Monday, August 30, 2010

Autism In Film

Everyone is abuzz about Temple Grandin's appearance on the Emmy's last night.  For those reading this blog who have been living in a cave, Claire Danes starred as our most notable, contemporary autistic person, Temple, in the HBO film 'Temple Grandin' which was nominated for 15 emmy awards, and took home seven!   I have to admit that I have not yet watched her speech, but plan to as soon as I'm done here.
Okay, I lied...I had to go view some of the acceptance videos myself before I could proceed.
The last bit I saw shows Temple (in regard to making her story into a film) saying to the executive producer and founder of what is now Autism Speaks, 'I knew that a Mom would do it right.'  Damn.  That just made me a little teary.
It's fantastic that a film about an autistic person has garnered so much attention and award.  Yes, we all have heard about autism and know someone(s) afflicted with it, but in reality there is still not enough being done to understand what the hell is responsible for the rise in cases.  And don't get me started on all the people (my parents included) that like to immediately follow my previous sentiment with one about how we have better diagnosticians that are labeling people autistic more readily than they were in the past.  That's just not the whole picture.  That's only a teensy tiny sliver of it.

But that's not what I want to talk about here.  I want to talk about the four autism-related films I have had the pleasure of watching this past year.  Whether you have been touched by autism or not, I'm betting you won't leave any of these with a dry eye.
One is, of course,Temple Grandin's story, and the other three are documentaries.

I've mentioned before about my experience meeting Rowan and his family in 2009.  They are the subjects of the book and film 'Horse Boy,' about a Father's quest to help his severely autistic son through the help of horses and Mongolian healers.  Rowan and his parents live in Elgin, Texas, a small town outside of Austin near where we used to live.  They run the Horse Boy Foundation, which provides therapeutic horseback riding to children with developmental disabilities as well as to neurotypical kids.  As amazing as the book was to read first, watching the film months afterward was even more rewarding.  To have sat down and spoken with Rowan and his Mother personally, and to have heard her tell me that-as crazy as it sounded-these healers really and truly were the only thing that had made a lasting difference to their son...well, that in itself was also a magical experience.  It's hard to not feel hope and a bit of 'would that work for my child' when you speak directly and frankly to someone who has had such a mystical experience.

Next is 'Autism:  The Musical.' This is another great film that was presented by HBO.  (Go, HBO!)  This one's been available for a few years, but I was just finally at a place in my own journey where I felt I could watch it.  Naturally, I sobbed through the whole thing.  But it was totally worth it.  It's a beautiful, uplifting story about one Mom's desire to create something theatrically beautiful with a group of kids,(including her own severely affected son), all on the spectrum and functioning at various levels.  It's brilliant and I found it oddly comforting to see a couple of other kids whose autistic traits were very similar to M's.

Finally, there is another HBO documentary, 'A Mother's Courage:  Talking Back to Autism,' that was definitely the toughest of the four for me to watch, but by far the most rewarding.
Wow.  I'm not going to lie; if you have a severely affected, non-verbal child, this one's going to be difficult for you.  But in the end, it offers so much hope and insight.  It is truly a special piece.
Toward the end of the film, we learn that the beautiful, non-verbal child at the heart of the documentary has desires to play the piano and compose music.  I'm not going to go into any further detail than that, but let me  just say that when this  moment occurred, I felt my stomach go into knots and my heart explode as I wondered if somewhere deep inside M he wanted to tell me that he, too, had passions and desires to be someone beyond what his autistic brain and body currently allow.  I actually don't think I can type any further about it without the emotions taking over is that powerful to me still.

I realize that not everyone wants to go to 'that place' by watching films that stab you with emotion, as these surely can.  Even the other half has refused to watch a single one of these despite my pleading with him to do so.  But perhaps if you're feeling like you don't see other kids who do the things yours does, or you want to learn more about what other parents of autistic children have found helpful in their journeys...or you need to have that cathartic letdown of a good cry, then rent one of these.  Just make sure you've got a box of kleenex and a carton of Ben & Jerry's next to you.  Trust're going to need it!

