Friday, January 30, 2009

My two faces of autism

There are a lot of bloggers and parents of autistic children who look to celebrate their autistic children everyday, and want to tell and show the world how wonderful their kids are, and to choose to look at the gifts that they offer instead of the disorder that they are burdened with. These parents want to offer their voice to speak in support of autism—the fight for its existence, acceptance and its sustainability.

I understand this attitude and this activism. And, personally, I do embrace autism and all of its colorful puzzle pieces to a point. I embrace Nick and his disorder and want the world to know just how special he is because I believe he is special and great—just like you believe that your child is great. So, I’m here to say that I’m standing right there beside you—like-minded parents—who want to promote autism as a positive movement and stop judging it as a negative one for the sake of our high functioning autistic kids and their fragile place in this world.

I can say that I get it, I do. They are our little gifts in life more precious than most and who hold a very warm spot in our hearts, and the hearts of others who have the privilege and open-mindedness to get to know and embrace them.

However, I also represent, respect, and understand the other side of autism that we call: Hell.  For those of you who understand what Hell is, because not all of you do. Whether you like to hear it or not, there is this side to the disorder and it’s often hidden from the world. It’s a sadder, scarier, exhausting and, frankly, a horrific side to the disorder that you know as severe or low functioning. It’s a perplexity that I’m still trying to wrap my brain around and understand, even after 13 years. It’s autism at its worst and I’m not choosing to celebrate it. Not a chance! It’s a side that few people actually get to know, try to understand, or accept because they give up before they can even try and have to institutionalize their child at the tender age of 5. It’s autism at is worst—an evil, hell, devastating, and heartbreaking. And don’t tell me to stop and look on the bright side, or be positive, because there is no brighter side to this side of autism. Trust me, I’ve spent time searching, begging and pleading that there would be a brighter side, at some point, someday; because how can a parent allow herself to feel this way?

A severely autistic child, like Meghan, is not a child, like Nick, who has high functioning autism, and a child you can mainstream into classrooms, and show off in public places without worry or incident. A severely autistic child cannot be mainstreamed. She is not a child you can trust to play in the yard without running off; to trust with a toy without breaking it; to trust to use the bathroom without playing with her feces—even at 13. She is not a child you can talk to and have a conversation with, or to get to know her precious little thoughts and teenage secrets. After 13 years I still don’t know  Meghan’s favorite color because she doesn’t understand the question. Children like Meghan cannot connect, speak or relate easily to you or to me—her mother—or to even speak those precious few words that we all wish to hear: "I love you, Mommy," or even "Mommy" would suffice. I’m still waiting. I’m still waiting to hear her voice. It’s autism at its worst, and I know it just as much as I know autism at its best.

Harsh? Maybe! But it’s true. But I also want to say that it’s okay, too. It’s okay to feel this way. It's okay not to pretend that everything is okay when it’s not. To allow yourself those fleeting moments to feel hostility instead of happiness.  To feel dread instead of hope.  To want to condemn autism instead of celebrating it, because it’s real, and it’s raw and it's hard. And it’s hidden from the world because, frankly, people want to see the hopeful side of autism.  The prettier side. The acceptable side.  The side that we want to show off, celebrate and promote to the world with open hearts, because it makes us feel better.


Em said...

YEA! Thanks for writing this one. We are lucky to be on the higher end...but I know parents who struggle on the other side of that coin. And too often it seems like autism in families gets divided into two camps and never the two shall meet. And that is sad for both sides. There is much to be learned and appreciated by talking to everyone on both sides of the functioning coin.

Casdok said...

Ive lost count of the times ive been to hell and back. But as you say it is ok to feel like this as at times it can be so hard. And we are only human.

Tanya @ Teenautism said...

Yes, for all the positive points we can come up with, there are still the negative. And it is very hard to go through it. I admire you for not sugar-coating it. And I admire your strength.

Kay Klebba said...

You should never doubt yourself. Only you live your life. Speak about what you know. My son is on the mild end of the spectrum, so I am not in your shoes, but I can appreciate where you are at and recognize the depth of your strength.

No one does it like a mom. We never fail, but we are fragile at times. Recognizing our challenges, pitfalls, and chaos does not make it easier to deal with. You are amazing and inspiring. Living through daily heartbreak and struggles is part of being a mom. You are all the more stronger for facing your giants.

Kay Klebba

Jacki said...

What a powerful writer you are. I just read your post from today. You seem very down to earth, strong and real. In your "About Me" your say that you are a freelance writer. I hope what you write gets into the right hands. And what I mean by that is you are good. You get the point across very clearly. If you don't have a regular column somewhere that you are getting paid to write, you should!

Anonymous said...

I needed to hear this one. Thank you for your honesty and wisdom!!!!!

Holly Nappi Collins said...

Thank you all for such wonderful comments and email. I appreciate your support and your opinions--as always!

Mama Mara said...

Keep on keepin' it real, Holli. I imagine that a whole lot of people are nodding their heads and saying "Me, too" as they read this post.

Anonymous said...

Welocme to my world. It is not a world where I would 'embrace' my childs profound disability,no more than I would jump for joy if he had heart disease or diabetes or cancer. My beautiful, incredible boy, with the big sparkling green eyes and quick, deep belly laugh, He is not autism, he fights autism and all the horrid things it does to him and robs from him. If most people had to endure and overcome just one of the 'behaviors of' associated with my childs 'brand' of autism, they would just lay down and give it up. Yet most every day my child laughs, he finds joy, he lives, he learns, but as you said, I am the keeper of the gates of hell, I have the job to try to prevent things before they happen, and to hold his hand and love him just the same if it is a day spent in hell or a 'good' day.
My son must be protected, he cant be set up for failure, not at school, at home or in public, and it is my job to be the gatekeeper, to be his voice, since without me he has no voice.
Thank you so much for understanding how I feel, I dont want pity, I want understanding, I want the world to know that I will fight to the death for my child, but I HATE Autism, it stole so much from my son, his voice, his ability to learn and understand and communicate in a way that most others can understand, it took all these things from him and it continues to take from him.