Friday, August 29, 2008
One night months ago, the rooster got sick late at night. He threw up. I got him clean and stripped his bed and gathered the things he needed, then we went to our leather sofa together. I propped him on top of my body so he could sleep almost sitting up, and I put a trash can and several bags on the nearby floor. Every time he felt sick, I helped him, held him, hugged him, whispered reassurances. "It's okay, rooster, it's okay. I'm here, I can help. You'll feel better soon. I love you. It's going to be all okay soon. Don't worry, baby, I've got you." We'd sleep an hour, then repeat, all night.
Lately, the rooster is disregulated much of the time. He contorts his face into hostile expressions and juts his neck toward us and snarls, "I'm ANGRY!" For a while he will be fine, especially if he's listening to a book, watching TV, building, or playing outside. But even then he can change his mood unexpectedly. He hits, pushes, pulls hair, pinches, spits, sometimes with no explanation, sometimes just after smiling and playing.
I admit sometimes I overreact, sometimes I cry, sometimes I get upset. This does NOT help, of course.
But after an episode, if the rooster seems to feel how much his rage shook me, he sometimes climbs on my lap to talk. No, he can't explain what just happened, and he doesn't apologize. He doesn't particularly want to talk about it. I can't always figure out what he wants to tell me. But sometimes it is in these moments that I know he feels my love, that some things are getting through. Sometimes what he says is this: "Remember I throwed up? Remember, mommy? Remember us on the sofa?" I say, "Yes, Roo, I remember." And sometimes he says, "You helped me throwed up, mommy. You did that." And I say yes, "Yes, Roo." And he puts his head on my chest.
We have this little routine we do, when the Rooster feels amenable. Peaches does it too. I say, "How much does mommy love you?" And the kids' line is: "So big!" Then I ask, "For how long?" They say, "Forever!" Finally, I ask, "Who loves you more than mommy does?" Every time they shout, "NOBODY!" it makes me smile.
I may not be all that great at balance, truth be told. (As if you couldn't tell.)
Earlier this week I found myself in a strange place -- at the orientation for Peaches' toddler program. Yes, my two-year-old starts school this coming Wednesday. I know I mention this a lot, but I work at the school my kids attend. I work there, and yet somehow it never really hit me that my daughter would officially become a student -- move from the faculty childcare center to an actual classroom -- until I found myself sitting across from her teachers, my friends, and listening with the other incoming parents to them talk about the curriculum. Curriculum. I heard them announce that the children need to come with backpacks and my mind temporarily spun into another orbit, sought to recalibrate for the sudden gravitational shift. I looked at my name tag for a moment, and it helped me catch my bearings, help me assimilate the knowledge that I sat in that meeting as Mother of Peaches, new student, and I began smiling thinking with some excitement of back to school shopping for a fancy new pink backpack.
Not long after I started to breathe normally again, the president of the parent association gave her welcome. This is where I lost all hope of balance. After describing her role as parent association president, she announced that she had once been the classmate of one of the toddler moms in the room, and that the two of them met for the first time when they were two years old. A dad in the room spoke up that he is an alum. Everyone began to get very Kumbaya on the topic of embarking on lifelong relationships, and how our kids would start together in the sand box, and then someday attend one another's weddings.
I couldn't believe it when I started to weep.
No, I didn't get swept away by the presentation or in the beauty of the journey Peaches would begin in a matter of days, though I know that is probably what I should have done. Instead, as I'm sure you can guess, my involuntary reaction had to do with what my rooster will miss. My rooster will not graduate from this school. We are lucky to have him there one more year until he is five and public school can offer him full day classrooms that can meet his special needs. The parents in his class and I will not sit next to each other at Winter Sings and Open Houses and Secondary Schools and reminisce about quickly time passed since our kids rode trikes and sang Wheels on the Bus together. And that isn't the end of the world. The rooster will find a right place somewhere, somehow, and form connections of his own - I have to believe that. And I can't let every typical event for Peaches turn into a grievathon for my rooster. But in that moment, what should have been Peaches' celebratory moment of entering school, I fell once again into the abyss of fear for what this year will bring for my Rooster, just one classroom away, but worlds apart. He will have outstanding teachers again this year, a rich curriculum, and a cool Diego backpack, he will be supported and nurtured and loved, but we are planning this year as the end of his journey at this school for typical students, not the beginning. He did not move on with the kids he started with last year, but is repeating the three-year-old program, a head taller than some of his new classmates, yet teased by them because he still wears diapers, and when this year ends, he will say goodbye to his current class, he will say goodbye to the school he shares with his sister and me as our second home. Right now I have no idea where he will go next, but what I hope for most of all is a place where he can learn how to be more comfortable in his own skin.
