Left Brain Right Brain

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.

I just saw this press release and thought it worth noting here. I saw the story at Time Magazine yesterday, but I already had a few posts going up them. I find it good that autism research is high enough profile to make the Time list.

PHILADELPHIA, Dec. 11 /PRNewswire-USNewswire/ — Autism research led by scientists at the Children’s Hospital of Philadelphia has been named one of the top ten medical breakthroughs of 2009 by Time Magazine.

On the magazine’s website on Dec. 8, Time cited the largest-ever genetic study of autism spectrum disorders (ASDs), published in April in the journal Nature, by a group led by Hakon Hakonarson, M.D., Ph.D., director of the Center for Applied Genomics at the Children’s Hospital of Philadelphia. That study identified DNA variations that account for as many as 15 percent of all ASD cases. Because the gene region affects how brain cells connect with each other in early childhood, the research significantly advances the understanding of how autism originates.

“We are proud of this research discovery, and are glad to see it receive this recognition,” said Philip R. Johnson, M.D., chief scientific officer at the Children’s Hospital of Philadelphia. “It provides a starting point for translating biological knowledge into future autism treatments.”

The autism gene research from Children’s Hospital, which included two studies in the same issue of Nature, received extensive news coverage, including the CBS Evening News, ABC World News Tonight, BBC, Reuters, the Chicago Tribune, the Philadelphia Inquirer, and other news outlets in the U.K., India, Australia, Germany and China. Hakonarson’s main collaborator was neuroscientist Gerard D. Schellenberg, Ph.D., of the University of Pennsylvania School of Medicine, with other scientists participating from 14 additional centers.

To see Time’s description of new research on autism, click here:

http://www.time.com/time/specials/packages/article/0,28804,1945379_1944376_1944404,00.html

About the Children’s Hospital of Philadelphia: The Children’s Hospital of Philadelphia was founded in 1855 as the nation’s first pediatric hospital. Through its long-standing commitment to providing exceptional patient care, training new generations of pediatric healthcare professionals and pioneering major research initiatives, Children’s Hospital has fostered many discoveries that have benefited children worldwide. Its pediatric research program is among the largest in the country, ranking third in National Institutes of Health funding. In addition, its unique family-centered care and public service programs have brought the 441-bed hospital recognition as a leading advocate for children and adolescents. For more information, visit http://www.chop.edu.

CONTACT: Rachel Salis-Silverman of the Children’s Hospital of Philadelphia, +1-267-426-6063, Salis@email.chop.edu

SOURCE The Children’s Hospital of Philadelphia

A year ago I spent a lot of time blogging about Barack Obama. As the U.S. election neared, I liked what I heard from him–concrete statements, not just pseudo-promises with no teeth like Mr. McCain was giving us here in the U.S..

After the inauguration, I blogged Change and Hope, taking two of the catch-words from the campaign.

Stimulus money was applied to autism research. Tom Insel (head of NIMH and chair of the IACC) gave credit to the fact that they had a Strategic Plan in place. It is easier to justify spending money when you can tell someone (the president in this case) exactly what you intend to do. Dr. Insel noted that in a recent meeting, Mr. Obama restated his commitment to allocate $1B towards autism research.

The Whitehouse’s web site includes a page on disability policy. A few of the steps Mr. Obama has taken include appointing a special adviser on disability policy and applying over $12B in stimulus money towards IDEA (special education funding–the Individuals with Disabilities in Education Act).

What we haven’t seen yet is the appointment of an “Autism Czar”, or an increase in IDEA funding to full levels. Also, the IDEA funding from the stimulus money is not a long term commitment.

This has been a very tough year for Mr. Obama. He came in to office with a major economic crisis and (or compounded by!) two wars ongoing. Those are huge distractions for anyone, but I would like to see focus applied especially on long-term, full funding of IDEA.

I am curious as to what other people think of promises made during the election and where we stand now.

It is an unfortunate fact that we see a lot of lost kid stories in the autism community. Elopement–running away–is real and serious.

I’m always caught in what to do when these stories come up in the media. The stories affect me greatly as this is one of the big fears of an autism parent. It affects me even more when I think of the fear for the lost autistic. I remember being lost. I remember the terror. Most of the stories area about kids, and I know I was a much more capable kid than many of the autistics mentioned in those news stories. I can only imagine how terrifying it must be for the lost autistic. I feel like anything I write could trivialize their experiences.

I think I have to get over that. When I talk to the search and rescue people, they tell me it is valuable to raise awareness.

Of course, I’m prompted to write this after the recent, tragic story about James Delorey, an autistic child who was lost in the cold of Cape Breton, Canada for two nights. He was found, but still died of hypothermia.

