It’s April and I’m praying for Sky

pegasus1April is Autism Awareness Month and I’ve been meaning to write about something, or someone rather.
His name is Sky Walker Steuernagel, he is 18 and he is profoundly affected by autism. He has been in police custody in Portage County, Ohio since Jan. 29 for the beating and subsequent death of his mother, Dr. Trudy Steuernagel, 60, who was a political science professor at Kent State University.

 I first learned of Sky, and his mother Trudy, on an internet autism forum I joined last December. And on that same forum, I learned of her death. It was such crushing, gut-punching news for the fellow members of the forum that their usual volume of lengthy posts dried up in silence for awhile. It touched on so many issues that no one could really find the words. But now, in addition to the Ohio press, the story is getting more mainstream attention – there is an article in the April 20th issue of People magazine as well as a much-debated mention in a Salon.com article. The postings have picked up now, many of them with a common thread – fear.
We all want awareness to our cause, but how will this tragedy play out among the general neurotypical public? Will it be the mistaken kind of awareness of autism – that those who suffer from it can turn into dangerous and violent individuals who are less than human, not to be trusted as family members or even playmates for your children, not to be included?
I’m sure that might be true for a small few. There is a minefield of misunderstandings when it comes to autism and the general public. Meltdowns and tantrums, which are rather common among our children, aren’t pretty, we don’t tend to wax poetic about those moments because when they happen to our children we know they are trying to communicate something that their words cannot. We hate ourselves for not understanding those blow-ups, those sensory-overloaded tempests, but in our darkest of hearts, we fear those times, we have never had the odds on our side and we see this tragedy on more personal terms – could that be me someday – could that ever be us?
 And sometimes we hate the neurotypical community for their lack of understanding, for we throw you all in with the gape-faced man who shook his head at us in the supermarket while our child bellowed like a banshee amid the produce, we add you alongside the woman that stood by in horror and scolding commentary while we tried to comfort and contain the flapping arms of our daughter who didn’t want to leave the beautiful fountain at the zoo. But fear, hate and misunderstanding grow best in the dark, where there is no awareness, no light and no trust.
 Sometimes, while we are doing our very best suffering, we also feel we our doing our very best loving. There is such surrender in the kind of loving we learn while living with our kids. Unfortunately, self-love, self-awareness, takes a backseat to this “unconditional love” – we find solace in platitudes. And, like water on a rock, we slowly erode. We quit reaching out to the NT world and stay tucked away with our special children. We tolerate the intolerable to our own detriment. We decide our pain is unique when in reality you can’t measure sorrow. Our rain cloud may be bigger at times but in the end we were all washed in the same rain. The problem is we tend to hog the umbrella. We start to slowly lose our ability to sympathize with others, to interact with friends – their more common complaints pale in comparison to our magnificent sorrow. Their lives and the details of their lives sounding like so much vacuous twaddle – so we start to circle the wagons, dig the moat, barricade ourselves from the very world we so desperately miss. These are the gentle failings of the parents of children on the spectrum, but they are the most dangerous.
Trudy Steuernagel even wrote of those failings in some opinion pieces for Kent State’s college newspaper. “I had no patience for good and decent colleagues who told me how busy they were,” she wrote. “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.”
This was an article from last March. Sky was 17 then. He is now a 6”1’, 200-pound 18-year old. I can’t imagine he was much smaller just 10 months ago when he was lashing out at that closed door. These good and decent colleagues are quoted in a couple of  the news articles I have read, saying that Trudy always felt like Sky’s outbursts were manageable.  Perhaps, despite the very evidence in print, she had slowly elevated her ability to manage Sky in the eyes of her colleagues. They talk of her in such glowing and kind terms there is no doubt that she was admired and deeply respected. Nor is there any doubt of her dedication to her son. Another colleague, when discussing Sky’s current future, said “Trudy more than anything would want her son taken care of, but she also would recognize that she wouldn’t want anyone else to be at risk.”  That quote speaks volumes. She put Sky first, before comfort, before friendship, before herself . This is not uncommon in our community, but it isn’t healthy or safe. I was rereading some older posts on the autism forum that  Trudy had written. One included some words of encouragement to a young mother who was struggling with her newly diagnosed 4-year-old. Trudy said “I know how hard it is to stop worrying about the future, but the present is far too important to waste on worrying about things that may never happen.”
The present is important, and it’s true that wasting your time worrying about what may come can rob you of your joy, especially when it is in scarce supply. I don’t know how or if Trudy’s death could have been prevented. Hindsight is rarely helpful. All I know is that , for me, their story has a bit  of cautionary, uncomfortable truth in it. That the more we tolerate, the more we isolate. And while we may keep our neurotypical friends, family and even strangers from the the harm and discomfort we feel our lives offer at times, we are the ones ulitimately who are harmed.
As for Sky, he remains in the custody of Portage County police. According to the latest news articles I could find on his case he has been ruled incompetent to stand trial and has a court-appointed guardian. His lawyers entered a “not guilty” plea for him March 23. God willing, the judge for his case will send it on to civil court where Sky could either be ordered to a mental-health facility or released. The best outcome, the one I am praying for, is that he is placed in a group home. 
As for Trudy, I was wondering what she was thinking about when she chose her user name on the autism forum. Until her death, I had known of her only as “Pegasus.”  She even had an icon of the horse-god of greek mythology next to her name.
Pegasus, according to legend, was fathered by Poseidon and carried thunderbolts for Zeus. He avoided being captured by rising to the heavens as a constellation. I find that comforting. I am told that in the late summer you can see this constellation high in the night sky. I for one will be looking for that beautiful outline and remembering a brave woman, who reminds me that even when doing the bidding of the Gods, I must keep myself  on my list of things to fight for.

