Sunday, June 25, 2006

In the imbalance

I realized yesterday why it's been over a year since I spent any time with my friend Kay.

Kay and I live more than two hours away from each other. We both work full-time, which makes getting together during the week exceedingly difficult. That leaves weekends. But Kay has a son, Sam, who is 18 months younger than Bud, so getting together on weekends means that we have to make a choice: get together without our boys and give up one of the only days each week that we have to spend with them, or get together with our boys and hope for the best.

When Bud was a toddler/preschooler and Sam was a baby/toddler, our time together was strained because of Bud's strong negative reaction to babies, and therefore to Sam. As they've gotten older, that dynamic has changed - and yet, no matter how we structure our playdates they never quite seem to work out. We've tried playdates at one house or the other, which were okay when Sam was at the developmental stage in which he enjoyed parallel play and preschool television shows. But Sam has passed those stages, and prefers play-acting scenes from Star Wars to reciting scripts from Teletubbies. And though Sam is a sweet, good-natured boy he is also a high-energy, fast-talking, quick-moving one, so the intensity of one-on-one playdates in small spaces with him is just too overwhelming for Bud. We've tried to meet for lunch - which was once okay, but is difficult these days because Bud has developed an aversion to restaurants and prefers to get meals that can be eaten in the car or taken home.

So this time we decided to meet in a place that was familiar to Bud - a science museum that he loves. He has spent a lot of time there, and it's a comfortable environment for him. It meant a three-hour road trip for Kay and Sam, but Kay said that if it increased the likelihood of success she was up for the journey.

I prepared Bud for a couple of days leading up to our museum playdate. He seemed fine with the plan, and even appeared to be looking forward to it. I had high hopes because the atmosphere in the museum would allow Sam to play and engage with other kids even if Bud was not interested in engaging, and it might even allow for some non-threatening parallel play for Bud.

But the moment we arrived at the museum, Bud turned into a Teletubby. He talked like a Teletubby, made noises like a Teletubby, moved like a Teletubby - and disengaged from the bulk of the museum experience. I found private moments to ask Bud if he could talk like Bud for a while. Several times he said that yes, he could do that, and he used his loud, clear Bud voice to communicate a variety of things: "I'm all done now!"; "Can we leave?"; "Can they go home?"; "It's time to go!" As Kay and Sam had spent three hours in the car to be with us, and as my opportunities to be with Kay have been so few, I was reluctant to leave after such a brief stay, so each time I explained to Bud that we would be staying for a little while longer, and without fanfare Bud returned to Teletubbyland.

As a result, Kay and I spent the afternoon engaging with our own sons, often on opposite ends of the museum, trying to fit in conversation in 30-second increments. Kay asked how Bud was doing in school and I tried to imagine how he must seem to her - this boy whom she only ever sees at his dysregulated worst. I wondered if the disconnect between the stories I told and the boy she saw was striking to her, and I wondered what conclusions that made her draw. For his part, Sam simply seemed confused by Bud, and at one point when we left for the bathroom, he said to his mom "I guess Bud is still just a little shy." So he gave Bud space and focused on all that the museum had to offer.

Toward the end of our afternoon, Kay and I found ourselves with a rare opportunity to chat, as our boys were engaged in activities in relative proximity to each other. She started filling me in on her life and for a few glorious moments we were having a real conversation, until in my peripheral vision I picked up a whirl of Bud and I heard a loud, unfamiliar cry. I spun around as a stunned Bud flew toward me, and in his wake I saw a small toddler, his arm in a sling, sprawled on the ground and wailing. His flustered mother was comforting him, and I looked to his grandmother: "Did he do that?" I asked pointing to Bud. She nodded, as the toddler's family gathered around him to make sure that his arm was okay, and that the damage was not critical. I offered a lame "I'm sorry," then turned to a still-stunned Bud who buried his face in my neck and whispered, "I'm so sorry I'm so sorry I'm so sorry." When the wailing had ceased and the boy was pronounced unharmed, the boy's father approached us, put his hand on Bud's shoulder and said "It's okay. He's fine. He's not hurt." Though I appreciated his reassurance, Bud and I both remained shaken.