A colleague and friend sat next to me during orientation; she is also the mother of Peaches' friend and classmate. She looked at me in horror when my eyes welled up, and I'm sure she thought I'd become overly sentimental. "Are you crying?" she asked. I think I nodded. "The rooster," I whispered. She looked at me, got my meaning, and said, "But you need to be happy for Peaches."
This is very good advice. It's true. I know it. I am happy for Peaches. We bought that Tinkerbell backpack yesterday, and we celebrated, just Peaches and me.
But I also can't seem to help worrying about when she might leave her big brother behind, and how he will feel when he understands that we can't all be together anymore.
Thursday, August 28, 2008
When I sat down to write to you a little about the Rooster in preparation for the coming school year, I realized it might seem a little lame to you at first, as you already know him and have worked with him. But then I realized just how much I have learned about him just in the last couple of months, as well as how much he is changing, and I hoped maybe you'd find reading this helpful. Or, maybe really I just needed to write it for my own self, my own way of facing the transition to another school year with my little guy.
While I admit I had moments in the beginning when I doubted the diagnosis of autism, I don't anymore. (Believe me, I always knew we had issues! I just wasn't sure the right name for them.) I don't think I understood all the faces that autism can have. In fact, now that I've read countless books, articles, web sites, blogs, I still don't see that many autistic kids who seem to match my boy, but I also understand the concept of a spectrum much better than I used to. You can have 30 kids with ASD in a room, and they can all be different from one another. Spectrums and continuums have a lot in common, which is to say that they have infinite variations.
What does autism mean for the rooster? Language delays, and pragmatic weakness. Disregulated behavior.
We had him on some medicine that seemed to help a lot. Great, right? Well, no. You see the medicine had side effects. Those side effects had the potential to seriously impact the rest of his life. We knew the chances of side effects were slim, but once we saw that our boy began to show signs of them, we knew we could no longer take any chances. He is no longer on the medicine. Yes, that makes him harder to work with. And that makes me sad. However, I have to think that having been on the medication allowed him to show what he is capable of, and somehow we have to access that stronger, happier, better adjusted boy through other creative means. It is not easy.
There is no one I have more faith in than all of you. There is no one I have more gratitude for than you. I know we are on a team to help the rooster overcome autism, and so I want to help in any way I can.
Language delays, and pragmatic weakness mean that the rooster might have a plentiful vocabulary, but putting words together is so hard for him that he often makes up his own words (jargon, like "eeling" or "floppydodah" or "durst"), or he "scripts" from books or television. He tells stories that sometimes seem plausible but are entirely made up, cobbled together from a cartoon he saw, a story he heard on the radio, and the book he heard at bedtime. I don't know how many times people come up to me and say, "Hey, I heard all about how you...." They think we went to Disneyland, spilled ice cream all over the kitchen floor, got a new dog, and none of that happened, except on Nickelodeon and in Fancy Nancy and in our boy's imagination. That is the cute part of his language issues. Of course, you've seen the uglier parts. He doesn't always know what people are asking of him, and he pretends like he does, and then his temper rages. Or he feels a frustration he can't articulate so he screams, pushes, or shoves. Or he wants to play with someone and can't figure out how to ask, so he gets in their face. This is not an act of aggression as much as it is his compensation for deficits, language deficits and social deficits. Lately we've been trying to give him "do overs" -- if he screams, "Get away!" to his sister, I will say, "What you meant to say is, "Please don't touch my Legos, I'm still using them. Then I know your sister will say, 'Okay, I will play when you finish.'" Sounds obvious, but I admit it shocked me how well he took to this strategy, and how well it was received by his sister.
Disregulated behavior. Well, doesn't that just sound overly euphemistic?! I know, sometimes I just feel like screaming at his bad behavior. It scares me sometimes and angers me frequently. But I have to keep remembering that the experts in the field all tell me that his behavior is a way of telling me how he is struggling, and that the best strategy is to prevent situations that rile him up rather than trying to put out fires. We put up a rope swing in our yard and bought him a sit-and-spin, and getting him to do this helps with his behavior at home, but nothing works all the time or one hundred percent. I also have learned that autism cannot be cured with discipline. Time out means nothing to him, though we use them to give us a minute to cope!
