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July 23, 2012

“Envy is the art of counting the other fellow’s blessings instead of your own.”
~Harold Coffin

This isn’t an easy post for me to write.

I feel angry. I feel frustrated. I feel waves of sadness, isolation and disconnect.

And I am disappointed….. In myself.

I want to appreciate more what I have been blessed with instead of coveting that which other parents have. I want to be a voice of unity in the autism parent community, but there is so much division in my own heart. I want to be able to cheer whole-heartedly for my friends’ children when they walk, speak, go potty, or hit a home-run.

I try. I do.

But there is that little part of me that holds back in — I’m not sure what that feeling is…. anger? frustration? Envy.

I compare. It is a dangerous game.

The other day, I read a post at Outrunning The Storm. I encourage you to click on over there and read her post. I’ll wait….

She was talking about how she, as the mother of a son with Aspergers, feels caught in a kind of limbo in the parenting community. While her son is not “severely” autistic, he does face many challenges. She feels that when she tries to discuss his challenges among other autism moms, they often dismiss her, as he does not appear to be as disabled as their more profoundly* autistic children.

And she’s right.

There is this division within the autism parenting community. I don’t believe it is intentional, but I think it does come from the pain that comes from comparing our children. We hope, that as parents, we can come to this community and use it as a more level playing field for sharing our experiences. We can come and talk to somebody else who really gets it, who really understands exactly how we are feeling – the good and the bad. In reality, that is impossible, because there is no one autism, so there cannot be just one autism experience. I see that so clearly wrestling with my own experiences of having three very different children at three very different places on the autism spectrum.

I have several friends with children on the spectrum. I think I manage to compare my own children to theirs even more than I do with “typical” children. On the one side, I see younger children who mirror Troy when he was younger, and I think of just how very far he has come. To the untrained eye, he really does pass for “normal” most of the time – and that is precisely what make his brand of autism so difficult. He still has all the sensory issues and little eccentricities that he always had. He still has trouble changing subjects in a conversation, or going into a large store. He still has lots of trouble with crowds, noise, smells, etc. He has enormous difficulty with impulse control. And he still cannot sit at the dinner table – more often he eats his dinner while spinning around the house, but he looks normal. Since he has no visible disability, people simply don’t give him the same amount of tolerance that they do his younger sisters who hum, flap, bounce and everything else. In many ways, this means life is even more of a challenge for him.

Then I look at Mary, my youngest, most profoundly autistic child. She doesn’t speak. She doesn’t sign. She is working at the Ipad, but the progress there is slow. She has multiple physical disabilities, she has many sensory needs, she is moderately deaf. I was up much of last night with her. She was screaming in pain and in fear, but I still have no idea why. She can’t tell me that something hurts. She can’t even point to what might hurt. She can’t tell me about the monster under her bed. So there we were, for nearly three hours in the middle of the night, her crying, and arching her three year old body in my arms, me trying everything in my bag of tricks to comfort her, not really knowing what the problem was. If only she could have told me…

She had to go under general anesthesia on Friday for a hearing test. Because of her autism, she has not been able to give reliable indications on the routine hearing tests that her audiologist runs, so they recommended another auditory brainstem response (ABR) under general anesthesia. There is a flip side to this story. People do tend to be more tolerant of her behavior. She is more visibly disabled, wearing glasses, hearing aids and braces on her feet. Because they also knew she had autism, the hospital staff went out of their way to make the day as calm as they could for her. They allowed her to wait to put on the hospital bracelet and pajamas. They dimmed lights for her. They used ASL with her. I was able to hold her hand while she fell asleep. They made sure I was by her side before she woke up. And when she did wake up, confused and upset, the volunteer that had been with her disappeared and returned with this:



I’m not sure they would have done that for her older brother.

At the same time, I find it difficult to spend much time around children the same age as Mary – especially with Mary. I know in my head that this is selfish, so I make a concerted effort to involve Mary with other children. But then, there it is again – the comparison game and it’s all an ache of sadness and envy in my own heart and very much of my own making. Why do I compare?

