Seasons, Reasons, Celebrations

Before I even knew I was Jewish, I can remember all kinds of Christmas guilt and anxiety. It had nothing to do with religion.

I grew up with an alcoholic father I rarely saw, who traveled for "business" most of the week, and who bought us a 40-foot camper so my mother would keep my brother and me away for the summer, but Christmas eve found us all around the tree each year, unable to figure out how to be a family. Inevitably, my brother and I bickered over ornaments, my mother complained about how hard she worked to make things "perfect", and my father smilingly slurred snide and sarcastic zingers from his corner of the sofa. My mother grew louder and my father quieter and more sour, as my brother's head nearly exploded from the pressure, until at last I wept.

My crying infuriated everyone. Once I cried, my mother blamed my father, my father blamed my brother, my brother called me a baby, and I cried more. My mother hurled something against a wall, I cleaned up the splinters, my father passed out, my brother turned up the music... Then, to bed, so we could wake up and unwrap countless presents wrapped opulently in guilt and misery.

The Christmas morning I was ten, we left on our one and only family vacation. With gifts of Arthur Ashe tennis rackets and tank tops, we headed off to Disney World, where my parents took Polaroids of us by day (wearing parkas purchased in the gift shop -- Orlando had a record cold spell and flurries) and took their screaming matches out on the town by night, while my brother and I stayed in the hotel room with a babysitter and a television that seemed inseparable. By my eleventh Christmas, my mother had left my father, my father had fled the country, and I had learned about Judaism when we moved in with my grandparents.

What on earth does this have to do with autism?

Well, it's convoluted, I admit.

I started liking Christmas a lot better after my parents split up, the inclusion of Chanukah in my life notwithstanding. I liked celebrating without the smell of alcohol, without anyone smashing things and screaming, without such fancy and expensive gifts. I started making my own community and spending time learning about my friends' traditions, making my own traditions, reclaiming the ideas of celebration and joy. I began dreaming about one day having my own family, raising children who never associated Christmas with vodka or beer, bitterness or misery, nor with religion -- children who knew they were Jewish and felt free to live, worship, celebrate, believe, and be, any way those chose, any way that made them happy. We would light candles and eat latkes, we would decorate the tree with ornaments we made ourselves. We would try, learn, love, be happy, and celebrate.

To paraphrase Sandra Cisneros, what no one tells you is that when you are a parent, you are still a child. The trick is not to let your own childishness ruin things for everyone. This is especially true if you are a parent of a child with special needs.

When it comes to Christmas, I don't want to neglect the little girl I still am inside, but I don't want to put her needs over those of my own children, who I want to put first. First, but not only.
So, it's complicated.

You can bet that Christmas has not turned out like I expected. Some years we light candles for eight nights, and some years we settle for two or three. Some years we have a tree, and some years it is just too much. Once or twice we have visited Santa. This year I managed to get out just a few Shutterfly cards. Part of this has to do with autism. It just does. It just does.

Once again, screaming has become part of my holiday traditions. I find that I have resumed my role as the one who ends up crying sometimes. And I admit there is some bitterness. Some guilt. These are not the holidays I envisioned as a child. This is not the life I envisioned. But not all of this has to do with autism. And I don't "blame" autism. We all are who we all are. We're complicated. We are real. We are a family.

And here is the thing: what I really wanted from holidays as a kid was not some picture of perfection. It is pictures of perfection --- and the insatiable desire for those illusions --- that led to the mess of my childhood. Yes, I had dreams of gingerbread houses and stringing popcorn. Yes, I had dreams of grating the potatoes and following my grandma's handwritten latke recipe, and playing dreidle and singing songs. But really all I truly wanted from my holidays was a loving family, warts and all. And so I am trying to joyfully celebrate the way the family I have today needs me to, not the way the girl I used to be might wish we could.

No latkes this year. No gelt. No tree. No gingerbread.

Warts? We got 'em. Oh, how we got 'em. But tomorrow we will gather with extended family and there will also be no vodka, no beer, no snide remarks, and no guilt. There will be autism, and maybe some (kids) screaming, possibly a moment of anxiety, but not too much. And there will be love, in abundance - the greatest gift of all. And because that means so much to me, I will try - try my best - not to look too far back or too far forward, but be right there, in the moment of celebration.

Whatever you believe or celebrate, I wish you love, peace, and all the best for a bright 2012.

It's Not You, It's Me

If, hypothetically, my children had a great day, I would not tell you about it.

I don't mean to hurt your feelings. I know you more than anyone would completely deserve to hear if they, say, had a day of no fighting, and made me Hanukah presents out of construction paper and found items around the house. After all, you have put up with my kvetching for years now.

