My April Fool


There are many people who advocate for autism awareness and acceptance better than I.

As another April rolls around and so many campaigns go forward to integrate autism into our collective consciousness, I find that my greatest impulse is to share my undying admiration for my ASD son, who is growing into a delightful man. He is mercurial, goofy, meticulous, and single-minded. He is sensitive, intuitive, impulsive, and hyper-empathetic. He worries about death, separation and growing up.

Most of all, he is vulnerable. He is aware of a complex world in which many things are just beyond his reach and so craves sameness and routine. He wants those he loves to be always near him. The heavy mantle of trust he places on us is never a burden because within it is his precious heart that gives love so freely it makes us dizzy with delight. All his emotions are distilled down to their purest form, and there are moments when I am temporarily daunted and disarmed by the intensity.

He is, I have understood for many years, the embodiment of the greatest joys and fears of all humans. He is the precious natural resource we have been charged to preserve. We are honored by the task and hope to be worthy of it, and of him.

The Mystery of 2009 Returns


Tonight we went out for an early dinner, and I could not convince the boy to tear his eyes away from the iPod. Usually he will at least look out the window at the cows on the hillside. Nothing doing. He met my eyes and said with frustration, “Mom, I am just too afraid of the world.”


“It’s just since 2009, when I was 14 and I saw the dates.”

“What dates?”

“Here, let me show you.”

He taps gently, furiously, and precisely on my phone, spending a lot of time on the Wurdle app, and then hands it back to me and sighs.

“Never mind, I can’t find it.” But then he takes it back and opens the calendar. Nothing remarkable.

“Dates. Birthdays. Worrying about death.” He hands back the phone and puts his earbuds back in.

Conversation over.

This is the beauty of blogging. I can go back to the summer of 2009 and see what I wrote – because the dates and the fear and this specific kind of withdrawal were all new to us then. But even after reading what I wrote then I don’t really know why all of those fears showed up today or how long they will stay – it could be as simple as the disruption of a half day at school or the disappearance of his memory bracelet from his dead friend. Or perhaps it is the big birthday that is coming up soon – or maybe it’s my worry about that reflected on him. He has my feelings before I do sometimes, I think.

Spring is coming; we’ll figure it out.

A Direct Line to Heaven

When our boy was small and we were still trying to figure out what was happening with him, I often said that he was a little closer to heaven and to hell than the rest of us. He was – and is – so much more in touch with his emotions than with the practical world and it magnifies both his joy and his pain in any given situation. As one can imagine, it is a gift and and a curse, but as a parent I place much more value on his gift for presenting vivid, unvarnished snapshots of the most fundamental joys and sorrows in life. This is never clearer than when there has been a death of someone close to him.

He recently lost a classmate to a short, intense battle with leukemia. It all happened while he was at camp, and this turn of events still dominates his re-entry into home and school. He has panic attacks most mornings at school, causing physical and behavioral distress, and we enlisted the help of the school adjustment counselor and the nurse to address his worries.

Earlier this week I met with his teacher and behaviorist who told me that his friend’s parents would be visiting the school to accept a big card that many students from the high school signed honoring their lost classmate.  Leading up to this, our boy was writing down his feelings in a letter to his friend JM and they showed it to me – it was phenomenal, full of apologies for being away while he was sick and a long list of people who miss him. He is really working things through with the counselor, which seems to be making a difference, because he appears to be having fewer the panic attacks. They said that he printed out a photo of JM and drew a gravesite on it. Sometimes he puts his hands on the picture and prays to him (which makes the adults in the classroom cry). When he came home from school that afternoon he sat with me and showed me a bracelet JM’s mother gave him with JM’s name and dates on it. He said that it was good to see his parents and to know that JM’s mom misses him too. I asked him if he cried. He said yes.

We went to the dump that same afternoon and on the way back we passed our church (we do not attend often – singing and crowds, you know) and I told him the church was empty and asked if he wanted to say a prayer for JM. He said yes.

