Susan's Blog

Tuesday, April 21, 2009

Beyond Compare

Don’t know just what I wanted, but I know, I wanted more.
–Carly Simon

In Dr. Suess’s story Yertle the Turtle, the main character Yertle just keeps getting turtles to pile up on top of one another so that he can be the highest and the best all around. Turtle after turtle is crushingly laid on top of one another so that Yertle can reach to the sky, but still he is not satisfied.

Perhaps these thoughts are coming up now that I can see with aching clarity just how different Max’s trajectory is from Nat’s. Comparing children. Comparing scenarios. Someone wins and someone loses. There is a painful dynamic that occurs sometimes when I’m talking to very young mothers, whereby I am assuring them that their little child is fine or appears only mildly on the spectrum, or will be fine, or something like that. I was trying to explain this to my mother yesterday while we were driving back from her gym (I had driven down to Connecticut with Max and Hannah to begin our college visits. Can you imagine this is happening to a child of mine?? Do you know what I mean?).

Even Mom, who really can grasp every new concept I introduce, within just a beginning word or two, could not quite see what I meant at first. Of course she knew what I meant, but she did not think that I was interpreting the dynamic correctly. She thought that most people were saying, in admiration, that I did a lot for Nat given the paucity of resources 19 or 16 years ago. Or given the lack of support. She was probably right, but that is not what I was talking about.

What I’m talking about is a text that runs beneath that, which carries the implication that you would never, of course, want your child to be like Nat.

They don’t mean to imply that, at least not consciously. But they are hoping for a different kind of child, a different outlook, a different set of challenges, than what someone like Nat presents.
There is nothing wrong with that! I know that! Autism is difficult, painful to deal with, sometimes impossible. We hate to see our children struggle! We hate to struggle. Yes, yes, yes.

But what happens is, I end up feeling like Nat is being seen as somehow inferior because basically he is the feared outcome. It seems almost taken for granted that Nat is the undesirable.

In the same breath, people comment on how “great Nat is doing! since last time!” and “how wonderful he is!” and I wonder which is the greater truth: that Nat is someone to admire or that Nat is someone to fear?

I am not naive. I understand that the two exist together at once. They do for me, as well. My heart will still sometimes hurt when I look at Nat and see the life he does not get to have — especially now that Max is considering which colleges he wants to attend. I cannot help comparing, just like the young mothers. Maybe it hurts when they talk to me about this because they are showing me something that is still true inside of me, that exists right alongside of all my love and pride about Nat. For as great as Nat’s life is, as hopeful as I am about his future, sometimes, I still want more.


We have just sent off our first child to college, and have often experienced these same feelings. Our oldest is a super achiever (bit of the pixie dust??), and I can recall holding back tears thinking of our daughter at the very moment he was being honored at some award ceremony back in middle school. It’s that continuing grief of lost hopes and dreams. And yet I also rail against others’ failure to honor my daughter’s full humanity… and don’t get me started on other people’s pity…

— added by toadysmom on Tuesday, April 21, 2009 at 9:30 am

I believe Nat is on the trajectory for “more”; more challenges, more triumphs, more life. He is engaged in the same human struggle that we’ve all signed on for – we all must cope with what’s thrown at us. I always go back to that phrase my brother used after Hurricane Katrina “it’s not how far you fall, it’s how high you bounce”. Sometimes you get accolades, sometimes it’s a pat on the back and encouragement to try harder. Sometimes you need to be able to convey that message for yourself. Relax girl, Nat’s got it going on.

Me, sometimes I think I’m shooting for a little ‘less’ in my life – it always seems like the volume is turned up to eleven. Lisa

— added by Anonymous on Tuesday, April 21, 2009 at 10:41 am

Posting from my phone- I hope this works.
I think even among the newly diagnosed this happens. My son is almost 9. He hasn’t attended school since October. I perfect storm of health issues, related behaviors and mismanagement caused us to voluntarily withdraw him. This after a Manifestation Determination, and retaining an attorney.
I’m now the pariah of the local special ed moms. I’m the one whose kid blew it, who didn’t make it. We’re the people who “got a lawyer”. Now, as we wait for a CSE and probably a hearing to attempt to get our son in a private school I live in isolation. All our school friends have fallen away and I know it’s because what we have may be catching. No one wants to even imagine their kid could be like mine. Sadly, sometimes I feel the same way. I never imagined our situation could degrade so much.
We’ve found a wonderful school, but even my hope is tempered with the hurdles it will take to get him there. I realize I have become afraid to hope for good things and I know it’s not healthy.
Hoping for more for our kids is natural as is the paradox of also enjoying where you are right now. I think we all struggle with this, and I hope we’ll eventually make peace with it.

— added by Deborah on Tuesday, April 21, 2009 at 11:23 am

“the feared outcome” – Yes, I understand that. It is more of a feeling than a thought, and you hear it in people’s voices not in their words. We don’t have a word for this kind of praise-fear, but we need one.

— added by Nancy on Tuesday, April 21, 2009 at 11:41 am

We just registered our youngest for kindergarten- I see in his future all the things his older autistic brother doesn’t have/doesn’t want/doesn’t need. And I mourn and rejoice at the same time. It’s hard to even know what we are supposed to want for our children sometimes.

— added by gretchen on Tuesday, April 21, 2009 at 2:17 pm

When I talk to a “new” autism mom, I often hear myself saying, “your child seems much milder then my boys”. I mean it as a reassurance, but I end up feeling so guilty for slighting my twins. I’m resolving to stop doing it right now.
My twins are wonderful and funny, and are doing all kinds of surprising things daily. They are achievers by a slightly different definition of the word.