It's just, to be honest, I don't blog for you. I love you, I really do, but I blog purely for medicinal purposes -- life-saving ones. You and I know for a scientific fact that if I told you something purely fictional of course like that they cuddled and smiled and called me cute and read books and went to bed on time with no complaints, that tomorrow I'd be doomed. I don't want to be so doomed that even coming here for my one catharsis could not sustain me. That goes against everything in my survival instinct. I will understand if you feel this relationship is out of whack and don't want to put up with my madness anymore, but a girl has to do what a girl has to do.

No, even though you have seen me through my darkest hours, lovingly and unselfishly, you won't hear me ever tell you about any crazy rare days when everyone in my family felt happy and good.

But I hope we can still be friends.

Starting Stopping

When I met my husband, I taught fifth grade, and he loves to recount how I never let him carry my very heavy teacher's bag for me. He also enjoys calling me his "locomotive." He says I have lived my life like a mission, and that I get a sense of control over the world by doing everything I can every chance I get.

But it's changing.

I have not yet met my son's new aide. This guy started work a couple of weeks ago, and I've already had three or four people tell me how talented he is at helping the Rooster, but I've let my husband handle that relationship. My kids take swimming lessons on Saturdays. They started about two and a half months ago, but I don't even know the name of the place. My only contribution to this endeavor involved terrifying my husband with stories of kids with autism and water danger, and sending him a list of local swimming classes; he took care of the rest. He has fought the battles with the discrimination and negligence at Roo's school more than I have. He has sat alone in the tiny blue plastic chairs at parent conferences for the very first time, putting me on speaker on his cell phone. He drops the kids off at school this year. He takes them horseback riding on the weekends.

After three years of frustrating our neighbors with our lawn, we have finally hired a gardener. Instead of volunteering for things, it's all I can do to send checks.

It's not one thing, it's everything. Even this blog. Where am I? What am I doing?

It hurts me, this falling away. In the hardest moments of it, I feel a little like I'm failing, a little like I'm dissolving, and I'm sad, worried, scared.

But my husband looked at me tonight and told me to get a grip. He didn't mean: go do more. He meant, lovingly: make peace with taking a breath. He meant, embrace stopping the madness. Don't weep about it, do it with intention. Choose to stop, don't go til you crash. He meant: it's okay to let your husband help you.

He said, "You have been holding the spinning world over your head and protecting it with your two hands while taking whippings, beatings coming at you from all sides. It makes sense your legs are tired and you need a breather." He said, "You have been working since you were 14. No one has ever said before, 'It's okay. I got this.' But honey, it's okay. I got this. Ok? I got it. And listen to me: everything is going to come back to you. Your energy. Your sense of yourself. It's going to come back. But only if you stop for a while. Stop, it's okay. I got this."

I don't exactly know how to start to stop. I don't know the rules for embracing letting go, dialing back. I have no experience at it. But I carry my husband's words around like a love letter in my back pocket, and they are giving me strength to try. To try to not try so much.

Magic

I have been given strict orders not to touch this... um...er... magic. Under penalty of being sent to my room, and other black magic consequences.

You see, my son tells me that his magic kit needs to "gain strength" so he will have "more power." His buddy McCabe from after-care at school told him that the recipe for improving magical powers involves GATORADE and RUFFLES, which, as you can tell, have been carefully mixed in my baking dish, beneath Roo's magic kit. They must sit there, undisturbed, I am told, for 10 days.

I've been sitting here staring at the photo and the above paragraphs for minutes, trying to figure out a conclusion to this post. Isn't that silly?

Sort Yourself

Dear World With Whom Rooster Comes in Contact,

Let's make things a lot simpler for us all. Please sort yourself into two groups. In group One, let's have those of you who have some understanding, concern, empathy, interest in, or tolerance for my son, a difficult but extremely loveable seven-year-old who has autism. Have a seat right here next to me; I'll bring you coffee, and you can rest your eyes, hang out on my sofa and skip the rest of this post.

Everybody else, those of you I will euphemistically refer to as The Other Group, please state your damage. Keep it simple. Help me understand. I'll even make it really easy, "race to the top" style, and I'll offer you multiple choice. Are you:
A. a victim of some type of abuse or condition that renders you unable to have understanding, concern, empathy, interest or tolerance for a loveable kid?
B. purely lazy? You don't want to have to deal? Not into effort?
C. mean? Yes, I am talking to you, as a matter of fact. Because I know what to do about groups A and B. I know that the members of group A just need some understanding, concern, empathy, interest and tolerance themselves, and I know that the pervasive gang in group B will come around one day when their lazy butts are on the other side of prejudice and bigotry, but you people in C? You people who just. want. someone. to. fight? Who just have to make life into one conflict after the next? I just want you to identify yourselves. Hands up, and here is your placard. I want to see you coming. So I can walk an extra ten miles out of my way to avoid you. Growing up we had a saying, "I ain't got no time for you!" You people have taken up enough minutes already. Identify yourselves, and march on -- the other way. Whichever way the Rooster's family is not marching.