When we finally climbed into the car at the end of the day, Bud devoured the picnic lunch that he'd refused to eat with our friends, then fell into a hard, deep sleep. I spent the ride home reviewing the day: What should I have done? What shouldn't I have done? Where do we go from here? Bud was in better spirits when we got home and the rest of the day passed quietly.

At bedtime, after stories were read and lights were out, I cuddled next to Bud and he threw his arm around me and put his smiling face nose-to-nose with mine.

"Was today a hard day or an easy day?" I asked him.

"A hard day."

"How did today make you feel?"

"Sad."

"What made you feel sad?"

"My friends."

"Because...?" I asked tentatively, not even sure what kind of response I was looking for.

Bud was quiet for a minute as he thought about the question. Then he said:

"I'm lonely of you."

It stung my heart.

I'm lonely of you. It wasn't Kay and Sam who bothered Bud. It was me. It was the way that I was because they were there.

I'm lonely of you. I don't want to share you. I don't want your attention focused on someone else. I want our time to be us. Just us. Just you and me.

I've been thinking about it all day. It explains so many difficult times - including his final days of school. Those days were not just dysregulating because the routine was different; they were difficult because I was there. Bud is always understanding of the commitments that take me away from him - I have to work, I have to go to a meeting, I have to be away from you but I will be back and then we will be together again. But my appearance at school made no sense to him - Here you are, at the place where you come when it's time to take me away. You do not have to be at work. You and I could climb into the car together and be off on a great adventure - but you are choosing not to do that. You are staying in this place where we don't have to stay. You are choosing to do something that is Not Right.

It also explains why he has done so well at the social functions that I knew from the start would be difficult for him - the weddings, the graduation parties, the family functions - when my full attention was focused on him; when all of my energy went into making sure he would be okay; when I didn't try to participate in the ongoing activity but just sat huddled with Bud on the sidelines - just as we do in church each week, sitting far in the back, away from everyone else, so that we can "Just watch." Conversely, it explains why he has done "well" during those events when I've engaged with other people but allowed him to overdose on screen time - when I've chatted and visited and laughed with other people while Bud has slipped deeper into a fantasy world; when I've stepped aside and allowed the computer, the television, the portable DVD player to do the parenting.

So now that I have this information, now that I can understand his perspective in a different way, what do I do with it? It's the same push-me/pull-you dilemma I encounter so often. If I choose the route that is easiest for Bud, the one that doesn't challenge him to manage through the social engagements and play dates, they will never become familiar or seem less frightening. But if I force him into them when he's not ready, it may feel to him like I'm turning my back on him, leaving him on his own - alone and lonely of me.

And what about me? I adore the time that I spend with Bud. But what of my need to have real, genuine, adult interaction that is not about my work - to have friends? It's extraordinarily difficult for Kay and me to find moments to spend in each other's company, but I need them. I'm lonely of them. I'm lonely of her.

I know there has got to be a point of balance. There must be a line at which I can give Bud the right amount of time and attention - at which I can be the sort of parent he needs - and still have some time and attention left for myself. There must also be another line at which I strike the right balance between pushing Bud beyond his comfort zone and shielding him from extreme discomfort. And there must be a point at which these two lines intersect. But it's a moving target, shifting constantly as Bud's needs and my needs change and evolve, making it more and more difficult to find.

Maybe it means that achieving balance is not really possible. Maybe I should be striving for a reasonable, livable level of imbalance. But if that's the case, on which side of the imbalance is it better to err? And who pays the cost if I don't choose well?

It seems that all I can do is make my best guesses, take calculated risks, and engage constantly in assessment and revision. Sometimes things work out even better than I'd hoped, and Bud and I have moments of triumph; other times - like yesterday - we fall face-first in the dirt and both end up a little bruised, then have to spend some time brushing ourselves - and each other - off.

I'm glad that Bud was able to find the words to tell me why yesterday was so difficult for him. As painful as it is, I want to know when he is lonely of me. But what to do with those words - how to reassure him - how to help him - what to do next - I'm afraid those are all matters that remain in imbalance, and will need a lot more assessment and revision.

16 comments:

Kristina Chew said...

