Grandma's Mantel

Having a child with a disability means different things to different people. Just as having any child at all does. For the most part, it feels like our family is fairly well equipped to not only handle having Rubinstein-Taybi Syndrome in our lives, but I also believe that we have, and will continue to ensure an environment where both our daughters can be the happy, healthy, loving girls they were meant to be since before time began. Not that we don't second guess ourselves, but we we fall back on fundamental trust in our parenting instincts. What most dreams for our kids boil down to is that we want them to have a positive impact on the world - we want them to change something. Both our kids have fulfilled that dream for us in a variety of ways. My husband and I are like eager moviegoers who already found the opening credits surprisingly delightful - we sit nodding with reason to believe this is gonna be good. What is most exciting is having no clue what happens next, what other moments of delight will be strung together before the culmination. We're not even trying to guess. Normal, typical, predictable are things that we've never held closely, never clung to as values.

That's all a disclaimer for the tale I'm to tell here. I tell it through a headache and cheeks still stiff from dried tears. Many parents of children with disabilities who have developed healthy perspective over time will not hesitate to admit that there are certain things, certain seemingly unimportant things, that shove them over that cliff into an ultimately manageable, but scary sea of feeling cheated, feeling injustice either for their special child or for their family as a whole or for themselves. But they do have that healthy perspective to use as a personal flotation device, if needed. There is always a trust that feet will find higher ground again, so these deep end drops are accepted from time to time.

Today I lost my footing and fell over just such a cliff into just such salty water.

Addie goes to 2 schools. On Monday and Wednesday she is in the early childhood special education program with one or 2 other kids, depending on the day. On Tuesday and Thursday, she goes to a regular preschool class with about 16 kids - mostly of typical abilities and some not-so-typical. The Tuesday and Thursday school had their picture day today. Since she's not scheduled to be there on Wednesday, we had to make a special trip to get her photo taken before her other school started.

I prepared for this: she bathed and smelled good for the camera (?), I picked out a snappy outfit, I did her hair in a way that generally gets her a nice helping of attention and compliments (can a mother say her daughter has gorgeous hair and be believed? Or does an unbiased 3rd party need to be the judge?). Still, we were running late. It was a rushed morning where I had no time to think of anything but the concrete necessities - backpacks, jackets, change of clothes for school after the picture. My 3rd grader had a late start day at school, so Cate came with us.

Addie was confused when we got to the school, which I'd anticipated. I showed her my camera and told her that we were going to take photos and then go to the Wednesday school. She happily played in the very familiar gym while we waited for her turn.

Addie's name was called. I carried her to the lights and the backdrop screen. I could immediately feel her tighten every single low-toned muscle in her body. She was telling me and only me "No, mom, this is not what you said would happen. You showed me your camera. This place has screens, big lights, strange people and a huge camera." My response overestimated my own abilities and underestimated Addie: I signed and talked to her, told her what each thing was, showed her the sample photos from the order form and then, thinking I had done my job, went to plop her on the pose chair.

Here's a fine example of not heeding my own advice - to teachers, therapists, babysitters, etc. I tell them the surest way to get her not to do something is to manhandle her instead of talk with her about it. Despite the fact that she is nonverbal, she still appreciates a 'say' in things, like most 4 year olds. If you want her to go to the door, all you have to do is ask her to sign door and then she feels like it was her idea and happily complies. But no, I broke my own rule and tried to plop her.

The wobbly rock on the bluff gave way. In slow motion I fell headfirst into the sea. Just a second before plop completion, Addie's legs and back arched so that her sister could have used her as a hula hoop. The chair flung backwards. She was not concerned with my ability to hold her, falling or injury to anyone. She accompanied her contortion with howl to make her message clear to the general population "I will not have my picture taken by you people today."

But I wanted this picture. Cate's school photos came back last week and they are beautiful. Addie has not had her photo taken professionally since she was 6 months old. I wanted to give the grandmas the gift you give grandmas for the holidays: the hinged 5x7 double frame with my 2 girls and their goofy fake smiles, smiles that belie the pre-flash facts: a grown-up stranger is acting silly so I'll smile, but I'm slightly embarrassed by it, so including my bottom teeth in this smile is throwing a bone to this photographer. When you see these pictures on the mantel you can almost smell graphite and tempera paints, you can hear lockers opening and closing and you can feel the click of a ring binder... The photo says "I am a contributing member of a community called school. Just like you were."