We'll be headed that way, over there on that virtual sofa with cool kids who are sipping coffee and making the world better (sometimes even educating those folks in A and B even) and there is absolutely no room there for the likes of you. Consider yourself NOT INCLUDED this time, if you get my drift.

IEP and How We are Doing

The way I see it:

- We had some negative experiences at Rooster's first elementary school.
- We heard that another school nearby was better.
- We entered the better school's lottery.
- We got a call: we won the lottery!
- We showed up to registration and were told, "Oh, autism? No thanks, we have enough of those kids already. Our lottery was for typical kids. Go back where you came from."
- We consulted the district, officials, attorneys, etc. and heard we had a right to enroll our son in the better school.
- We finally were allowed to enroll him the week before school started.
- We heard, "Because you enrolled him so late, his services will not start on time."
- We told them, "Without services, he will struggle."
- The aide started three weeks late, misses work regularly, and is described by the principal as inadequate.
- My husband sees children bully, taunt, tease, hit, chase, and torment my son the minute he sets foot on the yard in the morning; my son doesn't want to go to school. He says everyone calls him "Bad Rooster."
- We get called for an IEP meeting to modify the behavior plan. At the IEP meeting, we hear that our son is a bully, that he is the one calling names, striking out. No one says anything when we describe the situation he faces the minute he enters the campus, never having even spoken a single word.
- We agree our son's behavior has regressed, but we place the blame squarely on a transition from hell because of the school and the lack of supports to which the law clearly states my son is entitled.
- We all agree the district provided aide does nothing, does more harm than good, and we decide to go for a behaviorist from a non public agency.
- I have to leave the IEP meeting ahead of my husband. He decides to sign it. But strangely there is no printer available. He reads it on the laptop, he signs.
- A copy comes home. It has a whole paragraph my husband has never seen. This describes my son as a menace and a safety hazard to others. It also has the wrong name of the school on the document, rendering the whole document invalid. A new document will have to be signed. This will all go down very, very differently.
- My husband? The nicest man anyone has ever met, will ever meet? Quivering with fury. He says, "They have messed with the wrong guy." He drafts emails, gets attorney phone numbers at the ready. He says, "I will never trust those people again. I will not allow them to abuse the system or our child."

The way the school seems to see it:
Kids who have autism should go away. They bring down our test scores, our precious API, our race to the top. They are expensive. We teach reading and math -- that is how we get paid -- we don't have time or money or energy for the whole child. We told you that after we accidentally picked you for enrollment but you would not listen. We said you didn't want you but you came anyway with your whining rants about rights and laws and blah blah blah. You should go back where you came from. Please leave your box tops, raffle donation, book club order, bake sale item and $1500 annual contribution in the box on the counter on your way out.

Dark Imaginings on the Night Before Halloween

Well, it's almost Halloween, and I'm feeling dark, so I'm going to get a little creepy here.

And to begin, I have to tell you something that probably will clash jarringly with your notion of me; are you prepared? It's not creepy or spooky, it's just going to be hard for you to believe, that's all. You see, sometimes I ... jog.

I jog slowly, of course, with poor form, and not all that far, but I jog when I can in this large, urban crazyzone in which I live.

And even though I jog only in the daylight and only in places I consider relatively safe, sometimes I imagine what ifs, especially as I pass those who are faster, fitter, stronger, but appear (even) less stable than I am. You know, if for some unimaginable reason, someone wanted to do me harm, I wouldn't be that hard to catch, that's all I'm saying.

So today I'm jogging (let's just use that word loosely, shall we? but I am sweating) in the park past a fellow who very well writes poetry in his spare time but for some reason gave me the sense I should allow him wide berth and no eye contact, and I'm in the Halloween mind set after passing a picnic full of goblins and aliens, and I find myself wondering the darkest what ifs. And wouldn't you know it? They lead me back to autism. *I heard you just now when you said you saw that one coming.*

It went like this:
If I disappeared during this jog, would people search for me right away, or would they assume I ran off of my own accord?
And if they put me in the news, would anyone say, "I know she'd never leave her family! She must be hurt, we have to help her!" (Because I would NEVER EVER leave my family, I only like to joke about it!) Or would they say, "Well, I know her father ran off when she was little, so maybe..."
And would my Roo miss me, miss climbing in my lap and calling me wildly unpredictable nicknames like "Mama Mineral" and "My Mama Pajama"? Or would my Roo find more peace without being drilled on his lessons, more happiness without being nagged about taking on more responsibilities, more tranquility with just his even keel, level headed, serene dad?
And if they never found me, would my husband find dealing with autism easier without also having to deal with me-dealing-with-autism?

Okay, okay, calm down. Don't send in reinforcements. It's not as dark here as all that. It's just Halloween is all, and girl has to get a little noir once in a while. I'll try to come up with a bountiful pre-Thanksgiving post next time.