I struggle with the exact same. Most---all right, all, pretty much---of the friendships of my 20s and 30s have withered away. We email sometimes but their lives revolve around kindergarten preparation and the 2nd or 3rd child, or adventures in foreign countries. Charlie has often become very annoyed when I am having even a quick phone conversation with a "girlfriend"---like Bud, he senses my divided attention. I don't know what it is; I do think he (also like Bud) knows that I'm not paying a certain kind of attention to him, and he expects, he wants it, and I'm always so grateful that he asks.

That said, I miss sitting and drinking coffee and, well, gabbing about that and this so much I don't even think about it. I do have my colleagues at work and---it being summer---I really miss lunchtime conversations. Email and the internet (as in your lovely blog) have been my best "circle of friends" in my time in Autismland. (Hence, I went a little "unravelled" myself last week without regular access to cyberspace camaraderie.) I mostly rely on my parents' visits for scheduling one coffee with one friend (an autism mom always, these days).

Of course, there is my absolute best friend, my husband----though it's also only when my parents appear that we have anything like a "date." Somedays we mostly communicate via cell phone it seems-----

I know my friends---the thick and thin ones---understand. I think they often do not contact me out of a supreme hesitancy for my distractions---the wages of autism, indeed.

fiona said...

Thank you so much for expressing this so well and in the process giving me insight, as you've done very significantly twice before, into what is going on between me and my son. I love your fun posts about Bud, but I also gain so much from your thoughtful posts about the hard days.

Shawn said...

Wow and Wow! I'm not sure what deserves the bigger wow, Bud letting you know what he needed, or the pressure of figuring out what to do with the information. Both are significant steps of this journey that we're on.

You're absolutely right about the best you can do: guess and then assess. As long as you assess and adjust accordingly, you'll never get too far off track.

I tend to err on conservative side. Or more appropriately, I generally take only small risks in pushing the limits, while I'll often provide a much higher level of support than may be needed. It's easier for me to back off the support when I'm prepared than to step it up if I'm not.

My wife and I have also gotten very good at self-assessment: knowing when we have the capacity to do what's needed and knowing when our reserves are running low. It's been a big key to keeping things in balance.

Octoberbabies said...

Wow, this makes so much sense. India is so completely miserable at school on the days when I visit that I've simply stopped letting her see me. Now I have a clue as to why she's feeling so sad.

Sal

kyra said...

i really get this. we have our version over here and given fluffy's difficulty with other kids and his attachment to me, my other life remains on the back burner most of the time. but i am lonely of it, even though i find my time with fluffy ever-precious and meaningful and interesting. my struggle since becoming a mother has always been how do i meet my child's needs and take care of myself at the same time? i am not willing to let his needs go unmet but if not enough of mine are attended to, i crumble and then what good am i to anyone?

i cannot tell you how much i love the way bud expresses things. i'm lonely of you. that's PERFECT. isn't it?

i am homeschooling, this year and next because that is what makes sense for my son, for now. i have sitters come every day for a 2 hour break. my husband helps a lot. in the summer i have my mom so dave and i can have dates. i use the phone and internet heavily for connection these days and we are moving in the fall to be in a place that better suits our little family that works at home and has only short pockets of free time, to a place that can offer more right in our own back yard when dave and i do shake free a couple of hours. that's what we're doing. oh. and of course, there's my 5HTP!

i have no words of wisdom for what to do with this information in your household, only gobs of support for you and endless confidence that you will navigate these waters as sensitively, intellegently, and lovingly as you have navigated all crossings before.

sending xx

Tara said...

The situation you describe is all too familiar. Even with the best preparation sometimes our little guys aren't able to filter out the world's noise and quiet the mind's
fears long enough to give mom a slice of meaningful conversation.
What to do? What to do? My Littleman has just begun resenting my need to be away for work in the evenings. I know for whatever reason I am central to his peace of mind. How much of me do I offer up though? It sounds like you are on the right track and just being aware of an unmet need is sometimes half the battle.
All my best to you and Bud.
Tara

Lisa/Jedi said...