Thursday, August 26, 2010

Spare Some Good Energy?

We had an ironic thing happen last weekend...we found a house.  And we are in love with it.
It is in a better school district, 6 miles from the other half's work as opposed to 40.  It has a HUGE backyard that is easily accessible and fully enclosed for M's safety. We have a yard that is an open space preserve currently, and while lovely, it is not practical for two young boys who could easily wander if not watched like hawks.  It is a ONE STORY...I can't yell that loud enough since we have been living in the house of stairs for the past 2.5 years.  Our current home is a 3.5 story with a crapload of stairs.  I blame the increasing size of my rear on these know, since I'm building up my glutes by constantly walking up and down them :)
B has chipped his tooth on these steps.  He has had to have stitches on his chin because of these steps.  I have severely twisted my ankle twice on these steps.  We constantly have to provide physical prompting to M to go up and down, up and down these steps.  I freaking hate stairs!

Anyhow, this house that we happened upon truly by accident, is represented by a realtor who happens to have a couple that he is representing who are looking for a home in our little our price range.  He will be here within the hour to preview it for his clients.

We're not running out and making any offers on this other house yet by any means.  No, no...we've been through the selling game way too many times to get our hopes up that high.  And yet, it is hard to not fantasize a tiny bit about how nice it would be if this all worked out for us.  Oh, how happy I would be to not have to go through the process of listing and showing another home.  We've had mixed luck with the four houses we have sold before this, so I truly believe we're due one of those amazingly easy home sales.  (fingers and toes crossed)

So think good thoughts for us on this one, won't you?  We could use them!

Tuesday, August 24, 2010

Verbal Vomit

Sorry about yesterday's verbal spewage.  We finally have the beautiful summer-like weather I have so desperately craved, but to the wrong extreme for our coastal town with its non-air conditioned homes.

So that combined with the heinous amounts of pee that have been coming out of my once potty trained M, and  my need for a little 'me' time, had me buzzing like a hummingbird amped up on speed.  I was well out of sorts for two whole days and just could not calm myself down enough to breathe and take pause for one moment.

It's still hot as hell in my house today, but I don't feel out of control over it, which is fortunate.

M begins school tomorrow, and while I am looking forward to it in many ways, I'm also concerned for his happiness.  He will have the same ambivalent teacher as the prior two years, and I don't know how happy he's going to be with me when he discovers that same crowded classroom tomorrow.  Things just don't seem 'right' with M again, though in a different way then I have noticed in the past.  For starters, he's having bowel movements only once every 2-4 days.  This child was regular as could be, and I'm hoping that getting back to the typical school routine will help.  But on top of this he is doing his head shake again.  This is something we haven't seen since he was a baby.  On rare occasions, I truly believe he shook his head in an appropriate gesturing of 'no.'  But on most occasions, it is as though something is awry in his body; like an electrical buzzing is firing through him making his head shake side to side in an uncontrolled way.  The sounds and look of panic on his face that occur when this is happening are horrible for a mother to watch.  This happens with no known impetus as well as when he doesn't want to do something that is asked of him.  As I explained to his ABA therapist, it is a total freak out.  No better way to explain it.  He just doesn't seem to have control and I can't tell it if it is something organic or behaviorally derived.  It's tough knowing whether or not to seek medical advice or examination when you have a non-verbal child.  You don't want to run to a doctor for every single thing when they likely won't know any better than you.  But the worry nags at you and won't let go...

B starts back at nursery school in two weeks.  He is definitely missing his buddies and that space that is all his own.  He and I have butted heads way more than normal this past month that he has been out of school, making me miss my little man's mostly-sweet demeanor and helpful attitude.  It's definitely still there in glimpses; wedged tightly between large bouts of non-stop talking and a disrespectful attitude.  My friends who have children six months older than B keep telling me that this is a very three and a half thing.  I'm going to hold onto that until he turns four and hope that they are right!

