Down syndrome · jenny mccarthy · musings

Is “Acceptance” a noun or a verb? {musings}

“What kind of boy is this? I don’t want to this. This…autism.”

Casey’s sitting in the bath. He’s just had a meltdown and he’s trying to make sense of the feelings he’s experienced.

What kind of boy is this? He’s talking about himself. He doesn’t want this.

I don’t want this.

Where do we go from here? I’ve written about acceptance, I believe in it, but I haven’t been living it. Acceptance doesn’t mean I don’t quit trying. Acceptance doesn’t mean I’m okay with his autism. It doesn’t mean that I’m happy about it. I know what it doesn’t have to mean.

But I truly don’t know what it means.

All I do know is that I have to learn to accept it. To embrace it. Or Casey won’t ever accept and embrace it fully himself. Or maybe he will. I don’t know. I just know that I don’t want to be another obstacle that Casey has in his life.

I’ve fought like crazy against the autism. I’ve hated it. I’ve cried. I’ve grieved. I’ve read. And read. And read. I’ve never thought we could cure it and I have scoffed at the notion- mostly because I have never wanted other mothers to feel the way I did- that if he’s not “cured” I’m not doing enough.

Now there’s this reason: Maybe he doesn’t need to be cured. Maybe all of the really great things Casey is he wouldn’t be without the autism. I’ve never so much as entertained that thought. Because I’ve wanted to be right. I’ve wanted to be pissed off at autism. I’ve wanted it to be only taking from him- not giving to him. It’s an easier war when the other side is completely to blame.

I need to see that his autism is not just hard. It’s not just loud. It’s not just sad. That it truly is a magical part of who Casey is. The other night Casey said, “I have blue eyes. And I have autism.” I wish I could see it just as another one of Casey’s features. I want him to see himself that way, too. I think he’s closer to being there than I am.

I just don’t know how to get there.  Acceptance. What if it’s not a place? Or a thing? What if acceptance is a verb? Something I actually have to do- and keep on doing. I’m not sure.

Do you feel like you’ve “accepted” your child’s diagnosis? What does that mean to you? What do you do when you get there? Is it a happier place? Is it a place at all?  How did you get there?

 I’m lost.

10 thoughts on “Is “Acceptance” a noun or a verb? {musings}

  1. Not able to answer your question here, but wanted to say that I saw the butterfly tent at the Natural History Museum on Wednesday and thought about Casey, remembered that truly *amazing* photo you posted of the butterfly on his face, and the absolute joy on his face…

  2. I accept my son for who he is. Autism and all. There are days when I don't like our struggles and how much I see him work on things but we all have our own issues, don't we? I've often thought "accepting" autism was similar to the Kubler-Ross stages of grief. You have to let go of what you thought your child was going to be and accept them for who they really are. And I'm by no means a saint either, there are days….. It took me a long time to realize this is just who he is and I can either love him for that or he'll never see me loving him for who he is. I don't think I'm expressing myself well here at all.

  3. The one thought that brought me to a positive place with my girls' diagnoses was this: I love these two people so much as they are, that I'm not sure removing autism from their equations would be an improvement. What if I didn't recognize them if we could magically take this thing from their lives?! Once that occurred to me, I stopped being sad about their autism. It hasn't stopped me from being frustrated sometimes, but it *has* stopped me from wishing for different circumstances. Now I can just focus on my girls as they are, and help them learn to be their best selves. I don't know if this is acceptance, but it my brand of peace.

  4. "All I do know is that I have to learn to accept it. To embrace it. Or Casey won't ever accept and embrace it fully himself." This part really hit close to home for me. That's kind of how I feel. And I agree with Lizbeth about the stages of grief, and ChaCha about how removing Autism wouldn't make me love my son anymore. And what your son said about having blue eyes and having Autism. That's how I describe it to young family members who don't understand. I also heard this other cool saying that Autism is like being a Mac. Most of the world is PC, but Macs are on the rise. It's true some days can be really hard, but it's also worth it when I see him, grow, develop and shine…

  5. I accept Casey. Him not having autism would not make me love him more. In fact, I'm not sure if my love would be so fierce for him if I hadn't had to work so damn hard to get anything in return. What I was more saying in this post is accepting that this is the way it is and seeing that autism ADDS to Casey when you finally do the numbers. Right now I don't see that. I see the removal of his autism as making an improvement. But I just don't know. I don't. Or just being okay with the way things are no matter what.

  6. I, too, struggle with wondering who my granddaughter would be without her autism. She is such a wonderful, lovable person. Would I take away the ASD if I could? In a heartbeat – I think.A very tough question you have asked.

  7. Its a hard thing to accept. As an adult with Aspergers Syndrome and ADHD I could tell you it is also hard to accept when you are the person in question. I can really relate to what Casey was wondering, "Who is this?" When you're little you don't think about other people, and it never occurs to you that anyone is different. Then you get a little older and start realizing there's something different about you. And as an adult you sometimes think, "Is this my life? Is this really me?" But I think accepting the child himself is the important thing. Now that I'm an adult, I know many kids with autism whose parents sort of act like they're the monsters in the closet, or like the kids have cheated them out of a normal life. I think its most important that you show Casey you love him no matter what… even when he's having a meltdown. Your job is to help him learn coping skills and self-control to deal with his autism, so that he can be as happy and successful as possible as he grows up, and you do these things because you love him, and you would not love him any more or any less if the autism wasn't there. I think that is enough for any kid. (I hope that makes sense!)

  8. I look at acceptance, as a state of mind, not a place. Accepting the diagnosis (whatever it is) gives you more power to fight for your child. You may never be able to change it or make it better, but you have a better handle on who your child will become. Lexi you have accepted his diagnosis your concern is his prognosis. What will he become? Only God and Casey know that.

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