Thursday, October 2, 2014

To Lindsay on the occasion of her 18th birthday. You are now legally an adult. Don't let it go to your head.

18 years ago today I was trying to sleep but was constantly interrupted by nurses taking my temperature, checking my stitches, asking how I felt and oh, yeah....bringing baby you into the room to eat. You and I had a connection right away--like a limpet to a tidal pool stone, like a remora to a tiger get the picture.
You were born at 3am, so I hadn't slept at all, and it seems that maternity wards don't believe in sleeping in the daytime. Your dad was taking a break from all the excitement, after holding my hand and telling me how beautiful I was while I yelled at him, and having taken a few zillion shots of you, he took himself off to the Mass Ascension at the Albuquerque Balloon Fiesta. October is a great time to be born, but you do tend to miss a few things when you're busy.
A nurse brought you in to eat every 30 seconds or so, rolled up in what they called a "Burrito Wrap", your halo of curly black hair and your angry-potato face all that was visible of you. You were like a little sanctified pupa. Gorgeous baby. Everyone said you were...but then maybe they get paid to say that on the M-ward.
Whenever I held you the burrito wrap magically fell apart, but I was completely okay with that because somehow you kept getting naked, too, and that was maybe because I wanted to see all of you. The nurses kept wrapping you back up, and miraculously, when you were with THEM you stayed wrapped.
We both had elevated temperatures because you know, older mom thing, longer labor, stupid ice chips, la la they were checking us a lot. Which is why I couldn't sleep, so I had to watch all the handy new mom instructional videos they had running on the TV, and which I thought were unbelievably adorable, probably because I was high on delivery endorphins and hallucinating from a lack of sleep.
Pediatrician came to unwrap you and make sure you had all the finger and toes (I always thought that was a little weird..seems like so many other things could be wrong besides missing fingers and toes when a baby is born...) which you did. Then he flexed your hips and discovered you didn't. Flex. So then we were trundled down a hall, down an elevator, down some more halls and I thought that if the intern or nurse or whoever the young man was who was taking me to X-Ray wasn't REALLY who he said he was, he could have left me there and I would still be wandering the halls of Presbyterian Hospital of Albuquerque. But I could have been hallucinating again.
I got to hold you on the big, cold, dark X-Ray table so you wouldn't move and they could see what was up with your perfect, adorable baby hips. What was up was hip dysplasia, which means your hip sockets weren't sockets, and your femur was apt to slide all over the place without that place to nest. Now, I have to digress a little here and say that it seems like a minor miracle that humans are built and come out (especially the WAY they come out) as any kind of functional piece of machinery at all. I know my high school biology teacher (Mr. Gordon) said once that humans weren't really miraculous in the way they were built, but that we are basically all just a big Rube Goldberg machine and all our systems really just happen to barely work for whatever purpose they exist. But I DO think that it is just short of impossible that our Rube Goldberg bodies get put together pretty consistently without missing any random pieces. Really. Most of the humans walking around are at least 99% complete, or were at birth.
So back to the X-Ray table.
You never wiggled on the X-Ray table. Not that first time, or any of the seemingly 150 subsequent times I had to hold you for follow-up visits. Maybe even then you were fascinated by the machinery and trying to figure out how it worked. But anybody who knows you now, understands about how crazy it is that you never wiggled on that table. You've never been a human ping-pong ball or remotely hyperactive, but there is always a part of your body that is wiggling, jiggling, fiddling, tapping, vibrating, making your mother slightly bonkers.
The following week, after only 7 measly days of being able to see your feet ("with original factory tread" as Dad said) you were fitted with a Pavlik harness (thank you Professor Arnold Pavlik, who was a surgeon in Czechoslovakia).
You, rocking the Pavlik
You wore this sweet little pink torture device of straps and Velcro for six months. Because of it, you didn't completely lose your Moro (startle) reflex until long after six months, when it is supposed to have disappeared. When the harness was off so you could take a bath, sometimes you'd make up for lost time and fling arms and legs wide two or three times in succession, eyes wide, like you thought you were falling off the earth. Because of this hellacious device which meant I couldn't hold you normally and couldn't see your knees and toes for 23 out of every 24 hours, you were completely cured and your hip sockets became socket-like and the orthopedic surgeon told me on your last visit not to bring you back until you "fell on the playground and broke an arm". Lovely man. No, really. He was. Were it not for him, the local pediatricians would not have been screening for hip dysplasia and it would not have been caught until you started falling down and dislocating a hip at 5 or 6 years of age. By which time surgery would have been a dismal half-solution.
So, on to the rest of the story.
You rolled, you crawled, you walked, you talked (oh my! Grandma just LOVED that you talked so much--she said it was my karma), you read, you grew, you learned to laugh at all Dad's jokes, you did math like it was breathing, you made friends, you grew some more, and here you are at 18. Yep. All grown up. Ish.
This is a great age. But then, they've all been great ages. Call it what you will, you were never a "difficult" child. Have we worried about stuff? Does Dr. Who regenerate?
I will NOT say something ridiculous like "you are on the cusp of adulthood" or "this is just the beginning" because life is all about forward and moving and learning and finding out more about stuff. There are lots of cusps and lots of beginnings. Eighteen is important in our world because suddenly people have decided you are capable of signing legal documents and voting and making decisions for yourself. Like when you turn 55 you get cheaper movie tickets and dinners at Village Inn. It's a tool. Use it. But you know, when you vote, you should probably think a little more about what you are deciding on than when I order the senior special at VI, okay?
Love you lots, always will.

