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Hey there, Georgy girl.

I used to be the type of person, who, when struck by deep thought or desperate poetry, would get out of bed and write it all down. I would stop studying to write for an hour (oh really? Yeah, you are looking at a 2:1 writing to studying ratio throughout college). I carried a small, blue-papered journal and a faux Montblanc pen with me wherever I went for years, just in case I had to document something.

I have notebooks and journals filled with drivel, occasionally accented with poignant or otherwise expertly crafted prose. I haven't the heart to throw the pages away, and I haven't the stomach to go through them again to find the good stuff. I remember penning a lot of what I thought was pain, surrounding things like boyfriends, and breakups. Deciding What To Do With My Future was always a rabbit hole good topic for self-reflection, and my favorite, lamenting "lost moments" which took quite a bit of my mind too, though what I thought I'd lost at 19, or even 21, I can't be certain.

I know there are some events documented there that are worth remembering through my words instead of my visual memory. I admit it would be interesting to see how much the same I am, and how much I've grown. But as I reach for one of those wire bound, heavy covered lined notebooks,  I almost think it may be better to keep those pages closed. Right now I can remember myself however I want, and as long as I don't say any of it out loud no one can contradict my memories! I was brilliant! I was beautiful! I was going places! I...

I think I'm going to let that girl be for just a little while longer.

Shame

We are dealing with some "stuff" with Jake right now. It is overwhelming my life emotionally and stealing all of my time and energy.

I want to talk about it here because I think it could help other families to see the struggles we are going through. Over the years when I have talked about major hurdles, like sleep deprivation or medication or lack of childcare, I have always received emails from people who felt like maybe they were going to be okay after hearing about us figuring something out, or from readers who felt less alone because they were experiencing the same type of grief, or frustration.

but I also don't want to talk, at all, about any of it, because I have such great shame.

When you have a special needs kid you begin the race of parenting with one hand tied behind your back, no map of the course, and a delayed start. There are no books which have been able to help me parent my particular child. They have all been too cheesy, or too sad, or too assuming, except perhaps My Baby Rides the Short Bus.

And our families sure didn't have any training on how to "deal with this kid who is quirky and walks funny". The struggles my parents faced with me were more like, "How do we tame that sass mouth?" and "When is she leaving for college?". And Descartes, it appears, was perfect growing up, never causing trouble or making messes that weren't precious, and he certainly didn't sneak out of the house on his 16th birthday and take his new car out for a spin. So as supportive as our family is, they don't really know what to do either.

Which means we basically make it up, or look ahead on the trail for other families who have done some of this before. We know though, really, that parenting our kids is our job, with the support of school and community, but really this stuff is under our purview.  And while Descartes is a lovely, involved Daddy, I am mostly the at-home person who is front line, so I feel pretty responsible for the health, welfare and development of both of my kids, and I feel horrible when I can't get it right, and right now I can't get it right. I am not even close.

I was raised with three main precepts:

1. 
   

   We will always love you; although we may not always like what you've done, we will always love you.

2. 
   

   Jennyalice, you have been taught right from wrong, now judge yourself accordingly.

3. 
   

   Well, Jennyalice, as long as you did your best, whatever the outcome is fine. You did your absolute best, didn't you?

And that last one is what gets me every time because I can always, always try harder, do better. ALWAYS. There has not been a moment in my life when I could not have done something better. I could have planned it better. I could have executed better, or faster, or more precisely. I could have been calmer, or more emphatic. I could have been more eloquent, taken on a little bit more, recycled, bought the less expensive one, ridden my bike, called ahead, mapped it out, ironed it, sewed it in a straighter line with stronger thread. I could have cleaned it up right then, or never let it get that way in the first place. I could have thanked someone at the time. I could have apologized, or even better, not antagonized someone into an argument. I could have been patient... I should have been patient, or closed my mouth or thought for just a moment before I ever uttered a word. I should have proofread it all one more time before I turned it in.

I cannot think of anything that I have done that was my absolute best. And most of the time I just live with that gnawing feeling that I am not quite living up to my potential, and I am fine, but when it comes to raising Jake, it is like the wind gets knocked out of me because I know I have not tried hard enough. I know. I know. I know. 

and I know because I can name things I haven't tried. I have boxes and books and files and charts and half written blog posts of things that have not been tried, or they were tried and abandoned, and this "stuff" we are going through with Jake right now, I know I could be trying harder. I know there are things I should have done already.  I haven't read any of the books I bought on the subject, or taken much of the good advice offered by very close friends.

I am just so ashamed that I let it all get this far, and sad and I feel like I have failed my son, and you know what else? I'm tired.

