J, J, and J

For J's birthday, I took him to see Julie & Julia. We both enjoyed the escape, enjoyed the chance to sit and talk about something other than our children afterward.



Except, of course, that we DID end up talking about our children anyway, because the film, like most things in our lives, made us think of them. Ain't it funny how all roads lead to Roosters and Peaches.



If you haven't seen the movie, Julie becomes a blogger striving to work her way through Julia Child's cookbook in a year and write about her experiences through cooking. Her story weaves in and out of Julia's own, and as the tale wove together, I clearly shared things in common with each character. Julia and I both love food, talk loudly, and care about finishing what we start. Julie and I both blog, have unfinished novels, live urban lives situated to suit our husband's jobs, and fantasize about meeting the writers we admire. There are even more differences, of course, the biggest is this: neither of those women have children.



For Julie, a contemporary character, still in her 30's in 2002, childbearing time remains, but Julia clearly struggled with deep sadness about never having given birth. You can see it when she can't take her eyes off the passing carriage, when she lovingly strokes her friend's toddler, when she berefly sobs, "I'm so happy for her," upon finding out her sister is pregnant.



As the credits rolled, and J and I lingered in the theater, I asked him, "Could you imagine us if we'd not had kids?" I knew he could, and yet it still surprised me to hear him say it. We've had this talk before; I'm slow to absorb things sometimes. I told him, "As crazy as I get, as much as I can suck at parenting, I'm one hundred percent certain I'm one hundred percent glad we had our kids. I wouldn't have felt fulfilled without them, even though I get depressed sometimes now." J loves our children every single bit as much as I do, and he offers them more patience and better disposition. He wouldn't trade them. But, as he tells me, he could have been happy, he thinks, either way. He can imagine us visiting far away places, exploring hobbies, writing together. And yet he's happy, too, that we have children.



Happy might exaggerate how I am, but for me, having children felt like answering a question asked deep within myself. I needed to experience my children, to know them and to know me, to see my future unfold the way it felt it had been written to do.



In the movie, I could not relate much to Julie's hunger for blog readership, her need for accolades, her external motivations, the pain she experienced when criticized or rejected via her blog. I blog because I feel like I have no choice, and I do it for myself alone. I need blogging. I also deeply needed my children. I can't imagine my life without either.

Big News

There's big news at our house. Or, rather, lots of small stuff -- very small -- feels big.

Please wave your hands as you read this to dispel the hovering motes wishing to whammy me when I say anything positive. (WAVE 'EM I SAID OR MOVE ON!)

I went to a baby shower today. When I came home from my three hour absence, J asked for the highlights. I had only one: I felt like a person. (I went somewhere that interested me, on time, dressed in clean clothes, talked about current events, enjoyed myself, didn't rush, didn't keep my cell phone in my hand the whole time...) I don't regret for minute that I have this family that keeps me from attending most celebrations, but I realized today that I have missed those things in my life and that, surprisingly, I still remember how to have fun.

Rooster finished up summer camp yesterday. When I picked him up, his shadow showed me the video she shot of him in the talent show; Rooster got on stage and introduced himself and said, "I am going to perform the Stink Leg Dance!" Yes. The Stinky Leg Dance. The shadow said, "He's going to be okay! If you need me to babysit, give me a call." Children I hadn't met before came to hug the Rooster goodbye of their own accord. Two said, "I'm going to miss you, Rooster."

An old friend, someone I dated in college, got in touch on Facebook to commiserate about our posts about lack of sleep (his due to work, mine due to kids). He said, "I still can't imagine you with kids!" That surprised me. I hadn't told him much by way of details about our roostery family, but his comment kind of opened the door, and I hesitantly and nervously sent him to this blog. It was about 2 a.m. when he sent me a message of kindness and support to say that he enjoyed what he found here.

