Raising Pinocchio

2011-03-07T12:18:00.000-08:00

Evil Thoughts ...

Well, here's something I wouldn't normally share with other people ... I am so bitter about the fact that I have so much on my plate and other people seem to have just about nothing. IT'S NOT FAIR!!! I want to shout from the rooftop. Why do I have to have a child with special needs?? Why do I have to have the one with severe disabilities ... the one who can barely speak at the age of 8 ... the one who screams and shrieks and makes weird grunting noises ... the one who has no interest in anything that would be even remotely social other than kissing girls in his classroom.

People often tell me how strong I am ... friends and family who see the me who is struggling not to complain every living minute of the day. And yet those same friends and family members rarely ask how my son is doing ... and when they do, they don't really want to hear the truth. Or they are saddened or ashamed or scared to ask further. It's a relief when someone honestly says, "Wow. That sucks." Because it does -- autism sucks.

I'm tired of fighting for every support and service my son needs. I'm tired of seeing him do so well one day and so poorly the next 30 days. I'm tired of forcibly squelching any and every hope I have that, just maybe, we can beat this thing and carry on the semblance of a normal life. I'm tired of hearing him run around the house at 3am because he cannot sleep. I'm tired of seeing him jump up and down in front of the TV, watching a preschooler's program, flapping his hands. I'm tired of having to cut his food for him every day. I'm tired of having to wipe his butt and tie his shoes and wash his hair and cook his special diet and interpret his words for every other person who meets him. I'm tired of being so tired and feeling so defeated.

I don't ask for anything for myself ... I just want to be able to plan an outing for our entire family and feel confident that it won't end abruptly in screams, cries, and anguish for all. I'd love to book a trip to DisneyWorld or to the Poconos or to, hell, even the local Friendly's Restaurant and know we'll all enjoy ourselves. I want to be able to get a family dog and not worry that my 8 yr old will hurt it or kill it accidentally. I want to pray and know my prayers are heard.

So - there it is: my self-pitying rant for the day.

2010-09-21T06:30:00.000-07:00

Making Things Happen

I don't like to think of myself as a pushy New Yorker. Firstly, I haven't been a New Yorker for almost a decade. Secondly, I want to think that people like me and I act in a manner that encourages liking. And lastly, I have too much on my plate already to want to be foisting my agenda on the rest of the world.

Nevertheless, there comes a time for action. And I want to be involved with my children's education and school. That is why I met with the School District Superintendent today. I decided that our district should have a parent support group for parents of special needs children. As fate would have it, the superintendent thinks so, as well. Therefore, it was a very pleasant meeting.

I wonder what happened to the girl who was once too shy to collect for newspaper delivery. How did I get the backbone to actively seek out meetings with school superintendents? Thankfully, our district superintendent is laid back and welcoming. Even as I sat across from him, however, I realized the power this man holds -- he could pull the plug on my child's educational program in the blink of an eye, if he saw fit. It's kind of like meeting with Santa Claus - you're hoping he'll like you and that you'll remain in his good graces so that, down the line, your child will get what he needs without a hassle. So far so good.

2010-09-01T06:54:00.000-07:00

Raising Pinocchio ...
I've renamed my blog. When I write my book, this will be the title.

I so often feel that raising a child with autism is such a different experience than raising neurotypical children, that Luke falls in a class all his own. "Pinocchio" seems the perfect moniker for him. It's not that he's made of wood (though he tolerates pain pretty well), nor that he has a fixed wooden expression (though he can when he's anxious, bored or tired), nor that the Blue Fairy had anything whatsoever to do with his conception.

Time and again, however, I find myself remarking that Luke did something "just like a real boy!" So often he does things that are so atypical from the norm that every act of normalcy is a boon to my spirit. And, after all, I've wished on so many stars for him to make progress that Jiminy Cricket would be proud.

There's an interesting dichotomy inherent in having a child with autism ... you see it in many aspects of your life. For example, the people you thought were closest and would be most supportive are the ones who suddenly never ask how your child is and, sometimes even, eventually stop calling you at all. Complete strangers suddenly become more intimately knowledgeable of your life because you're living the same life ... a life with autism. I have friends online who know me better now than people who have known me for 30 years.

Your reactions to events are sometimes quite different than what most people would anticipate. After my son's first day of school, we had this "conversation":
Me: "Luke, did you have a good day or a bad day?"
Luke: "Bad day."
Me (unsure if he was answering the question or simply repeating the last thing I said): "Luke, did you have a bad day or a good day?"
Luke: "Good day." *pause* "Bad day. BAD DAY."
Me (heart skipping a little because he actually answered my question): "Why? WHY did you have a bad day?"
Luke (pausing, then jumping a little and spastically flapping his hands a bit): "No hitting!"

Oh, play the violins!! Halleluiah!