Sensory challenges. The rooster never saw without double vision until last year, plus he was born with low muscle tone, and these things clearly have contributed some sensory problems. He also cannot gauge pressure. He hugs too hard, holds crayons too tightly, etc. He used to scream if anyone touched his head, but that stopped when he had eye surgery. He really seeks pressure, loves the sensation of spinning, and craves being in water. Sometimes when he seems aggressive, it turns out one factor has to do with these sensory issues. Sometimes it's a complete mystery to me, but a mystery I hope some day to unlock if I am patient.
Digestive Problems. Now, I don't want to give you too much information here and gross you out, but the rooster has never digested well. Turns out that this is a huge commonality among kids on the spectrum. Dietary interventions make a substantial difference. This is NOT the only reason we do dietary interventions -- we do it because he is SO ALLERGIC and we see a cognitive benefit from the diet, but more on that after this digestive issue. I want you to know that for a period of many months we wrote down every single thing our boy ate, how his health and digestion were, and how his language and behavior seemed. This was tedious, but worth it. Turns out that when he's not digesting well, his behavior worsens. Makes sense, of course, but still helped me understand him better. We are so grateful for your support adhering to his diet.
Health issues. This little guy saw so many doctors and specialists, had so many prescriptions, suffered so many infections, that we felt that he needed to go live in a bubble. My journal indicated he got an infection before he was six months old, as well as exhibited allergy symptoms, and about two and a half years later still seemed like neither had never gone away, only worsened. Two surgeries, several blood tests, three allergy panels, 11 doctors, and endless allergy-proofing later, we decided on our own to try that wacky diet business we'd heard about and poo-pooed because there was nothing left to try. Guess what? He has not had a SINGLE infection since the day we started, SIXTH MONTHS AGO. I have to eat my Jenny-McCarthy-bashing words; diet is amazing. Sixth months without an infection feels to us like a miracle. Again, though, nothing is perfect; even with vast improvement, I would never call him the picture of health or anything.
So what is this diet all about? It's about keeping our son breathing and thinking, and it's hard work, but well worth it. He is on a gfcfsf diet. It's free of gluten, casein, and soy. That means he can't eat pretty much anything you buy in the ordinary grocery store except for raw fruits and vegetables, juices free of artificial ingredients, steamed rice, and certain meats. We avoid everything artificial and buy as much organic as we can get. We will send in everything he needs to eat, and he's usually pretty happy with his choices, as he adores sweet fruit and crunchy organic veggie snacks. He's a good, healthy eater. Yes, it's hard when he sees a cupcake with sprinkles he can't have. But we are ready to do what it takes to get him specialty treats when he needs them. He can have popsicles that have all natural ingredients, and those usually win a smile from him. How I wish they -- or anything -- provided a good bribe for my boy, something that would encourage him to do any of the trillion things he refuses (brushing teeth, potty training, changing diapers, cleaning up, taking medicine, sharing, etc), but so far I have found him entirely unfazed by carrot or stick; what drives him is, I think, far more chemical or neurological or just plain hard wired than it is rational enough for bribes or threats.
He is a complicated little guy. He has been since the day we met him. Even then, he didn't want to cooperate, born late and requiring a vacuum assist 32 hours into labor, stuck because he had his small fist raised to his face as he howled his way into the world, and within hours in the nursery the nurses asked us to take him in our room as he kept waking all the other babies. But he also loves fiercely, and he loves his school, loves his teachers, loves being a part of his community. He can't always tell you himself, but I can. We all walk around the house singing the planets song, we all enjoy seeing the handmade treasures from your class around our house, we all value your wisdom and your kindness, we all start this school year with thanks, respect and warmth, along with our anxiety.
I don't know if this letter helped you at all, but I know I feel better. Happy Fall.
Wednesday, August 27, 2008
Tired. Struggling. (Me)
Like back when I first started blogging, only harder and worser as i get older and more frayed. (what is wrong with "worser"? i taught English... i like it)
But my last vestige of hope lies here, so here I have stumbled breathlessly, and rather than sing the same sad song out of tune with my last wheeze, I have a tangent for you instead. Maybe it'll distract us both:
Wordle. Have you tried it? No? Immediately, you must. Yes, now, unless you want to read first down to my last word. I am too frayed and this computer to pathetic for checking the exact address, but you'll find it; try worldle.net or some such. If you blog, when you get to the site, give it the url of your blog and then go, "Ooooooh. Ahhhhhhhhh." Be a smartypants and capture a screenshot if you can; I would thrill to see it on your blog next time I visit. (btw i am a total junkie right now, reading and starring and rereading and forwarding and reading aloud to my husband the things you write, and i would comment instead of lurk, but see above...)
