Friday, May 27, 2005

a few thoughts on parental denial

Parental denial, while understandable, is selfish and hurts the child the very most. I don't mean to sound harsh. I empathize. I have struggles of my own, but it still makes me so sad. The qualitity of the entire family's life as a community is impacted when tough issues are left unaddressed.
People are always remarking on all that we've done for the girls and how much I've read, etc. and I feel ridiculous taking the compliment becuase it's like, "Well what the heck else would I do?" But, when I started meeting other parents, I found out that not everyone thinks like I do. A speaker at the Autism/Asperger's conference made this statement and I thought it was a good reminder that people do deal differently with grief or any other situation:
"We all know that every child is at a different place on the spectrum. Well, so is every parent."

For what it's worth....
I say grieve then get on with it. You'll grieve again, there's always opportunities to grieve, but the time to act is N-O-W!

Tuesday, May 10, 2005

Coming Soon....Autism in the News

Taylor Cross and his mom Keri Bowers who are working on a full length Documentary on Autism: "Normal People Scare Me" were on CNN w/Paula Zahn, May 6th. You can go here to read the transcripts: *Page all the way down*

Movie is expected to be out in October.

And also....

CNN on Sunday May 22nd at 8pm
Autism is a world....

A special program on autism as seen through the eyes of autistic adult.....

The trailer says...

My name is Sue Rubin. im 26 years old. I have written these thoughts about my bring people into my world of autism....


CNN’s Oscar®-Nominated Film ‘Autism Is a World’ Makes TV Debut
CNN to Air Acclaimed Filmmaker Gerardine Wurzburg’s Film about Autistic Woman on Sunday, May 22

Autism Is A World
Nominated for an Academy Award, "Autism Is A World" is a rare look at autism through the words of a young woman who lives with it. The film is scheduled to be broadcast on May 22 at 8 p.m. ET on CNN.
"Autism Is A World" is a co-production of CNN Presents and State of the Art, Inc., and was produced and directed by filmmaker Gerry Wurzburg.

“Autism Is a World,” a co-production of CNN Productions and State of the Art Inc., will make its television premiere as a CNN Presents documentary on Sunday, May 22, at 8 p.m. (ET) The film, nominated for an Academy Award® for Best Documentary Short Subject by the Academy of Motion Picture Arts and Sciences in February, is a candid and compelling look into the mind of Sue Rubin, a 26-year-old Los Angeles woman living with autism.

“Autism Is a World” combines Rubin’s courageous writing with a sensitive, dramatic reading by actress Julianna Margulies. Brought to life through the powerful filmmaking of Gerardine Wurzburg, “Autism Is a World” offers a view of autism as it has rarely been seen—from the inside out. The film was produced and directed by Wurzburg. Jennifer Hyde was the supervising producer for CNN Productions.

“We were delighted to work with Gerry Wurzburg to tell the remarkable story of a true hero, Sue Rubin,” said Sid Bedingfield, senior vice president of CNN Productions and executive producer of “Autism Is a World.” “Her courage and eloquence are inspiring. She takes us inside the world of autism, allowing us to understand this mysterious disorder in ways we never have before.”

“Imagine a life that in 26 years has spanned being labeled as retarded and becoming an honor student in college,” said filmmaker Gerardine Wurzburg. “Imagine accomplishing all of this without the gift of speech. This is why it was such a privilege to work with Sue and her family on this production. Today, there are thousands of children facing the diagnosis of autism. For them and for their families, Sue’s story is a beacon of hope.”

Rubin has been on an extraordinary journey for 26 years. When she was 4, her unusual behavior led to a diagnosis of autism and contributed to the belief that she was mentally retarded. But at age 13, a new communication technique gave Rubin the ability to connect with the world and exhibit her considerable intelligence. Now, she is a junior in college, a tireless disabilities-rights activist and an articulate guide into autism.

Rubin wrote the documentary and is the viewer’s guide into autism. By typing into a handheld communication device, Rubin explains her feelings and her actions, such as her need to clutch spoons or why she finds comfort in falling water; her relationships with other people; and how she copes with the tasks of daily living and the challenges of college.