And while I know that we will get through this seemingly increasingly-steep part of the course, I am just so frayed and ragged dealing with the mess, that I'm not sure when I am supposed to get it together to plan out the solution, and even if I do, will I be able to put it all into action, and convince everyone else?

Tranche de Vie

When searching for something else in my Gmail, I came across this exchange...Lucy was only 7 weeks old at this point, and it was summer which means shorter school days for Jake,  with no additional respite.

****

an email from my mom 
Mon, Aug 7, 2006 at 10:14 PM:

Hi Jenny Alice

I'm so very worried about you... are you OK?

Love,

Momma

and my response:
Mon, Aug 7, 2006 at 10:26 PM

hi there

I am okay mom.

I have a newborn baby and a 5 1/2 year old autistic kid, so any day is going to look hard.

Some days are harder than others, but generally even on those days it's not hard all day.

This morning, when Lucy and Jake were both crying I thought for a brief moment that I just would not be able to do this, would not be able to actually live this life.

Then the phone rang, and I thought, "No. This life, this life I can't live. It is too much."

Then Lucy had a blowout, and I thought "Okay, now THIS this is too much I can't do it".

Then Jake wanted something to drink.

Then I had to fax 24 pages to the credit union

Then I had to fax 10 more pages (and my fax machine goes VERY SLOWLY.)

Then they told me that I couldn't get my kid into the dentist until September.

Then I remembered that the babysitter has a twisted ankle and can't come today.

Then Lucy wanted to nurse. And I thought "Wow. This just keeps getting harder doesn't it?"

and then,
Lucy gave me a great smile, and 5 minutes later Jake sat on the potty.
and when he got out of the tub this evening he gave me huge hugs.

and I made delicious Thai chicken for dinner that my husband loved. I even remembered to brine the chicken first.

and now I am okay, and the dishes are done.

and I am looking on the Internet for communication devices for my son.

and we are going to be fine.

I have a great life...I get to appreciate very small things. Some people don't even notice the small things.

I know it is hard for you to have me have a hard life. You must have done a pretty good job raising me if I can bear it all and still have fun, and stay married. So pat yourself on the back and go to bed. 

Don't worry anymore tonight...there will always be tomorrow

I love you-

jennyalice

With Thanks

I'm still learning how to be a good mother. I'm not sure what I thought being a mom would be like, but I know this life is a lot different than I imagined. and I'll admit that while I'm not much for reading parenting books I do try to learn from the people around me.

****

My mom has shown me that it is extremely important to watch what you do, what you say, and who you are in front of your daughter, because that little girl is always watching, and in spite of all her intentions and the facade of free will, your daughter will grow up to encompass many of your traits, your mannerisms and your values.

MyMomster reminded me gently long ago, when I was dating, to make sure there is a piece of 'me' left for me at the end of it all, advice that put me back on track at just the right time, and something that I try to remember from time to time.

My mother I borrow from my husband, has shown me what it means to be fiercely loyal, and completely in love with a child; there is nothing she would not do for her children.

I have other mothers around me, amazing women really.

BQ taught me that the journey is an important part too, and that in my desire to get there, I sometimes miss the here, which is the only place I really need to be. Her endurance and perseverance in mothering continue to amaze me, even all these years later.

Pollyanna reminds me to be spontaneous, and continues to ask me to join in her joy even when I say "no" eight times in a row. She might seem like she is always on the fly, but she has a plan for the kind of mom she wants to be, and the opportunities she wants to create for her children. She shapes their world with a gentle hand and without ever raising her voice.

and there's Squid, who is the most consistent mother I know. Her children are brilliant, and they sparkle with curiosity because she shows them great things, and talks about great things, and expects great things from those little people. And when she is done parenting at home she sets out her door to make the world a better place for all children.

Sage is a baby (and dog) whisperer. Every child adores her because she loves with her whole heart, with a patience I can only admire at this point. I'm still working on actually practicing that one. She comforts and cares with such great depth that she's one of those people I can really cry in front of without feeling weak.

When parenting is not easy, not what I expected or what I want, or I'm feeling like I am just not a capable mom, I always have my sister to lean on or look up to. We have traded children when the ones that call us mom are making us crazy, when we think we cannot possibly feed, bathe and put to bed those shining faces even one more time. She is the one who reminds me of my skills, admonishes me when I am too indulgent, and loves my children like they are her own. She reminds me that loving myself is the first part of being the best mother I can be.

and there are other mothers too, like my neighbor a few doors down, who mothers me, respectfully of course,  because her children aren't near her, serving as yet another example that it does not matter whether you are related by blood, or by choice, or by marriage. What matters is how we love, and how we learn from each other.