Also, someone tell me how a tired and struggling, frayed frazzle would most quickly take all the drivel of the last six months and plop it quickly and painlessly into some program/site/something-or-other and push a few buttons and wham out prints a book of sorts just for my own collection of hard cover journals? Or even paper cover? There must be a way to buy your own blog as a book in this age of if-you-can-think-it-you-can-buy-it-online.
Monday, August 25, 2008
Today was the last time babysitter A could watch my boy this summer. She is one of our blessings, one of the super stars we've lucked into. When I got home, and told rooster to say goodbye to her, he didn't understand it was her last day. He told her, "Tomorrow, A, let's go on a date!" She laughed and told me they had watched Rachel Ray on TV talking about "date night" and he'd been asking her out ever since.
Tomorrow the Rooster will have a sitter we got by referral. She watches kids up and down the street. I interviewed her, my husband checked her references, and she has special needs experience. Sounds good. But all the rooster's other sitters knew me before they knew him. We felt connected. This time, I'm hiring someone. It's a job. And I feel anxious about it just being that. I adore my rooster -- I see all his sides, good and bad, and I love the package. But if I only knew him as someone I got an hourly rate to watch, I might have a lot harder time gathering the patience. I might find the diet an enormous pain, get annoyed with him, not feel like reading him a trillion books, feel frustrated with his outbursts. I might. I wonder if babysitter J will. I guess I need to take a leap of faith. So many of you are so much better at faith than I am, maybe you could lend me a cup?
And so the summer ends; I can't tell if I'm more anxious about one more week of the rooster at home, or a year ahead at school. But one thing is sure: it's beginning to look a lot like fall.
Friday, August 22, 2008
Before my son, my eldest child, turned six months old, I went to the hardest funeral I've ever attended. I went to the funeral of his very first playmate, the little girl with whom he shared his first play date, the child of my dear, dear friend, a child whose birth had brought such joy into my heart. The pain engulfing my heart on that day defied measure, and my poor spastic brain could think of nothing else but the fearful echoing question, "How can her parents survive?"
Her parents. Her mother had become my close friend through a writing group around the time when we both were engaged. We had nothing in common except all the things that matter to me, and we forged our friendship within a smaller group of that writing circle. One day after we'd both been married about a year, she called to ask if I could cover a writing workshop for her, and during the conversation we found ourselves giddily confessing our early-stage pregnancies to one another. Later, while home on maternity leave, my giant ankles propped on the coffee table, I got another call from her: "Guess what I just did?" I thought she had a funny story to tell me, maybe something like the goofy things that I kept doing and blaming on my "pregnancy brain." But no. "I just had a baby! Two hours ago!" Somehow, she made it sound like she just baked a cake or something less physically exerting. Even through the phone, her love and joy radiated, and pain didn't make it to the top ten list of things she wanted to talk about.
I admittedly felt scared of delivering my baby, and in fact had asked her months earlier, "Aren't you scared of giving birth?" She laughed. "No," she told me, "it's the part that comes after that scares me. I am much more worried about raising a child than having a baby."
You will rightly snicker at what I replied - I clearly overestimated how I would handle the challenges facing me as a mother. "I feel like that part will come naturally," I said.
My dear friend has always, and I mean always, had wisdom I envy, and I am sure she rolled her eyes on her end of the line, though she didn't let it show.
She is an amazing, graceful, gracious, wise woman, and a mother to two darling little boys. But I never forget that she is also the mother to a beautiful little girl, a treasured girl, a child we said goodbye to only months after we said hello.
I had no idea how she and her husband got through the several services, the video tribute, the readings they both gave, the goodbyes. I was not sure how to get through it myself, and it was not my child, my grief, my place to ache so deeply. I know that the loss of that child changed who I am as a mother and as a person. I also know that my friend has taught me more about mothering than she realizes.
Among the substantial proof that my friend has more wisdom and strength than I may ever attain, she often sought to help me understand how her faith guided her after her child died. We cried together, and she spoke to me of her belief system, and of her hope, and the belief within her that she must pick herself up and live her life passionately no matter what. At the funeral, I remember fearing that she would not want to be my friend anymore, that my child and I would remind her too painfully of her loss. But that is not how my friend lives, loves, believes. Those fears I felt reflected my own darkness, and my friend does not live in darkness.
With the recent passing of Vicki's son Evan, I have felt almost afraid to type either of their names. This sentence and the previous one have taken me longer to write than all the paragraphs leading up, because I feel like an interloper, like by writing of them I show some kind of disrespect. And then I remember what my friend has taught me, I remember her wisdom, her strength, her light.