We went in, and I reminded him about the presence of the Holy Spirit and about genuflecting and then helped him say a couple of prayers – he kneeled and held his hands in perfect position; so earnest. I asked if he wanted to go or stay and say some of his own prayers. He said stay. He told JM that he was sorry for missing his funeral and that he hopes he is happy in heaven. Then he closed his eyes, bowed his head and put his hand over his heart and said very quietly,

“In peace. In peace. In peace. In peace.”

It was as transcendent as anything I have ever seen in church. He was quiet for awhile and then said he was ready to leave. I asked him he he felt any better. He said yes.

As we got in the car he said.

“Boy, I really can’t wait for Halloween.”


“So I can see JM’s ghost!!”

I couldn’t help it, I burst out laughing.

“Was that a funny thing to say?”

I asked him if he thinks ghosts are real.

“Noooo. But I still can’t wait for Halloween.”

I asked him if he knows that I am totally in love with him.

He said yes.

Day 1: I Miss the Grocery Store Rules

Off to camp for just over 24 hours and everything was just fine until we went to the grocery store and realized I only have to make one kind of dinner tonight. No special burger, dog, or pizza, just the regular stuff. I was okay with all that – happy, even – then, stashed under the checkout on the way out, I saw the ice melt with the Road Runner on the package, and no one said “Beep! Beep!” in my ear. I realized that for the next several weeks I will not need to invoke the local grocery store rules:

  • No Road Runner sounds.
  • No Tigger bounces.
  • No yodeling.
  • No skipping.
  • No chasing.
  • No DVDs.
  • No Scooby Doo gummy snacks.
  • No buying every single container of lemon sorbet, box of Rice Chex, or package of gluten free chocolate chip muffins (one of each only).

There are dozens more and they will all come back to me every time I go to a different store. There will be days when the suspension of the rules will come as the relief it is supposed to be, but today there’s just an empty space where the “Beep Beep!” usually is.

The Pre-Tromp Romp

Now is a good time to note that, however camp turns out, we have learned and grown enough in the last two weeks to make it worth it. From a delightful and heartwarming exchange with the creators of Hoops & Yoyo to the deepest conversations ever with our boy about growing up and what camp is for, we have already made great strides. We have packed a summer’s worth of activity into one week and watching our growing children do the same things they always have shows us how much they have grown physically and emotionally. So, for a moment, we smile and breathe easier, understanding that we were a little better equipped for change than we thought. Hearts full, fingers crossed – here we go.

Photo: a parade of sparklers.

Tromping Back to Camp

We love the Hallmark characters Hoops & Yoyo, and have for many years. They provided our first family doubled-over-in-front-of-the-computer moment, and our youngest memorized all of the dialogue from their tale of The Runaway Marshmallow (watch them all – you won’t be sorry). But even as we continue to buy Hoops & Yoyo greeting cards it has been a while since our marshmallow moments. Now our older boy is going to camp – sleep away camp – for a long time. We never really thought we would find a camp that would meet his needs and still be camp. It has been a long process to get to this point and I still can’t write about it quite yet except to say that the dialogue from The Runaway Marshmallow is all that stands between me and tears when I think about separating from my boy. We know that it is the right thing; we know that he will love it; we know it will be hard for all of us to not be together as a family for a large part of the summer. And so we make light of it by making all references to camp as “tromping back to camp!” I hope I will be able to write about it in a good way, and if not, well then I’ll be be back in September. The tromping begins next week; wish us luck.

Hug Me Elmo.

This is from a couple of years ago and it is a sweet photo but at this moment it is an example of all I want to overcome.  Now, suddenly, as adulthood looms for real, the endearing photo of a birthday hug from Elmo only tells me that we need to do more to make the adult world accessible and palatable – no, joyful – to our boy.  Adulthood is daunting to all of us, so how do we differentiate childlike from childish, nurturing from insulation, love from coddling, wisdom from denial, bravery from cruelty?  The lines between all of these things shift on me, all day, every day.

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.