Let me translate: Luke had a bad day because he hit his teacher and aide. The great part is that a) he answered the first "why" question he's ever answered in his life and b) he answered it in a way that assures me that he knows hitting is bad. Yay!

So, "Raising Pinocchio" it is. Mothering a child on the spectrum is full of unexpected anxieties, disappointments, and heartache ... but now and then a real boy emerges. And that is when your dreams come true.

2010-08-27T10:04:00.000-07:00

I have not written for, oh, almost 4 years now. Having 3 children does that to a person.

I recently wrote a "poem" of sorts ... normally my poetry rhymes, but this one does not. This poem was about how it feels to have a child with autism. There are good days and bad days ... and on those days, good times and bad times ... few days are all bad, but none are ever all good. At least not with our brand of autism.

Anyway, so, my friend very kindly posted my poem on her blog. Unbelievably enough, within 24 hours of her posting it (she honestly stated in her blog that she did not author my poem), she was asked by a certain agency for permission to publish the poem. My friend thoughtfully related the info to me, and so now I feel the need to repost the poem on my own blog ... since I am, in fact, the author. I didn't know if anyone would like it, which is why I haven't written it online before. I figured that if least 2 people would like it, then maybe more would, too.

So, here it is ... raw and honest, because that's just the way I roll.

My Child Has Autism …

My child has autism … and I, as his mother, have never felt so isolated in my life.

My son has severe speech delays. This is why he doesn't talk to you.
Why don't you speak to him?

My son perceives the world in a unique manner. This is why he plays with toys in an abnormal way.
Why don't you play with him?

My son has difficulty understanding social cues. This is why he avoids eye contact.

Why do you stare at him like he's an animal in a zoo?

… Or even worse, ignore him, as if he's not a human being.

Being his mother does not make me a saint, though sometimes I feel like a martyr.
His condition does not mean that God entrusted me with a special blessing. Autism means he was born with a formidable glitch in his hardware … a glitch I wish daily that I could fix.

The blessing I receive is when people invite us to events – even when we're unable to attend and they know this ahead of time.

I feel blessed when people ask how my son is doing – even when I have no good news to relate and this is evident by my countenance and bearing.

I may not be able to get together with you, whether because I feel beaten down by this neurological demon on that plagues my dear child or simply because of time constraints … but please don't stop reaching out to me! Sometimes just knowing you're there is exactly the lifeline I need to get me through the day.

I may not always participate in idle chatter, whether because I'm dwelling on my child's very real and significant challenges or simply because I'm tired … but please don't stop talking to me! Sometimes I need to be reminded that a world exists outside of autism.

My child has autism … and I, as his mother, have never felt so isolated in my life.

And I need you.

2006-10-26T09:55:00.000-07:00

Pass the Pickles, Please

Well, there's nothing like a pregnancy to keep one from keeping up with blog writing. If I'm not sprawled in front of the toilet, I'm supine on the couch ... wondering how I got myself into this mess. At 38 years *young* I'm pregnant for the third and LAST time. I guess my husband and I are the types who crave chaos.

The thing is, this pregnancy wasn't even planned. In the past, I never could understand when someone said that they got pregnant "by accident." I mean, any adult knows how pregnancy occurs. What the heck is "by accident"?! Well, now I know. "By accident" means that you've been having too infrequent intimacy such that when the opportunity presents itself you just go for it, you drank too much, or simply decided to throw caution to the wind -- in our case, it meant all three! And therein lies the secret to "by accident."

Oh, we thought we might want to have another little one. In fact, we thought next year would be a fine time to start trying. Unfortunately, we forgot that my husband is an expert marksman -- a hole in one with our first pregnancy, requiring only a few tries for our second pregnancy, and now a hole in one for our third. Heck, he could give Tiger Woods a run for his money! His boys can swim!

Yet Life is a blessing and we know that we truly have been blessed. At least 3 times now.

2006-09-13T07:11:00.001-07:00

Foggy Thoughts on a Rainy Day

Do you ever feel like a salmon trying to swim upstream, but falling behind? That's how I've been feeling lately. There's just so much going on and I feel like it all rests on my shoulders. First and foremost is my son's education, of course. Trying to get him set up with services and whatnot ... only to find out that the school hasn't been honoring his current IEP (individualized education plan -- an epithet cloaking the reality of schools doing as little as possible to achieve what is minimally acceptable) and is providing less speech therapy than they should be. That's a battle I have to fight today. The private-pay speech therapy clinic was too far, so now I have to find another. We're awaiting the start of his behavioral therapy. We're awaiting the assignment of a new caseworker be/c the old one was rude, uncaring, and didn't do her job. The house desperately needs painting in almost all the rooms, the yard needs a major amount of weeding, we have boxes of books laying around the downstairs that need to be stored somewhere permanently, and we still don't have a toilet paper holder in our master bathroom. I feel like I've been losing headway with our neighbors be/c I have so much to do, so many cares and worries, and so little time to deal with anything that I probably haven't been as friendly and outgoing as they'd hoped. And then, of course, is the mammoth amount of chores that go into keeping a household running. *sigh* I told my husband that if he ever wants to get a second wife, I'd be happy to share my duties with her!!! He, unfortunately, has declined the offer.

