Label Me Capable

At the time my son was almost three we realized that without a label, without an official diagnosis, it would be nearly impossible for him to get services from the county or state. It is required so they can check the correct boxes, which allows everyone to take money out of the right vat with the right dipper. It's a pain in the ass, by the way, more difficult than finding childcare or signing your kid up for summer camp. Getting someone, anyone, to write down, definitively, what is wrong with your child is a serious lesson in patience, persistence and the power of language.

No one wants to be the first person to label your child. We begged to get "cerebral palsy, ataxia" to describe Jake's odd way of hipping and hopping and stumbling around. No one worried about anything behavioral at that point, mostly because the check box for MR (which is the nice way of saying mentally retarded) had already been checked. But just a plain old MR won't get you much. It's better to add a little HI (hearing impairment), or better yet there's number 5 which is vision impairment. We don't have checks in those boxes, but we do have most of the other ones; developmental delay, speech/language impairment, multiple disabilities. Truthfully the best one I've found so far is OI, orthopedic impairment. If you get that box checked, the money comes out of some other pocket called the "low incidence fund", and people stop caring how much your child's little switches and talking buttons cost because the school district doesn't pay for them directly, it comes out at a different level in the budget. When we started this game with his first IEP in 2003, the box for Autism wasn't even on the paper.

When Jake did  receive the autism label, a year later, written down on the letterhead from the pediatric psychiatry department from a prestigious university, I called the office back to make sure that they knew they had put my son in the "autism" category of the study. The poor PI stuttered a bit and asked if anyone had ever talked to me about the fact that my son was autistic. I jumped in and said, "Oh, don't worry, we're thrilled!" She let me know that I was the first person she had ever spoken to that had used the word "thrilled" after an autism diagnosis.

But I really was, because there is a power in naming things. We can box it up emotionally. We can explain it. Do you know how much easier it is for my son's grandparents to say that their grandson has "autism"? The first three years were spent mumbling a lot of, well he's "behind a little" and he has "low tone", well, actually he's "behind a lot", and he "isn't talking", but he has a "great appetite", and he's such a "beautiful boy" blah blah. Thank God we got that one little word.

I get why labels could be a bad thing, how they might hold you back, or allow other people to peg emotions or expectations on you based on what you've been called; bright, disappointment, overachiever, does-not-apply-herself, genius, chattycathy, princess, precious, trouble, smart ass, smart mouth, back-talking, ungrateful, messy, funny, beautiful, too-big-for-her-britches, too big to wear that, too smart to do that, responsible, mature for her age, growing up too fast, capable, little girl who can do anything she wants if she just tries hard enough.

I've been labeled since I was born. I am the first born. That was probably my first designation, then, the "oldest", but like most labels, it doesn't quite fit anymore. I have older step-sisters now, and older sisters-in-law, and in my group of friends I am variably the youngest, or the middlest, but very rarely the oldest.

Towards the end of high school, and through my first years away at university, my parents, the side that has not one, but two psychologists, had a chart on the pantry door. It was a barometer of sorts with each of the four children's names able to move up and down depending on where we were currently "being appreciated" in the family. At the top were words like "genius" and "precious" and perhaps "our pride and joy." Then there were probably words like "good job", and "still gets a key to the house." Towards the bottom were phrases like, "willing to sell to highest bidder", and "a curse upon our house" and other terrible things you should never say about your children, or the family pets, who also, somehow had their names on the door as well. It was very distressing when the rabbit who pooped in the living room was higher up on that chart than my name.

I'm not sure how we got moved around. There were points involved, sort of, but once when I asked how many points there were in total (so as to determine whether losing 1000 points was worth it to do what I wanted to do), there was no definitive answer, so I know that wasn't all of it. The kids, we moved each other's names around a lot. My sister, Demanda, was almost always "precious" given her proclivity to near-death experiences, and grave illness. Though to be honest, she still gets "precious" most of the time. Looking back at some of my actions during college, I'm surprised I got to stay on the chart at all. My younger brother was generally a good kid, except for the Christmas when he asked for all of the receipts, so he could exchange the gifts we got him for something he "actually wanted." I don't think "wienie" was on the chart, but it would have fit. "Genius" was a good label to have, at least in my book, and my youngest brother and I have fought over that one for years. (My parents think it's funny to tell each of us that they know our IQs but won't share them with us. I think they tell each of us, privately, that ours is the highest, so we can feel superior to our siblings, and they can have something to giggle about.)

