Susan's Blog

Sunday, January 31, 2010

Across My Universe

“I highly recommend having children one day,” I said to Max and Ben this morning as they chatted behind cereal boxes and open laptops. They did not look up at me but they did pause to listen. Nat was hovering in loose gray sweats and rumpled hair, waiting for me to make his bagel. He can do it all himself but I like to do it when he’s home. Cinnamon and coffee smells laced the air.

I leaned on the cold granite counter and cut into the bagel. “No matter what kind of pain they may bring — “

“The pain isn’t going to affect us because we’re men,” interrupted Ben, grinning and hoisting a chunkily buttered piece of toast. The green sweet tendrils of “Nothing’s gonna change my world…” were blooming from Max’s computer.

“I don’t mean that kind of pain,” I explained patiently. Nothing’s gonna change my mood… “I mean emotional pain. With children, there is so much of that, it’s true. But the thing is, no matter how much pain there is, there is a level of joy like nothing else you could ever experience. Believe me. Just looking over at the two of you at the table like that, talking together, makes me want to cry.” I paused, realizing my eyes were puffy and wet. “Hey, I am crying!”

Max laughed. There goes Mom again, I guess they were thinking. They went back to their conversation about the animation they were working on and I went into the kitchen to check the bagel.

Well, yeah. But it’s true. You know what I mean.


Yes, I do. Well said.

— added by A Momma Just Trying to Make it Through the Day on Sunday, January 31, 2010 at 10:49 am

I hope my typical kids never have children for fear of autism. I really don't care what spin you put on it. It rips apart families and the stress and heartache is huge.

— added by Anonymous on Sunday, January 31, 2010 at 1:07 pm

I hope my children have children, if they would like. And it is my fervent wish that my children will have come to appreciate all that this world has and brings, including disability and ability.

I hope that my own kids experience pain and joy, darkness and light, ability and disability in their life. That IS life. And it is my work as their mother to show them that having a child with autism in our family does not rip us apart, but makes us richer and blessed beyond belief.

— added by Penny on Sunday, January 31, 2010 at 1:47 pm

Yes I know exactly what you mean.

And I know exactly what anonymous means too.

Although autism hasn't ripped apart my family by any means it has caused stress and, honestly I am a distracted parent to my NT kids in a way that I wouldn't be if I didn't need to keep a keen eye on my ASD child at all times. I don't want my children to have to deal with being a parent who isn't "present".

— added by Susan on Sunday, January 31, 2010 at 2:15 pm

I hear you all, and I feel it, too there has been loss and grief, (see entire blog since 2005 and both books of mine). But here's what I think, interpreting loss very broadly: Tis better to have loved and lost, than never to have loved at all.

— added by Susan Senator on Monday, February 1, 2010 at 6:08 am

I feel you Anonymous, but don't overlook the magical moments, because they are there, NT or not.

Jared sat for his first haircut at the barber's in 8 years. Jared got his lollipop and headed to the car, but 5 adults cheered and did a little dance. It was exhilerating seeing him get through something that has been so difficult for him, BUT HE DID IT! He's probably getting a little burned out hearing me tell him how proud I am of him. I'll be riding this for weeks. Lisa

— added by Anonymous on Monday, February 1, 2010 at 9:38 am

My typical children have had to live with the sheer hell of autism all their lives. I hope they go on to lead the free life they couldn't get as kids. Why would I want them to risk that all over again. I too hope they never have children.


— added by Anonymous on Monday, February 1, 2010 at 11:38 am

This is something that has come up with our teenagers (in our family it is our youngest with autism), and I know my thoughts have evolved since we were first in the throes of accepting the reality of autism. I too would never wish the heartache I have experienced on anyone, especially my own kids, though I have reached a point where I no longer wish to return to my previous self — a big step for me.

All of us had an unlucky thing happen, but it doesn't mean our kids will too — despite the genetic component — the odds are still in favor of having NT kids (who bring pain and heartache and love and wonder too). I'm with Susan S on this one, we have to encourage our children to embrace life & love despite the risk of heartbreak — though I have certainly had my moments in the Anonymous camp.

Thanks for the thought provoking post.

— added by toadysmom on Monday, February 1, 2010 at 3:31 pm

It hasn't always been easy but we wouldn't be who we are or where we are today without Jarrett and autism. We have taught each other alot over the years and I don't know that I would change any of it. My brother and I are undiagnosed but have what we both feel are autisitc or asperger like tendencies ( we also have a couple of cousins, a nephew and my brother's future brother-in-law on the spectrum so honestly, autism is the norm in our family). It's just who we are.
I do understand those that don't want their kids to go thru what they've been thru with autism because it is hard. Every day is a struggle.

— added by cameramom on Tuesday, February 2, 2010 at 6:12 am

I do understand the pain and the desire to shield a child from pain. But remember, we don't have a crystal ball. We have no idea how our NT kids are going to be affected. Autism may also become a part of who they are. Max, for example, decided to write about how Nat has affected him as a person, for his college application essay. I could have died of pride and happiness. I think autism has deepened my kids' perspective and sensitivity, however much they have been hurt by aspects of it. Our children grow up and become very different from us and how we see things. Life is very big. I don't think we should give up and say 'that's it, it's awful, that's all it's very going to be.'

— added by Susan Senator on Tuesday, February 2, 2010 at 6:24 am

I love your attitude Susan. And as a non autism parent, but life long autism "participant", I have to say that it has profoundly touched my life. I have friends and know children (now adults…) whom I love and know that I wouldn't have met any other way. I would gladly have missed out on all of that, if it meant these people didn't suffer, but with that being impossible…I remain grateful. I don't wish autism on these families or any, but that said, I appreciate them all and am happy to have met them and have them close in my life.

— added by michele on Tuesday, February 2, 2010 at 7:05 pm