The Blood Knows Where to Go

Last November, I read an article in the New York Times about the alarming number of people with developmental disabilities who die unexplained deaths while in state custody.  I couldn’t finish it through my tears.  The previous weeks had been largely devoted to transition planning and cognitive testing for our teenaged son, so my worries about his future were already close to the surface.  I usually am better at keeping a lid on my anxiety on the long term issues; I don’t think it’s fair to my other children to let autism dominate the family dialogue any more than it already does.  So after my decidedly lid-off response to the article, I went up to take a shower, which always helps me regain my equilibrium.

In my extremely nearsighted state I fumbled with the new razor I took with me into the shower, and nicked a bit of skin off of one of the knuckles on my left hand.  It bled a little bit but for what seemed like a long time, and I stood there in the steaming water, watching it channel through grooves in my skin, run off the side of my hand and disappear in the cascading water.  Maybe this is why people cut themselves, I thought, understanding for the first time why anyone would do such a thing.  The bracing clarity of pain and the fascination with flowing blood make other troubles fade, if only for a moment.  Having drawn blood, your instincts take over and stopping the flow becomes your only goal.   There’s a strange kind of release (adrenaline, I guess) in that kind of single-mindedness, especially when the pursuit of multiple goals is what is making you crazy.  I thought of my worries running down the drain with the hot water, and how what is terrifying in one moment can seem perfectly manageable in the next.

I haven’t been tempted to capture that feeling again in that way, but I understand better now the value of tackling challenges one at a time and setting short term goals rather than taking on the entire future at once.  And perhaps I should be a little more selective about what I read in the paper, and when.

The Best That We Can Do

We have all felt like this.  Sometimes I admire the ability to just put your head down and check out.  Totally underrated.  We did not stay for dessert.

True Colors

The other day I was trying to explain some of the more practical points about autistic behavior to people who work in schools but do not have a lot of interaction with autistic kids during their day (the event leading …

Free Us From All Anxiety

I went to Mass alone yesterday.  I usually have someone with me but I decided to go at the last minute; I needed to sort some things through.  It had been the kind of week that gave us a preview of things to come and some reminders of things we hoped were over.  At such times I like to go to Mass and check in with my parents in heaven.  I am grateful for the link they created in the common experience of going to Mass, back when the Church was a haven and when you felt guilty for not going.  Now I feel guilty when I go and when I don’t; betrayal weighs down both sides of the scales. The Golden Rule remains, though, and it is enough to bring me back.  I pray – head down eyes closed most of the time – through every Mass and wait for my favorite phrase:  “Free us from all anxiety as we wait in joyful hope…”  I hang on those words as I have ever since I can remember and they never fail to comfort.  I tell my children this; I do not know if they listen.

And so yesterday I prepared to lay my questions before God and family, knowing that the simple act of unburdening them in this way would bring some measure of peace.  Unlike many other Sundays, I was more confused than desperate. In fact, my issues were pretty typical: I wanted to come to terms with what it means for all of my children to grow up – dating, college, driving, cooking, cleaning, banking, living without me.  My job is to make them independent and if I succeed they leave me and if I fail they stay and drive me crazy.  Lonely versus crazy.  This was the problem du jour.  I needed a plan.

I listened to the priest make a reference to the movie The Exorcist, which I still have not seen because my mother – on the instructions of the Church – forbade it in 1973.  I imagined every kid in that church going home to stream it on Netflix.  I wonder if my own kids would be more terrorized by Linda Blair’s spinning head than they were the first time they saw the bleeding crucifix suspended over the altar.  It made me smile to think of that as we stood for the Profession of Faith.

I looked across the church and up at the balcony (the building is shaped like a cross with the altar in the middle) I saw a father with three boys and the one next to him was clearly autistic, fluttering his fingers and chattering away (but not audibly to me).

