Big Montana Sky

We recently returned from our yearly trek with my best friend's family to Flathead Lake in the northwestern part of Montana.  It's a great trip that always ends too soon.  (which is why the trip becomes longer every year)

The menfolk garner great pleasure from building the best fires in the pit each night, after amazing, home cooked, themed dinners, great bottles of wine...and, well, even more wine after that.

Both of our families dream of building homes on the lake one day.  We've each joked about our stash of kitchen appliances and the errant piece of furniture that has, for now, been relegated to a storage area; labeled for years to come: 'Lake House.'

We rent a pontoon boat.  We rent sea doos.  We freeze our asses off on both, and don't really care because it's that much fun to ride on a massive lake even if you're wearing uggs, winter coats, gloves, hats and scarves.

 We take a day trip to Glacier National Park and go for a walk in the freezing rain.  Because it's THAT spectacular anyway.

We yell at our kids to not run on the dock.  (okay, so that part may be more me than anyone else)










We take a whole seven days to get into the groove of traveling with children---a point we kvetch about at night with hopes it takes zero days when the kids are older.

We go to bed too late and wake up too early.

We make friends with the locals and mean it when we tell them we hope to see them next year.

A little brother laments the big brother he wished would play with him the way the two sisters do...and his Mom hopes that their frank discussions help him realize how special their bond is nonetheless.

We shop for things we don't need, and realize we forgot to pack things we did need.

We get to reunite with middle school friends we haven't seen in a decade--who live nowhere near the neighborhood, but because it's Montana, a five hour drive seems like nothing.

We have the good fortune of a couple of grown up-only nights out because a good friend back home has family in the area that is happy to babysit!

And two old friends who've changed leaps and bounds since their high school days, can talk openly about how different their parenting styles are--how different their children are, and yet still know that it is worth it to spend this invaluable time with each other summer after summer.  And every once in awhile, they might just find themselves doubled over in laughter like they used to when their lives were a bit simpler, their stomachs a bit flatter, and their ability to stay up all night a bit more fine tuned.  But make no mistake...they've still go 'it!'

Insight

I have a group of Moms I meet for a quick breakfast, two to three times each week.  We formed our bond through our children, all who have special needs.  Our children vary in their diagnoses, which is actually way more beneficial than I would have been able to predict when we started our breakfasts two years ago.  One friend has an adult daughter, almost 22 years old, who has non-verbal learning disorder.  A is a lovely, outgoing and talkative girl.  Funny since the label she has been given would imply that she didn't speak.  She often (without realizing it) offers me exceptionally poignant insight into the world and minds of people with special needs.  This morning she said something that put a little pang in my heart.

As she was relaying a story of her early years of elementary school, she mentioned a girl who was in her special education class that had autism.  This girl would, as so many people on the spectrum do, flee the classroom-seemingly for no reason-and retreat to the playground swings.  A told me that the teacher was new to teaching children with special needs and could not understand this girl's behavior.  At seven, A was able to tell her that the girl just felt overwhelmed and needed to calm herself.  But that wasn't what struck me so deeply.  She went on to say that she told the teacher that kids like this girl just needed people to be nice to them; to try and encourage them rather than discipline them. Because when you try to discipline her, she gets scared. There...those last three words.  That's the part that stabbed me in the chest for a moment.  You see, I struggle greatly with the line between encouraging M and disciplining or reacting negatively to him .  And I feel like as his sensory troubles increasingly take over his ability to engage with the world around him, the more my likeliness for 'disciplining' him becomes.

Over the past month, M has started going into our food pantry and our refrigerator and freezer.  He does this at least 20 times a day whether I am in the room with him or not; whether I have just scolded him for doing it two minutes earlier or not; whether he has just eaten something...or not.  His favorite targeted items are plastic  tubs (like cream cheese or yogurt), of which he will gnaw on the edges of the lids.  He also really likes to grab the boxes of broth and soups in the pantry and squeeze them or chew on them.  The 'normal' response to this behavior would be to ask a parent 'do you have other appropriate items for him to chew on?'  And the answer to that would be, 'more things than you could possibly imagine!'  I would estimate that over the past three or four years I have probably spent a few thousand dollars on 'chewies,' or replacing clothing or other ill-fated items that met M's mouth.  He will generally find a chewy of choice and stick with it for a few months and then get bored with it and need to find something else.  For those not in the know, many people with oral needs such as this, use therapeutic chew tubes, 'chewlery,' or vibrating z-vibes, etc.  These items are not cheap, especially when they tell you that your child shouldn't be able to chew through the item, but he does!  I can't even tell you how many of those chew tubes we have chewed through at around $6-7 a pop.  And as much as you hate feeling like your child is a dog given items to occupy his chewing desires, the alternative is worse.  I've mentioned it here before, but our book and dvd collections are a nightmare; chewed on cases and toothmark-filled book bindings.  It's hard to not get a little crazy over the fact that your child can't be trusted to have a library card for school because you'll end up paying for each book he checks out. (and you have to hide any book your younger son checks out) It's hard to tell your younger, typical child that you're really sorry that his favorite book just got ruined.  And it's hard to think that you will likely not ever be able to have those 'nice things' you sort of imagined you'd one day be able to have when your children got older.  Shallow, absolutely.  But that's sometimes how I feel.