Thank you to all the women who have mothered me, who help me mother my children, and those women who parent their own children so that they can become productive members of our society. I'm not much for Hallmark holidays, but today I raise my glass to each of you.

When You Burn the Candle at Both Ends

My whole life I have been told that I "burn the candle at both ends", or I "run myself ragged" or, perhaps in my least graceful moments, I "run around like a chicken with its head cut off."

I do, absolutely, too many things in too little time, and yet most of the time I feel like I get nothing done at all.

When I was younger, as a manager for Gap, I would work both the 6:30am to 3:30pm shipment shift and the 12:30 to 9:30pm closing shift so I could cut payroll at my store. Working both shifts was not really possible (which did not mean it was discouraged). It meant that I did not take a lunch break,  a dinner break, and if I could swing it, a bathroom break from 10am to 7pm when the store was open. It was ugly. Looking back I can understand why I was thin and had headaches all the time. I lived on Diet Coke (only because Rockst*r wasn't sold yet), and Brachs starlight mints.

The best part of working that crazy day? I could schedule enough managers the next day so I could take a day off. That left me free, after I locked those doors at 9:30pm, to head straight to Larry Blake's, or Bottom of the Hill, or Hotel Utah, so I could dance from the band's introduction to the last notes of Picture Book Pretty. I will never be so in control of my life again; the only thing stopping me from doing whatever I wanted to do, was me. The only thing that held me back was an apparent need for a modicum of sleep. Damn that need for sleep.

Recalling all of this in a conversation with my friend Sage, I began to tell her of some the places I have

inappropriately fallen very, very, deeply asleep. Here are a few of my favorites

© BrokenSphere / Wikimedia Commons

The North Reading Room, Doe Memorial Library, Berkeley, CA

Contrary to popular belief I did study, several times, when I went to Cal. My favorite place to study was the North Reading Room in the main library. I think you get smarter when you walk in the door. It feels like you are in a movie about a great university whenever you plop down in one of those wooden chairs at the long heavy tables.  I fell asleep here once while highlighting a "reader". Remember those? $250 for a bunch of photocopies bound together with a plastic binding? I fell asleep with the lid off my bright orange highlighter, tip on the page and soaked through many, many, many, pages. It also leaked on to my arm. I also drooled. It was dark when I woke up.

AC transit bus / Wikimedia Commons

 An AC Transit bus Route 51

After an extremely grueling debutante tea I attended in San Francisco I decided that I could not walk back up the hill from BART, and took a bus for a mile and a half. I must have sat down and fallen straight asleep. When I awoke a short 8 blocks later, I was leaning on the entire right side of a 20-something rocker type with dreads coming off his head in a star Mohawk-type pattern, sporting a jacket made of safety pins and body odor.

I had to give away the suit I wore that day because I could not get the smell of that man off the sleeve of my nautical-inspired, kelly green jacket and navy skirt even after two trips to the dry cleaner. I am not sure that guy ever even noticed I was there, but I will never forget him.

A Nail Salon Chair

This actually happens quite often, but there was one time, during a period in our life when Jake was not sleeping at all that I decided to treat myself to a pedicure; if I couldn't have sleep I would at least have soft feet. I went to a small place that was stacked high with junk magazines. I sat down with a big stack of People and Cosmo and Us, and must have fallen asleep in mere moments. I woke up over an hour later, leaning to the left,  the stack of magazines scattered to the floor between the chair and the wall, my head lolling about over the side of the chair. My toes were pretty, and the young women were eating their lunch quietly so as not to wake me.

I was thinking about these, and all of the other places I fought my heavy eyelids,  because lately I've been that tired again. Jake has had migraines, or sleep disruption or something this week, and my worries are different now that he's older and gained more skill. It's been years since I really slept all night long unless I take Benedryl or something. I get out of bed a minimum of five times to check on the kids most nights. Jake's covers slide off of him, and if they get to the floor he can't coordinate all of that to get them off the floor and get cozy again, and without covers he is understandably cold, so he doesn't sleep well and our mornings are more rough. He's been out of bed and wandering this last week, and while we have gates and locks and all sorts of things to keep his little self safe, I cannot help but worry that one night he will gain just that much more skill and be able to unlock the front door; he would be gone forever. So any movement or sound that does not sound like my children sleeping has me out of bed and down the hall.

I am trying to figure out how we fence in our front yard with a six foot barrier without seeming to be unfriendly, and outside of the building codes which dictate that front fences be no higher than three or four feet (like a little white picket). It would be a great comfort to know that even if he did get out the front door there would another safeguard before the cars and a steep hill and perhaps I would be able to sleep with both eyes closed.