Cracking Yourself Up (For Reasons Most People Wouldn't Understand)

I've had a bit of trouble sleeping this week.  Not sure exactly why, but being one who absolutely needs my beauty rest, this isn't a fun thing for me to experience.

This morning when I would have loved to have slept in, I awoke before 7 am and realized that, finally, after nearly two months since the last time I'd gone, I would be able to use this opportunity to go sea glass hunting!

The timing of the low tide was in my favor, the air was fairly still, and the cafe down the street was open for me to get my morning cup o' joe.

I got to my favorite 'secret' beach, greeted the herons and harbor seals, and made my way across the sand.

It's a good thing this beach is totally desolate on mornings like this.  I'm sure people would wonder who the hell I was talking to!  But it's my time to talk to the animals, sing out loud, and ponder life.

I cracked myself up at one point when I thought to myself, 'I hope that I find something really rare today.'

And without a hitch, I answered my own thought with a chuckle because, after all, I'd found a little peace and quiet BY MYSELF...and isn't that the rarest thing of all?

An Odd Sort Of Contentment

Do we parents of kids with special needs ever get to the place where everything is in a state of balance?  For me, the answer is most definitely 'not yet.'  But I have high hopes of getting there...maybe for a day at least.

However, I discovered a feeling yesterday that sort of caught me off guard.  As you may have read previously, after a very long battle with our school district they hired private 1:1 aides from an outside agency to work solely with M at school.  These aides are legitimately ABA trained unlike the paraprofessionals who hadn't the slightest idea what they were doing, and to my son's detriment, I fully believe.  These aides began working with him last February.  Then, in May I was able to finally begin an intensive in-home ABA program fully funded by our insurance. (minus a small $15/day copay)  Unfortunately, we have one agency providing the ABA at school and another agency providing the home services; but these people have all come to surprise me in a very positive way...they actually want to work with one another to make sure that all are on the same page in teaching my son important life and educational skills.

A meeting was called by the school's overseeing behavioral analyst, and we all came together yesterday to find that both groups were doing very similar tasks, and where one was doing something different, the other offered to take the time to create a detailed list of their steps to achieve a goal.  I was floored.  It may sound like something one shouldn't get floored by, but having heard and seen how school districts hold what they provide your child very privately, I never in a million years thought they would be flexible enough to listen to someone else's ideas and theories.

We've agreed to send home a detailed daily journal so that school and home therapists continue to have dialog between one another.  We've agreed for the case supervisors to meet in person again in the future.

Yes, these outside agencies are being paid a large price for their services...but I really believe that they give a shit about my child and about his future.  It's thrown me for a loop, in all honesty.  But even more than that, was the feeling I left with yesterday of worrying that if we do get to move to a new district I may have to start this fight all over again.  Dare I say that I am *almost* content with my son's current placement?

I still feel the school's campus and it's highly mixed needs, special day classroom are not the most ideal for M, but given what we have to work with and the very unlikely chance we would be successful in getting the district to pay for the crazy expensive private autism schools I covet, I think we're doing okay for ourselves at the moment.

Now don't go thinking I've given up on those coveted schools.  I most certainly have not!  I think that if M could actually attend one of them our lives would be even more fulfilled than they are currently and I think M would be able to gain back even more of what he has lost.  But for the moment, I will gladly take this feeling of partial contentment...of not needing to fight and worry for now...and I will enjoy it.

Peanut Butter On Your Penis & Various Other Things I Never Thought I'd Say

I posted the following over at Hopeful Parents today.  Be sure to check out all the amazing parent writers over there!

This parenting gig is full of surprises.  Add the even crazier twist of parenting a child with special needs and, well, it's no wonder so many of us enjoy a glass of wine (or three) each night.

M is seven and has had a big regression in the area of toileting.  I feel the need to knock on some wood as I type how fortunate I feel that this regression is in the area of numero uno and not numero dos.

Regardless, it does pretty much suck to have to clean up pee multiple times each day when trying to keep him in big boy underpants and then having to remember to bring diapers on outings...for your seven year old.  I've had to start buying diapers online through incontinence web sites.  I've found myself spending hours searching to see which site had the lowest price or a free shipping coupon.  The first time I searched for diapers online I clicked on a benign-looking web site with the word 'diaper' in it and was shocked (and fairly amused) to read that it was a web site for infantilists who enjoyed wearing diapers as adults.  Who the hell in their right mind would CHOOSE to wear a diaper as an adult?  Clearly these are not adults who parent children with special needs!  I will say, however, that some of their prices were competitive, and the brands were the same ones you'd find at other incontinence stores...but I just could not bring myself to make a purchase there!  

Fast forward to last week when I decided to purchase some diapers fromOverstock.com.  Yes, believe it or not, Overstock even carries diapers!  (and, no, I do not work there)  Since their shipping price was right, I decided it was worth it to try out the smallest adult-sized diaper that they carried--a size small--since the waist size fell in the range of my boy's distended belly.  

Unfortunately, I learned that though they do fit around his waist, the other--ahem--areas of the diaper do not fit very well.  I'm banking on the hope that M will not need diapers in 10 years (please, please!) so I'm hellbent on using these suckers up even though they are a bit, well, large.  I put one on him for our two-hour walk yesterday in hopes that since he'd be sitting in our jogging stroller the diaper would do the job.  

Not so much.

We had to strip down our poor boy once we got back to our car to drive home, and with no clean clothes with us, (because you forget to bring the change of clothes when your child has suddenly decided to not use the potty at the age of SEVEN!), a very naked M had to be strapped into his carseat for the drive home.  The other half was a bit pale as he delicately tried to maneuver the buckle that clips into the car seat near the poor boy's private parts.  One crisis averted, we finally made it home.  

We were planning to go into the hot tub after a quick snack, so the other half decided it would be okay to feed M in the buff.  It was a warm day after all.

Unfortunately, our little man is not what you'd call a neat eater.  And the peanut butter that was on his apples ended up being put on his...nevermind.  You know where this is going, right?

When he got up from the table and I noticed what he'd done, I was a tiny bit alarmed at how easy the words, 'M, come over here so I can clean the peanut butter off your penis' rolled off my tongue.  As though it was completely a normal occurrence in our lives.  The other half and I cracked up over this and remarked how there are so many bizarre things that come out of our mouths that we never ever would have thought back when we were much cooler (and thinner) 20-somethings, blissfully unaware of the mayhem that lay ahead of us.

Other bizarre things I have caught myself saying to my seven-year-old with more regularity than I probably should admit:

-Please quit chewing on the dvds.

-Don't put sand (or substitute rocks, dirt, seashells, and various other outdoor items) in your mouth.

-Vacuum cords are not chewies.

-Stop drinking the hot tub water.

-How did you get spaghetti sauce inside your ear?

There's really no brilliant way to end this post other than to ask that you all make me feel a bit better about this craziness and share with me and other Hopeful Parents the things you can't believe have come out of your mouth!

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 me...it 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 me...you're going to need it!

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 stairs...you 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 town...in 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!

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!

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 :)