I wanted to write about search and rescue, from the perspective of a parent of an autistic. But, this isn’t something I am really well read about. So, thankfully Alex Bain over at the RunMan blog have an excellent post on this as a part of their condolences to the family on Master Delorey’s passing. I am borrowing their YouTube content, but do take the time to read the post (and bookmark the blog–it is excellent!)

They were interviewed about search and rescue by CBC TV Compass News Interview and CBC Radio Island Morning interview.

Here is the video from the TV interview

Here is audio from the radio interview with Alex’s mother, Janet Norman Bain:

One piece of advice that Alex has given on his blog in the past, and in this post, is the use of an ID tag or bracelet. Here is an image of his bracelet:

I have one of these, as does everyone in my family. You can put these on shoes, cliping them to laces/straps. That’s where we put them since (a) I am forgetful and will leave it off much of the time and (b) my kid doesn’t like bracelets.

Alex gives more information about ID bracelets in another post on his blog.

As I said, and you have likely noticed, I don’t tend to write about these stories. Keeping stories like this in the news is important. It lets the rescue workers–and the people paying them–know they are valued.

Letting people know they are valued is important in general, in my opinion. I tend to contact (email or phone) people who do cool things–like researchers and, well, rescue workers. I’m not saying we need big phone-in campaigns for rescue workers, but if the inspiration strikes, don’t feel shy about dropping an email or commenting on a news story thanking them.

If I had a lost typical kid, I’d probably defer to the search and rescue team’s expertise. By that I mean that I would let them ask the questions about my child and trust that their experience and expertise would guide them to the correct questions (again, for the most part! I’d still have things to offer in addition to their questions)

However, with a disabled child, I keep thinking ahead as to what I would want to tell the Search and Rescue team. Really, I think that I’d need to educate the Search and Rescue team about how my kid is likely very different from any they’ve helped before.

First bit of advice–call the police sooner rather than later. The police won’t mind a second phone call with a message of “you don’t have to send a car, we found the kid”.

The sorts of things to tell the search and rescue team that I’ve thought of and heard from other parents (and let me know if you have others or find these wrong for any reason)

1) What is the person’s “cognitive” age. If they are looking for a 10 year old, they have certain expectations. If you tell them, “this kid cognitively is more like a 4 year old” that resets a lot of expectations.

You may have to tell this this repeatedly.

2) Can the person talk? They are expecting someone verbal.

3) if the person can talk, will he she respond to someone calling out their name? That can change the search methods dramatically.

4) What is the person wearing? One search and rescue person I talked to gave the example of a case where the team didn’t ask the parents this. They assumed that since the kid was about 10, he had dressed himself and that the parents probably didn’t recall what the kid was wearing. If you are dressing your kid still at that age, you may have a better idea what the kid is wearing.

5) Does the person have a restricted diet. If they find a lost kid and offer gatorade or some other rehydration drink, the person may reject it. Strongly. The person may reject other foods and/or drinks. They should be prepared for this.

6) Does the person have dietary restrictions. Whatever you think of diets like GFCF, if a person is on a restricted diet, the rescue workers should know not to offer certain foods.

7) Does the person have a fear of medical workers? A person in a white lab coat may seem nice and comforting to some people, but could be terrorizing to another. If so, the teams should know.

8) Does the person still wear a diaper? They (a) should be prepared with new ones and (b) may want to be on the lookout for a discarded diaper in their search. Some kids can take the diapers off, but can’t put pants/shoes back on. This would mean (a) look out for the clothes and (b) be prepared for the kid to show even more signs of exposure.

9) Is the person on any medications? What is the person like without the medication or on withdrawal from the medication?

10) Does the person have very special interests? This may be a good thing to coax a person out of hiding, and to calm the person after being found. Also, the rescue workers should know that they may have to discuss a single subject over and over until you show up.

11) Just because a person doesn’t talk doesn’t mean that he/she isn’t aware of what is going on.

12) What is calming to the person? Music may calm one person and irritate another. Some people might be sensory seekers, other sensory avoiders. The rescue workers should know for when they find the person.

These are just some of the suggestions I’ve heard from parents. Every person will be different and I know that search and rescue teams are aware of this. But, some people are very different from most of their experiences. Disabled kids, for example. Autistics. Be prepared to educate the search and rescue team about specific details about your loved one.

This is not my area of expertise by far. If you see anything that you think should be changed, don’t be shy. Let me know. I have tried to make this age-neutral, but as a parent I am biased towards talking about children and that probably shows.

Rescue workers are heroes. I think we all hurt a little when someone goes missing and we all cheer a little when someone is found, even if that person is thousands of miles away.