Gertrude “Trudy” Steuernagel in her own words.

15 Dec

Gertrude “Trudy” Steuernagel was the mother of Sky Walker. In case the story is unknown to you, it is one of tragedy. It appears that Sky Walker beat his mother, killing her. Sky Walker is autistic and quite disabled. He is also aggressive and quite strong.

He also loves his mother, and his mother loved him very deeply.

It is an important story within the autism community. One which is difficult for me to write about. This is especially so since many people seem to want to speak for Prof. Steuernage and/or her son and I don’t know how to write this without doing the same. So, with apologies to the Kent State newspaper, from where I lifted these articles in their entirety, I would like to present her own words. Should the request, will pull this post.

Here is a letter she sent to the Kent State newspaper about her son, Sky and his perseverations:

My son’s trail of sparkles

My son was diagnosed with autism shortly before his third birthday. I wasn’t surprised and had suspected autism. That said, I was unprepared for the depth and breadth of the challenges autism would present to us. Sky has classical autism and is on the severe end of the spectrum.

His verbal abilities are limited. I have never had a conversation with my son. He does not ride a bike. He does not tie his shoes. I say “does not” because with autism it is impossible to tell if it is “cannot” or “will not” or some combination. He will never drive a car or live independently. He will never be a husband or a father. The first questions I asked when I heard his diagnosis were “will he learn to read?” and “will he get married?” In that order. Autism helps you clarify what matters to you.

Sky had difficulties in preschool with scissors. He did not have the fine motor coordination or motor planning skills he needed to cut construction paper pumpkins. I worked with him with limited success and eventually, as I always do, arrived at my safe place, my “what difference does it make” place. The world, I decided, could make do with one less construction paper pumpkin. I forgot about scissors and the challenges they posed for Sky.

Two years later I went to his first kindergarten parent teacher conference and heard “Sky is quite good at cutting but has some difficulties with complex patterns.” Somehow, he had made it past learning how to place the scissors on his fingers, past how to coordinate paper in one hand in scissors in the other, past the conundrum of whether to cut inside or outside the line on the paper. Sky could, in teacher speak, “scissor.” Life went on and I thought no more of scissors.

Today Sky is 16 and, in addition to autism, he now carries the diagnosis of obsessive compulsive disorder. He can read and he is not married. Sky has many rituals, one of which is cutting paper into tiny pieces. He particularly likes to cut cellophane fruit bar wrappers into confetti sized pieces. The fruit bar must be strawberry. My nightly ritual is to get down on my hands and knees and pick the sticky confetti off the hardwood floors in the kitchen and family room. I always miss pieces and these are tracked on the soles of our feet or shoes throughout the house.

One night I was frustrated and angry with the universe. Why, I thought, does he do this? He doesn’t even eat the fruit bar. Then I thought back to the preschool days, the days when Sky did not “scissor.” I started to smile. The smile turned into a laugh, the laugh into a guffaw. My son the cutup had once again proven to be my best teacher. Try your best; do what you can; the universe will come to you.

I still don’t enjoy picking minuscule pieces of sticky cellophane from the kitchen floor, but the pieces that get tracked through the house? I try to appreciate the sparkle they bring to aged carpet, the pattern they make on worn tiles. I see those sticky cellophane bits as a trail my son leaves for me as we navigate this strange world of autism, because we do navigate it together and always will. Sometimes I lead and sometimes Sky leads and sometimes we get it right. Like we did this time. Sky can use scissors and use them well. He mastered that skill and he will master others.

Neither Sky nor I will ever win the Nobel Peace Prize. Neither of us will write the great American novel. We will, however, make each other laugh. We’ll challenge each other to be better people, to be a better mother and a better son. He is my dance partner and I his. Sometimes we step on each other’s toes and sometimes we navigate with great grace. I’ve learned when to lead and when to follow. I know Sky will continue to leave a trail for me, a trail of sparkles.

Here is an article she wrote about how Kent State’s hiring practices discriminated against the disabled.

Dear editor,

Stephen Hawking is not qualified to be hired as the Dean of our Honors College.

Why? According to the requirements listed for the position, advertised on the university’s Web site, the physical requirements for the position are as follows:

“Light work-exerting up to 20 pounds of force occasionally, and/or up to 10 pounds of force frequently, and/or negligible amount of force constantly to move objects. Typically requires sitting, walking, standing, bending, keying, talking, hearing, seeing and repetitive motions.”