— added by Mom to JBG on Tuesday, April 21, 2009 at 11:32 pm

As long as I have hope that my son will be safe and happy in his life, then I can usually relax and enjoy mine, but believe me I have those moments of “Why me? Why him?”. It’s at those moments I get very jealous looking across the street at the two adorable, little boys, playing and chattering away with their mom. I try not to dwell in that space too long, or the tears will come.

— added by Candy on Wednesday, April 22, 2009 at 12:31 am

I think I know what you mean. My friend recently had her first baby and was asking my opinion on immunizing him (even though she knows that I don’t attribute my son’s autism to immunizations.) Anyway, as she was talking, all that was going through my mind was that she doesn’t want her son to end up like mine. It is normal for her to want the best for her son but it still bugged me even though I know it was not her intention. When my son was first diagnose, I read somewhere to remember that your friends and family have your best interests at heart even though they may say things that seem insensitive–I try to always remember that.

— added by Jill from NJ on Wednesday, April 22, 2009 at 8:39 am

When my SIL was trying hard to get pregnant, her mother nodded at my Jack (then about 4 years old) and said: “You know, you could have a child like this.” Sadly, that didn’t bother me as much as it probably should. His struggles — our struggles — are not ones I would wish on anyone.

My favorite quote is: “This might not have been the party I was expecting, but as long as I’m here I might as well dance.” — Cathy in CT

— added by Anonymous on Wednesday, April 22, 2009 at 11:09 am

As the fellow mother with an autistic son, I understand your thoughts entirely. Speaking for myself, it is always a mixture of feeling ongoing grief (turned down very low) at what should have been and also just being PISSED that this happened to my son, whom I love so dearly from the minute he was born and wanted the fullest life possible for him with all the experiences that a growing boy should have. To Deborah who commented above: I wish we lived in the same town. You hang in there and continue to fight, fight, fight for your son. To hell with the other moms. You always have a caring friend here.

— added by Sharon L. on Wednesday, April 22, 2009 at 12:08 pm

I think I get what you are saying. About a year ago my cousin came to me asking if her son showed any signs of autism. Now, a year later to hear him talk miles around Nick almost hurts. The grief comes and goes, and most of the time we are happy with the way he is progressing. But, this soccer season really hit me hard. Nick would have been old enough to play-and it just brought everything into reality. On one hand you wish things to be different, but on the other hand you love them just as they are. It can be very confusing at times.

— added by Amy on Wednesday, April 22, 2009 at 12:24 pm

Some of the autistic adults I know call it “autisticooties.” Or the dreaded fear of them. Heh. Funny how, even in autism circles, sometimes we are afraid of “catching” autisticooties. We harbor secret fears about our children being the poster child for autism speaks “autism is a tragedy” campaign. It happens to the best of us.

I remember reading in your book about how you should never compare how kids are doing (functionally). Because as sure as the sun rises and sets, one week your child will be the highest functioning kid that all the other autism moms hope for, and the next week your kid will be “that kid” that all the other autism moms fear their child becoming. I held onto that, and always always remember it. That wisdom that you imparted has kept me sane. Especially when I find myself comparing my autie to his autie peers, something I HATE to find myself doing.

One mom’s “high functioning” is another mom’s “severely impaired.” I guess what I’m saying is, yeah, comparison is natural. It’s human. Get perspective, forgive yourself, and move on. No need to bust out the hairshirt.

— added by ASDmomNC on Wednesday, April 22, 2009 at 4:23 pm

But ASD mom, one of my favorite fashion garments is the hairshirt.
You are right, of course.

Deborah — those people are assholes. You will find new support, I promise.

— added by Susan Senator on Wednesday, April 22, 2009 at 4:29 pm

The antidote to the urge-to-compare: learn, Zen-like, how to *unask the question*, as in the famous koan about the disciple of the master Joshu who asks if a dog has Buddha-nature…

From Zen, to kaizen: the important thing is continuing improvement of things in Nat’s life, at Nat-scale, from Nat’s perspective. Or in Western terms, continuing advances in personal best.

And in the final analysis that’s how we *all* should live.

— added by Phil Schwarz on Wednesday, April 22, 2009 at 10:55 pm

Susan, is that a J Crew hairshirt or the Banana Republic hairshirt twinset?

Folks, one thing that always puts things in perspective for me is the few times I’ve been to Children’s Hospital. Autism is a bitch, no doubt, but I’ll take autism over a host of other health issues that can beset a child.

One of my co-workers is the mother of four, and I’ve never seen a human take things in stride the way she does. She told me once if you could put all your challenges into a pot and pick fresh ones, most folks would pick their old familiar challenges, because at least they know they can deal with them.

Everyone have a great day and resolve to cheer on your kids – everybody loves a little daily affirmation. Lisa

— added by Anonymous on Thursday, April 23, 2009 at 12:35 pm

When Jarrett was younger my SIL would compare him and his cousin and offer suggestions about Jarrett like “I think he has ADD” or “when Christopher was his age, he did this..” and basically said that my friend Nikki’s daughter(who happens to be autistic) was teaching him to act like her. Nikki used to babysit while I worked and it made both of us angry that she acted as though Lauren was contagious and spreading it to Jarrett. When he was diagnosed at almost 5, his dad and I were divorced but I still wanted to go to her and ask if she was finally satisfied, since even when the kids were infants it was like a competition to her. If her son did things this way at this age, then Jarrett should do the same thing the same way at the same age. I do not compare my boys like that. Max and Jarrett are completely different and they should be since they are different people.

— added by cameramom on Monday, April 27, 2009 at 10:27 am