Several months ago, around the time that her daughter would have turned four, I went in on a gift for my friend, a necklace with three hearts representing her three children and her love for them all. I remember feeling anxious about giving her that gift. Would it seem too bold? Would it require painful explanations? Would she feel hesitant to wear it in public? Would it seem presumptuous of us to bring up her loss? Would it seem like dwelling on sadness? When she opened it, the other gift-giver and I exchanged glances, and I think I held my breath. Of course, I needn't have worried. With her first look at the necklace, she understood the love we and respect we meant for it to convey, and she said how much it meant to her that we recognize the important milestones when so many others do not. We celebrate the beautiful baby we knew as well as mourn her loss.
I am grieving these days. There have been losses near and far, losses I've written about and losses I haven't, and I am not a good griever, if there is such a person. I am not as strong as I'd like to be. But I know this. I am more prepared to learn from life and loss and death than I used to be. I am stronger and more committed to light and hope than I thought I could be, because I have known, read, connected to women of strength and beauty. My friend has taught me that there is no choice but to go on, and so you do, and that no one corners the market on grief. My friend has taught me that everyone has the right to live, love, and grieve in their own way, but that sadness is not a competitive sport.
I have a lot to learn, but I take it one step at a time. I am blessed to have wise teachers in my life.
Tuesday, August 19, 2008
It's like how, before you have kids, you might have a dark and cynical sense of humor, and then after, you weep at diaper commercials or photos of Boy Scouts. Mom Eyes, in my experience anyway, often leak.
Also, Mom Eyes open wide with awe at certain things. Say, a grocery cart brimming over with food and toddler while guided down aisle after aisle by a man. Other eyes might overlook this magical sight completely, but not Mom Eyes, or at least not mine.
In no way do I presume or assume that Mom Eyes have superiority over other eyes. Mine, I know, do not. I do not ascribe one trait such as compassion to all mothers or lack of it to everyone else. I am only saying that when I developed Mom Eyes, things shifted. Not better or worse, just a little softer on the focus, and with some strange zooming habits.
Mine zoom in rapidly on dangers, bargain toys, potential babysitters, all things autism, and family stories unfolding, just to name a few.It's like that time I flew back from a conference, and my flight got delayed by like a jillion years, and I got rerouted, and then after having an empty seat next to mine in which I could belatedly but blissfully sleep off my sullenness, I saw a flight attendant escorting some tall, smelly guy my way. Or at least that is what I saw at first. Then, shift. Click. Mom Eyes kicked in with the zoom feature. I saw the soldier coming back from Iraq, and when he told me he had been flying "home" for over 30 hours so far, I saw in a flash his wife, his kids, and, most of all, his mom. As he kept subtly putting his hand gingerly to his knee, which had shrapnel in it, for some reason my Mom Eyes pictured him as a little boy who hurt himself on a playground. The image made no sense, but my mind's eye went there anyway. When he talked about his wife having to drive the kids an hour or two out of the way to pick him up due to our rerouting, I had to close my eyes tightly for a few moments so that I would not cry, sensing that crying would not be doing this strong, worn out warrior any favors.
I knew without a doubt that my eyes saw things differently on that airplane than they would have about five years before, and I knew that it was because I too looked forward to going home to family I had missed even over the course of just days - home to J and the rooster. In fact, I was carrying Peaches then, in my second trimester, and you know what hormones do to vision and perspective. I have to say, it can burdensome, but I also count it a blessing, having my Mom Eyes.
I got a call not too long ago from my mom back East, telling me she had heard on television the name of a boy I knew in high school. I sort of dated this boy, sort of befriended him, and we helped each other out with this and that. This boy had been at war once, too, serving in the Gulf while I went to college, but he had left the Marines only to be shot, it turns out, on home soil this summer. According to what my mom heard on the news, a girlfriend shot him and put him in the hospital with serious injuries. When my mother first said his name, it put me back in high school mode for a minute. The concept of what she said she heard on the news at first sounded so preposterous, so surreal, it seemed for an instant like a joke. Of course, injuries are no lauging matter. But my knee jerk reaction had been to think, "Oh, that M. Such the flirt/lady's man/thrill seeker. This must be quite a sexy story." Then I Googled it, and sexy it was not. Tragic. Heart-breaking.
