The Twilight Zone

Imagine a world where your school district gives you *nearly* everything you have asked of them.  A world where when you suggest that your child might benefit from being taught to use an augmentative communication device, they readily agree to pay for you (and him) to go to a center to try out various types.

Imagine a world where one device is chosen by the team (a Nintendo DS) despite the Mom's concern that its screen is too small for her son to use. (Though the Mom doesn't want to make too big a fuss about it since, hey, the district is actually finally moving in the right direction here!)

Imagine that a couple months' after that decision is made the Mom very briefly mentions that over the summer her son's interest in the family's ipad has grown significantly and that she is still a bit concerned that the Nintendo device won't work because of her son's fine motor skill issues.

Now imagine a week later getting an unexpected phone call where you are told, 'No problem, we are happy to purchase your child an ipad AND the prologquo2go software for it AND we plan on teaching the district's speech and language pathologists how to use the program in case it is warranted for other children.'

SHUT UP.

But, yes, folks this very thing has happened for our family and for our M from a district I have struggled with for two years.  I think I am in the twilight zone and something really screwed up is going to happen that will snap me back into reality!  I am so ridiculously excited about having a team to help my little guy learn to use this communication tool, and I hope and pray that it is the thing that helps us to finally get a gauge for what my little guy wants and feels.

Last night as M was laying in bed, I asked him, 'What do you want to be when you grow up? Do you want to be an artist or a musician?  Do you want to be a fireman or a teacher?'  And my boy seemed to get tears in his eyes as he stared intently at me during my questioning.  It is heartbreaking to miss these moments with your child because he is non-verbal.  B proclaims his desire to be a different thing almost daily and I love hearing about it.  Oh, what I would give to know what M dreamed of being!

So while I cannot allow myself to get my hopes up too terribly high that this will be the thing that finally helps our boy to 'talk,' I hope my time in the twilight zone extends a bit longer so that I am able to witness the transformation from a boy who can't communicate with words to a boy who can communicate with the help of an electronic device.

Life Without Plastic

I'm not a huge fan of 'Parents' magazine, but I've been getting them each month from a free subscription that never seems to end.  (anyone else get magazine guilt when they pile up unread?)

A couple of months ago there was a good article about environmental toxins and toxins in our homes.

I've really tried to use less plastic in my life, while also being careful to not let myself get too neurotic about it or hard on myself when I'm out of glass storage containers and have to reach for those few tupperware pieces I still have left.

It's a lifestyle change to stop using so much plastic, and one that isn't going to happen overnight.  At least not for me.

When it comes to my kids, though, I'm really trying to pick up the pace by replacing old, plastic sippy cups with Kleen Kanteens, not buying as many plastic toys (why, Disney, can't you make better quality toys since my kids are total suckers for them?!), and  I don't reheat things with plastic wrap or in plastic containers anymore.

Because of M's fine motor issues, we have found that we need special, lipped plates to help make his mealtime a bit easier for him, and a bit less messy for us.  Previously, I'd only been able to find these sorts of plates in questionable plastic form from the special needs catalogs.  The scratch marks on the bottoms of those plates made me a bit concerned...what is leaching into my children's food as they eat?

'Parents' listed a wonderful site that I finally got around to visiting yesterday, and I'm a new fan!  Life Without Plastic had these fabulous, deep plates...

And these adorable cereal bowls for kids...

I also got a couple of steel mugs for the kids, and a great, airtight container for M's lunchbox. I'm looking forward to getting them and tossing my old stuff in the recycling bin!

They've also got a great blog that I'm looking forward to delving into a bit deeper.  I think that whether you believe toxins are responsible for autism and other diseases or not, we can all agree that our landfills and the animals we share our planet with would be a heck of a lot happier without as many plastics.

This Is A Post About Poop

I just thought I'd warn you, okay?

If you're a parent of a child with autism, you probably chuckled and thought, 'Yeah.  SO?'

We just got back from an appointment with our developmental pediatrician who is also a DAN! doctor.
Our M has had a history of some pretty wicked gut bugs that have required the treatment of some high-powered antibiotics and yeast treatments to kill them.   And then, of course, our daily dosage of probiotic to keep him supplemented in the good stuff.

M has a really distended tummy that looks kind of painful at times and is often shown off to the world because he is constantly lifting his shirt and tickling or rubbing on it.  He's a size 8 in the waist and a 6X in the length, so we have one heck of a time finding comfy pants for him.  I'm pretty sure he's destined for a life of elastic or drawstring waistbands, the poor boy.

Anyhow, we did yet another lovely stool test to see if his previous gut buggies were back in force causing the latest belly pain and distention.  For those of you who have never had the pleasure of trying to get a stool sample from your child, let me offer you a pat on the back and a 'lucky you' because it's one hell of a treat, let me tell you.  The past four times I had to do this, I obtained our 'specimen' by holding the lovely fast food, french fry-like paper tray the lab gives you in between my poor child's legs as he sat on the toilet (you'll never eat fries from In n Out burger with the same gusto, I promise you).  This while simultaneously hoping that he does not squirt out a tiny bit more pee on my wrist or worse, in the sample trapper, thus tainting the french fry tray and rendering it useless for said poo sample.

M was younger and much less stubborn the last times we tried this, so I was able to get what I needed with my arm going only partially numb.  That method was not going to fly this time around, however, so I needed to get creative.  I'd heard of people turning off the toilet water after flushing so that the toilet was empty and then putting some sort of bowl in there to catch the poo.  I don't know about you, but I like my cookware and storage receptacles too much to subject them to that sort of torture. Because surely people don't actually keep them after they've been used to trap poo, right? So ingenious girl that I am, I decided to create a tin foil poo catcher by spreading a piece out beneath where said poo would fall (and away from any potential pee tainting), securing it by putting it between the bowl and the seat.  Since I am no longer employed in the out-of-house work force, I felt pretty good about using my remaining brain cell to come up with such a contraption.  I'll gladly lend the rights of my idea to any of you in need of it :)

I will spare those of you who won't be subjected to this delightful process the details of what happens next with the ice cream tasting spoons supplied in the kit.  Let's just say the other half could never handle this without losing his lunch...trust me.

Fast forward to today's result-learning doctor appointment...I would hereby like to exclaim to the world that M, distended belly and all, has NO weird buggies inhabiting his gut NOR any yeast wreaking havoc.  The only negative blip in the report was that he's lacking in some of the good gut flora; a point that stumped our doctor since M has been supplemented daily with one of the strongest probiotics.

We still can't figure out why the continued loss of words (down to no regularly heard ones at all) and the potty training regression.  Despite that, I'm still pretty freaking happy to not have to wrestle with my 61-pound seven-year-old in order to give him antibiotics and anti-fungals.

Another oddly fulfilling day in the life, I suppose.  I'll take it!

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!