Here is a huge small thing. I took my son to the dentist. And. He? He? He was a perfect angel. At the dentist. I ... well, I stammered my thanks like an inarticulate goofball as we made our way out. Sure, it's a schmantzy Beverly Hills pediatric dentist who specializes to some degree in special needs kiddos and costs more than your average dentist, but my kid, who usually can't tolerate even a haircut, who howls and flails and kicks his 100 pound speech teacher, my kid sat still, obeyed, and had HIS TEETH CLEANED like a PERFECT ANGEL. He made jokes. He watched a movie and opened wide through cleaning and polishing and flossing. I nearly sent gifts to my friend Rosalie who sent me there, the dentist, the secretary, even the valet who charged me seven outlandish bucks to park for half an hour. AND DID I MENTION WE WERE ONLY THERE HALF AN HOUR?! The dentist started on time, finished early, and, left me woozy with the magnitude of going to a medical appointment that was simply no big deal. That no big deal is pretty gigantic.

And here is the biggest small thing of all. The other night, J and I were getting ready for bed. As usual, we tried to describe a bit about our days. I said, "Our kids were good today." A sentence like that, at our house, warranted an eye lock. We know when we're having a mind meld. Both of us thought, "Have we ever said that sentence before? Ever? No, not ever." Our kids are not bad children. I'm pretty fond of them to be honest! They have wonderful moments. They have beautiful hearts. But never have I been inclined to sum up a day by saying, in general, "Our kids were good today."

Still no sleep in this neck of the woods, my kids had naughty behavior for hours this afternoon, and the air is filthy with smoke and ash from nearby fires, so it's not the most fun weekend I ever had. But the little stuff? Feels pretty big.

Pay it Forward

When I read a post by Drama Mama last night, it got me thinking, and it hasn't let my mind all through my busy back-to-school day.

Drama Mama is among what I think of as my "imaginary friends" -- those bloggers I read and relate to with intensity enough that I feel like we are confidantes even though they may never have come across my blog or heard so much as a mention of my name. Without knowing it, Drama gives me hope, because she is where I want to be, a place I think of as "the other side." (No, I'm not referring to that kind of afterlife, just to life after the hardest part of special needs parenting struggles.) Both Drama's daughters are strong and amazing, and with her they form a triumvirate that have proven they can tackle anything, isms or no. Now that Drama is feeling like Drama, she wants to reach out and lend a hand to friend who, like me, remains more in the thick of things, still struggling to cobble together the tools, resources, inspirations, motivations, educations, inner strength, mental fortitude, physical stamina, chutzpah, whatever it takes, to help her child.

Drama Mama wants to help, but she isn't sure what to do. And that got me thinking.

I almost posted a comment, but I had too much to say. So I thought about it all day. I thought about how badly I want to rally, I want to get myself together, to help my child, to get us to that happy place, to make it across to where Drama and her family stand, and then I, too, will find others in the place where I am now, and I will help them.

How? What do they need? That is Drama's question. Since I am still pretty rooted, still where her friend seems to be, I can offer the following suggestions from my standpoint to Drama and anyone else wanting to lend a hand to someone who seems overwhelmed trying to help a child succeed. (And, NO, I am not hint dropping. I actually completely suck at accepting kindnesses, and I much prefer giving gifts to receiving them, so, please, no one indulge me in the following):

* A Coupon Book: Know those cutesy ones you can give your sweetie that offer a back rub on demand or a romantic dinner for two? A friend who is overwhelmed would welcome coupons for a free pass for a late night call just to listen as she vents, or an hour watching her child while she either gets out of the house or soaks in the tub.
* Humor: Send her one funny email every day for a week. Or better, love bomb her with two or three every day for a month. You can never laugh enough.
* Inclusion: Figure out an event where you feel pretty certain your friend and her child can feel welcome and included, then invite her. It can be a special needs meetup, a barbecue in your backyard, or a drive-in theatre -- whatever works for them that you suss out. She's probably struggling to find places like that, and more pressing matters probably are taking priority over having fun, so to be invited out to do something that's a good fit without having to do all the legwork is a huge gift. Just make sure you really do your homework first.
* Remind her of what's working: I often forget when things stink just how much worse they were a while ago. Make a list of the successes your friend and her child have had over time and tell her how impressed you are with what they have accomplished.
* Remind her that you have been there, too. Tell her about some of your darkest times from long ago and some of your brightest spots from the here and now. Let her know that you believe in her, and that you look forward to the day you can celebrate with her, when she and her family too join you "on the other side."