Several times after that I saw the Dad forcefully put this hand over the boys’ mouth and whisper in his ear, sometimes enveloping him in his arms as he spoke to him.  They boy did not seem upset or to resist his father’s embrace (the deep pressure probably felt good), but he didn’t appear to comply, either.  The other two children looked away.  The father was losing his cool, unaware that this was playing out in front of dozens of people, focused only on quieting a child who, compared to the toddlers and babies holding forth, was making very little sound.  Feeling both angry and empathetic I wanted to tell him that it isn’t worth it, that if being successful in church requires such physical restraint then maybe he needs to redefine success.  I recalled earlier times when my favorite thing about that cross-shaped church is that it has nine exits – nine ways to escape if (when) things go south.  Sometimes – rarely – we made it all the way through, but the plan of action was the same for Mass as everywhere else we went: don’t go anywhere that you can’t leave, and be prepared to leave at a moment’s notice.  Sit near the door.

The last time we went to church as a family was this past Christmas Eve, and for most of the Mass I stood behind my son – who is taller than me – trying to persuade him to keep the Kermit the Frog he had smuggled in his coat from making an appearance. The conversation went something like this:

“Why did you bring Kermit?”

“So he could hear the singing.”  He shows me that he is holding Kermit’s hands together as if he is praying.  He looks at me and then uses his other hand to clamp Kermit’s mouth closed.  With some effort, I give him a stern look.

“He needs to stay in your coat.” His eyes widened.

“Is it because he is naked?”

Tears of mirth and joy welled up in my eyes to know that he enjoyed the singing and that he was trying so earnestly to understand the impropriety of bringing a large stuffed frog to church.  I remembered how we tried to get him accustomed to the routine of the Mass, but it was never predictable enough – he was constantly startled by people suddenly bursting into song (and I noticed that not everything is sung at every Mass; it is pretty random as far as I can tell).   For him, if it wasn’t a wedding or a funeral, each of which clearly have a purpose, Mass was something to be survived.   With the help of many lovely people, we managed to get him through religious education and to make his First Communion but it was clear that the very stress of going was draining the spirituality out of the whole experience for everyone.  I prayed that the man in the balcony would learn the same lesson, and soon.

Mass with Kermit means progress, albeit the kind I never expected, and I guess that’s the point.  Drawing a map of other people’s lives as a way of defining my own will only take me so far.  Sometimes the most you can do is sit near the door.

Tyranny of the Snowflake Plates

We have plastic plates with white dots on them that look very much like snowflakes, and this morning my boy came in and said, “Mom, you need to put these snowflake plates away.”  All of the holiday stuff was stowed last weekend, but I usually keep these plate out because, well, it’s still winter.  ”They are TOO Christmassy.”  he says. “How about we just think of them as polka dot plates?” suggests my clever girl.  Nothing doing.  ”Put them away,” he says, “they make me worried.”

Everything its place at its proper moment; this how he keeps from being overwhelmed and thus he structures our lives for us by compelling us to manage the details properly. Sometimes, just so he knows that change is doable, we will do something really crazy like have hamburgers for lunch at home (“It’s not dark!  They are only for dinner!”) or ask him to take a shower in the morning (“HMPH!”).

But this time, on this subzero no school Monday holiday (“No PJs all day, right, Mom?”), I will store the plates away until the day after Thanksgiving, when he will undoubtedly ask for them.

I should probably take the Christmas wreath off of the front porch, too.

***

PS  The cookies in the photo are salted shortbread cookies and the recipe can be found here.

