C-isms

“Mommy, could you get me a little brother?”

As we were driving by the extinct volcano near our house in Ga’s convertible, “If this volcano erupted, would we have to put the top up?”

“Do you pick up stuff on Ash Wednesday because the volcano ash will hurt it?”

“I’m tired of sleeping in my bed.”

“I always like to talk to little people like me.”

“Is there a life cycle for poop?”

“That’s how I like to spend my money. On cheap stuff.”

As he’s observing the hair on his legs, “Mommy? I think I’m getting too haired.”

“Mommy, I think I should just skip 4th grade and go straight on to college.”

That’s exactly how it feels

     The other day I received a phone call that ranked right up there with the most disturbing calls a person could ever get. It was my son’s friend, screaming that he couldn’t wake up his dad and he didn’t know what to do. They have an internet phone, and even if you can call the local 911, the 911 operator can’t get a location from the call. I asked him his address, but he didn’t know it. He didn’t know his Mom’s cell phone number or where she worked.

     I did the only thing I could think of to do: I told him I’d be there in five minutes, hung up the phone, and raced out the door. I sped to the fire station, retrieved the EMTs and led them to the house. It was, unfortunately, much too late. Tragically, the man was dead.

     The next several hours were awful, as you might imagine. Through it all, in the back of my mind, I wondered how to tell C. He’s had a long, lingering fear of death, as many children do. However, his fear is magnified by autism, and has been, in the past, incredibly debilitating for his emotional health. I am convinced that Dog, somehow the longest living dog following a stage IV mediastinal lymphoma diagnosis (over three years now), survived simply because he knew C probably couldn’t handle it if he died at that time. Good dog.

     So it was with trepidation that Husband and I sat C down the next morning to tell him what had happened to his friend’s dad. C adored this man who was so fun-loving and kind to him. I know C’s initial response was only the tip of the iceberg; much of what he feels will not come out for weeks, and it will come out in ways we probably can’t even anticipate. Yet C summed up exactly how he felt in a way that almost took my breath away with its insight.

     “When someone dies,” he said through his tears, “it feels like all my legos are broken.”

Parents, please have a piece of paper with your home address, names, and pertinent phone numbers where everyone can find it. Arrange a “safe house” with your neighbor so your child knows s/he can go there if needed. This man couldn’t be helped, but it pains me to think of a person who could benefit from emergency services dying needlessly simply because a child couldn’t summon help.

Is it any wonder I’m finding gray hair?

     Lately I’ve been trying to give C a little more independence. Even though he looks (and often acts) five, he is in fact nine years old, and he’s been telling us exactly how he feels about his 7:45 bedtime (it’s for babies, even though he needs his 11 hours of sleep desperately), his booster seat (also for babies, but he’s not even 50 pounds yet and is a foot shorter than most of his peers), and anything else he feels is not deserving of his nine-year old status.

     So as I watched him round the corner into our small town library to return some books while I waited in the car, I thought it might be time to revisit the subject of “stranger danger” and how C would handle an approach from a stranger without me by his side. We’ve had the conversation before (see here), with minimal success.

     “C,” I asked upon his return, “what would you do, if after you got around the corner where you couldn’t see Mommy anymore, a man came up to you and asked you to help him find his puppy?” 

     “Oh, I’d help him, that would be nice,” C said without missing a beat.

     I did my best to explain why he should never do that and what he should do instead, complete with running, screaming, and kicking if he had to.

     “Kicking?” he asked, shocked. “Wouldn’t I get arrested?”

     I once again explained that he should do whatever he needed to do to get away from someone offering him candy, asking to help find a lost puppy, or to get in their car. He seemed perplexed. I asked the question again.

     “I would run,” he said, “as fast as I could to your car, and ask you for a piece of paper and a pencil so I could put up a ‘lost’ poster on the tree.”

Breaking bread and bridges

     I remember the day I found out I was pregnant - I was scared to death. As in complete panic freak-out of epic proportions. I’m not really sure why, although I wonder if my sub-conscious self knew more about what was to come than I realized.

     Then I found a wonderful little community of also due in April, 2001 mommies on a web bulletin board. These people became my tribe, my friends, my confidants, and those that understood my not-so-irrational fear about becoming a parent. We bonded to the point of talking about getting together in real life on the kids’ fifth birthdays.

     Then the babies came. Mine earlier than almost everyone else’s. Once we all reconvened weeks later, it became clear to me that my tribe no longer felt like my own. It didn’t come from them; they were as supportive as can be. This was certainly self-imposed, but it felt like the beginning of a long few years of distance and differentness from other parents. Our experiences were so different starting from birth that I simply couldn’t see how to bridge what felt like a huge gulf between us. What should have been an experience of joy, excitement and happiness was for us a time of nothing short of terror. There weren’t moments of enjoying this little bundle that had arrived – instead it was wondering if this little bundle was going to survive each day.

     I stuck with the group for a few years, fading in and out as I felt comfortable. But it was just too painful as the gulf continued to widen while our children grew. Their kids were catching colds and eating solid food while mine was making the rounds of neurologists and feeding therapists. There no longer seemed to be any commonalities between us beyond birthdates.

     Finally, it became too big an ocean for me to bridge, and I disappeared for good, only to be contacted by one of them again when her younger daughter started to show signs of autism. She and I formed a tenuous new relationship and have kept in touch via facebook, where I notice all the other “Born in April, 2001″ mommies seem to reside, still friends, still supporting each other like friends do.

     And I find myself wondering once again where I fit. I still think of these caring, wonderful women as an important part of my life, but they also represent such incredible pain to me I wonder if one can ever really go home again. I wonder if a bridge, so completely broken, can ever be rebuilt.

We can’t always get what we want, but sometimes we get what we need

     Fair doesn’t mean that everyone is treated the same, but that everyone gets what he deserves and needs.

     I don’t remember where I came across this sentiment, but I remember the day I did. It was the first day this year that C wore his hat to school after opening the wound on his head for the zillionth time in the two years since it first appeared. As he walked nervously onto the playground that morning, he was the brunt of a rude comment from his frienemy.

     “Why does C get to wear a hat when I don’t? I never get to wear a hat to school! IT’S NOT FAIR!” he exclaimed in his own version of a tantrum for which I had no patience. C started to cry, and I wanted to unload all of my frustration upon this child who torments C nearly as often as he is nice to him. Is it fair that C has this compulsive skin picking disorder that leaves him scabbed and scarred? Is it fair that C has to be friends with a child I would, under different circumstances, ban from our home simply because he is such a terrible friend? Is it fair that I had to leave a crying child at school simply because if I took him home in that moment, he might never return? 

     Somehow that day, I found the statement I quoted above. It has meanings on so many levels for our special children: not the least of which applies directly to the special education services they so desperately need. Now we have hat privileges written directly into C’s IEP so that we don’t have to jump through any hoops next time around.

     Even the title of my blog, What We Need, has meaning on so many different levels. I’m still not sure, two and half years after starting this blog that I have solved the question of just what it is we need. And I’m not sure  C received what he needed on that particular day when his so-called friend made him cry before they even walked into the building. Yet somehow I did when I stumbled across the real meaning of fairness on that day when I needed it most.

     Here’s hoping that C, and all others like him, gets exactly what he deserves and needs.