Thanking our village

I just spent the morning dipping Oreos for teachers and helpers, which is apparently now my signature teacher gift. (Can something be “signature” after only two times?) It got me thinking back to last year’s post, which is still completely relevant for my frame of mind today:

My friend, who is also the mother of my daughter’s classmate, asked me a couple of weeks ago if I wanted to join in on a group holiday gift card for their teacher, thus setting off my annual tailspin of panic on how to appropriately gift the many folks who care for and about my kids.

While I absolutely can’t begrudge my daughter’s regular ed teacher the $15 worth of Target goodies she would have gotten if I participated, I had to decline. Or more precisely, my wallet and my sense of fairness did. If I can’t do it for everyone, I shouldn’t do it for anyone.

I’m not going to whine about how expensive it is to give gifts to all the people who work directly with my son: the six behavior therapists, the special ed teacher, special ed director, BCBA, two clinical directors, school nurse, physical therapist, occupational therapist, and his beloved bus driver. Having a lot of people to thank is a good problem. Most kids receive too few services. That’s not the case for us. But it does make me feel like a cheapskate.

It’s not just the awkward feeling of inadequacy around my limited gifting capabilities that is uncomfortable at this time of year. This deep revealing of obligation is unsettling. I am starkly reminded of my son’s vulnerabilities and how dependent he is on so many other people to get through life.

I too am dependent: on our education consultant, the special education administration, the lawyer, the financial planner, the school committee members, the other special ed parents in our district, the special needs parents who advocate and change policy we couldn’t live without, the agency professionals, the doctors, the nurses, the front desk folks who make sure we have referrals and prescriptions, the pharmacists, the diaper delivery man, the transportation coordinator, the newsletter writers, the conference planners, the breakout session presenters, the support group coordinators, the bloggers, the friends, the family members, the neighbors. Even you, dear reader, on whose community I have come to rely to get through this unexpected life. I am dependent. I cannot do this alone, because he cannot do this alone.

To be honest, part of me resents that dependence. We live in a culture in which independence is strength, independence is freedom. The ideal American life is free of obligation, of reciprocity, of dependence. As I have come to learn, that freedom is an illusion. A delusion even.

So this year, the kids and I have been whipping up batches of chocolate-covered Oreos as token gifts for the school personnel. (Luckily we are able to make them slightly faster than we can eat them.) Three a piece, decorated with sprinkles, in a cellophane bag with a candy cane. Even my daughter’s teacher will get some.

It’s not enough. But it will have to do. I am getting comfortable with being indebted.

To the rest of you, I say simply thank you. I hope I get to say it in person, maybe even with a hug. But if not, please know that I know that I couldn’t do it without you.

It’s all still true: the dependence, the latent desire to be free of dependence, the acceptance of it, the appreciation of it, and of you. Thanks!

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The Birthday Girl Gives Everyone Else a Gift

birthday cake
birthday cake (Photo credit: freakgirl)

This Saturday my son and daughter went to a birthday party of a very close friend, let’s call her the Birthday Girl, who recently moved to another town. Though the Birthday Girl’s older sister has been acutely aware of my son’s developmental differences for the past few years – I wrote about out a wonderful moment we both had last summer – the Birthday Girl had never seemed particularly conscious of his differences.

Based on my observations of the Birthday Girl and my son together, I assumed that my son would just blend right in with this group of fifteen birthday-horn-tooting, sugar-high seven-year-olds. Boy, was I wrong.

It hadn’t occurred to me that because this party was in another town, many of the kids attending wouldn’t have met my son before. In fact, I wonder if many of them had ever met any child with a cognitive disability as great as his before. It made for an interesting party.

A few minutes after we arrived, the kids were invited to sit at the large dining room table for pizza. At the head of the table, the Birthday Girl had set a place for herself and my son, and insisted that he sit next to her. On either long side of the table, many pairs of eyes stared at him, curious about this boy who moved differently, talked differently, and looked very different, too. They weren’t rude, just quiet and clearly very curious. I tried to facilitate somewhat but was really at a loss as to how to turn this in to a teachable moment.

After pizza the kids went out to the back yard to play for a while, then came back in to have cake. Again the Birthday Girl took my son’s hand and led him to the head of the table.

A few moments before, the kids had been asked not to blow their mind-numbing birthday horns indoors a few minutes before; somehow my son missed that message and proceeded to toot away.

“It’s OK that he’s tooting,” Birthday Girl said. “Because he’s…” and she stopped short, not knowing how to end the sentence.

“Cuckoo,” another child said.

“DON’T COMMENT,” she yelled insistently. “Well, you can comment, if you want to say something like, ‘He’s so nice.’”

And that was that. The party proceeded on. The kids watched a movie, and my son had the darnedest time trying to stay focused. He made noise, climbed on the kids, and eventually, I brought him outside with some toys to play while we grown-ups had a beer.  I felt satisfied that on some level progress had been made. I wondered what it would be like for these kids the next time they met a child like him. Maybe they would consider that child a little less strange, a little less cuckoo.

Recently Kara Baskin wrote a nice piece in the Boston Globe about the simple wish list she has for qualities she hopes to see in her child: graciousness, gratefulness, kindness to strangers and kids who are bullied and old people. Who could disagree?