M is still in the hospital, in a long-term acute care rehab facility now, and the woman who shot him took her own life, according to the local newspaper where M now lives. I've known just the sketchy details of all this for about two months and I have thought of it often with great sadness. I guess due to the distance and the high school connection, and my inability to find out more information, Mom Eyes didn't kick in; I sent plenty of good thoughts M's way, but that re-focus mechanism didn't jar me into that acute, exquisite sense of vulnerability until today. My dear friend, C, a doctor in our hometown, texted me to say that M's mother is her patient. She also wrote that M's rehabilitation is "slow." M's mother is devastated, a wreck, heartsick, scared. Click. Shift. Of course she is. This is no longer a one paragraph news story onto which I can project a simple resolution; I can see the tragedy vividly now. C also texted that she conveyed my concern and good wishes, and that M's mother remembers me from way back when. With this, the leaking.
And so I guess my point is this: My Mom Eyes see and remember that we are all someone's child. M is. So was the woman who put him in the hospital. A blessing and a burden, this perspective.
Sunday, August 17, 2008
1. My ‘ex’ is still…..2. I am listening to….3. Maybe I should…. 4. I love………..5. My best friend(s)……….6. I don’t understand………..7. I’ve lost my respect for………..8. I last ate………….9. The meaning of my display name is……..11. Someday………….12. I will always…………..13. Love seems to be……….14. I never ever want to lose…………. 15. My mobile phone is………..16. When I woke up this morning……..17. I get annoyed at/with……….18. Parties………..19. My pets………...20. Kisses………..
1. My ‘ex’ is still like a bad dream.
2. I am listening to my kids talk, and realizing all my failures.
3. Maybe I should meditate.
4. I love brainstorming, especially when it works.
5. My best friends are brave people who must have strong senses of humor and very generous hearts.
6. I don’t understand how to help my son be happy and successful.
7. I’ve lost my respect for more than a few doctors.
8. I last ate cereal, and I fear I'm addicted.
9. The meaning of my display name is my complicated identity, my many selves.
11. Someday all will be revealed. Or not.
12. I will always worry, wonder, think.
13. Love seems to be inadequate sometimes, invincible other times. Why?
14. I never ever want to lose hope.
15. My mobile phone is new, and it has a shortcut to Google Reader. I could complain about some things regarding my new iPhone, but the Reader thing makes it all worthwhile.
16. When I woke up this morning... for the 20th time, I finally got my butt moving, but slowly. I would kill for some sleep.
17. I get annoyed at AUTISM. Hate the word sometimes.
18. Parties are too much work to be any fun anymore.
19. My pets are a thing of the past. I don't want anything else that needs poop cleaned up and trips to medical professionals.
20. Kisses are addictive.
Saturday, August 16, 2008
Rooster, at "average" on the grumpy scale by recent standards, scripting, but pragmatics and sense of humor intact: "Fee, Fie, Fo, Fum, I smell the blood of an Englishman. Be he alive, or be he dead, I'll grind his bones to bake my WAFFLES!"
Rooster, just slightly annoyed, grabs a greeting card from his sister, who was pretending to read it: "NO! That's not what it says. It says, 'Dear Turkey Legs!"
Peaches, in what I must assume was a sincere attempt to be helpful: "Mama, you need a BRA."
I have no idea where they get some of this stuff.
Friday, August 15, 2008
If you blog about special needs kids, I have read you. I have read and reread. I feel like the godmother to your children, I spend so much time thinking about them.
If you are a friend who emails me instead of commenting on this blog, I have lingered over each word you've sent me, even if you haven't yet heard back. Sometimes I start replies. Sometimes I finish and don't send them. I hope to do better soon. I appreciate all that you have written to me.
I don't know why, but I'm struggling to communicate, but desperate not to lose touch, and so all I can do during bloggable time on some days is read, and think.
Maybe I'm bored and ashamed of singing you the same songs and I'm studying your prettier melodies, your wiser lyrics, hoping my own voice will improve.
Maybe you're annoyed you haven't heard more from me. Maybe you're relieved.
But I'm not gone away, and I am paying attention, and I am trying.
Recent high: The rooster in the back seat has been tormenting Peaches, and then says, "Sorry." She says, "I still love you, Rooster."
Recent low: The regular specialist sends us to the scary specialist with scary instructions to look for scary possibilities about scary symptoms, and we all load up to drive the 35 miles down the freeway. When it takes us two hours to get there in traffic, though, we miss the appointment, my cell battery dies, we get lost, the children melt down, and I still have at least an hour's worth of work to do from the day job after the long, empty-handed, still scary return trip.
Maybe those gems best demonstrate why I lurk lots lately.
Wednesday, August 13, 2008
See, I grew up pretty much without a father. He didn't officially run off for good until I was ten, but even in the decade of his presence, his absence was frequent. When we saw him, he was angry, or drunk. Not both, usually, as drinking made him seem as happy as it made the rest of us sad, at least until he passed out. So given the lousiness of the father/daughter thing, I think I had subconscious dreams of "a do-over" in the mother/son department.