Sometimes I Prefer Editing to Writing

I am from A Land where the Rooster calls beckon.
I am from A Land of sweet Peaches on a hot summer's day.
I am from A land where the natives speak of durst and someping,
youbetchup and lemalade.
I am from A land of tinker toy towers and castles made of sheets.
I am from A land so foreign I often lose my way,
But it's beautiful where I'm from, if you care to visit.

Questionable

My kids are asking me questions.

Peaches: Who made people? How did they get their heads on, and their arms, and feet? How did you get made?

Rooster: Am I really a freaky person?

Peaches: Why does Rooster need help for speech and how to act nice?

Rooster: Can I be your baby always?

School Me

I have never sent my son off to school before.

(I have carried him along with me to my school community; not the same thing.)

Does anyone have good advice or online resources to get the Roo and me off to a (tolerable) good start in kindergarten? I'm feeling a little naseaous about the (impending doom) Fall.

I was thinking about buying the teacher a red velvet cake and maybe getting her a spa certificate. Otherwise, I'm at a loss.

And how DO you do that strikethrough business in Blogger, anyway?

Third Verse Same as the First

I am from A Land where Roosters call at any hour and day breaks over and over again.

I am from A Land of Peaches, sometimes sweet, sometimes a little rotten (though never to the core).

I am from A land where the natives speak of durst and someping, of hitted and lemalade.

I am from A land of tinker toy towers and houses made of sheets.

I am from A land I built myself; a foreign place.

Here I am.

Notable and Quotable Nine

Peaches is 3. Rooster is 5.

Peaches: Can you get me the toy guitar?
Me: No, you didn't clean up the dolls yet.
Peaches: That's why I need the guitar! I need to sing TO THE DOLLS! (Duh, mom.)

Rooster: Will you buy me a satellite?
Me: Uh, no.
Rooster: Pretty please? I really need one. Pretty please with cherries on top?

Peaches: You have old feet, Mom. Look at them. They are old.

Notable and Quotable Eight

Peaches (age 3): But mama, I can't be responsible. Responsible is not fun.


Rooster (age 5): I feel sad.
Peaches: Do you have the blues?
Rooster: Yeah.
Peaches: Do you have the yellows?
Rooster: Yeah.

Rooster: When I grow up will I be a baby?

Revising My Biography

I am from A Land where Roosters squawk any hour, night or day.

I am from A Land of Peaches, sometimes sweet, sometimes rotten.

I am from A land where the natives speak of durst and someping, of hitted and lemalade.

I am from towers built of tinker toys and houses made of sheets.

I am A Land where no one sleeps easily and everyone makes too much noise.

I am from an alien land, a place I built myself.

I am from A Land.

Now You See Me

I am the incredible shrinking woman.

Sure, there are upsides to shrinking; I mean, I am glad I lost those pesky 15 pounds that were gnawing at my comfort in so many ways. Wish they'd have taken a few more friends along with them, but ....

But mostly I am shrinking in ways that means dissapate or withdraw or lessen... I don't really have the right words, because it seems my language is shrinking, too. My brain has lost plasticity, my heart has lost elasticity, my energy? Feels like old ratty underware that keeps falling off.

I am doing less. I am saying less. I am less. I have less to offer.

Not keeping up with my emails. Struggling to maintain household systems. The kids go to sleep later and later. This week, the lone week in which summer camp schedules mean I don't have to drive ANYONE in the mornings but myself, I leave earlier, shrinking from home, from sherpa duties, shrinking out the door...

My nickname used to be Productive Girl. Seems she shrank away to almost a tiny nub.

It makes me come across, I think, as happier. Like when people ask me how I am? I stick with a word, that F word, so bland and small and all I can muster -- Fine. Because that much I can muster.