Troy can at least mix in with other kids his age. Even Joyce can jump in and play with other children. Sure, she stands out with her bouncing, flapping and awkward running style, but she can do it. How I want that for Mary. How I wish I could have the complaints for Mary that I do for my older, mildly and moderately autistic children. Sometimes they ask so many questions, I just want them to stop. But what a miracle it would be to complain about that for Mary.

Joyce has developed a fairly serious problem with echolalia lately. It really impedes her in conversation and in social settings. But, oh, what wouldn’t I give to have that “problem” with Mary. Joyce elopes – she wanders off and disappears. It is terrifying. It seems I could lose her at any moment. But, Dear God, wouldn’t it be incredible for Mary to have that kind of mobility – that kind of independence.

Recently a friend was confiding in me that she finds herself comparing her autistic son to other children in this same way. I understand because I am constantly comparing Mary to other children. But I wonder if she saw, blinded by her own envy of the other children, the envy that I have of her son. He was nonverbal, but now is speaking more each day. How I want that for Mary. One of her most obvious challenges is his incredible amount of energy – just like my Troy. She has to go to great lengths to get him to expend this energy- very much like I do with Troy. But as I watched her son bouncing and jumping couch to couch, the envy inside me grew. Mary tires easily. She still has great difficulty with balance. She is physically a long way from jumping or bouncing on a couch or a ball. She is not yet running. She fatigues so much that she aspirates on juice boxes and other thin liquids- she gets so physically exhausted from eating a meal, she can’t swallow. Why can’t she have that “problem” of too much energy?

Believe me, I do know how completely irrational this kind of comparison is. I do know that this little boy has just as many sensory issues as Mary does. I do know that his mama works her tail off with him every day. But I wonder if she sees the way I envy her, so much the same as she envies the mothers of the other children. I want so badly to celebrate with her the accomplishments that her son is making. But then each time he utters a word, I simultaneously feel a surge of joy and a sting of jealousy. He cuts with scissors and pastes the shapes on a page, while Mary struggles to put a ball in a bucket. And I am so happy for his mom. I know how much work it took to get him here. And I feel like a truly rotten friend for even feeling any of this.

I am telling you all this because I think it is imperative in this community that we start to be more honest about why we divide ourselves – about why we make other moms feel like their children are not “autistic enough” to be part of our club. And it goes the other way – we need to make certain that as Aspergers moms we are not telling ourselves the same thing – that our child doesn’t have the “real” autism. This only serves to divide our community.

And I know that there are those of you reading this that might envy me, and my children. Each day that Mary gets stronger, it looks less and less like we are battling against one of the progressive, terminal diseases that the doctors had predicted. It feels like we are slowly clawing our way out of a deep dark hole that we had been dwelling in. My children are healthy, growing, and home with me, and I know that really is everything. I know I have friends here who fight daily for their child’s very survival, and I have friends who have lost that fight, and have had to say goodbye to their most precious gift. I think of that, I think of you, and I see how completely selfish this game is.

And so, here I am, feeling awfully disappointed in myself for even playing the comparison game, because I have sat down and counted the blessings of my neighbors, but in so doing, I have somewhat discounted my own. It is this comparison game that I think divides us. We spend so much time as parents, living vicariously through the successes of our children, that we feel instantly defensive when we see another parent’s child lapping ours. We instantly put up the wall, surrounding ourselves with contempt for the “more fortunate” parent. In some sense, it is no different than the bully isolating the child that has what he wants. In putting them down somehow, do we really lift ourselves? Our could we try to turn off the comparisons, just for a moment… Could we check ourselves, and try to find the commonalities, because among any parents, there are many.

So, when an Aspergers mom comes to the table and starts to tell me how hard it is for her son to have a conversation about anything that’s not related to cars – I get that – because that mom is me. And when the mama of profoundly autistic child retorts that she only wish she had that problem with her nonverbal child – I get that too, because that mom is me. And when the mother of the moderately autistic little girl who can recite the script of any Pixar movie in its entirety pipes in that she just wishes she knew her daughter could understand her when she tells her to go get her shoes from the kitchen, I get that too – because that mom is me.