Wednesday, April 30, 2014


We will go to Lindsay's last awards ceremony tonight at the high school. It will, as always, be long and somewhat excruciating, for multiple reasons.

It is a given that it will be long, not because there are many long-winded speakers (just a couple) but because there are more than 400 students in Lindsay's class, and there are a LOT of kids who get decent grades, like 3.5 GPA and up. These are all recognized. A part of me really likes that, because I got pretty good grades (3.75 over four years, before weighted grades) and if we'd had academic letters and certificates and all that, it would have been pretty cool to have been acknowledged for all that hard work. (Snort! Again, if you are reading this, Mom, don't hurt yourself laughing...)

But beyond the number of kids who are highly deserving of praise for their grades, there is a seemingly endless supply of motivated teenage movers and shakers who go out there and grab the high school world by the tail and take it for a real ride. Multiple discipline athletes, devoted musicians, Best Girl, Best Boy, presidents, captains and chairpersons. I truly do admire and love every one of them. They are achingly sincere and good-looking. Teetering on the edge of their lives. So ready.

We get to watch every single one of them march up to the stage, accept awards, accolades and scholarships. It's exciting. And excruciating. Because we know Lindsay will likely not be up there for anything, except the GPA. Which is good, and I'm certainly not complaining. My rational half says that she didn't work for any of that. She didn't run for office, she didn't find her niche and pursue it with a passion, she didn't stand out in any of the traditional ways.

Of course, my parent half surges in indignation at the lack of insight on others' part that they couldn't see what an awesome young lady she is and always has been. Yep. That sounded like every other devoted parent I know. Still, and though I know Lindsay could not possible care any less than she does about recognition, in fact she probably would rather NOT get some of the attention, I want SOMEONE to acknowledge publicly what she has accomplished. And not test scores. 

Not to diminish the test scores. ACT and SAT scores are nothing to sniff at. She has been recognized for that numerous times. But tests are NOT who my astounding young woman is. Other than the fact that she has no fear when being tested, and is, as a matter of fact, kind of excited to take tests (like her mom). But the score is a number, which in no way tells you the story of Lindsay's journey.

In a previous post I let off steam right after her IEP meeting. I needed to say those things. I needed certain people to hear them, for better or for worse. Now I need to say some other things, and some of the same people need to hear this.

I have no doubt that Lindsay could have aced the ACT and SAT tests even if she had never been staffed and given special attention  in school. This is not a story about a child who went from failure to success, academically. Lindsay has always had academic success. This is about an internal and external journey she has navigated over the past four years.