Rubin also describes some of her unusual behavior. She does not make eye contact when greeting strangers and instead may fixate on their shirt buttons. She cannot verbalize a person’s name but may frequently repeat the same word or phrase. By discussing some of her behaviors, Rubin provides insight into this complex part of autism.

Rubin guides the audience through all that is special and usual about her life. From the racetrack where she goes to unwind to the classroom where her intellect shines and from a presentation at an autism conference to the challenges of paying bills or shopping, Rubin takes an unflinching look at the world of autism and the challenges she must face daily.

Free copies of “Autism Is a World” will be provided to 16,000 libraries across the United States, made possible by a grant from the Nancy Lurie Marks Family Foundation.

Tuesday, May 03, 2005

Dear person(s) who ask me, "Would you change them if you could?"

I think there is a fine line between acceptance and resignation.
17 months ago I would have answered differently. Before we knew how to help our HFA dd and before we knew it would get better, or at least different, I know I wanted a "cure."
And now, as we prepare to have her twin assessed for ASD, I have a different mindset. We have a support system. We have found some techniques to help us all understand one another much better that have worked wonders for us. I have different expectations. It is all just so different.
Like many others have said, I would strip the anxiety and fear and anything that is painful away so that they could be free to be their exceptional selves without all of that encumbering them. I wish I could know the things they cannot tell me. I wish I could gather up every impatient moment, every time I was embarrassed by them and apologized for them when they were helpless in their responses to the world. I wish I could take captive every indefensible frustration or thought. I wish I could take back all the sensory misery I exposed them to. I wish I had known that they had GI issues.
I have no interest in making them into something they are not for the sake of conforming to this world. I want to provide the opportunities for them to pursue whatever it is that makes their souls sing someday. I think that I have an obligation to teach them what is expected of them in certain settings. All of us have to learn codes of behavior. I would be remiss as a parent if I failed to instruct them in basic manners, consideration of others, spiritual matters, and self-control, no matter their neurological design. And if I need to enlist professional help to do that, then I will do so. If they desire friends, I will help them learn how to build those relationships, but if a more solitary life is satisfying, I don't think I would force a busy social schedule on them. If their friendships don't look like what I am accustomed to, but they are healthy and mutually edifying...that is fine with me. I don't care one bit what the world at large has to say about who I run with, what I believe, or how I look and I can't imagine applying a different standard to them.
Right now they are so little, I have no idea what their futures hold. We just want to equip them with the tools they need to get to where they want to go and the opportunity to express themselves for who they are. Hopefully, along the way they will become unfetterd by the uncomfortable aspects that might be obstacles for them to achieve their dreams.
But all this is how I feel now, 17 months later. At 12:40 am on May 3rd. Who knows how I feel in a few months, a few years, heck a few minutes. But I do know I never want them to feel unsatisfactory in my eyes, not for who they are. They are not what I expected, but they are just exactly what I want.
mommy to abby & emma jean

post script:
Both within the ASD community and without, people ask it a lot. It is a loaded question in the ASD community. Especially parents who think we use ABA as some kind of torture in order to turn our childen into submissive robots. And some autistic adults who feel like they were abused in the name of therapy and unacceptable to their parents and society at large. It is hard not to feel on the defense, but Jimmy and I know what we've done for the girls up to now have been the right things for them. We're free of too much second-guessing since we're not the head honcho of this little corner of dysfunction junction. Thank goodness.

lab results trickling in

Looks like Emma Jean has similar GI issues to Abby. Candida diet for her now too. Ugh. I suspect she is not going to go down without a fight either. The very thing that can make Abby so difficult actually worked to our advantage when it came to restricting her diet:INFLEXIBILITY. Because Abby is so inflexible and such a rule-meister, she felt compelled to follow the rules to the letter. She does not require one bit of monitoring. She is terrific at telling others what she cannot have. Emma Jean on the other hand is impulsive and tests all limits of everything she encounters. No rule established by someone else (she has her own particulars that no one better cross) is accepted as an absolute without a knock down drag out.
I am really dreading this transition. Ugh. Ugh. Ugh. We are still waiting for the heavy metals report.
Heaven help us.
  • International Day of Prayer for Autism & Asperger's Syndrome