Everyone knows it's about to be fall, the season of change, the season of challenge, a season I used to cherish, when I was BIG and lived BIG and could experience the feeling of HOPE.

I am compartmentalizing. I am retreating. I am stopping.
Tonight, I'm just really tired.

The Land of A

I am from a crazy coop where Roosters squawk any hour, night or day;
I am from a peachy grove where pink prevails and sugar holds sway.

I am from the land of A.

I am from a land of faeries and fun, fighting and fury.

I am from screeching rooster calls,"durst" and "lemalade."
I am from an alien land, and from this place I made.

I am from the land of A.

I am from "so proud I could bust."

I am from a bean bag sandwich and towers build of tinker toys,
I am from not enough sleep, and clearly too much noise.

I am from 14 dolls named Lucy.
I am from kisses sweet and juicy.


I am from, "See you in the morning when it's light outside."

I am from the land of A.

I am from love, hope, frustration, worry. I am from fatigue and perseverance. I am from perseveration.

I am from autism, and
I am not from autism.

I am from the land of A.

Thanks for That

So, I keep reading about how anger is about ego. It makes sense to me, and helps me think about how I want to be less angry. I want to let go of ego. I want to make peace. (Don't throw up. I mean it.)

Today I was thinking about this while I jogged, while I watched two delicate hummingbirds off to my left dancing among flowers and honeysuckle on the bike path, and how can you not want to be less angry when you see something like that? While you are smelling the honeysuckle and you have your headphones on and the breeze is blowing?

Have you ever seen someone -- like an ABA practitioner, for instance -- respond to attacks or annoyances by thanking the offender? I have seen this a few times, most recently when my son kept halfheartedly swatting at his ABA guy JT, and each time JT said, "Thanks! Are you trying to high five me? Thanks. Now let's read a book. Thanks, let's read..." It didn't take long to work on the Rooster; he soon read the book and stopped his attention-getting negative behavior. I learned from that, and it stuck with me. I have realized, for one thing, that you can disarm an angry person by thanking them. For another, it doesn't do any good to get angry back sometimes. You, I mean I, need to take things less personally. Saying thanks helps with that.

So while I might be notoriously pissed off at autism, I decided that I would like to let go of some of my anger, and that, since autism seems pretty pissed at me, too, I would like to actually thank autism for a few things.

Autism, in fact, has given me some gifts, and therefore I would like to thank autism for:

- community. I really appreciate the friends near and far, both huggable and only in cyberspace, that I never would have had if not for the diagnosis. Even my husband, who mostly hears of many of my new friends secondhand, feels the blessings of the connections.
- patience. Not that I have much, but I've learned how to find some when I really need it. I might have mentioned, but I used to have a magnet that said, "Lord, give me patience. And hurry it up." I'm a little bit better since then. (Yes, I am.) Yeah, I still have a long way to go.
- healthier eating. I am not a huge biomedical follower, but we do a little, and we believe that changing the Roo's diet helped him. As we did so, we certainly learned a great deal more about the value to all people of more organic foods, fewer preservatives, and conscious eating. Hey, Peaches still loves her some pop tarts, but now they cost us a fortune at Whole Foods! And we actually feel a little better about it. I'm just saying.
- jogging. For a long time, I HATED jogging. HATED it. But then, as things got worse and worse at my house, it seemed like the one thing I could justify escaping in the evenings to go do, while J watched the kids. Lately, I've escaped some miserable witching hour meltdowns to go "work out" for a half hour or so, and let me tell you, the things I used to hate about jogging are delightful to me now by comparison. Autism, you know how to help me burn the calories, bud; high five! (Oooh, that's kind of ego related too, isn't it?)
- help with Scramble. I keep finding the word "casein" and I never even knew that word before autism came along. I'm racking up the points! (I really will keep working on that ego thing. It's a marathon, not a sprint.)

Hey, autism? Thanks. I still don't like you. I still think you suck. But, thanks.

