Month: September 2012

16 September 2012

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.”

Why?

“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.

6 September 2012

It Had to be Done: Outgrowing Disney

In the end, we just couldn’t face it. Heat, lines, crowds, food, money. Too much. We’ve done our time in the Land (favorite thing ever: The Casey Junior Train, below) and the World and we figured if we went back we were setting patterns that would be the undoing of us, psychologically and and financially. It was the best decision we ever made, vacation-wise, even with the hurricane. We did not want to spend our few days together in theme park survival mode (and I fully admit that this is my problem, this crowd phobia) and we found a destination where everyone found their own space; in the the water, on the shore, sun and shade, together and apart, quietly. That, in large part, was what this end of summer jaunt was about – all of us developing a better sense of where our limits are and stretching them gently in the right directions, and coming to rest, together, at the end of each day.

It was the first vacation in a long time from which I returned not needing a vacation. Under the best of circumstances vacations can be stressful, and for many families with kids on the spectrum, traveling to unfamiliar territory can be daunting. And while we shy away from overly urban adventures we have still a managed to traverse St. Louis, Washington, D.C., New York and Los Angeles, partly by recognizing that animals and swimming must be on the itinerary.

Life is too short to go to too many of the same places twice. And I have to think that, because we needed to travel for family reasons when our kids were small, the rituals of airports and hotels were ingrained early and we are proud of the way all three of them rise to the occasion, time and again. The fun can bring stress (the TSA, packing special food, meds and myriad devices with their correlating cords, headphones and chargers) but this summer proved at last that sometimes, it’s just fun.

4 September 2012

So, How Was Camp?

I wish there was a simple answer to this question.  Was it the right thing to do? Yes. Are we glad we did it? Yes. Did it result in miraculous, instantly recognizable changes? In some of us, yes, but how if affected our boy and how it influences our next moves to plan for his transition to adulthood I am still not prepared to say. We still need to assess his physical health with regard to his diet and digestive system not to mention the dislocated knee (which appears to be fine). We also need to benchmark his academic skills and assess   his social development.  The latter shows greater depth and fluidity, but I can see the potential for him to fall into old patterns with old friends. He seems generally more communicative and more cooperative, though we are still in the glad-to-be-back-home honeymoon period.

Those miraculous, instantly recognizable changes allude to those of us left to fend for ourselves, boyless, at home. My own angst has been clearly documented here, but it must also be said that for all of our hand-wringing the most surprising change was that things here did not change nearly as much as we expected. Special diets, elaborate toy tableaus and the occasional Gerald Mc Boing Boing sounds are not as disruptive to our lives as we may have thought. In our case, the burdens of autism are not nearly as heavy as we were lead to expect – when he was gone we felt more far more emptiness than relief. In earlier years we may have felt it more than we did at this point but I feel the need to point out that the camp experience was more about him being away from us for his benefit, not our need to be without him. Some people really do not understand that. And we do recognize necessity that our other children need to know that his independence as an adult is just as important to us as theirs, which is a point that absolutely must be made with both actions and words. In reality, the hardest part of the camp experiment is that it is so lovely to have him home that we are loathe to think about ever letting him go away again (for the record, he is also perfectly fine with that).

And there’s the rub. The urge to become complacent is, at this early moment, almost irresistible. But we must keep our eye the prize of independence, or whatever measure of it we can hope to achieve. He is vulnerable – we know now that he can endure a lot but we also know that he may be just removed enough cognitively that he might be forced to endure things that he should not. He was in an environment that we knew would not exploit his good nature – where else can we possibly find that outside of home?

So camp, in the end, did not give us as many answers as we might have hoped, but it is making us rethink our questions.