I didn't even know I wanted this photo so much. It's only now that I realize it. But parts of me were very aware of this desire or I would have said forget it. Not worth it. No. I was willing to put us through more than I am usually willing to do. I didn't cut our losses. I sang, I coaxed, I signed. I jumped up and down, I ordered Cate around, telling her to stand here and do this or that in the hopes that Addie would train a sweet grin on her sister. But I did not do any of this in a hopeful, jolly way. I had already given up - her body told me first thing that there would be no photo today. I knew this, but I cajoled in a desperate way - shaky in the voice, too blunt with my movements, like a spoiled child that realizes they won't get what they want, but cannot stop demanding it. If it were possible to measure Addie's understanding and connection to her mother's mindset, the word we hear so often in her evaluation results - delayed - would be replaced with advanced or acute or gifted. Knowing that mom didn't think it would happen strengthened Addie's resolve to ensure it did not. She walked away, she pushed the props away, she wriggled, all while I continued to try to catch mercury.

I was sweating and huffing when I glimpsed another family or 2 come in. At that point the photographer held up the tiny display screen on her camera to show me a dark photo. It was the outline of Addie looking down with a frown on her face. The photographer raised her eyebrows hopefully, "How's that? That's cute, isn't it?" Ah. Ok. I get the picture. We'll go.

With tears roiling in the back of my throat, beginning their trip up north, I averted my eyes and quietly answered the photographer's question by telling her that if there were any that she would have been proud of, go ahead and make proofs, but if none of them meet her standards, don't even create an ordering package for me.

I brusquely ushered Cate and Addie out of the gym, past the families with combed and pressed preschoolers - I could see their mantel photos for grandma in little bubbles over their heads. When we passed the lobby of the school and the air from outside hit my face, the tears found their freedom. As I struggled to keep them in and began to blame myself for getting upset and unreasonable in front of my girls, the despair found a new dimension and a quiet, but telltale sob started in my throat.

We got to the car and Cate was already crying. She's a crier, that one. Wonder where she gets it. I quickly tried to explain that I understand that it's no big deal that we didn't get a photo, but that I just was gonna be disappointed about it for a few minutes and then move on. I didn't tell her that I was wondering if we'd ever get that mantel photo for grandma. She would not have understood - how can you be ok with Addie not being able speak, to say I love you, but lack of a school photo sends you to the depths? I can't tell her that a dream isn't always grand, that sometimes it's simple and small, but cuts you just as deep, sometimes deeper, when it eludes you. She wouldn't get that, would she?

From the backseat, Cate wiped her eyes and sheepishly ventured, "Mom, you took some pictures of me and Ad in her pretty dress this morning before we went. Good thing you did that - you have to be thankful for what you have. Anyways, you're the only one that can take the photos of us that show how we really are."

My next sob was caught and remade into something like a laugh. I tipped the rear view mirror to frame the sisters in their car seats. "And how is that, honey?"

"Cute and pretty and messy and loud and happy and proud."

I'm still holding on to Cate's floaty now that everyone is at school. Hers has more air in it than my own right now. I am thankful she is lending it to me. Now that I don't have to worry about drowning, I can concentrate on getting to higher ground again.



Maybe grandma would like bubble bath or new slippers this year.

Daily Grind

I had one of those vivid, but mundane of dreams last night. You know the ones - a whole production of a dream merely to work through some simple task like washing your hands. Kind of a let down. But this was a little different - I was going through the paces of a day, the daily grind if you will, except for one slight twist - it was not my grind. It was someone else's. In my dream, I was fully aware of that, I knew that this pace, this to and fro, this collection of details, responsibilities, lists, obligations were someone else's burden. The day advanced, I got up and planned each next move based on the schedule this someone else - I'll call her Octavia - had to keep, the starring roles she had, the supporting roles she had, the errands to run, the job to do, etc.

In my dream I ventured I was yanked into Octavia's place so I could tell her about it, tell her how I felt going through her day, where everything was new to me, some things a breeze, some things more challenging. I was a day assessor, though I'm not certain it was Octavia herself that commissioned me. So I did her day and collected my data. But as soon as I was to debrief Octavia, I was jerked back to my own grind by the sound of my alarm.

I do not wake to music, that is too gentle, no matter the type of music. I need that electronic ee ee ee ee - something you want to scream back at. It's been a year and a half since I let go of the 'working mother' role, but I still need that moment just after the alarm rings to think "Is this a work day or a home day?" The answer to that question is no longer as simple as saying "work day."

While I do not leave for work, there is no such thing as a home day anymore. The schedule of readying and carting and assessing and deciding and collaborating and teaching and playing and pleading and thanking...on behalf my 2 daughters sometimes feels more rigorous than what I used to call a work day. We've got 3 different schools, therapies, doctors, swim classes, Girl Scouts, play rehearsals, IEP meetings, play dates, homework - pretty standard stuff, but a lot of it. I know, we're all up for patronizing the "stay at home mom" with pat phrases like "the hardest job ever" ala Oprah. I'm not sure the 'degree of difficulty meter' ratchets up or down depending on whether you work or not, but then I would not use the word "job" to characterize parenting, either. An aside for another time...