I've outlined the basics in the post "Tears". In 7th grade, we knew there were problems. The usual middle school things, when girls are casually vicious to each other and boys can't figure out how to control all that bulk when their brains aren't keeping up. But also things that didn't have anything to do with prepubescence. The speech disfluency (remember I didn't know it was called that then--just knew I was pulling out my hair trying to follow what she was saying as she stopped in the middle of words and started again..and again and again....). Her seeming inability to work with groups of her peers (they pretty much ignored her, for whatever reason) and her tendency to see about a foot past her nose (unless she had a particularly interesting internal dialogue going, which decreased that distance to, oh....nothing.)

So there we were, her dad and I, knowing something was just not going well, and not getting better. It was actually getting much, much worse. All this time, she was completing school work, for the most part (8th grade science was one long crying jag, not because she didn't like science, quite the opposite. She LOVES science. She just could NOT figure out what the teacher wanted, and he could NOT figure out why) and getting great grades. Teachers pretty much love her, though one teacher called in a snit and said she was "refusing to do her schoolwork". Seriously? Did she even KNOW my child at all? This is a girl who is constitutionally unable to lie or disseminate. I could only think that the teacher somehow called the wrong parent. When I got home and talked to Lindsay, she did not deny that she had told her teacher that she didn't WANT to do the work. But she said "I NEVER said I wouldn't DO the work". Now, from any other kid, this might sound like she was spinning a bad situation. You would not know Lindsay if you thought this about her, though. She sincerely did not realize the teacher would not understand the difference. She was just saying she didn't like the work. All you have to say is "I'm sorry, that's so sad for you, but you still need to do it" and she'll go back to her desk and do it. It also illustrates about Lindsay that her lack of social awareness meant she would have no idea the teacher would perhaps react that way to the criticism.

In 7th grade she had a language teacher who assigned a great project where students got to perform a Chautauqua presentation about whomever they liked. Lindsay picked Louisa May Alcott (which warmed my cockles--talk about great role models!). We attended the performance. Other kids went first, and did admirably. It was all supposed to be extemporaneous, not memorized. Lindsay got up and you could tell she knew her material, but every other word wouldn't come out completely. There were little throat stops, hesitations, restarts, direction changes....over and over. Greg and I were both looking at each other, thinking "What the hell kind of grade will the teacher give her..."). She got a pretty good grade, actually. It seemed weird. Was it just us? Her teacher told us it was "just how Lindsay talks". 

We heard that a lot. "It's just Lindsay. We don't want to change her. It's her quirky manner" or "It's why we love her" I didn't want to change her, either. I did, however, want to see her ideas and incredibly cool take on the world be communicated and understood.

The person who made me see the difference between Lindsay's style and a speech issue that was a barrier to communication was Ruth Ness. This is for her. She knew that helping Lindsay with speech would not change who she was. I should have known, too, being her mom. But how do you really know that telling a bright child she has something "wrong" with her won't be devastating?

Disability can be a lot of things, and you hear this all the time from people with much more obvious physical limitations, but it is not WHO a person is. The effort to meet the challenges of whatever you are facing that limits you from participating fully in your world will certainly have an impact on you as a person, but your inner core of self-knowledge remains whole and unchanged. After four years, I see Lindsay being able to show the world who she is, remarkable and fascinating and smart and proudly geeky, without the "noise" of all the speech disfluency she struggled with at 13 or 14. I see the same startlingly perceptive, seemingly oblivious socially (while completely purposeful in her projection of herself), empathetic, hilarious young girl-woman that I have always known was there, but who now has the tools to let others see her too.

