Letters

Parents of disabled children commiserate with Scot Sea; others thank him for helping them understand a foreign world.


Salon Staff
October 4, 2003 1:01AM (UTC)

[Read "Planet Autism," by Scot Sea.]

I suspect this is small comfort to Scott Sea, but the ability to write so gorgeously about such a mysteriously tragic reality -- his daughter's severe autism -- says something breathtaking about human life.

The article was a gift to your readers; yet in resonance with the author's experience, it's impossible to describe precisely what that gift was. I remain forever grateful that there are people who can do this.

Advertisement:

-- Barbara Regenspan

Scot Sea's "Planet Autism" is heart-wrenching, vivid and the most "real" account of the daily lives of families with challenged children I have read. As a pediatric nurse I counseled parents on strategies and helped them manage their children when they were in the office or the hospital.

I always knew and respected the fact that these parents were the experts, the soldiers in the trench. I have long admired the way many parents of these children hold their heads up and accept what the day brings, which is usually a predictable kind of unpredictability that most of us would not accept for an hour.

Few of us know what it's like to make cleaning feces and other body fluids off everyday objects part of our routine, or to suffer from the lack of a shower or a trip to the store on our own. There is not a comment I can make to comfort a family member in this situation. I hope that people read the article and understand that the world is a completely different shape in some households.

-- Teresa Courtney

I found the article on autism both fascinating and heartbreaking.

Advertisement:

In a civilized world, governments would exist for one reason only: to take care of their people, to help them with the necessities of life that they can't provide for themselves. Food, shelter, healthcare (no matter how specialized) and education are every human being's right. These things should not be subject to "free market" whims, political expediency or, God forbid, insurance industry regulations.

Lack of money is the most common excuse for the existence of human suffering. In a country that can afford trillions of dollars for vanity wars, foreign aid to despots, and boondoggle/pork barrel projects, this is obviously a fallacy. Lack of vision, compassion and will is the reason behind this story and millions of others like it.

-- Joseph Thomas

Tell Scot he is not alone. I understand exactly what he is talking about, having a 15-year-old daughter with PDD-NOS and OCD who gets violent. Our family has been destroyed through police calls, moving everywhere to find a decent spot for her, to running out on the rent as all the money went to care for her ever-growing needs.

Advertisement:

We are bankrupt, living with family, and are numb with exhaustion. I cannot work full time as her high school calls daily about whatever she has done lately that they will not handle.

There was also a grandmother in Sacramento who shot her adult granddaughter rather than watch her daughter go through moving the granddaughter to yet another school, another disaster. I nodded grimly at the news, knowing what drove the grandmother to that extreme. I wonder what will happen when I finally cannot take any more?

-- Michelle Eventide

Advertisement:

As the proud parent of a wonderful 14-year-old young man who is severely autistic, I obviously strongly empathize with the author and his wife and daughter.

Simply put, parenting a large, physically powerful and nonverbal young man such as my son is an incredibly challenging and stressful experience that could not be comprehended by anyone who had not been through the experience themselves. I myself have found my strength stretched to its absolute limit.

That being said, at no point in the article did I detect any love for Sea's daughter or enjoyment of her company. Those are the two things that allow me to cope with my son and make him the best thing that has ever happened to me.

Advertisement:

-- Steven L. Fine

As an older sibling of an autistic man, I take great offense to Scot Sea's article, "Planet Autism." Mr. Sea would like to categorize the autistic as either savants or savages. My brother, Jeffrey, was diagnosed in the early '70s. He went on to attend two of the best schools for special needs in New York State, Pre-Schooler's Workshop and Rosemary Kennedy School.

Because of this strong educational background and loving family support, my brother has a job and an active social life. I don't "feel" for the man who killed his child and himself. Did he exhaust every opportunity for his child's development?

Families with an autistic child are obligated to provide the best educational and social opportunities, just like any other family. But we just have to work a little harder so we can avoid resentment and tragedy.

Advertisement:

-- Karen Christina Jones

Thank you, Scott Sea, for writing this article. It is the most truthful account I have ever read of what it is like to be the parent of a severely disabled child. My 23-year-old son has severe cerebral palsy, frequent seizures, and is mentally retarded.

The issues are different than for your daughter. But the sense of living on another planet, surrounded by clueless neighbors and store clerks, enduring unimaginable inconvenience at home: All this I recognize. Thank you for speaking the truth.

-- Jan Gallant

Advertisement:

I know that man (who killed his autistic child), and I know the author. I am living their lives. I love my son with all my heart, but when my husband and I are gone or when we become too ill to handle him, what will happen to my son? I would not wish this on anyone.

-- Suzanne Leonard

As the mother of a 15-year-old child with tuberous sclerosis who has many autistic-type symptoms as a result, I could really relate to the chaos, embarrassment and frustration expressed. Especially when it comes to the clueless and stupid attitudes, comments and delusions comfortably nurtured by those who don't have to live through something like this.

Burdens like these "blessings" are a nice place to visit, but nowhere anyone would want to live, and as character-building experiences they are highly overrated. More like character-deteriorating through the continual stress. It never stops. It never changes. It never goes away or gets better. Or worse, it seems to for a time and then returns with a vengeance.

Advertisement:

I wish the world could really see what it's like through the eyes of this article but unfortunately, I don't have the faith in human nature required to believe it will really happen.

-- Name Withheld

Scot Sea's piece on autism is, without a doubt, one of the most courageously written articles I've ever read. Courage is not often associated with writing anymore, but to make people try to see or feel the reality of an (un)certain situation is admirable.

The phrase "She is atomic" is a masterstroke. I don't know when, or if, that quote will ever leave my head.

Advertisement:

-- Michael Deme

Please convey my gratitude to Scot Sea for vividly telling the truth about life with an autistic child. While I am only an occasional visitor to their planet, I've had a glimpse of what life is like there for my sisters and their families (one has two autistic daughters, and one has a son with Asperger's syndrome).

On behalf of them, I'd like to thank Mr. Sea for sharing what daily life is really like for the parents of "special needs" children, and for including the full range of emotions that the necessary yet relentless, day by day, hour by hour, minute by minute, second by second, monitoring of these children can elicit.

-- Cynthia Winters

Many thanks to Scot Sea for writing that excellent slice-of-autistic-life piece, and to Salon for publishing it. For me it couldn't have been more perfectly timed as I dragged myself into work after getting up at 4 a.m. to tend to my 11-year-old daughter giggling and running naked around our backyard.

Since we learned of our daughter's condition, my wife has been a stay-at-home mom. She slid reluctantly into the role of advocate, therapist and caretaker and gave up her career as a software developer.

Sometimes it's hard to decide if you should try and lead a normal life or not. Is it bad to pretend that everything's fine? "Let's go the mall!" you say on a fine fall morning. Two hours later you leave the store with your child screaming, with everyone looking at you like you're an abusive parent. But sometimes it works. Sometimes no one knows but you that it could all fall apart in a few seconds.

And sometimes she laughs at her private joke, and her face shines as she sings her current favorite song, and you hug her and kiss her beautiful face and you find you can get through another day.

-- Charlie Evett


Salon Staff

MORE FROM Salon Staff



Fearless journalism
in your inbox every day

Sign up for our free newsletter

• • •