When I talk about "the chart" now, as an adult, most people look a little bit horrified. And I suppose that labeling us, constantly, was perhaps a little bit mean?, but also so honest and encouraging. I am capable. I can do anything I set my mind to do. After all these years, I think that's my label. So I suppose I'm a bit of a superhero. I can do anything. Is that such a bad thing?

I always knew exactly where I stood in my family. I know I was loved, by all of my parents; no matter what they called me, I have always felt loved. And there is that whole "power in naming things", or at least calling us out for our deeds, good or bad. If everyone, at the same time, knew that my parents were disappointed in me, maybe that helped one of my younger siblings avoid whatever quagmire I had slogged through. And being praised by your parents, in view of your siblings? Well, that felt great, but it never lasted long, because it would only be a few minutes before your name would slide down and the damn rabbit would hop to the top. I think we each tried hard to be towards the top of that chart, not because it would earn us more love, but because that's one of the ways our parents pushed us, in school and in life, and in relationships. Those labels were worth aiming for.

I understand when a label can stop you from growing, or allow someone to have a lower expectation of you. When someone called my son "mentally retarded" instead of "developmentally delayed",  I had a visceral response, because, to me, one label is finite, and the other holds optimism. But I know it is ridiculous for me to let those few words hold so much power over my emotions.

Labels help us identify each other, and if we are smart, we recognize that labels are really only for the person who is using them, so they can know how to interact with us. I can't really change what label someone puts on me, or my son, I can only change my behavior. It really shouldn't matter at all what words someone else needs to describe me or my kid. What will always be most important is that he gets what he needs, and whatever box we need to check, we will.

But you know he'll always get what he needs, right? Because I'm his mom, and I can do anything, as long as I set my mind to it--at least that's what my parents told me.

*****

A version of this post was featured in the Life section of Salon.com

My Life in a Pencil Box

Eagle Marker. I took this from my dad when I left for college. I found it on the dining room table under a stack of mail that looks so much like the stacks of mail I have now. I never understood how a person could have that much mail, or how you could lose a check made out to you, or how something might get sent in late or not at all. I could not imagine ever having such a complicated and messy life. My empathy has taken so long to develop.
Pink eyeliner pencil I took this from my mother's makeup drawer when I left for college. I'm fairly certain she didn't really use it, as I recall her wearing a smoky blue/black, but I also took a Clinique dry/wet eyeliner set too, just in case. My mother is beautiful and I always hoped I would grow up to be as pretty as she is. When I first tried makeup in 7th grade, the only comment she made was "In a little while you will see that you are wearing way too much makeup and that you're much prettier with much less. Come to me when you want me to teach you how to put makeup on." Three days later I learned how to use a soft sea sponge to put on foundation...
Gap pencil This one is before they even changed the logo, so it must be from 1989 or 1990. I started working there in 1989 and didn't leave for 11 years. I met some of the most wonderful people and learned a lot about business, management, communications and how to make friends and influence people.. no seriously, I did.
U.C. Berkeley ballpoint I bought this pen when I went to ASUC for the first time as a student (that's pronounced AY SUCK for those of you who didn't go to Cal). I then went and bought a gazillion dollar Shakespeare anthology and realized I would not be able to afford another pen until 1994 at the earliest. I still have that anthology. The first flowers Descartes ever gave me are pressed in that book. We were just friends when he gave me those flowers, it was more than a year after that when we started dating, and they are the only flowers I have ever pressed in my life.
Montblanc (totally fake) I bought this for myself around Christmas my freshman year of college when I was a) feeling sorry for myself and feeling dramatic. or b) having a moment where I just knew that if I had the right pen I would be the best poet/storyteller/novelist on the planet. Probably a little bit of both. I have a small blue-papered journal somewhere that "goes with" this pen. I carried them both in a leather mail bag that weighed 20 pounds empty. I carried these items everywhere, and pulled them out to furtively scribble poems and essays while on BART, all over San Francisco, and back in Berkeley at one of my favorite people watching spots, Cafe Milano or Caffee Strada.
Posterman pen from my sorority days. That place was more polarized than the U.S. House of Representatives on Health Care Reform vote day. I was the song chair at one point, and made all sorts of posters with the words of ΚΑΘ songs on them. That pen smells so much that I nearly passed out while making those posters, even in my most beautiful "fishbowl" room (I shared with an older girl who was in an a Capella singing group with me. She had more 'points' so we had an awesome room).
Waterman pen (with my maiden name engraved on it) I worked so hard for this pen. I was in the Internship program at Gap. It was fairly new, like perhaps I was the second or third year that it existed? Basically if you followed all of the rules, learned all your stuff, performed magic tricks and smiled all the time, you would graduate college and become an Associate Manager. As a graduation gift our Regional Manager gave us each a pen with our name on it. I always liked that regional manager, even when others didn't, which is kind of odd considering she was very tough, super exacting and had expectations for us that were above and beyond what was expected for our level. When I graduated I was an Associate Manager for three weeks before I got my own store. It was not a prestigious store, but my District Manager told me flat out, "jennyalice, sometimes you gotta take one for the team." So I did, and I learned a LOT, mostly about myself.
Google pen I stole this one from Descartes. (It seems I am thief when it comes to pens?). It used to have a cool light in it with red, blue, yellow and green (Google logo colors), but it must have burned out some time in the last 10+ years I've had it. Perhaps it was the first piece of Dot.com swag in our house? It reminds me of my Life With Endless Possibility that was before. It helps me remember things like Big Promotions, being newlyweds, and drinking late into the night on the evening Inktomi went public.
CMD pen I briefly worked at CMD after I left Gap. There were some very talented people there, but I never really fit in with the company personality. They are a Portland based company, and it was the height of Dot.com-everything-moves-very-very-quickly. I could never figure out why I was so frustrated until Descartes described Portland once after driving around for six hours waiting for me to finish my once-a-month meeting in the home office. I asked him how his day had gone and he said, "I feel like a tiger in a cage full of bunnies."
Waterman pen Descartes bought me this pen the first year we were married, for my birthday. I was so surprised and happy that he would know exactly what I would want... I also couldn't find my Gap pen at the time...I remember that the blue Waterman box was actually wrapped and had a bow on it. He took it out of his Cabella's mail bag, the green canvas one with the brown leather accents. That was back when his bag was really just his bag, and he wouldn't have dreamed of ever needing to get something out of my purse. We still had parts of us that were completely, completely, separate. It also reminds me that we used to actually buy presents for each other. I mean buy presents for each other that the recipient didn't know about until that person unwrapped the gift. Sadly, as good as my memory is, I cannot remember the last time I received a wrapped gift, and I know I have not wrapped a damn thing for Descartes in years, except perhaps a sandwich in some plastic.