You don't really get a do-over with childhood, though, do you. And if you did, it certainly wouldn't come while you are parenting -- which is SO NOT child's play.
Another thing I've come to realize about my own misguided assumptions is this: by marrying a man the polar opposite of my father, a man as gentle and mild-tempered as my father was volatile and acerbic, I did not guarantee myself anything. I did not guarantee myself a placid boy. You can marry a saint, but when the genes do their little Bingo Ball spin, you get who you get and you don't get upset. As a matter of fact, I myself am not as placid as a mother as I would have liked to believe.
It turns out? I yell. Wow, I never expected to be a parent who yells. I, in fact, HAD and DESPISED parents who yell. And still I yell. But I am working on it.
I the "working on it" list these days, you will find, along with 250 household topics (like fixing the sprinklers broken for almost a year), these parenting items:
- yelling less, breathing more
- modeling the gentleness I hope to instill
- putting aside those romantic notions, and dealing with reality head on
Wish me luck. These, too, may be romantic notions... only time will tell.
(PS Thanks to those of you sending the good emails, thoughts, comment lately. Sorry I'm in email hibernation. I will try to write soon, it's high on the list. I'm struggling a bit, as I know you can see... but I am working on it...)
Monday, August 11, 2008
Yep, you will hate me for my selfish self-pitying if you don't turn back now. Hey, I hate me for it it too.
But unless I write it down, it burns me from the inside out. So I beg of you, stop here. I'm about to wallow.
Who? Are? These? Children?
Where did they come from?
All I'm saying is terrible twos plus autisic four equals bad day after bad day.
No one here is ever HAPPY. He seems allergic to happy, unless he is one-on-one with an adult who is only there to agree with everything he wants and satisfy his every intense need, and as long as that person agrees to never impose a limit, change his diaper, give him medicine, or ask him to do anything for himself. Even then he can suddenly freak out because that adult was too loud or looked at him in a way he didn't like. But all it takes is another child around -- including/especially his sister -- and he is a raging, pushing, shoving, hitting, screaming, tirade throwing, spitting, noncompliant heap of rage, every waking minute.
The hours I spend alone with the two of them every afternoon feel like they have gone from difficult to torture. It is unthinkable that I would be able to manage using a stove, doing a chore, talking on the phone, taking a shower, exercising, paying a bill, or even stepping into another room without them during those hours. We would probably end up in the emergency room.
So you read it, huh. You are so right to judge me. I am failing miserably. There is nothing you could tell me I don't know. And still.
Sunday, August 10, 2008
Of course it's silly to sit around and wonder: did this meal hurt his digestion, and so his behavior? Should I have taken him to that class? Should I have kept him home from this party? What if I quit my job? What if we got a... bought a ... found a... tried a .... Of course that is all silly to wonder this each time we see regression and want to blame ourselves, someone else, anything.
I'm just wondering: can someone put me in touch with one of those tv show supernannies?
The reason I have such a problem with him is that he cheated on his wife, who was sick with cancer yet still supporting him 100 percent, while saying he should be elected president of the United States because of his moral superiority and his better judgment compared to everyone else; then, to make matters worse, he got caught, and subjected his dying wife to further injustice. While his infidelity disgusts and revolts me, his arrogance, ignorance, sloppiness and stupidity make it clear that he should never become anything close to THE LEADER OF THE FREE WORLD.
Okay, with this, I abandon the political scene and will return to my natural habitat -- wallowing in parenthood angst.
As we pulled away from a drive-thru we'd gone to in desperation for the Rooster - he was STARVING after the park, and we'd gone through all our healthy snacks -- he started polishing off the only fast food we thought was safe (gfcf) to give him -- french fries. I fired up my new iPhone to find out where we could go to a restaurant for healthier gfcf foods for him and found out that McDonald's was sued by a family of an autistic boy. Turns out there is even weird crap in the fries. Guess we're in for more dysregulation.
McDonalds? You stink.
Friday, August 8, 2008
The worst thing you did was the best thing you did.
You don't know me, and yet I am a woman scorned.
But don't think for one minute that your cheating, lying, adulterous ways are what have me so pissed off.
What infuriates me enough to bother with writing you -- and believe me when I say I have countless more important things to write about each and every single day -- is that I wanted you to be my president.
I pride myself on being able to smell a rat. This time, maybe I was desperate. Maybe I wanted to cling to the hope of the impossible. Maybe I somehow allowed my cynical self to get suckered by that "change" nonsense.