I sometimes look around and can't believe that this is my life -- the once so-optimistic and energetic young woman is flagging and weary. I have grey hair, which I'm working very hard to keep dyed blonde and aches in many joints. Is this maturity or overwork?

I feel like I've lost touch with so many people. Such is the specter of autism, I guess. It envelops the whole family in a cloud of lapsed phone calls and scattered energies. Am I struggling with depresson? Most certainly I am. Who wouldn't, given the same circumstances? This whole experience would be difficult enough if I were living in a familiar area, surrounded by family and long-time friends. Living in a new state, in a new house, with new people around, and no stabilizing comfort of those who truly understand makes my life even more challenging.

I miss driving around with friends, listening to Billy Joel, and eating French Fries.

2006-08-08T11:10:00.000-07:00

I'm a Cape Cod curtain in a chorus of sheers

It is by the grace of God that we don't recognize life-defining moments as they are occurring. As we get older, we're better equipped to understand that when these moments happen, it is simply to reaffirm one's lot in life. I suppose there truly are people whose lives are defined by the times they were dubbed "Prom Queen," "Most Likely to Succeed," or even "Concert Master." Unfortunately, I was not so lucky. My life defining moment came at the ripe old age of 8 years old. I was a Brownie in the local league of Girl Scouts. For some reason I could not comprehend at the time, I never fit in with that organization. While other girls pursued and achieved their badges with a vengeance, I was content to do the minimum in order to acquire my "sewing" and "cooking" badges. Everyone else seemed to make friends immediately, whereas I struggled to overcome the awkwardness of approaching new people. Part of the reason for this may have been my early dive into puberty, which caused me to sky rocket upwards approximately 5 inches over my peers. No matter where I went (and continue to go), I always feel like the banana in a bowlful of apples -- standing out for all to see. It was this very trait that helped to shape the incident that thereafter would define my life.

Being a forgetful young girl, I'd forgotten to bring home the pattern for the Hula outfit that all we Brownies would be wearing at our Girl Scout pageant. We had learned a dance and I could recall the Scout leaders discussing how the outfit should flow like a grass skirt -- this was about as much information as I could give my mother, who was charged with the duty of creating such a costume out of a set of curtains (that was the other part I remembered ... the outfit should be made of curtains). I grew up in a house with tailored curtains: 2 tiered with pretty ruffles all around. Naturally, my mother made MY outfit out of those. I no longer remember the color, nor do I remember how she actually designed a Hula outfit from Cape Cod curtains, but somehow she did. The night of the Girl Scout pageant arrived and I proudly strolled backstage with the rest of my troop. Bottom jaws could be heard actually smashing to the floor when they saw the creation this tall, fish-belly-white girl had draped over her. While all the others wore glorious outfits made of sheer, flowing fabrics, my outfit had tapers and ruffles and tiebacks. Though I knew the dance better than anyone, they placed me in the back row. To no avail. Being taller than anyone else, by far, I stood out like the proverbial sore thumb. I can even remember waving to my parents (trying in vain to hide in the far back corner), thereby attracting even more attention. Were the chuckles I heard in the audience caused by my outlandish attire or by delight in the dance? I'll never know.

Such incidents occur even today, 30 years later. These days, however, I realize and accept the foibles of my life, cherishing them for providing me with the unique situations in which I often find myself. A pattern was developed a long time ago ... beginning when I crawled across the front of the classroom in 2nd grade because I didn't want to be included with those standing to be counted for buying their lunch (and heard the teacher whisper to her helper, "What on Earth is she doing?!"), continuing on through a few weeks ago when I proudly (and falsely) presented a "homemade" apple pie to my in-laws only to discover after cutting it in front of everyone that it was actually cherry. These are the incidents that keep us humble. I must be one of the most humble people on this planet.

2006-07-26T10:01:00.000-07:00

We should all be teenagers.

I question the pomposity of anyone thinking that anyone would be interested in reading anything that anyone thinks about, whereas all teenagers think that everyone wants to read everything they think about. I believe that is the reason I'm having difficulty with this blog. Heck, I am so used to subjugating my own needs that I barely care what my own thoughts are! White Christian women are, perhaps, the most repressed people in our society. The juiciest, most lush piece of steer meat on the serving dish? Oh, automatically it goes to someone else. The last piece of Trident in the pack? The ones for whom we do laundry? The reason we get up everyday? In my case I assure you, it's not so I can look at my sunshiney face in the mirror and seek out what exotic new adventure life in suburbia has in store for me.

