in my family, as my daughter. I hope you visit my blog sometime, I feel that we can relate!

    www.mommy-diary.com

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