My older daughter Cate is hyper-verbal. I think I just made that word up. She is like me, in that if she thinks it, she must package it into words and give it away. I type mine, she says hers. But my younger daughter Addie, is non-verbal. Which is a big misnomer - she is as loud as the other one, but rather it is the shortcoming of the rest of us "talkers" that we do not always understand her language (or the language of many kids labeled with communication disorders). This combination of the hyper- and the so-called non-verbal in one household makes mornings, afternoons, evenings a constant pivot from one to the other, from pushing words back in to trying to pull them out: Cate, ssh! Just STOP talking for 2 minutes and try to listen! Addie, tell me what you want! Just pick - cheerios or a waffle. Here, I'll do this dance for a minute while balancing on one foot with a waffle in one hand and cheerios in the other, then will you tell me??

Today as we were in the car after the wake up/get ready morning rush, taking one kid in one direction to school and then doubling back to retrace my tracks and make more, to take the other to school, I had a lucid moment where I was able to ignore Cate's monologue about what happened on Hannah Montana last night, as well as tune out Addie's whines - whines that make it clear that I am falling short in my service to her in some specific way, but which leaves the urgent specific way pretty wide open to my own hunches. In this delusional 'silence', my dream came back to me and I tried to continue it consciously. What would I have told Octavia about her day?

I found the freedom in her life, even amidst a schedule, exhilarating. I didn't like what she had for lunch, but I did like that she got to eat it at her desk at work, in solitude, surfing the net and then chatting with co-workers. The meetings she attended may have been boring, but there were ideas there! New ideas and grown up talk. And when she got home at night, she had whatever she wanted for dinner, and peacefully read nearly half a novel before lights out. Lucky duck, I thought. Assessment summary: you don't know what you have, Octavia. Relish it.

How would Octavia write up the grind assessment for me? She might not have made it through the whole day, perhaps she'd have run screaming from my messy barbie- and therapy toy- laden noisy home back to her orderly silent apartment.

Or maybe not. Maybe she'd have told me that she liked the 'music' in my house. The sound of Cate singing her homemade operas about butterflies and flowers and the mad love she has for her little sister, the sound of Addie hollering "dah dah dah dah!" Octavia would probably notice that Addie's dah dah dah's came just as Cate's song ended. She might have interpreted it as "Thank you, Cate. I love you, too."

It's possible her report would include a reminder that I get to run on the playground with my 3rd grader and her friends after dropping Addie off at one of her 2 schools - both of which she loves. Playing shadow tag or pretending I'm an AWOL cow that the cowgirls must wrangle is something that not every so-close-to-40-it's-time-to-listen-for-surprise-party-clues-year old woman has the chance to fit in the morning, just before meeting someone for coffee to discuss becoming a parent resource for district special education families, Octavia may have chided.

She would have sat in my place at the dinner table and not even have attempted to direct orderly conversation about what happened in each person's day. She definitely would not have used the time to unload the day's disappointments on her exceedingly patient, just- arrived-home-from-a-long-commute-then-made-dinner husband. She would have just listened to see what came out of each mouth while marveling at Addie's signs and innovative invitations to play the "copy me" game.

Octavia would likely have included a few questions on my report: Do I realize how closely my kids watch me? Do I realize that as different as they seem, they are not only very much alike, but they are also like me? She would tell me that there are parts of my day when I seem to realize that I have more than my fair share of love and contentment and that the darker parts of that day are when I am not focused on the present, but worried about what comes next. Since Octavia is pretty smart, she would grant me that there are times when it is absolutely necessary to prepare for what comes next. But that would be closely followed by advice that I budget a price for it - it never comes without cost. Sometimes I pay too much for a little preparedness - I miss what Cate is telling me because I am trying to paddle against the stream of words instead of with them. I miss what Addie is telling me because I am wringing her for words or signs while she is nudging me to the door. Addie is telling me it's time to go to school, Mom.

You took the words right out of my mouth, darlin'.

Ray LaMontagne has a sort of whisper of a song, ethereal, but clean - called "Be Here Now." It quietly directs the listener's subconscious to push some realization into its consciousness that "it's only time, it will go by." Next and now are the same, just in different places on an imaginary continuum.

Octavia's assessment summary for my grind: The best way for Ms. H-E to prepare for what's next is by diverting some attention from it in favor of now.