Yawn...

At our house, we went for three and a half years without rest, without functional sleep. What I am able to recall of that painful time has a hazy grain shot through, and I know we lacked the necessary energy to enjoy the good moments the way we wanted. And we did have good moments; it was period in which I gave birth to both children, my brother-in-law married, we bought our first house... but we stumbled through much of it.

My most vivid memory of the toll the sleeplessness took happened early on, before Peaches' birth, when the Rooster was less than a year old. I remember on a Saturday late morning, marching in to the bathroom where my husband stood shaving, bitterly bemoaning to him, as I held my arms in cradle shape and the Rooster cried, "YOU said YOU would take a turn, honey, please! You said you would! I'm soooooo tired! It's your TURN!!! PLEASE!!" My husband sat down the razor and touched my arms gently. "Yes, honey," he said to me. "Look at your arms. You are not holding the baby. It's my turn. See?" He pointed to a bouncer on the floor, where Rooster wailed. "You just need to find a quiet place and go to sleep now. I will try to rock him. It's my turn. I have him. You sleep."

Now that we get reasonable sleep at least a few nights a week (though never more than four, I'd estimate), in some ways things feel harder. Oh, certainly not overall! Certainly I feel lucid enough at all times to know whether or not I am holding a child now. But I've diminished my endurance. About a year and a half ago, a parent introduced us to the joys of melatonin for the Rooster (vile curses to the heartless pediatricians who silently sentenced us to sleep torture as if they'd never heard of melatonin themselves), and shortly after that we sleep trained Peaches. Still, obviously, neither of our kids will win any sleep trophies. About three nights a week, sometimes more, they have nightmares, or accidents, or illness, and the Roo is prone to waking up at three in a hyperactive frenzy.

The sleep I do get in a seven or eight hour night reaches deeper levels, and to pry my eyes open at two or three or four feels more arduous, and rising to deal with situations sometimes feels impossible. Where I used to feel like I slept with one eye open, that I listened to and for my kids while I slept, ready to bound out of bed during the nursing ages especially, and while I went at least a decade of waking exactly a minute before my radio alarm turned on, now I feel like I am pulled from sleep like someone drowning pulled from the sea.

I am tired. This is more than a statement, it's become my apologetic mantra. It's nearly my identity. I am very tired. So tired that last night my husband ended up sleeping with the Rooster. I woke up when our boy marched in full of rough and tumble in the wee hours, but I couldn't manage to raise up my head. The words I thought to say came out like grunts, and the next thing I knew, it was Peaches coming in, having managed to sleep until nearly dawn, wanting to know why she saw daddy in bed with her brother.

I might get more sleep than I during our darkest time, but I'm losing my touch; the cumulative effect on me means that I am more exhausted than ever.

I find myself thinking about sleep the way I used to think about boys in my teen years. I fantasize about sleep, I manipulate situations to try to get closer to sleep, I try to figure out the mysteries of sleep, here I am even journalling about sleep. One thing that I come back to again and again is the idea of sleeplessness impacting cognition. I lose my pens a hundred times of day now, sometimes when they are behind my ear, in my other hand. I forget names of people I've known for YEARS. I can't remember why I called you once you answer the phone. Should I really drive a car?! Probably not, but I have no choice. And what about medical schools?! It horrifies me now, absolutely horrifies me, to think of young, new doctors trying to save lives walking around sleep deprived. I don't know why, but this idea plagues me regularly. And Gitmo? Sleep torture? Yes, you bet, it's torture.

So, how are you this morning? You might have to tell me twice. I'm tired.

A Good Day?

Here is a trick question for you:

As an autism parent, which is scariest, seeing your child have (a) one of the worst behavior days, or seeing your child have (b) one of the best behavior days?

Some of you, I know your answers. Some of you I've never even met, but I understand you from the beautiful way you communicate.

There are those who I know would say that the worst days are scariest. You are right, of course. The worst days make you wonder what will happen if things don't get better, and what if the worst gets worse. That is scary on a practical level.

