Susan's Blog

Tuesday, August 31, 2010

The Pennsylvania Gazette, which is the University of Pennsylvania alumni magazine (Ned and I graduated in 1984), has just published a feature article on me, autism survival, and family love/life.  You can read it here.

8 comments

And it’s wonderful!

— added by Donna on Tuesday, August 31, 2010 at 4:31 pm

Great article – and the pic of your family is just lovely.

Had to comment on this passage :
she says. “So much of my relationship with him is about being next to him in the same space because we don’t talk a lot,”

My husband and I have coined the term “proximity love” for just this thing 🙂 When my boys come and sit down next to me and just want to be, it fills my heart with as much love as if they had looked in my eyes and said “I love you Mom!”

— added by Suzette on Tuesday, August 31, 2010 at 5:28 pm

What a great article. Nat has come so far, and this was a wonderful reminder to me about how far each of my sons has come as well. Thanks for sharing!

— added by kim mccafferty on Tuesday, August 31, 2010 at 8:01 pm

Just read the article. Glad to hear about your life. Wonderful for you to have shared your experiences. We have been through similar experiences with our daughter Eve(12). Dave Talton (Penn’84).

— added by Dave Talton on Friday, September 3, 2010 at 1:06 pm

20 years since graduating, I’m not sure if I’ve ever actually read a full article in the Penn Gazette, but today I read yours, and your words made me feel much better. I definitely plan to check out your books and more of your blog.

I have a 2 year old who I fear may have Autism. He’s been in Early Intervention since January after his 18 month autism risk screening questionaire, in which my pediatrician told me he ‘almost failed’. I was shocked at the time. He said he thought he was ok, and I should wait until he turned 2, but I could not sit still with it. He sent me to a pediatric neurologist who spent very little time with him & said he was suspicious for autism & recommended Early intervention which he was accepted into for delays in attention and speech. Since then it’s been an up and down roller coaster where I have microscoped his every move & stage of development. Some days I think ok…he could be ok, but lately, approaching 2 and a half, he’s been lining toys up more and more, echoing phrases, you can tell he feels a bit uncomfortable with eye contact & tends to stay on the periphery in social situations, although he has a pretty good rapport with his 4 year old (I suspect potential ADHD) brother. He is also extremely bright. He names all of his upper and lower case letters, can count to 20, knows all shapes colors & lots & lots of single words, but if I ask him if he’s a little boy or a baby or a boy or a girl, he always just repeats the last thing I say. Anyway, this is a time of discovery for me, and there is anxiety around every corner. I can admit this was always one of my biggest fears, but he’s also the love of my life. I thank you so much for writing such a survival guide. I’m hoping it will give me the bravery to face whatever may come.

— added by Julie (Penn '90) on Friday, September 3, 2010 at 9:28 pm

Susan,
I have 3 children none of whom are autistic. I know of a colleague who does. My oldest son has just begun at Penn. That’s why I read the article about you and your family in the Gazette. Truly a wonderful article.

Two things struck me very positively–your acceptance of who your son Nat is. It seemed like that allowed you to take the appropriate steps in your life. The other was the wonderful cover picture. Your gaze at Nat seems to capture that acceptance and pride in him. His gaze at you seems to convey his love for you and his appreciation of everthing you have done for him.
I plan to forward this article to my colleague.
Bless you.

— added by Bill Barnes on Saturday, September 4, 2010 at 11:49 am

Hi Susan,
I just read your article in the Penn Gazette (College grad ’96) and I felt as if I was reading my own life story. My son, Nate, who just turned three in August 2010 was recently diagnosed with ASD. When you wrote, “‘A little genius’ the pediatrician calls your son, because he can recite long passages from The Velveteen Rabbit. But ask a simple question like, ‘Want juice?’ and he just parrots the words back to you.” I thought, that’s Nate! I struggle with this new diagnosis and, yet, I am trying hard to not let the label get in the way of celebrating the unique boy who is Nate! Sky’s the limit! I want to offer him all the opportunities I can to help Nate learn and grow into the best person he can be. To complicate matters, we have an 8-month old girl, Emily, whose crying aggitates Nate to no end! I’m learning to balance my attention between the two of them. My husband and I laugh and struggle together and wonder about what lies ahead for Nate and for us as a family. I try to be positive, set our expectations high and love Nate for the wonderful gifts his autism has given him. However, when he covers his ears, or visually stims on a chair rail or retreats to a quiet corner at a family gathering, I worry and feel sad. I remain hopefully optimistic and your story has inspired me to read more, learn more, and continue the journey of an “unexpected life.” I just ordered “The Survival Guide” and can’t wait to read it! Thank you for sharing your story and wisdom.

— added by Amy on Saturday, September 11, 2010 at 10:43 pm

Thank you for sharing your story. I do not have autism in my immediate family, but I have a feeling I should read more about it as I am meeting more families with autistic children. Your experiences and books should be a good start for me. Many thanks and sincere good wishes to you and your beautiful family.

— added by Octavia on Friday, September 17, 2010 at 12:53 pm

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