We should all be at the same table. Many of our children share more than just the same diagnosis. We, as parents, share many of the same concerns. But for so many of us, it feels nearly impossible to break through that wall of envy that divides us. Because there is no one autism, just like there is no one human experience. The only way for us to come together is for us to talk, really talk, about the feelings, irrational feelings maybe, but real, honest feelings nonetheless. Regardless of our jealousy, we need to celebrate with and support each other on this journey, because even though, we might not each understand exactly how the others feel, we can come pretty darn close.

There is a place where we celebrate triumphs that most people don’t even recognize. Where we don’t stop cheering until every child makes it to the finish line, in their own way, in their own time. And that is where we belong.

*Editor’s note: I have started to change my vocabulary, ever so slightly, regarding the nature of my children’s autism. In the deaf culture, levels of hearing loss are listed as mild, mild-moderate, moderate, and profound. I like this better for autism as well – the words “severely autistic” or “low functioning” just rub me the wrong way. Just my own humble opinion…

7 Comments leave one →
  1. Life and Ink permalink
    July 23, 2012 12:09 pm

    Erin, You have written a beautifully honest post here. Get it out. That is the best course of action. Sometimes we have conflicted thoughts and feelings, you know, the ones where our head is on one page and our heart is several pages behind… you took such a healthy course of action, you got it out. Your thoughts are not wrong, they are natural. They are what you feel and acknowledging they are there is the first step in finding the way to a place where your head and your heart are in balance, and also in understanding that sometimes too, they won’t be in balance and that is okay. You are leaps and bounds ahead of those who can’t take the first step, who can’t own their feelings.

    Moreover, I can’t agree with you more about being open, honest and supportive of those whose path we cross in life. If we could just embrace each other’s struggles rather than compare, we can be a support. It is a worthy goal and at times a difficult one. I wrote recently a post on why I don’t compare and these words came out…

    We were sisters, introduced by struggle, and joined by acceptance.

    What I can give you is to tell you I am here and so are many others, we can listen, you are not alone, not even in the middle of the night, when you are up with Mary, unsure of what your precious child needs, you are not alone. There are positive thoughts being sent to you and holding you up and giving you the unseen strength you need to see your way through the night. That unseen strength, that is magic, and you have it coming your way in abundance. 🙂

    • July 24, 2012 2:29 am

      A comment like this is so much of why I write here. Thank you so much for your kind words. “We were sisters, introduced by struggle, and joined by acceptance.” Oh I like that. I can’t tell you how much I value this sisterhood of support that has come from getting to know many of the amazing people in this community. It really means so very much. Thank you. ❤

      • Life and Ink permalink
        July 24, 2012 7:37 pm

        That’s why we do this, to help one another. It’s nice to know there is a place in this world we can do that.

  2. July 23, 2012 5:29 pm

    wow, thank you for this wonderful post. I read it last night but needed to let it sink in before commenting, though I’m not sure I have any better words today. I think what you’ve done here is part of the reason we all come to the blog world, to hear this kind of truth and stripped down honesty. It’s so lacking in the world and I need it. You’ve given us all such a wonderful glimpse into your life and your feelings and into the triumphs and struggles of your three beautiful kiddos and i thank you for that.

    • July 24, 2012 2:32 am

      Thank you for starting the conversation! It seems like it has become such a tricky dance, and noone should ever have to prove their child is “disabled enough” to be part of the conversation. We should all be here cheering for each other. I know I am going to make a more concerted effort to do that, in large part thanks to you starting a conversation.

      PS- I hope Charlie’s week (and yours) gets a little better. Hang in there.

  3. July 23, 2012 9:11 pm

    Envy is something that we all go through no matter what we say. Would we be human if we did not feel that desire to make our children’s struggles less than we do? The deep love you have for all your children flows through this gripping post. Since we all know the sting of the comparison and we all make the comparison, it seems the best course would be to learn to act with compassion and caring to everyone. That is not always easy. So many people can make us hurt, angry or feel alone. To rise above it and provide comfort and support to those within our community, no matter where they are comparatively speaking is an important step toward unity. Even, in our envy – we are united, if you think about it. And all of our feelings as you have talked about here come back to the very basic – we all love our children and want the best for them.

    • July 24, 2012 2:36 am

      I absolutely agree. I think that is what we all need to remind ourselves when we start the comparison game – that we do all love our children and we do all want the very best for them. “Even, in our envy – we are united.” Absolutely. Thanks!

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