Raising Pinocchio

Tales on raising a child with autism and the kismet of living in semi-rural suburbia.

Thursday, June 06, 2013

It's all in the math

The intervening year ...

Pinnochio's brother was diagnosed with Asperger's (okay, which is a term no longer recognized by the powers that be, but I digress ...).  Pinnochio has been doing well, with some setbacks due to health issues, but otherwise has been ever-so-slowly transforming into a "real boy."  His brother seems to be devolving into a wooden boy, however, and this has taken quite a bit of adjustment and intervention.  Get out the strings!  There's a new puppet in town!


Last year, our local school district was sued by outside entities for mishandling special education students, so they willingly gave us another settlement agreement to progress Pinnochio's furtherance into real boy status without any ado.  We literally have data coming out of our wazoos demonstrating how well Pinnochio has progressed this year.

So for kicks and giggles ...

We recently attended Pinnochio's IEP meeting.  The superintendent had resigned and the special ed director quit because of the law suit.  New players, come to the table! 

 Ahhh ... but are they so new?  From where I sat at the meeting, they looked to be exactly the same.  Same cold glare, same lack of conscience, same missing heart.   Seriously, do school administrators take a course in "How to Manipulate and Intimidate Parents"?  Thankfully, I took the counter-course in "How to Give It Right Back to 'Em," so we were more or less equally matched.  The difference, of course, is that while those same evil administrators are sleeping snugly in their cocoons right now, I am up sipping coffee and trying my best not to wish a plague of autism against their houses.

The next step ...

I left the IEP meeting and contacted our specal education attorney.  Of course, I had to leave a voicemail for her.  I waited 2 days - a lifetime to someone awaiting a NOREP in the mail - and finally broke down and sent the attorney an email.  I have not heard back from her yet, but continue to say my prayers and cross various appendages that she will be available to represent us yet again.

The lie that no one outside of special education understands is believing that the school exists to educate one's children to the best of their potential.  I am here to tell you ... this is absolutely not the case from the perspective of the administrators.  For them, special education students exist for federal funding ... a child sitting quietly behind his desk will be pushed forward through each grade until he has reached graduation age, irregardless of what he has learned.  The more sitting behind a desk the student does, the more federal money in the school coffers.  It is a simple equation, really ... too bad the school is not willing to teach my son math.

Monday, March 07, 2011

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. 

Tuesday, September 21, 2010

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.

Wednesday, September 01, 2010

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. 

Friday, August 27, 2010

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.

Thursday, October 26, 2006

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.

Wednesday, September 13, 2006

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.