So that is the latest in Mama Deb land.  Off I go to drink coffee in the heat since my need for caffeine clearly outweighs my need for cooling off.  Hope those of you with little ones had successful starts to the school year!

Monday, August 23, 2010

This Is How I'm Feeling Right Now...

...Mom, Mommy!  Look at me, Mom!  Look how big I'm getting, Mom!  I'm a turtle, Mom!  Don't call me B, call me Woody!  I'm going to shoot my penis at you!  I don't need to go potty!  Mom, Mom, Mom, are you listening to me, Mom?  NO...I will not stop playing ipad.  NO...I will not take a shower.  NO...I do not want to go to swim school.  Mom, Mom, Mom!!  I need something to eat, Mom!  I don't want a sandwich, I want a cookie!  I want grapes.  We don't have grapes?  But I want grapes!  Mom, Mom, MOM!!!

And then--oh my gosh--when will that rescue remedy lozenge take effect?  Is it 5:00 yet?  How many days has it been since they were in school and the house was a tiny bit quiet?  Has it really been six weeks since I last combed the beach for sea glass?  Why is my heart always pounding and my stomach queasy?  Why do I have to call the insurance company AGAIN?  Why won't this flipping real estate market turn around so we can get out of this stupid house and move to a more functional one in a better school district?  Why do I feel like I am buzzing around all day doing stuff, and yet I have nothing to show for it in the end?  Why is there so much laundry?  And why do I secretly love that laundry is the one thing I actually have some control over?  Why does M have to have the same awful teacher for four years?  Why won't my dogs stop barking at our neighbors?  Why won't my neighbors stop smoking so many cigarettes and blowing it in my open windows?  Why can't I grow basil here?  Why are my lips in a constant state of chapped-ness?  Why did I just inhale a gnat as I was typing? (true story!)  Why are September and October such ridiculously busy months?  WHY CAN'T LIFE SLOW THE FUCK DOWN AND GET A LITTLE BIT EASIER?

Oh, you don't know either??

Well, that makes me feel a bit better :)

Sunday, August 8, 2010

Gone Fishin' - A Guest Post

I have followed the following blog for a couple of years now and find Bennie's way with words extraordinary.  Well, that and he knows about the great island of Kiawah in South Carolina!  Those of you who know me personally know that I spent much of my childhood vacationing there, and my parents even retired there for a bit.  It's a special place!
The following is Bennie's recent post on Hopeful Parents.  I thought it was so raw and real--and true of the lives of so many of us parents with kids who have special needs--that I asked for his permission to repost it here.
I, too, have had great difficulty finding the spirit to write lately and I know that much of that is from the ebb and flow of my mood.
Give Bennie's site a gander when you're done reading.  And check out he and Ben's artwork while you're at it!