When life hands you a rusty-spoon day, call for help!

Simpler times - ah life!

Simpler times - ah life!

I have from time to time, rated particularly challenging days with my all-boy progeny as “rusty spoon” days.
These are the days when I report to my husband that if time travel were possible I would head back to the early 90s and tear out my ovaries with a rusty spoon.  I tend to dabble in metaphorical sadism when I am at my worst. And obviously, with time travel an impossibility, there is no need to worry that I will be castrating myself with rundown flatware any time soon. Also, this kind of hyperbole has great shock value – it gets my feelings across in a graphic, attention-grabbing way, that my husband can read as clearly as a red-flag at the beach when the currents are too high for one’s personal safety.
Obviously, it’s a cry for help.  I realize this kind of black humor is frowned upon by decent mothers and would-be mothers everywhere, but then they are not in my boat, nor am I in theirs so, I will leave them to come up with their own metaphors for crying “Uncle”.
These women would also find no solace or humor in the saying “mothers of teenagers know why animals eat their young.” But, yesterday, I considered this as a possible tattoo with only slightly less seriousness than my H.G. Wells-inspired spoon surgery.
It started when I went off my nut about the condition of the family room and began threatening removal of any and all fun possibilities in technicolor language until said mess was cleaned up.  It finished with my dear teen digging in his belligerent heels to the injustice of it all and flipping me a certain gesture that I can say with all honesty I never imagined in my wildest dreams would be intended for me. I’m not naive, I expected the gesture would be exercised at some point in his adolescence, like when the first mad driver cut him off in traffic. But, not when the first mad mother asks him to pick up a few dishes and socks. I was so shocked I actually called my husband at work – which is the equivalent of “Now you’ve done it” around here. He‘s like my fire extinguisher – “break glass only in an emergency“.  My husband is a passionate *cough* if not volatile devotee of RESPECT. Perhaps it’s the Navy man in him, but calling Dad, is not done lightly. I am a very independent person. I pride myself on managing home, hearth and unruly boy brood with a minimum of whining. Mostly because reaching the Navigator on an aircraft carrier is a lot like trying to order pizza online – it’s such a huge hassle you can’t even remember why you wanted to do it in the first place. Sometimes this is a good thing, I hang up out of frustration with something new to be pissed about.
Another first of my rusty spoon day- my dear teen got to hear me get in touch with a phrase I vowed never to say to my own kids, “Just wait ‘til your father gets home.” 
I guess it was a day of firsts for us. And, like all adventures in parenting, we both learned something.  I hope that my son learned there are some lines you shouldn’t cross, (that is a direct quote from his Dad) and that paying the piper is more expensive than listening to her pipe, and lastly, waiting until your father comes home is a long and uneasy wait.
I learned that my little boy is not such a little boy anymore, and that tirades aside, respect will have to be a two-way street if I want to get through these coming years.  I will have to take a page from my husband’s book as well – talk less and act more.
Also, I am going to try giving more responsibility to the irresponsible  and see how that goes.  My eldest has the “Tom Sawyer trick” to doing chores – if done badly enough perhaps someone else will step in and do them. And, I hate to say it, it has worked in the past.  I am also going to stick to my guns when it comes to the consequences. I have trouble staying the course when my children are unhappy, and unfortunately they know this. As my husband says, they play me.
 I have to remind myself that while I can’t always give them everything they want, I do give them everything they need. I have to remind myself that while my teen may hate me from time to time I can love him enough to make up the difference. And loving him doesn’t mean loving his behavior.  In a past argument he accused me of only caring about his future, and I am guilty as charged. I need to stay focused on what he can do today.  I’m sure I can step back a bit, but I will not step away.
While having two D’s on his report card “is still passing” and that’s hunky dory with him, the consequences that loom are summer school and 3 months of restriction. While he believes homework is just busy work and “beneath him” so too will be my extraneous housework, chores and chauffeur duties. While I may have to watch him flush away some opportunities and close some doors that could have been open to him, I will love him enough to let him make his own mistakes and be a soft place to land when he falls.
And should adolescence rear it’s ugly head again as it most likely will in the near future (my middle son turns 13 in two weeks!), I will try to remember that while standing knee-deep in the flow of life, sometimes all you can do is roll up your pants and call a plumber.