Reading this post brought back so many memories! I know I lived this incident more than once when B was younger- I remember a particular time when the other child got mad at B because he wouldn't play with her & held the grudge for years... maybe we were lucky not to be able to get very close to this family...? The thing is, now that B is 10, things are very, very different. He needs us, in many ways, just as much, but being quite used to school now, he doesn't grudge me the time during the day (although he's quite up front about his lingering doubts that the school thing is really necessary :). I have learned to compress "my" time into the school day, which has resulted in a sometimes cramped-feeling existence, but I have an existence which is good! Your post was a great reminder to me of how much my life has changed since B was 4 or 5. It's still very intense, but the loneliness is not nearly as much of a problem as it was back then...

Kaethe said...

You and Bud are an insightful pair. Somehow I had failed to recognize this with my kids. It's okay for me to be at work, but it is NOT OKAY for me to be home on a weekday and paying attention to anything but them.

Bonnie Ventura said...

I had the same issue when my son was 9 years old and I found a job that allowed me to work from home. I didn't expect that there would be much disruption to my kids' routine if I sat at my desk for a couple of hours after they came home from school, but my son couldn't deal with having less attention from me. He got stressed out and started washing his hands obsessively and acting up in general. It took him several months to settle down and get used to the change (with the help of a very nice counselor).

You are right that Bud will be more able to deal with these situations as he grows older and gains more experience. My son is now 16 and is very well adjusted emotionally and socially. It really is a matter of maturity.

Mom to Mr. Handsome said...

I think I would just burst into tears if Gabe or Boo had said they were lonely for me. I feel terrible when Boo says "Mommy you never play with me." Even after we went to the park, swam in the lake and watch a favorite video of hers together, it still pulls at my heart strings. She mostly does it when I have to do laundry or wash dishes.

It is a delicate and thin line we walk as moms. Can your husband stay with Bud so that you and your friend can meet on occasion? I'm sure you've tried every combination. Just a thought. I hope, in time, everything will work its way out.

Kristin

Steph said...

Your insights into Bud are so profound, they make me really envious. If I could understand Reed half as well as you make sense of Bud, I'd be exstatic! Reed still has trouble voicing the "why"'s (and has trouble with open-ended questions in general), so I'm left scratching my head most of the time.

Bud is one lucky boy.

Derek's Mommy said...

I have to say that you are amazing, to have such a great connection and to understand what he's going through. I got tears in my eyes just reading what you're thoughts were.

Its funny, I told a group of friends recently online, we've been together for 5 years now that I'm terribly lonely and sad right now. I so miss having a close, real life friend.

Thank you for your wonderful insight.

Kristen said...

With summer being here, we have been braving the playdates more ourselves. I can totally relate to your experiences, especially with our friends outside the autism world.

And I have been trying to figure out the mystery of the "Mommy Comes to School" disasters for over a year. You really made it clear for me.

You and Bud give me a better understanding of what is going on with me and my son. Not only do I read your posts and appreciate from experience what you are going through, but I learn a lot about my son....as if Bud gives him the words. He is only just beginning to communicate with me and it is usually very hard to understand what is going on in his head. So my thanks to Bud!! He is amazing!

Mary Beth said...

My son Kevin (5), who has a language processing problem is definitely not that attatched to me. When I come to school to eat lunch with him he is happy to see me and eats with me but then he is happy to play with his friends and only occasionally waves to me during recess. His 8 year old sister shows more attatchment to me during lunch visits. I mean he is happy to see me but then he goes on his merry way with his friends. Should I be concerned with this? Every day with a language challenged child is a mystery. When I am ready to go home after lunch all he says is "Bye Bye Mommy see you after School." Should I be worried about attatchment issues?

MOM-NOS said...

Mary Beth, I'm not a child development expert, but it sounds to me like Kevin is a happy, well-adjusted child who is developing a sense of his own independence right on schedule. I wouldn't worry!

Aiden's Mommy said...

I've battled for months with the loss of friendships with those whom I wished could understand what we deal with every day. I admire your tenacity to continue trying to "make this work".

You're obvious connection with Bud is no-doubt, a delicate one. I wonder if my choosing to stay home and be with Aiden ALL THE TIME will result in a connection like yours?

How close is Bud with Dad? Is that a possible and reasonable solution that needs deeper annalysis? Can you get what you need by fostering a NEW or closer relationship with another without the guilt? You should be basking in the joy of your sons expressions to you, about you, and for you.

All our best!