Hawking, the eminent physicist, has ALS, more commonly referred to as Lou Gehrigs disease, and is confined to a wheelchair with little if any control of his motor functions. He uses an artificial synthesizer to speak. He cannot sit, walk, stand, bend, key, or talk without assistance. With Hawking, however, the deficits are minimal compared to what he would bring to the job including, but not limited to, his incredible intellect and his international stature.

Truthfully, I don’t believe Hawking has any interest in becoming dean of our Honors College. Our loss. What I do believe, however, is that the physical requirements listed for this position are reflective of a cultural bias against individuals with disabilities.

We look at what is missing, not at what an individual with challenges might bring to a position. We are all challenged in some way.

Isn’t it time we stop thinking that a person who cannot walk cannot be a dean? That a person who cannot “key” cannot lead our Honors College? Ironically, my son, whose autism guarantees he does more than enough repetitive motions to qualify him for this aspect of the position, would not receive adequate health coverage because KSU contains to retain the autism waiver in its health plan. Darned if you do; darned if you don’t.

Trudy Steuernagel
Political science professor

Another about what a conversation with her son would be like.

Just a conversation
3/28/2008

What I wouldn’t give for a conversation with my son. I don’t mean “the” conversation as in the birds and bees talk, but a conversation. My son has autism and he and I have never had a conversation. I keep waiting for that day. In the early days, right after his diagnosis, I was sure it would happen. Now, as Sky has celebrated his 17th birthday, I’m not so sure that will happen. So now I plan, just in case.

I think about what might be said in that conversation. What would I want to know first? I want to know if he is happy. Then I want to know what I could do to help him. When he gets so frustrated he strikes out, is there anything I could do? Anything I could say? I’m curious, so I would ask a lot of these kinds of questions. Why do you like “The Price is Right” so much? What is it you like about Dr. Seuss? How did you discover YouTube? Why will you wear only blue shirts? Why do you shred paper? Why do you watch the ABC “Nightly News” and never CBS or NBC? Why do you like Bill Clinton so much? I’d like to know if he thinks I’m funny.

I hope he has some questions for me. I think he’d ask why I don’t make homemade fettucini alfredo more often than I do. I think he would ask why he only goes to Disney World once or twice a year, and why we can’t live in Small World. I know he doesn’t need to ask if I love him. When we’ve had a bad day, Sky says “swap me.” I say, “I’ll never swap you. I’m going to keep you forever and ever.” He says “swap me” again and again and each time I reply with my forever commitment. It soothes and reassures both of us.

Life with Sky these past few years has been very isolating for the two of us. We can’t go out and do the things we used to like to do because Sky gets so overwhelmed. Much of our time, we’re here in the house. Sky has taught me to be in the moment. All children do that for their parents, but it is particularly true for Sky. Four years ago, things were so bad Sky could not even attend school for an entire day. My life was dominated by trying to teach my classes, trying to run a household, trying to fit everything into the few hours he was at school. On bad days, those few hours could turn into a few minutes. I had to take him and pick him up because the bus was no longer an option. I couldn’t be a friend to anyone because I physically and emotionally could not be there for them. I had no patience with good and decent colleagues who told me how busy they were. Busy? Try spending an evening sitting in a closet with your back to the door trying to hold it shut while your child kicks it in. I had even less patience with good and decent students who were “stressed” because they had a paper due. But Sky, as he always does, showed me the way. Even on the worst of days, Sky would find something to enjoy, even if it lasted less than 30 seconds. Maybe it was his beloved vanilla ice cream; maybe it was a chance to see 10 minutes of “Press Your Luck.” So I started to look for my joy. Every morning while I help Sky to get ready, I put his shoes on his feet. Then, following the ritual, I lie back on his bed while he puts his feet into his shoes. Then he sits down and puts his feet out for me to tie his shoes. I realized I had approximately 17 seconds where I could lie back and not have to do anything, fear anything, clean anything, teach anything. Seventeen seconds it took for Sky to jam his feet into his shoes, sit back on the chair and put his legs on my lap. Some days, those were the only blissful 17 seconds in my day, but they sustained me.

