Tuesday, October 19, 2010

Fuck You, Universe

I feel like I have just had the wind knocked out of me.  As though someone has told me of a death in my family.  That is the heaviness I feel in every molecule of my body at this moment.

I just received a phone call from our insurance company from a representative that told me that the ABA services we have been receiving in-home since May...the ones I worked my ass off to get for two years...were 'authorized in error and will not be covered past today.'

I am beside myself.  I am sobbing and screaming out loud and have no idea what to do next.  The other half is in a business meeting and will call me afterward, but I don't know how we're going to counter this decision with his company.

M is a different kid since our therapist began working with him.  He is happier and calmer from the engagement she provides him each afternoon.  MY life has been happier and calmer since she started coming here.  Holy shit, you guys, I am FREAKING OUT over here.

Please, please let this be a bad dream.

I know it sounds dramatic, but this is so important to our entire family.

I am absolutely crushed right now.

Sunday, October 17, 2010

Community...I Want One

For those of you readers living around me in my beautiful, coastal town...fear not!  I totally realize that I have a community here--and a damn good one at that.  It's pumpkin festival time here again and even though the traffic sucks, the vibe is delicious and fills me with the warmest of fuzzies.  I love this little town.  I love how excited my children (well, I'm making assumptions for M here) get when they pass by all of the pumpkin patches.  I love the pumpkin weigh-off and the small town parade.  I love my friends.  I have such wonderful friends in my life here; friends who always have my back when I need them, who are always up for a wine playdate with the kiddos, and who listen to me when I just need to talk.  Of the latter, I sometimes wonder why or how they can possibly want to keep calling me or inviting me to things.  Sometimes I annoy myself with my autism talk.  So, thank you, beautiful friends, for continuing to like me.  No matter where the wind takes my family down the road, I sincerely hope you are still a part of my journey!

But back to the part about wanting a community...we move around a lot.  It's totally by choice, too, since the other half and I are apparently each tainted with a wee bit of gypsy blood.  A good friend often jokes that we must be a part of the witness protection program.  I've mentioned it before, but at 30 months now, this is the longest we have lived in one house since either of us started college back in, um, 1992.  That's a lot of packing and unpacking boxes...and a lot of never really getting settled in your space.  I'm tired of not knowing where I am supposed to be.  It's not that I don't still have the desire to experience new places--I absolutely do--but I am getting to a point in life where I realize that I am holding back a bit of myself because I don't know how long I will live here.  Sure, I totally realize that I should just go ahead and volunteer for the festival since I am a member of this community at present, but it's almost like that's a tiny bit more of myself I am afraid to invest because all of the people around me seem so sure of where their place in this world is.  I'm sure that sounds absolutely ridiculous.  It sounds ridiculous to me just typing it.  I guess I am having trouble finding the right words to truly describe how I'm feeling.

Another problem is the other half.  I have made a promise to him that I wouldn't ever bad mouth him on this blog--and I haven't--but I will say that our personality differences in this regard do make finding (and loving) a community a bit more challenging.  Volunteering isn't something that is important to him. (Though he has been the most amazing soccer coach for teams he didn't have a child on in the past)  Finding lifelong friends other than the ones he's had since high school and college is also not particularly important to him.   I need a village, he does not.  I suppose that's the yin and yang of so many relationships, but I find that aspect of our marriage to be the most difficult.  I find myself going to things with only B.  M's disability makes outings like yesterday's parade a bit more challenging.  And the fact that we hung out in an open backyard of a friend's home for six hours...well, that would never have worked if M was there, unfortunately.  Our family is often divided as I am aware so many autism family's are.  But I think that the other half's lack of desire to be a part of this community makes it all that much easier to leave him at home with M while B and I explore and create lasting friendships.

The question of where to live for the long haul haunts me daily.  What if there isn't a place that truly suits our entire family's needs? I have a sense that if we moved back to our hometown where my wonderfully helpful in-laws live that the other half might perk up a bit and want to have friends over for cookouts and family get togethers.  But that would be because it's his friend and family base...his comfort zone we'd be returning to.  As much as I love these people dearly and know that I would forge a wonderful life there, I fear losing a tiny bit more of my own wants.  I love the California lifestyle.  I love how easy going people are here about the way others look.  (I noticed this even more on a recent trip back to Austin where they used to be relaxed in the way the women look, but more and more seem to be losing that sense)  I love the weather here.  I love the ocean and the mountains and the trees.  I love that I live in a small town where I see at least one person I know (and like) every time I go to the store.  And on the other side of the coin, I love watching my children play with their cousins back on the mother ship.  I love that my sister-in-law. K, loves M (and, of course, B) with all the love she has for her own children, and that she would be an amazing support for us were we to move back.  I love that it costs a hell of a lot less to live on the mother ship than it does here.  And I especially love knowing that if the time comes for M to live in some sort of an assisted facility (gulp) that there would be family back there who could visit him.

