autism

Autism Parents: It’s Okay.

I wanted to say publicly the things I’ve said to so many parents I’ve encountered along the way: It’s okay.

It’s okay to be upset when your child is diagnosed with autism. It’s okay for it to take a while for you to adjust your entire world to a new normal. It’s okay to be sad. To be frustrated. To scream into pillows and cry yourself to sleep at night. It’s okay. It doesn’t mean you love your child any less. It doesn’t mean you don’t want them if you don’t want their autism. What good parent wants their child to have a disability? What good parent doesn’t feel pain at the sight of their child struggling? Having a tough time with the diagnosis shows how much you love them. It’s not because you don’t accept them. Don’t ever, ever, let anyone tell you differently.

autism parents it's okay
Me holding Casey, both exhausted after a rage that lasted several hours.

You will go through the motions. You will seek desperately for a cure. You will despair when you realize that there is no cure. You will get through that. You will move on to a place of understanding. It’s okay to get your child carefully chosen therapy and programs that will benefit them. It doesn’t mean you are trying to change who they are or stamp out their autism. It means that you want to give your child every opportunity to manage their disability and to thrive in this world. What parent, of neuro-typical children or other, doesn’t want their child to be given every chance to succeed? Does my getting Abby, my daughter with Down syndrome, therapy and extra help at school mean that I don’t accept her Down syndrome? No, it just means that I want her to be the best Abby she can be. It’s the same for my two children without disabilities. I want them to grow and learn to the best they can. Doesn’t mean I don’t accept that their best might not be the same as others.

Acceptance doesn’t mean you don’t have the right to be tired. To be frustrated. To be sad. Acceptance doesn’t come all at once and you will find it’s more of a tight rope than a way of life. It’s been 8 years since Casey was diagnosed. It took me years to get to a place where I was okay with him having autism. I still hurt when he hurts, it still kills me when he’s sad that people don’t invite him to parties or exclude him from games because he doesn’t understand social norms, or because he freaks out when things get to be too much. It doesn’t mean that I don’t ache to take the pain away he feels when his world isn’t the way he wants it to be. I am his mom first. Having empathy for my pain is not the same as sorrow or not accepting him for who he is. It means I love my child fiercely and I hate when he suffers because of his autism.

Autism is a disability. It’s not wrong to say that. It’s not ableist to want your child to be the best that they can be. It’s parenting.

Stay away from people who tell you that it’s not okay to feel anything you are feeling as you work to get through the day. It’s okay to not be okay all of the time. Some pain demands to be felt in order to deal with it and move on. It’s not wrong to seek help when you find that you cannot manage the pain on your own. Find friends that understand. Go to parent meetings in the school district or seek them out through your Early Intervention program. They’re out there. Above all, be honest. With yourself and with others around you. Accept help when people offer. Take any break you can get.

You will find in quiet moments the good in autism. Even if they are fleeting. Even if it’s harder than you had ever thought it would be. You will one day stop seeing the autism as separate from your child but a piece of what makes them who they are. You won’t even realize that it’s been happening for a while. And you will see that you wouldn’t change who they are for anything. You will find joy in their joy, whatever looks like. It doesn’t mean it will be easy. It means it’s okay.

7 thoughts on “Autism Parents: It’s Okay.

  1. Why do I read your blog?.I don’t have children with autism or any label. Your insight can be applied to many diverse parenting situation. Keep sharing, keep posting, I will be listening.

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  2. OMG, this is spot on. Thank you, thank you, thank you. I get so annoyed when other people (who may or may not have autism or even children on the spectrum) tell me how I should feel. Excuse me? When did you become the emotion police? Hugs, Lexi!!!

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  3. Thank you for that today of all days. My son is not autistic but has been diagnosed with debilitating crohns disease. I ache for him and the pain he feels. You saying sometimes we need to feel the pain to move on helps me think I’m okay. Thank you for your understanding of ddisabilities. I’m new with all this. I’ll get there

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  4. I’ve been watching your blog for a little while and this post, actually the picture, just hit me. My son’s rages have driven us through many trials, every time with big hopes. It’s a nice connection to “meet” others with similar lives. We just keep on keepin’ on!

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  5. Just found you through Facebook. This speaks so very, very well to what so many of us feel. It took me six years to get to the place of being okay when things were not okay. To accept my son for who he is, the way he was created to be. We have sought out therapies in order to help him thrive and learn to live as best he can. Autism is not going to go away. It’s not going to magically disappear in the morning. Autism makes life hard. It makes it hard for my son, for his two brothers, for my husband and I, for our extended family, in school, in church, in public, etc. But we’re okay. Sometimes we’re not okay, but even when we’re not, we are. 🙂 God bless!

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