Saturday, April 26, 2014


I am sitting beside my teenage daughter while she agonizes over yet another essay for a scholarship. Her struggles have more to do with how difficult it is for her to express to the world what an amazing and unique person she is. She wants to be an engineer. To  build things that make the world better and more beautiful. I think she is eminently qualified to do that, if I may say so as a totally partial and biased observer.
But really, she is.
Quirky, sideways thinkers are so needed in this complicated world. Women who are quirky, sideways thinkers especially. Oh, we need to have people who build regular roads and cars and refrigerators, but we need, we have ALWAYS needed, people who think it would be so COOL to invent wings that would really work. Not a 9-year-old thinking it'd be cool to grow wings, but an almost-adult thinking that she could figure out how to really design something elegant and wonderful and truly usable.
Notice I didn't say "useful". That would imply a judgement. Who knows in what direction her design could take her? Why does she need to limit herself to "useful"? Simply "usable" is a lot to achieve.
She dreams. Sometimes it seems like crazy things.
Everyone tells our kids to dream big. But somewhere along the line, they start telling them in a myriad of small ways to scale that back. To take the classes that would apply to their goals, to put into writing what you want to study and what kind of degree you want, or what kind of job will be waiting for you when you graduate. To have a backup plan.
I know, and she knows, that studying engineering in college, taking the classes like Physics and Chemistry and Calculus and English Composition, is not only necessary, but has its own attraction. It's a process, it's rather plebeian compared to dreaming about wings and energy and inventions, but it's not drudgery for her.
She really GETS that college will be about learning and gaining understanding and physical capabilities that she will spin into marvelous things. 
Crazy possibilities.