There are also those who I am pretty sure would say that the best days are scariest. Right? Aren't there a few of you out there like me? Aren't there a few others who have many hard days in a row stacked up like Tiny Too Little trying to climb up high enough to kiss a giraffe, and then that one good day comes, that one day when you reacquaint yourself with that long lost vagrant called Ease, and it scares you nearly into losing your balance and toppling to the ground for fear -- for the certainty -- that it just will not last?

I sucked the marrow of goodness that came to me today, wallowed in a visit with old Mr. Ease, and tried not to let the fear interfere. But I would be a liar trying to curry favor among the wiser among you if I didn't own up to the fear that did make its way in around the edges, in some of the quiet spaces while my family enjoyed itself today. I admit to you, humbly baring my raw painful truths, that watching my Rooster navigate better than usual at a family gathering, I:

• felt proud;
• worried about regression;
• spiralled through the fears of what role his medication plays, and what might happen now that his blood work (Argh!) indicates we may have to change (Aaahhhgggh) medication (eeeek);
• berated myself for my own panic;
• waved my arms in the air to chase away evil deities.

Yes, yes, I DO hear myself. Remember, I said it was a trick question -- one in which there are no right or wrong answers. The truth is, I worry all the time. I see what is wrong with the worry, but still I do it. I can't blame autism... I have worried since the dawn of time. I am working on it. As part of my own self-conducted (and free!) therapy, I read all of you. At least I have learned enough in the process to know the worry isn't really doing me any good, and to celebrate the good days the best I can. At least I have learned enough to know I needed to write this post.

As weird as it sounds, I needed to confess: I (we) had a good day. And it scares me.

Words Fail

I'm not sure the right way to respond sometimes.

One friend says to me, "I think your kids are just fine. You just want them to be perfect, that's the problem."
Another sends me articles about the dangers of the GFCF diet, especially when blindly adopted by desperate and ignorant parents.
Others repeatedly invite us to do things with them that we've said (over and over and over) we can't do because there are too many challenges for it to be worthwhile to us. For instance, we don't indulge in weeknight outings, because we have therapies every night when we get home from work and school, and then there is the gfcf food situation to navigate, and medicines, and then there are the behaviors to contend with... so, still, no.
And then there are a few people who keep wondering in feigned shock why we don't just "get a babysitter?"

Sometimes I feel like I run out of words, or I can't find my tact, and so I say nothing. Other times I think I step in it. I end up having to apologize, or worrying I should have. Mostly I can't figure out what I'm expected to say, or what I could say that would suffice.

On the flip side, I have to recognize that the people saying these things to us probably don't always know what to say, either. Many are like we were before the Rooster came along -- largely uninformed about autism. And our boy doesn't fit the image most people have -- or that we had -- of autism. Of course, I totally understand that. I get where they come from, even though it results in some uncomfortable communication sometimes.

While I still don't know what to say to some of the people I'm describing, and I don't expect them to know what to say to us, I do know what I would suggest to people if they wanted to know what to say to us. I guess what I'm saying is that you could consider what follows as suggestions of things to say if you aren't sure how to navigate a conversation with parents of high functioning kids on the spectrum:

- I know it might be a challenge for you guys to join us, but if it works for you, we'd love to include you in our (fill in invitation to trip, party, dinner, etc.). And if you can't make it, just know we have been thinking about you and we hope to see you soon.
- Are there any things we could do to make it easier to include you in our (blankety blankety blank)?
- I'm interested in the gfcf diet. What can you tell me about it? How did you decide to try it?
- You let us know when there is a good opportunity to get together, and how we can help make it work out, because we'd love to see you.
- Your kids are doing great. I know that means you have been working hard.
- I don't see what you see, but I think you are probably the expert on your own child.
- I don't see your child the same way you do, but that's natural since I spend so much less time with him/her.
- I know you've been through a lot, but you should be proud of the work your family is doing.
- What can I do to help? If nothing else, I could listen.

Now, anyone have some ideas of what I ought to be saying? I'm open.