Friendship, Take Two

A lot of people talk about becoming alienated from friends – even family – when they have a child with autism.  Part of it is the total preoccupation that comes with addressing a newly diagnosed child’s needs – you don’t have the energy or the interest in keeping up your end of the conversation on things that used to matter. Many marriages do not survive this phase, let alone friendships.  Granted, for some people it isn’t a phase, because depending on the intensity of the child’s needs, that preoccupation doesn’t ever subside and there is a full-scale retreat into a necessarily specialized world.  But there is usually a point at which you look up from your computer or IEP or daily schedule or home log and think, “I miss my old friends and the way I used to be with them.”  Despite the fabulous relationships and real camaraderie I have with the friends I have made with kids on the spectrum, I get the feeling that I have somehow lost something so valuable to me in my younger years.  It’s real work to remember the person I was and to figure out whether any of the old me is left.  It helps to have a partner who shares the emotional care of our child, especially because my parents have already passed and taken with them the objective (kind of) view of my younger self.  I know we change as we get older and that midlife naturally brings on a certain kind of navel gazing and regret, but there’s nothing like parenting a person with an alternate reality to really turn your self-image on its head, so to speak.  But if you have typical children you are also raising you need to have one food planted firmly in their world, and that, too, can be alarming as you remember your clueless adolescent years and find yourself alternately missing those times and being embarrassed by them.  At this point I am haunted by my self-absorbed teenage self and the graying face in the mirror – all the versions of me in-between are currently out to lunch.

But now, suddenly, I am encountering friends who are coping with challenges that I grappled with earlier in my life.  Aging parents and chemically dependent relatives, like an autism diagnosis, are now sending others into crisis mode and now I am the one on the outside looking in, and I see that it is hard to know how to be a friend to someone immersed in crisis.   I have to remind myself to be a good listener, and to understand when to ask questions and when to change the subject.  The hardest thing, surprisingly, is to not get frustrated with them when I think they are focusing on the wrong thing.  When talking with parents of children with special needs you develop a brutal battlefield type of honesty that allows you to tell someone to find a new doctor, hire a lawyer, or call the Department of Education.  That kind of candor does not serve well in these situations, any more than it did for me in that first year after the autism diagnosis when I could not bear to take my son in for some kinds of testing because I knew it would be torture for him.  People who tried to push me into action only sent me deeper into the cocoon I created for my family as we plotted our next move, which I hoped would result in the emergence of a fully recovered child.  With the miraculous help of the internet, I plotted the steps that I could take – I think of that scene in Indiana Jones and the Last Crusade, in which Harrison Ford has to close his eyes and take the one big step to cross the chasm that stands between him and the Holy Grail.  It is a hold your breath moment, followed by many moments in which people trip lightly over the same threshold that took such courage for Indy to breach because he has led the way.  You can’t push anyone into acceptance or advocacy in a difficult situation; they have to take the first step themselves and in their own time.

As I think through this process of learning to properly reciprocate friendship again I recall a moment from last summer, when I visited a lifelong friend (some friendships did survive the crucible) in Iowa at her mother’s house, where I spent as much time as I did my own house.  I was so delighted to be back in Cedar Falls after so many years, showing my youngest son the old neighborhood.  I sat for a spell with my friend and her Mom, and we caught up on events old and new, and at the end of the conversation her mother observed, “You know, I thought that living on the east coast for all this time would have changed you, but you are just the same as you always were.”  Even though I have actively worked to preserve my inner Iowan, it wasn’t until that moment that I knew a kind of success at being myself.  All of the angst, all of the work, all of the proving myself in various venues, had not eroded who I was after all.  But there is still work to do getting back in touch and on track with friendships that have allowed autism to get in the way and to learn how to support people who are facing issues very different from ours.  That process remains work in progress.  I suppose that is what is known as life.

Washington Street, Cedar falls, Iowa, June 2011

Back on My Feet

It really did take this long to get back on my feet, although in reality I have been clomping around in my therapeutic sneakers since October.  All of those other things, though, the are still under repair – including the bathrooms.  The 6 week project is now more like a 6 month project, and we have just recently gotten back the results of the vocational assessment while we wait for other private testing to come back.  The rehabilitation, the construction, the October snowstorm, the testing, the college search, the holidays, and the preoccupation with the future have all taken their toll.  January is the time to hibernate and ruminate and make sense of it all.