Sometimes I am right on board with the other half to say 'screw it' to all of those worries and just pick up the family and move abroad.  For example, Switzerland has AMAZING services for children with disabilities as well as the cleanest overall environmental qualities.  And sometimes I think we just need to find a different town here in California that fits the bill a bit better in terms of schooling and commute time for the other half.  But will we be in this same position in 30 months after settling down there?  So many questions that I suppose no one can really answer for me.

I need to do a better job at living in the present, but my head sometimes just won't allow it.

Wednesday, October 13, 2010

Hiatus

A little break will do a Mama good, but damn is it hard to jump back into reality!
I was fortunate enough to finally have an entire week without hands on parenting duties.  I visited my parents back on the mother ship (after having not seen them for nearly a year-crazy) and then the other half flew in and we joined some of his friends and their wives for the Austin City Limits music festival.  I am fairly certain I have officially gotten too old to spend three days drinking ridiculous amounts of alcohol in the hot outdoors of a Texas park filled with 90,000 people each day.  Ouch.  My liver hurts!  I was so, so ready to get back and see my sweet boys.  I missed them so much, and I realized that feeling such an emptiness in my heart without them was exactly what I needed to feel to refresh me and get me ready to live the day to day craziness until the next break!  (which will likely not be for a very, very long time)

Along with the reality of day to day parenting comes the reality of crappy things happening around us all every single day.  Okay, so the rescue of the Chilean miners is a huge bright spot of goodness, but let's face it, it's tough out there.

I got some news from a close friend yesterday that has sent me into a bit of a tailspin.  One of B's best little buddies has just been diagnosed with leukemia.  I can barely type that out without getting a huge lump in my throat.  This little guy isn't even four years old and he has fucking cancer.  Seriously...WHY?

Clearly I am not experiencing the same depth of emotion as my friend is feeling for her son, but I have not thought of much else over the last 26 hours.  I feel a heaviness in my bones and have been walking around in a daze.  This is just too close.  Too, too close.  And I want to be there for my friend in every capacity she needs me to be without stepping on her toes or making her feel like I am doing too much.

Isn't that fine line in so many of life's situations a bitch?

No matter your beliefs, please keep a really freaking amazing little boy in your thoughts or prayers.  Light a candle.  Meditate.  Do a dance.  Just send some healing power to this kiddo.  D is truly one of the strongest and toughest three year olds I have ever met.  This kid's been riding a two wheeler since he was two years old and jumping off of bike ramps probably as long.  He has a gusto like no other and I know it will serve him well in this fight.

Tuesday, September 21, 2010

From The Mouths Of Babes

About a month ago, B and I were in the waiting room of the pediatric therapy center M goes to for private occupational therapy each week.

There was a boy there, a couple of years older than B, waiting with his mother for his appointment.
It was clear that the boy was on the high functioning end of the spectrum.  His social skills were a bit immature and robotic; things that my delightfully non-judgmental B didn't care about at all.

At one point, the boy said to his mother (while looking at me), 'Is that his Mom?'

Before the mother could answer, B did it for her by saying, 'Yes.  That's my Mom.  She cries a lot!'

WTF?!!

Fortunately, the Mom looked at me and said with what I believed to be complete honesty, 'That's okay.  I do too!'

We laughed about the waiting room at a therapy center being a safe zone for such frankness.  Perhaps B, even at the age of three, also sensed that because I have never ever heard him say something like that before that moment! (and I better not ever again!)

Naturally I fixated on this statement for a little while.  Does he really think I cry a lot?  Do I cry a lot?!


Don't we all cry for our children at times, special needs or not?

That afternoon in that waiting room has definitely stuck with me.  I try to keep my emotions a tiny bit more in check in front of B.  But I don't entirely regret the fact that I so often wear my heart on my sleeve.  It's a part of who I am, and hopefully B will always know that it's not because I'm crazy (well, not too crazy, at least) and instead that I just really, really care.

Ahh, insecurities.  Aren't they a bitch?




Friday, September 17, 2010

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.

Tuesday, September 14, 2010

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.

Monday, September 13, 2010

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!

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