Wednesday, March 5, 2014


Babies and small children cry--it's what they do when they need something. It's normal and expected....up to a point. I won't even get started on how many people tell you not to pick up your child when she's crying, because they need to "cry it out" or "self-soothe" or whatever crap is happening at the moment. That's not where I want to go with this right now. I will say that you as a parent just basically gotta go with what your gut says. Pick her up. Let her cry. Depends on the moment, right?
But when  child reaches a certain age, when they decide (another way to say "when they notice other people and want to please them") that it is better not to cry about something that upsets them, when they've figured out another way to get what they want or need, when things that used to bother them don't bother them as much, or they've figured out another way to express their frustration or anger (also another blog...), they don't cry as easily or often.
I've actually had a first grade teacher tell me my daughter needed to "get a tougher hide". Regardless of all those internet memes that say we need to make the world a gentler place, I'd say it was particularly useless advice. My hopes for a gentler world are pretty faint, and I just don't think making my child "tougher" is going to work.
I now have a 17-year-old who wears her emotions pretty close to the surface, and is quick to tears under some situations. Since she was fairly young, her tears changed from "I'm hungry, I need a diaper changed, I have a tummy-ache" to "I am hurting somewhere I can't figure out where" and "I am psychically wounded". I know, all children feel this, and some respond with tears at some point. And I don't discount the hurt that a tween girl feels when a boy she likes acts like a jerk (perhaps an alternative definition of "tween boy" is "clueless jerk"). But I've always known that my child's tears are deep-rooted and come from a very hurt place. It's why it's so hard for me not to cry when she does.
We just endured her last IEP meeting (bureaucratese for a bunch of adults in a small room dissecting your child's issues and difficulties as if she were a specimen, all the while she is sitting there listening and then expected to be rational and happy we are all so concerned...okay, I know that's bitter, and they're all good people who want to help and I DID ask for, no....BEGGED for the help, but still...). That was Monday. I won't go into details. We have done this now four times. I think. Maybe more. It's required if she is to receive the help she needs. And from which she has benefited enormously over the last four years.
It was a strange trip to even get the help. My child is, not to sound like I'm exaggerating, massively gifted. I mean GIFTED. Not "isn't that cute she plays the piano so well for a 12 year old" but "Oh my God how did we end up with this?" gifted. Learning to read before she was 3, and knowing words seemingly by osmosis gifted. Other kids looking at her like she's an alien from planet Brain when she was five gifted.
So when she had weird speech disfluency (I didn't know that word then, just that she couldn't get words out and repeated herself almost obsessively) starting I don't even remember when, and when she was unhappy and in tears just talking about trying to take part in groups at school in 6th grade, I asked a wonderfully talented woman I know, who also happens to be a speech therapist and mom to listen to her and talk with her when she was coaching the after-school girl-power program my daughter was in. She came back to me and said "Oh, yes, she needs some help and we need to get her staffed" That was after asking the actual school therapist and psychologist and her teachers to give me some feedback and maybe make some suggestions, and getting, you guessed it---ZIP! No, wait, not quite zip. I got "but that's just Lindsay--she's so individual and smart and we don't want to change who she is!" I wish I could say I thought "Oh, you don't want to change the fact that she gets left out of group discussions with her peers because they think she's weird and won't wait for her to get out what she wants to say? And that it makes her disfluency worse?" But I just went...oookaaay...and thought "am I crazy?"
So finally when my friend became speech therapist at Lindsay's school (THANK YOU LORD!) she and I got the ball rolling. Hmmm...maybe a better analogy would be we got the two-thousand-pound garbage scow inching out into the current. With turtles pushing.
But by the end of eighth grade, we had a document, an amazing, 10 page or more slug of paper that said Lindsay had SOMETHING we could hang a name on. Better yet, the school, the state and the Feds could look at and go "oh, well, if she has THAT, then we can DO something!" Don't get me started on how EVERY child needs this kind of attention. I'm just happy mine got her little slice of the pie.
Even then, we had ostensibly trained educators still playing with passive aggressive behavior and "forgetting" or being too busy to get to state mandated meetings to present and approve the paperwork that would get my child "staffed" finally, and get her connected with people who could begin to explore what would help her. These teachers seemed to look at me with sad eyes and say "but it's just Lindsay, and the other kids know her and accept her and we don't want her to change". Again with the "huh?" Half of my head was exploding, knowing she needed something, anything, and that Ruth (speech therapist) had confirmed it, and that these people were NOT the experts in this. The other half of my head was saying "my child is normal, I don't want her to be labeled, I think these guys have a point, they see her with her peers, I am SOOO not the expert here, they are TEACHERS for God's sake..."
One day I sat in Ruth's office, just before the end of Lindsay's eighth grade year, and she asked me about high school. I completely lost it and wailed "I feel like I'm just throwing her to the wolves!" I hated the thought of her, so small, so young, so, so, so DIFFERENT with that seething mass of hormonal half-wit almost-men and almost-tramps. Oh God.....
As it turned out, high school was so much better than middle school. They always say that, but who knew? There were even more "weirdoids" (the name her group of geeky-smart kids took unto themselves in 6th grade) in high school. And they weren't the stoners, they were all kinds. Pretty girls, sweet boys, girly-girls and tomboy girls. What they had in common was that they were all smart and completely accepting of each other. I won't even get into how impossible that would have been when I was in high school, oh....a zillion years ago...
But back to the crying thing.
Among all the people who have helped her in high school, several have been notable for understanding that when Lindsay cries it is from a deeply confused place of psychic conflict. Some girls cry when they "need to", they manipulate boys and parents and teachers with tears. They can turn the faucet on and off. Some are authentically hurt by a fickle boyfriend or girlfriend. But by high school it is pretty rare that girls cry much EXCEPT when they want to. Call me cynical, and tell me I'm wrong...but I don't think I am.
In the IEP meeting we had (it stands for Individual Education Plan, by the way) Lindsay held it together for the first time. It was a watershed moment, though I know that it took effort on her part. She was close. She knows some coping things now. I'm not really sad that she can use that kind of self-control, though I am not sure if the effort is harmful or a good thing.
In past meetings, she has gotten through the first 30 minutes or so of people talking about her, and in fact, what they say is mostly how wonderful she is, how crazy-smart she is and how lovely her soul is. That's in some ways what she has the most trouble with. I don't really know why, but it just goes deep with her, when people show her compassion and care. I think it's a little overwhelming that eight adults are in a room with express purpose of dissecting and discussing her. She feels it and it goes right to her emotions held close under her skin.
Some very kind and truly lovely people in that room noticed. They saw it as a victory, not only for Lindsay, but for them. I want to give credit to my astonishing young lady who has benefited from their help, not so much because they are good (they are, mostly) but because she understood very well what they were trying to do and that it would never happen without her effort.
I wish I could say to her first grade teacher that it's not as easy as "toughening" her up. It's also not as easy as making the world a nicer, gentler place. It's maybe just fighting through all the moments, finding the ways a child who can understand world conflict and the pain of children who are shunned because they are autistic and "weird" can figure out how she can make peace with her own emotional nature.