There were other pens and pencils in the ratty zip top bag, including colored pencils which Lucy needed for her art project this morning. Grabbing for those pink and silver wooden sticks, her hands pushed past these little flashes, these pieces, past my very own tranche de vie narrative. I was sort of stopped there in each of those moments, thinking, then listening to the little voice in my head,

"Oh my God, jennyalice. You really need to clean out that desk drawer more often."

"I'll Miss You Daddy"

Yup. That's what our two year old said as she hugged Daddy one last time. She packed her Princess purse (thanks a LOT Squid) with her keys (an old key attached to an old doggie collar tag, her cell phone (princess phone stolen from cousin Bubsy), a kitchen timer shaped like an ice cream cone (a "time out timer" from Monster, we keep calling it a cupcake) and a small zebra.

Lucy gave her brother a hug, sat in my lap and held me, then marched out to the car. She waved good bye from her car sear, asked Papa to "Turn engine on please." for the A/C and they left for the week. That is one independent kid.

I cried a little. A little because I will miss her. A little because my "baby" is able to be without me for a week!

and a little because she was able to tell me she loves me and tell her Daddy that he will be missed. Those last two are a few messages we don't get to hear from Jake, though I know he thinks them. I am just so thankful that Lucy can communicate all of her emotions. It seems silly perhaps, but today, again, it feels like I have witnessed something amazing.

Jake walked everyone out to the gate, and initiated goodbye to his Papa. He is getting very good at ducking into people's arms for a small cuddle. Friends and family have noticed him initiating this more and more. He build relationship in his own way with each person.

When my dad left this morning Jake walked to the door too. Now it may be that he just knows he has a chance to escape, but I think he really is becoming a part of the good bye process without needing prompting. It was so nice to have BIAD here. We went crazy at the teacher supply store buying Lucy her birthday presents (art supplies, enough for a preschool), and he got to meet a bunch of people I know, even Sage made it back from Tahoe in time to meet him. He got to see Lucy swim and drop Jake off at school, eat Amici's pizza (one of our favorites) and help me pick out a new coffee maker. He also relaxed on the couch and read a few books, which is probably exactly what he needed.

Now back to packing Jake for camp. My house is suddenly very very quiet. It is still very hot, and we saw lightning in the distance. Hoping Jake's camp remains fire-free this summer.

Maybe...