Today, things aren’t great, but they are better. My joy is not compressed into those 17 seconds and can extend throughout an entire day. We are still isolated, however. Odd how so many parties that used to include invitations for families are now “adults only.” As friends’ children get married, children I’ve known their entire lives, I get asked to fewer and fewer weddings. Friendships not nurtured die off, I tell myself, not wanting to believe Sky and I are just unwanted. Oddly, and for better or worse, we’re content; but I still want a conversation.

Here is a letter she wrote, pushing Kent State to give domestic partner benefits to employees. It isn’t about autism. but I appreciated the sentiment.


Domestic partner benefits strength of new contract

Dear editor:

I support the Kent State administration’s offer to extend the faculty contract one year. This offer includes the pledge not to raise health care premiums (no small matter these days) and, most importantly, to implement domestic partner benefits. The struggle for domestic partner benefits on this campus has been long and fraught with charges and countercharges of misleading statements and outright lying. AAUP’s recommendation not to accept the one year extension of the contract which would finally bring justice to gay and lesbian faculty, their spouses and their children is shortsighted. Domestic partner benefits are a vital tool in the recruitment and retention of quality faculty. How can we be certain domestic partner benefits will be obtained under a new contract? We cannot, and history suggests they will not be. Indeed, the administration might well see the AAUP as marginalizing domestic partner benefits or at the very least indicating a willingness to trade them away for something else, particularly higher salaries. The latter raises another issue I have with AAUP. In the past I, like other faculty, have received numerous charts indicating how our salaries would be much lower if it were not for AAUP. Now we are being presented salary charts saying our salaries could not fall much lower. I simply do not understand this. What I do understand is that accepting the contract extension will in all likelihood not help me. My guess is this means there will not be a faculty buyout and the autism exclusion clause in the current contract will continue. Still, I support the extension based on my belief that the single most important issue before us is making certain domestic partner benefits are guaranteed.

Her nephew put together a slide show which I think is worth watching. It is mostly (about 3/4) about her before Sky, but has a number of photos of her with Sky.

In writing this piece I am in no way saying Prof. Steuernagel would have agreed with any or all the positions taken on this blog. But, if I could I would share one of my favorite posts with her, one about trucks.

Finally, here is a letter that she wrote. This letter was found in her personal affects after her death.

“To whom it may concern:

“If this letter has been opened and is being read, it is because I have been seriously injured or killed by my son, Sky Walker. I love Sky with my whole heart and soul and do not believe he has intentionally injured me. I have tried my best to get help for him and to end the pattern of violence that has developed in this home. I believe my best has not been good enough. That is my fault, not Sky’s. Numerous people know about the violence and many have witnessed it. We have all failed Sky. I do not want him to be punished for actions for which he is not responsible.

“Trudy Steuernagel.”

This letter, or more specifically the stories about this letter, are what prompted me to finally write about this story. In the introduction to the article linked above, they only quote the first line:

“If this letter has been opened and is being read, it is because I have been seriously injured or killed by my son, Sky Walker.”

They save the entire letter for the end of the story. I have read about this letter in other places where they only gave the first line of the letter. To me, cutting out that one line is being used to tell a very different story than what I believe Prof. Steuernagel intended with her letter. I’ll let you decide for yourself.

I wish Sky Walker and his extended family well through these very tough times. I wish Sky Walker peace.

20 Responses to “Gertrude “Trudy” Steuernagel in her own words.”

  1. AutismNewsBeat December 15, 2009 at 03:09 #

    Excellent post, Sullivan. Thanks for that.

  2. kwombles December 15, 2009 at 03:24 #

    Thank you. You navigated the way, humanized the situation, and made Trudy real with her own words and her love for her son sparkle. Reading this makes up for so much of what I have read elsewhere.

  3. Emily December 15, 2009 at 04:13 #

    Heartbreaking.

  4. Grendel December 15, 2009 at 06:12 #

    Indeed – one of the better discussions of this very sad incident that I have read.

  5. David N. Brown December 15, 2009 at 06:22 #

    “Age of Autism” has released a tasteless story on this case, headlined “prepare For Death at the Hands of Your Autistic Child”. This deserves an even harsher response than the “Pass the Maalox” post. To the google news complaint box!