Waiting for Happy Feet

It’s never a good sign when you find yourself trying to decide which part of your body hurts the most.  Without providing litany of complaints, suffice to say that a broken foot results in pain everywhere else, too.  I now understand all too well my mother’s gratitude at having her feet massaged when she arrived at hospice care – no morphine drip provides the same kind of joyous relief and that which emanates from properly rubbed feet.  Turns out that when your feet are happy the rest is sure to follow, and thus the opposite is also true.  Chronic pain emanating from the bottom up can make you an emotional wreck.

So when you rearrange the furniture in your daughter’s room, you cry.  When the Mother’s Day vase topples and breaks, you cry.  When you take that school picture sticker from second grade off the ugly bathroom mirror before they throw it in the dumpster, you cry.  When you find you are missing a family dinner far away, you cry.  When you move the preschool books to the attic, you cry.  And when you drive away from the special education collaborative where you have dropped your boy off for a vocational assessment you cry so hard you can’t breathe.

I don’t have much wisdom to glean from any of this other than I’d better work on healing my feet before they break my heart.

Sealed With a Kiss

Several years ago we remodeled our kids’ bathroom because it was bound to leak into the new kitchen directly below it.  In fact, the water damage to the ceiling was one of many reasons we needed to redo the kitchen in the first place.  Aside from poor construction, one of the reasons it leaked was our boy’s propensity to overfill the bath tub – a blue fiberglass monstrosity that never kept the water hot enough and wasn’t very deep.  These attributes were great for bathing babies but less than ideal for a boy who loves nothing more than to be fully immersed.  But back then we weren’t ready to part with the blue beast – for money and safety reasons - and remodeled the rest of the bathroom using copious amounts of caulk to keep it water tight.

Now it’s time to replace the tub, and our boy has opinions about that.  Will it be deeper?  Yes.  Will it be blue?  Thankfully, no.  Will it fit all of the boats from the Big Harbor?  Probably.  Will I be delighted?  We hope so.

So last weekend, we prepared him for the adjustments made necessary by construction – everyone sharing the one shower while the blue tub gets replaced.  We noted that it would take weeks to get it all done, but at the end of the first day he came home from school and asked if his new tub is ready yet.  We said no but took him upstairs that he would see where they had begun to remove it.  He gently placed his hand on the side where the tub joined the wall, and said, “I am going to give it a kiss goodbye.” 

And with a gentle smooch, he left and closed the door behind him.

Okay, that’s not what I meant

When I said that things were going to change I didn’t mean the next day.  I have had countless humbling experiences in my life but breaking my foot is in the top, oh, 100 and moving up the charts fast.  A loose sandal strap, an overabundance of enthusiasm at seeing an old friend, and a menacing threshold, and in an instant I am imprisoned in my house full of stairs (how have I not noticed this?) and faced with the prospect of being burden to friends and family for untold weeks.  There’s nothing like going up and down stairs on your butt to give you a little perspective, unless it’s sitting on a plastic stool in the shower with your trash bad-clad leg sticking outside of the curtain and then realizing the soap is above and  behind you.  Naturally, the stereo is up too loud to hope that a call for assistance would be answered but I’m too proud to let anyone see me in such a ridiculous posture anyway.  Humbling, indeed.

But I am doggedly determined to see the silver lining (but let the record show there is no such thing as a silver lining of any kind at 6am if there are crutches involved) and thus far there are a few notable glimmers.  First, our autistic son is the most empathetic and least likely to engage in emotional blackmail while doing things for me – and every time he passes by, he solicitously taps my big toe and smiles at me.  The others, while helpful to a point, roll their eyes and and ask for take-out pizza at every opportunity.  I have already collapsed in tears once, declaring that I have raised a passel of self-centered prima donnas, but then again that is the definition of adolescence, pretty much.  And just when I think they are doomed to a life lived with the House of Pizza on speed dial, they ask me to guide them through the process of cooking eggs for an after school snack, after which the kitchen still looks clean.  So, even though I hate the sound of it, I have a feeling we are all in for a lot of teachable moments.

And, one more beam cuts through the fog – now I have no excuse for not writing.