I thought: this guy seems like he might actually care about our nation's broken education system. I thought: this guy talks like home. I thought: this guy seems real.
I failed miserably in my judgment and in shame I am kicking myself.
If only you'd come a little closer so I could kick you instead. Then I might feel better.
You are just like all the rest. Some days I wonder if the only person qualified to be a politician is someone who wouldn't have the job.
I would not vote for you for trash collector, though it seems your skill set might make it a good match for you. I am grateful that you will never be my president.
You have humiliated me, and sickened me. I am a woman scorned.
"In 1999, when Edwards was a senator, he said of President Clinton and his affair with Monica Lewinsky:
'I think this president has shown a remarkable disrespect for his office, for the moral dimensions of leadership, for his friends, for his wife, for his precious daughter. It is breathtaking to me the level to which that disrespect has risen.'
In 2006, Edwards' political action committee paid $100,000 in a four-month span to a newly formed firm run by Hunter, who directed the production of four Web videos showing Edwards in supposedly candid moments as well as in a public speech talking about morality."
Wednesday, August 6, 2008
I know, it's because we said it out loud.
I know, development works like that.
I know, that is part of his autism.
I know, this too shall pass.
I know, we could try another diet, more acronyms, some test, etc, etc.
I know, all kids have ups and downs.
I know, he is disregulated.
I know I'm always vowing to complain less.
I know, I know, I know.
But don't you think regression still sucks?
Do you remember that game, LIFE? My cousins used to play that game, and I remember trying to get them to play anything else with me but that. Even as an eight-year-old, the game depressed me. You had a little car you rode around the board, and random cards you drew brought you joy or pain, births or loss, financial gain or ruin. LIFE seemed too random and too short! Old soul = cautious worrier.
Sometimes I look at my kids and have a mental image of those pink and blue pegs in the little plastic car. I try not to wonder where on the game board we will find ourselves or to ponder what the deck will deal us next. I don't like games of luck, like LIFE or casino games, because I am superstitious, and I know if I have good luck, that means I'm about to get hit by some giant whammie, and if I have bad luck, it'll throw off my energy and concentration, and more bad luck with follow... and basically I feel irrational, out of control, desperate for control, and nothing about it is fun. And not just for myself, either... I find myself worrying about all the other little plastic cars and pegs riding around the board of LIFE, too... it's exhausting being an "old soul."
Many days feel like a game of Frogger. Remember that old video game? I am the frog trying to avoid the tractor trailers on the freeway. I hate that game, too. So violent...
Is it any wonder I have found escapism by way of Facebook's Scramble? Words, just words. Words are about as exciting as this old soul can handle.
I've said it before and I'll say it again: Thank you, Internet. Lately I crawl in my cozy chair in my bedroom first chance I get to hide in my SCRAMBLE devoid of all things symbolic, random, metaphorical, risky. While I lick some recent wounds, I feel like I need the escape from things that remind me of LIFE.
Saturday, August 2, 2008
Rooster: Firemen are bad. They grab you and take you away. Then they lock you in the jail!
Me: No, honey, firemen are helpers. They put out the fires.
Rooster: No! No they don't! That's the POLICE.
Rooster: Peaches, will you marry me?
Peaches: NO! I won't. I'm too little.
Grandma (who overheard the above): Rooster, I would be happy to marry you.
Rooster: No, Grandma, I'm not allowed.
Peaches (who has just been told she cannot wear a pair of tap shoes two sizes too big for her with her shorts to school): DAMMIT! For God's SAFE! For! God's! SAFE!
Teacher: Rooster, stop! That's not safe!
Rooster, to teacher: AHHH! I am going to tell your daddy on you!
Teacher (aside): I haven't seen him in 20 years, so I don't think he's really going to care, but you go ahead and tell him if you can find him.
(Okay: confession time. I don't give blood any more because it makes me faint. I'm usually mildly anemic and I have vasovagal issues. Just the sight of the bloodmobile yesterday made me dizzy - because I'm also just getting silly as I get old.)
Anyway, as you can see, I'm having trouble blogging lately. I've been working on a post for quite some time, and that is a first for me. It won't come. I am trying to process the grief of several recent losses, and for once I am unable to do it in my usual way. I'm stuck. I'm thinking too much, trying too hard, worrying what people will think... And I don't know how to get untangled. I will keep trying. I know there are more than a few of you still out there, checking in, and I send you all my thanks for that.
Next post up: a notable and quotable that hopefully lends some needed levity...