It’s been awhile since I last wrote here at Hopeful Parents.  My absence hasn’t been intentional – it’s just been one of those times where life just happens…or maybe hasn’t been happening enough to blog about it…or perhaps more precisely,feeling like blogging about it. Okay let me be just a little more honest with you. I’ve been depressed.
Depression is an illness I am very familiar with. In fact both my wife and I are so up to date with the latest new-fangled anti-depressants and anti-anxiety medications that we are surprised we are not called upon by pharmaceutical companies to provide potential patients of possible side effects. You know those advertisements – the ones where Wonder Drug returns you to “normal” life except for the insomnia, hot flashes, diarrhea, nausea, constipation, shortness of breath, hemorrhoids, uncontrollable flatulence, drooling, headaches, affectations for reptiles, dry lips, body odor, hair loss, joint pain, or an odd desire to set your neighbor’s kid on fire.  Like so many of you, most likely all of you who visit Hopeful Parents, the realization that life will never be “normal” again sometimes weighs me down like a cement life-jacket as I float along the Sea of Life.
Don’t get me wrong, just like all of those drugs that keep my son so much healthier these days I am genuinely thankful that some doctor, scientist, or researcher discovered emotional pain relievers. It’s just that depression is another one of those consequences of exceptional living that I…we…don’t deserve. It wasn’t something we either intentionally earned or even wanted. It came with the “whole package.”
And here’s the worst part: of all the parents out there we are the ones expected to hold our shit together the most. God forbid any of us give up, walk away, toss in the towel, deciding there’s got to be somebody else or a social service agency better qualified/capable/deserving/undeserving/needing/willing/ loving/etc. to care for my kid. Oh that person becomes the ultimate pariah of society…the worst of the worst! So we continue letting our souls and spirits descend into a special compartment of Davey Jones’ Locker filled with lead waders and concrete flippers.
But there is the upside: we know how valuable or children are! We do know how much joy and love they bring into our lives. We know how often they bridge the gaps between races, religions, cultures and everything else that divides the rest of us. We sometimes even know of special gifts, incredible potential or talents, accomplishments never expected; diamonds within the coal. This is why we continue “the journey.”
I’ve been casting an un-baited hook for awhile now. The illness of depression makes you selfish which just adds more slag to that weight pulling you down. Recently I’ve run into a few folks that enjoy dropping a cane pole in the water now and then.  They too have occasionally been using the wrong lures to reel in that “keeper” we all want to brag about.  The one we take a picture of...that ends up as a happy news item...something we are darn well proud of. That is the beauty of having fishing buddies – in the end we are proud of how we contributed to that special catch – at least that has been my experience with those I love to cast with. That would be the little fishing community of Hopeful Parents.
Bennie and his much more talented son, Ben, blog at A Work of Art: Raising Our Exceptional Son.

Friday, August 6, 2010


I wrote the following for Hopeful Parents today.  Be sure to check out their site including their newest contributor, Valerie, from Jump on the Rollercoaster!

I have the pleasure of writing on the 6th of each month for Hopeful Parents, so I will also have the pleasure of writing a post to celebrate each of my son's birthdays.  Today M is seven, and like the last, I find this addition of a year to be bittersweet.  I am proud of my little man and what he IS able to do every day.  He has such a genuinely beautiful soul that shines regardless of his lack of words.  But it is hard to pass the years-the ones you had expectations of before he became him-and not feel a tiny bit crushed at what isn't.
This year, I have found it particularly difficult to hear about all of the other children M's age who are joining team sports.  Sports were and still are a big part of the other half's and my life.  I began playing soccer at age six as did my husband.  I listen to my friends talking about juggling practice schedules, first goals scored, paying for equipment, and cheering in the stands with other parents.  It makes me feel the slight twinge of the green-eyed monster, I must admit.  It makes me feel like we weren't invited to the party, and that everyone forgot and still wants to tell us how great it was afterward.
And the thing is, I don't want my friends to stop telling me about it.  I truly do wish to celebrate each of their children's achievements.  Oddly, I suspect that when friends tell me what their children are participating in, they don't even think about M as being the same age and missing out on those opportunities.  In fact, sometimes it is hard for me to remember that M is the same age as their kids.  Or perhaps this is just me projecting my sadness that age hasn't quite caught up to M; as though he is this Benjamin Button sort of being, aging in reverse.  
As time has progressed, my boy has lost words he once had.  He has lost the ability to be potty trained during the daytime.  He has lost interest in his peers.  And yet the calendar shows me that he is seven. Seven years old.
We participated in Special Olympics baseball this past Spring, but the realization that this was more so we'd have that photo of him in a baseball hat and jersey rather than for his true enjoyment came only a few practices in.  My boy would rather watch than play, and so this is how we participated instead.  And truly, I was totally okay with that.
 I'm becoming okay with a lot of things I didn't ever think I would just be 'okay' with.  It is a long journey to full acceptance, though, and one with which I will always wrestle.  I think the line between acceptance and giving up a hope for him to be able to function at a higher level is a fine one.  
Regardless, I will continue to build up each birthday with as much gusto and hype as I can muster.  I will bake him his cake and put the candle he is not able to blow out himself on top.  I will shower him with presents I am not entirely sure he will enjoy.  And we will sing, and we will smile with true joy.  Because we love him...No matter what.