My hair is now lighter than it was when I was growing up (as opposed to the never ending fight to discontinue 'growing out' which happens beyond the age of 35 or so). The reason? I got tired of counting how many new grey hairs sprouted overnight. I questioned my dear husband last night whether or not he thinks other mothers are as I -- goofy, teasing, giggling or outright guffawing with my kids -- or are they more stoic and self-possessed. He assured me that other mothers are probably as silly as I. I'm not convinced that he's right. Driving past cars or people watching in stores, I see frowns and scowls, not smiles and laughter. If the world laughed more, I think there'd be less drug usage and fewer bad-parent accusations. It's a shame there are no dye-jobs to shield peoples' dour personas.

I thought I'd never dye my hair. I'd be the type to shrug off the effects of aging. And now? I'm glad it's my hair that's more worrisome than my outlook. Though the hair defies my youthful leanings, the personality remains intact. That would've made the teenage Crystal quite proud.

2006-07-26T08:08:00.000-07:00

Oh, you STUD!

People with piercings intimidate me. From preteens with little gold hearts, to frat boys with one dangling cross, to ultra-chic chicks with drizzles of chains and hoops, to infant girls with diamond studs. It's as if they all successfully were initiated into a group where I was never welcome and had no place to seek entry to begin with. Sure, I got my ears pierced on one wild afternoon with my buddies at the mall, but it didn't last. Seems the young woman who punched throbbing holes into my tender lobes misfired her gun ... I had diagonal entries through my ears that ached and bled anytime I attempted to wear anything through them. I now find myself an outsider to the earring-wearin' crowd, gaping longfully at the jewelry counters sporting cute matched sets, dreaming of how my long neck and shoulder-length hair would be accented just right with something unique and sparkly.

It was not meant to be.

Recently, I had the luxury of checking out a nearby Day Spa. The dim lights, the New Age music featuring a waterfall and tinkling bells, the slightly heady aroma of patchouli ... allured me in a way nothing has since before my children were born. I asked for a flier of their prices, and over strolls a buxom lovely replete with low-cut blouse and numerous necklaces and bracelets ("the modern Madonna-wanna-be?" I ask myself). She handed me their flier, then asked me to pause while she busied herself writing something. I hesitated, bathing in the undisturbed peace of a carefree outing sans infant. Then the young lady handed me "her card" promising 10% off my first massage, provided by her own skilled hands. As I smiled and thanked her, she smiled back, eyes twinkling and mouth agape -- which is when I noticed the tongue stud. Visions of a tongue-studded seductress man-handling the bare landscape of my ne'er-before massaged skin, I almost tripped over myself heading out the door! I'll never return there again.

2006-07-15T15:41:00.000-07:00

How do we women do it?

Was awake by 6am today, though my husband got up with the kids and I remained in bed. After dragging my sleepy carcass from the cocoon of warm sheets, I found three males, all in their pajamas, laying in various poses in the living room. The youngest jumped up to greet me. I managed to sip a few drops of coffee before making everyone's breakfast. I cleaned the table, then changed 2 diapers. My husband took a shower while I entertained the boys. My day had only just begun.

Cooking, cleaning, shopping, painting, laundry, and somehow trying to keep everyone happy, healthy, and laughing are all in my job description. My husband is laying on the couch, fatigued due to his long day, yet I keep going. How do we women do it?

2006-07-14T12:09:00.000-07:00

The day begins with the usual aches that come from 38 yrs of living.

A stiff back, mildly painful knees, and a fatigue that simply won't disperse with a night's rest. *sigh* What will another 38 yrs bring?

My husband lies beside me, his breath deep and regular. I wonder what he dreams, this man who couldn't describe a single creative moment in his life at a recent job interview, yet who routinely surprises me with thoughtful acts and passionate opinions. I wonder about my sons: a 3 yr old with mild autism and a 1 yr old with an incredibly generous and jovial personality. I wonder about the girl I was ... the girl who thought she'd grow up to find herself living an incredibly dramatic lifestyle as a poet in France; the young lady who dreamed of travelling for most of her life; the woman who believed that good things happen to good people.

2006-06-28T13:58:00.000-07:00

Sometimes you only find out who you are when you completely lose yourself in a pile of dirty laundry.

Well, no that's not exactly true, but I find myself with about 3 loads needing to be done, a child scampering about my chair, and the overwhelming desire to write a blog. I always considered myself a writer (or at least my friends from high school said I was one), but never submitted any works for publishing. Thanks to blogspot, I don't need a publisher, and I'm too old to care too much about what anyone else thinks about what I've written.

So here we are.