  6. David N. Andrews M. Ed., C. P. S. E. December 15, 2009 at 12:53 #


    December 15th, 2009
    06:22:57

    ‘Age of Autism’ has released a tasteless story on this case, headlined ‘Prepare For Death at the Hands of Your Autistic Child’. This deserves an even harsher response than the ‘Pass the Maalox’ post.”

    I wish those despicable bastards would leave this planet.

  7. kwombles December 15, 2009 at 13:02 #

    The steady diet that AoA feeds of entries that outrage have the cumulative effect of numbing the reader. Right before the piece that AoA ran on autism killing you, it ran an essay about how much autism makes you give up. I touched on them briefly at http://counteringageofautism.blogspot.com/2009/12/just-when-youre-pretty-sure-theyve-gone.html.

    Certainly, David, we can go to the google news complaint, and I’m all for it, all for exposing to the harsh light of day the inappropriateness of many if not all of their posts, but it can get discouraging to read their negativity and skewed view of the world.

    I encourage folks, who like I do monitor AoA, to then go to a parent or autistic adult’s blog who copes adaptively, who finds the good in the midst of the challenges and comment on their blog about how much you appreciate their work. It is the perfect cleansing thing to do after too much time spent reading bitterness, despair and rage twisted into something that boggles the mind and hurts the heart.

  8. Squillo December 15, 2009 at 18:28 #

    Thanks for posting this. It’s so nice to get a fuller picture than “mother predicts death at the hands of autistic son.”

  9. Sullivan December 15, 2009 at 21:49 #

    When I wrote this, I really wanted to ignore AoA completely. I felt it wouldn’t be honest as their treatment of the story has impacted me. So I included the reference to their (and others) treatment of the story.

    I don’t know what the good professor Steuernagel thought or how she would react to the various blogs carrying her story. I do know that were I to write a letter like hers, the last thing I would want would be to have that first line cherry picked out to create the message some have used it for.

    That said, the next step is that I wouldn’t want my death to become a political football either.

    That is why I wrote this piece the way I did. I understand the emotions that the AoA piece brought up. I just don’t think responding to it is the right path just now.

    I decided to leave as much commentary out of the above piece as I could. But, I will say that I admire Prof. Steuernagel. I admire her for championing her son, even after her death. I admire her for acknowledging her child’s disability and the struggles she had, and yet keeping a tone of respect for her child.

    I admire a person who fights for the rights of others, as in the case of supporting domestic partner benefits as well as the discriminatory job description for dean.

    I admire the family that puts together a slide show that shows her in her happy times, both before and with her son.

    I feel sadness at the struggles she endured. I feel sadness at Sky Walker not being able to see his mother. I feel sadness at Sky Walker without his champion.

    I feel such deep sadness at the thought of Sky Walker saying “swap me”.

  10. Shanna December 16, 2009 at 15:54 #

    I was so emotional after reading your post last night I couldn’t comment through the stream of tears. This is such a heartbreaking story. A mother so devoted to her son that she was willing to sacrifice her personal safety in order to protect him. And in the end, he is left alone to navigate this world without her unbelievable love and understanding. It’s just so tragic.

  11. kwombles December 16, 2009 at 22:04 #

    Out and about on the blogosphere today and I thought, what the heck, let’s see what Ginger Taylor’s been up to. http://adventuresinautism.blogspot.com/2009/12/story-of-trudy-steuernagel-and-her.html

    “From the descriptions of his food obsessions and Sky’s diet, MacDonalds and ice cream every night, goldfish crackers to sooth his aggression, it is clear that he was not on any biomed protocol, and probably needed to be.”

    Yes. Absolutely. It was without a doubt the goldfish crackers that did this. If you thought AoA’s handling of it was bad, then look no further than Ms Taylor.

    • Sullivan December 16, 2009 at 23:01 #

      Kim,

      thank you? for bringing that post to my attention. Somehow she never made it on to my regular reading list. Now I remember why.

  12. Mike Stanton December 17, 2009 at 00:45 #

    Thank you Sullivan. As always your humanity informs everything you write.

  13. Roger Kulp December 18, 2009 at 00:49 #

    “kwombles
    December 16th, 2009
    22:04:31 Yes. Absolutely. It was without a doubt the goldfish crackers that did this. If you thought AoA’s handling of it was bad, then look no further than Ms Taylor. ”

    As someone who regularly experienced rages,and temporary regression as a direct reaction to food consumption,especially anything with dairy or casein ingredients,the depth of ignorance the ND types can sink to never fails to amaze me.