It struck me that that was probably what all these birthday party guests’ parents wanted for them, too. But it is Birthday Girl who is all those things, and part of why she is is because she has been given a many, many chances to practice being patient, considerate, compassionate, and accepting; many, many chances to see my son laugh, struggle, and love her, too.

If we want our children to be good baseball players, we have to give them a ball and a bat. If we want them to play piano, we have to get access to a piano. If we want our children to be compassionate, we have to give them situations to practice compassion. Not just write lists about it, but do it.

Here is a girl, freshly seven, standing up for someone vulnerable, speaking out to her peers and telling them not to bully. Modeling for her friends how to not just tolerate and accept, but to welcome and appreciate difference. How amazing her life will be. I am excited to watch her grow and am grateful to learn from her.

Happy Birthday, Birthday Girl. You are already wise beyond your years.

The most wonderful time of the year

A woman visits her rabbi to ask his advice on how to handle her family’s cramped living quarters.

“Rabbi, we only have one small room and my husband and children and I are always bumping into each other. It’s so noisy and chaotic. What should I do?” The rabbi asks, “Do you have chickens, goats and a cow? Bring them into the house.” The woman is confused, but faithfully goes home and does as the rabbi says.

A week later she returns, even more overwhelmed and in distress. “Rabbi, the house was small before, but now with the chickens, goats and cow, I can hardly think or breathe. What should I do?” The rabbi’s solution: “Send the animals out. Now you’ll appreciate how peaceful and spacious your home is.” And sure enough, she did.

Sending the kids back to school today after having them home for 10 days, I felt like the woman in the parable. While there certainly were many moments of joy and merriment, spending the week without our usual routine was tougher than usual.

I know I’m not alone. It can be a challenge for many special needs families, especially those with kids for whom routine is essential. In my case, my son’s attention span is so short and his independent play skills so limited that it’s difficult for him to be alone without tearing the house apart. (He might be small and seem pretty angelic, but he can find a lot of cabinets to empty while I run to the bathroom.) To spend a week at home with him is to completely surrender: my expectations, my agenda, even my inner thoughts. Email and texts pile up, along with laundry and toys. My patience was tested. Often it failed miserably.

Luckily, the intensity ebbed and flowed. We did have some wonderful moments watching Tintin, at the community pool, taking the subway into the city. I appreciate that they were only possible because we were out of our routine.

But today, alone in a quiet house, with the most urgent to-dos from the past week completed, with my six words strung together, with my clean hair and matching socks, I am filled with a warm gratitude to the predictable banality of our everyday routine that, I realize now, works. Not perfectly, but it works. Cheers to you, same old, same old!

Oreos for my village

My friend, who is also the mother of my daughter’s classmate, asked me a couple of weeks ago if I wanted to join in on a group holiday gift card for their teacher, thus setting off my annual tailspin of panic on how to appropriately gift the many folks who care for and about my kids.

While I absolutely can’t begrudge my daughter’s regular ed teacher the $15 worth of Target goodies she would have gotten if I participated, I had to decline. Or more precisely, my wallet and my sense of fairness did. If I can’t do it for everyone, I shouldn’t do it for anyone.

I’m not going to whine about how expensive it is to give gifts to all the people who work directly with my son: the six behavior therapists, the special ed teacher, special ed director, BCBA, two clinical directors, school nurse, physical therapist, occupational therapist, and his beloved bus driver. Having a lot of people to thank is a good problem. Most kids receive too few services. That’s not the case for us. But it does make me feel like a cheapskate.

It’s not just the awkward feeling of inadequacy around my limited gifting capabilities that is uncomfortable at this time of year. This deep revealing of obligation is unsettling. I am starkly reminded of my son’s vulnerabilities and how dependent he is on so many other people to get through life.

I too am dependent: on our education consultant, the special education administration, the lawyer, the financial planner, the school committee members, the other special ed parents in our district, the special needs parents who advocate and change policy we couldn’t live without, the agency professionals, the doctors, the nurses, the front desk folks who make sure we have referrals and prescriptions, the pharmacists, the diaper delivery man, the transportation coordinator, the newsletter writers, the conference planners, the breakout session presenters, the support group coordinators, the bloggers, the friends, the family members, the neighbors. Even you, dear reader, on whose community I have come to rely to get through this unexpected life. I am dependent. I cannot do this alone, because he cannot do this alone.

To be honest, part of me resents that dependence. We live in a culture in which independence is strength, independence is freedom. The ideal American life is free of obligation, of reciprocity, of dependence. As I have come to learn, that freedom is an illusion. A delusion even.

So this year, the kids and I have been whipping up batches of chocolate-covered Oreos as token gifts for the school personnel. (Luckily we are able to make them slightly faster than we can eat them.) Three a piece, decorated with sprinkles, in a cellophane bag with a candy cane. Even my daughter’s teacher will get some.

It’s not enough. But it will have to do. I am getting comfortable with being indebted.

To the rest of you, I say simply thank you. I hope I get to say it in person, maybe even with a hug. But if not, please know that I know that I couldn’t do it without you.