Maybe I'm not managing my time well. It all seems to be slipping away from me. I have so much to do and not enough hours and at the end of the day? I still feel like I haven't accomplished much. My MIL, Cookie, told me once how she was constantly frustrated when her kids were little because when her husband would build a wall, or set up the sprinkler system, or some huge task, everyone (her self included) would cheer and praise his big accomplishment... and somehow, everything she seemed to do was undone within hours and needed to be done again, over and over again-- with no one cheering.

I'm sure I am not alone in my frustrations. Other SAH's or WAH's must feel this way sometimes right? Lucy is two and I have a child with special needs,but I still think I should be able to get a lot more done. But lately? Well, I am just too tired to tackle the big stuff. Probably depression? Normally when I get the blues I start to kick-ass. I was told years ago that this kicking-ass part is just another way that people cope. I am hoping that the kicking comes back soon, I have a LOT to get done.

In other news.. we had a terrific IEP the other day. Jake will be evaluated in all categories including ABA, which we have never previously pursued. I feel like he finally has the ability to physically sit still long enough to benefit from this kind of learning, and he has been doing discrete trial learning in the classroom set up by his teacher Janet. I think an outside set of eyes can help determine a good home/school plan that will help him keep moving onward and upward which he seems to be doing lately.

He went on the second grade field trip at school. The entire second grade went to a local children's discovery museum. I was actually a chaperon and had not just Jake, but TWO other boys in my group. Anna, Jake's regular aide was out sick, so Lala went with us. She was great with him, and it allowed me to actually have this small but "mixed" group. Of course one of the kids was George, Jake's buddy from the other classroom. He continues to be one of the nicest children I have even met. The other boy was Freddo, who I had never met before. He was shy at first and rode to the museum on the school bus..but he asked to ride home in my van with Jake. It could have had something to do with the little tv showing ShrekII, but I will take it how I can get it. Jake was such a good boy all day. I think he was thrilled to have his friends in the car with us, and I think I may try to take all three boys to Gilroy Gardens or some other fun over the summer.
I have always thought the the children at Jake's school were nice kids. Of course there are going to be a few bad eggs, but on the whole, well-mannered, well groomed, good spirited kids. I was thrilled to see all of "our" second graders behaving so well at the museum. I watched with dismay those kids from another school not sharing, blocking the stairs, pushing each other, running inside and generally not saying excuse me if they stepped on your toes. One of our kids asked so nicely to use a toy (that the other child had TWO of) and when that child said "no", our kid reiterated that he would only have it for a minute, and when the response was still no? Our kid said, well, okay, and pretended-on in his game without the toy, leaving the other kid standing there with lots of toys and no one to play with. I think I am going to write a letter to our school principle letting her know just how great our kids were, and how nice it was to see all of the school mission statements being played out in public.

To Do:
Lucy thank you cards for amazing birthday gifts from friends and family
Letter to Jake's principle
Call the Director of Special Ed and talk about scheduling evaluations
Pack Jake for camp (he leaves this Sunday)
Pack Lucy for Cookie and Papa's house (she leaves on Saturday)
Pack Jennyalice and Descartes for anniversary trip (leaves on Sunday)
Buy a new coffee pot

Hey--my dad is in town. He finished up his grades at the college, cleaned up his office and came up here this morning. He will be here until Saturday morning. I believe Lucy is calling him Grappa now. So she has Grandpa, Papa and Grappa, Grandma, Oma and Noni. Pretty lucky kid. I am just so excited that he is here. He is an easy house guest, happily reading on the couch, offering love to children passing by.

Tomorrow I will take my dad to coffee so he can meet Squid, Liz, Badger, Ep, Jo and the incomparable Barak.

[just so you know I had to take a break here because Lucy is doing some self-potty training and decided to drop her drawers in her room , but whne she couldn't find her little potty she bacame upset, and apparently, while I was happily sitting in the backyard on my laptop enjoying a cool breeze.. she crapped all over the place and was very distraught by the mess. So the Daddy hosed the girl and I crawled around and cleaned poop off of every surface where it was, and most surfaces where it wasn't as well. I also scrubbed out the cushion covers from the million dollar glider that is in the room, and her pajamas.. all covered in poo. Who knew that the NT kid would present me with more poo problems than the "special" kid?]

Lucy goes to her last day of daycare at Nanny Kidwell's house tomorrow. Nanny is moving on to preschool pastures and a matching 401k. Sux for us, but a smart move for her. It has been a great place for Lucy to grow and learn.. and get out of my hair! HA! We bought Nanny a pretty ring with a blue stone to thank her for her affection, determination, structure and warm heart. I am so glad we got to know her and her two wonderful daughters (who can still babysit!)

*****************************

I need to make lists now. Lots of lists.

Maybe I am feeling a dose of ass-kickery coming on? Maybe?