    • Sullivan December 18, 2009 at 01:28 #

      Roger Kulp,

      Sorry to bring this up–but after all you opened the door:

      if you don’t mind sharing–didn’t you go through a major regression at the removal of dairy recently? I recall reading about that. Given your major adverse reaction to the removal of casein, how would you have recommended that Prof. Steuernagel manage a dietary change on her son? Isn’t it possible that such a change could have placed her in danger?

  14. kwombles December 18, 2009 at 01:08 #

    Roger,

    There is no evidence linking casein or gluten allergies or intolerances with autism. The opioid theory was debunked. And I say this as someone who followed the GFCF diet diligently for four years for all three of my children and myself. It made no difference whatsoever when my children were removed from the diet, as you well know, having read my posts regarding it. Oh, I’m sorry, I’m not quite correct on that: there was a definite change: happier kids.

    I could say more, like you’re not this young man, like since the opioid theory has been disproven, since there is no evidence of an increased degree of gluten or casein intolerances in autistic individuals, blaming goldfish crackers and McDonalds for that mother’s death is reprehensible as it blames her. That is absolutely what many at AoA are doing, in point of fact, lamenting that she didn’t do biomed or she’d be alive, he’d be recovered, ad nauseum.

    I could also say that you are full of it, as well, and just as reprehensible with your fly-by postings. And that since the opioid theory has been disproven, what exact mechanism are you ascribing to the consumption of dairy that it puts you in rages? You’re obviously implying it sufficiently alters your brain chemistry so as to effectively render you out of control? Really? If I were physioprof, I’d probably have some fine invective to throw your way. Alas, I am not physioprof.

    I could say your ignorance never fails to amaze me, if I were to say what I was thinking. And perhaps even close with the thought that I hadn’t missed you at all, not one little bit.

  15. kwombles December 18, 2009 at 04:24 #

    Not to pile on or anything, Roger, but you do seem to be a bit inconsistent:

    “It’s funny.I started chelating(stirring up mercury)after my porphyrins were three to four times normal.The regressions that it caused were mild compared to either going off casein (Lots of head banging there.),or after a severe infection.That could be because of all of the other stuff I was taking while chelating,like isoprinosine, MB12,Omega 3 fish oil,and COQ10.”

    http://www.ageofautism.com/2009/12/autism-regression-aggression.html?cid=6a00d8357f3f2969e20120a7547adb970b#comment-6a00d8357f3f2969e20120a7547adb970b

    So which is it, did casein consumption cause the problems or did casein removal?

  16. Dedj December 18, 2009 at 05:01 #

    Funnily enough, every meeting of ‘ND types’ I’ve been to, or been involved in, has been complicated by accomodating the myriad food allergies and sensitivities of the participants.

    Many people in the ND movement are either dieticians, have studied diet and behaviour at degree level, or have food sensitivities.

    I’m not willing to dismiss the existance of these people just because Roger takes disagreeance as ignorance. We know what you’re saying Roger, we just don’t agree. Learn the difference.

  17. cs December 18, 2009 at 12:47 #

    There are a lot of assumptions going on out there. One is that the gfcf diet is something new. It starting taking off with the DANnies 12 years ago. Perhaps Trudy had tried the diet somewhere in those 12 years and it accomplished nothing. Instead of allowing that possibility into the equation, it is easier to go to the battle cry – poor mother didn’t try the diet because mainstream docs misled her into thinking it was BS so they could Rx medications.

    What I also find interesting is that February when Trudy died, Mrs Stagliano wrote and was interviewed that Autism does not equate to violence. Now on the website it is repeated over and over stories of violence with autistic children.

    A bit contradictory.

Trackbacks/Pingbacks

  1. Tweets that mention Autism Blog - Gertrude “Trudy” Steuernagel in her own words. « Left Brain/Right Brain -- Topsy.com - December 15, 2009

    […] This post was mentioned on Twitter by Catherina Becker and Autism Hub, Autism Hub. Autism Hub said: New post: Gertrude “Trudy” Steuernagel in her own words. http://bit.ly/8WY0LH […]

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