Back to what A said about discipline making someone afraid, and I use the word 'discipline' simply because A used it when describing what she saw as a child...It's whatever word you want to ascribe to the reaction you have when a child who may or may not have the cognitive ability to understand his actions does something that you believe shouldn't be done.  I struggle greatly with controlling my emotional reactions to things I think aren't right, and in this world of autism, there are a lot of things that aren't right to me that I probably need to let go of and relax on a bit.  I'm totally a libra; a strong sense of right and wrong and a sensitivity to injustice.  But with autism, what I perceive as wrong, my child doesn't. In fact, beyond perceptions, his body simply has needs to fulfill that are completely out of my realm of understanding and must be met in order for him to attempt functioning in my world.  It's an incredibly difficult concept to try and grasp for anyone, even if you're the parent!  But it's getting to that point of accepting what is out of my realm of feeling for myself that has to occur if I am to find some semblance of peace in my new normal.  And because if my own child can't feel safe and unafraid with me then how will he ever feel safe and unafraid with anyone else?

And for the record, M opened the fridge three times and the freezer once during the time it took me type this.  Fridge lock and lever handle cover are on order from Amazon.  Thank goodness for the prime membership..they'll be here in two days.  I'm looking forward to moving on from this habit...

Hopeful Parent-ku

I'm over at Hopeful Parents today with the following entry.  Be sure to click your way over to their site and sit down a spell!

Alright, let's get real here for a minute.  I have admittedly been a wee bit lax on regular blogging, which in turn means a laxness here at Hopeful Parents.  As I've said in my own blog, it's not that I don't have things to say, it's just that I realized that my state of mind recently is such that all my blog posts end up sounding whiny and bitchy.  I'm not a smoke and mirrors, everything-is-just peachy-when-really-it's-not kind of girl--quite the opposite--but it still doesn't feel right to me to look back on my reflections and to only read negativity.  I very briefly tried to hold myself to a weekly entry called 'thankful Sundays.'  My family does not attend church, so reflecting on what I was thankful for on a day traditionally held for church-going, I thought  was good practice.  Yep...didn't last very long.  The gripes took over way too often and made me feel false in my attempts to try and come up with something cheery.  (yes, this is all probably good information for a therapist or the zen teacher I probably need to start seeing)

So with that, I decided that today I wasn't going to bitch and whine.  No, sir, we're going to have a little fun here today, and I do hope that you'll join me!

Back when I lived on the mother ship, (that's the great state of Texas for those of you who don't know), I was a member of a lovely virtual community of mothers.  One such mother has her own fabulous blog called 'Haiku of the Day,' which I highly recommend you read.  Kari's pretty damned funny, and her haikus are, too, even though life is certainly not always a bowl of cherries for her either.  It's quite therapeutic to come up with your own haiku when things are seeming a bit shitty in your life, so I think today is a perfect time to come up with a few of my own.  They don't always have to be funny, and they don't always have to be sad; they're quick expressions of your feelings or current situation.  I find that leaving them as they are on my first take is best.  I honestly don't ever remember revising a haiku upon second reading as you might with other poetry styles.  Here's my quick take on a few haikus for today.  Share some of yours in the comments section!

Shower, elusive

My hair's still in a clip

Oh, wait, that's the dog!

Diapers at seven

Not quite what I imagined

No pee on the floor!

Little brother big

While bigger brother little

Confuses me some

 Parenting is hard

Nobody warned me of this

Where's my manual?

It's Like This. Or not...

Do most of us have a vision or a dream of what our perfect lives should look like, but an inability to attain it? Is it idealistic or selfish to wish for a different you than the one you live with each and every day? I am struggling to live in the now...I suppose I have been stuck in that rut for some time. I have a vision and I just don't know how to get there. Let me rephrase that. I don't know if I'm supposed to get there. When you get married--and especially when you have children--you take on a new identity; a we, not just me, unit that must be considered as a whole. But the 'we' can't entirely work properly if the 'me's' inside of it aren't in tune, right?

Here's my vision (or at least an aerial view of it):

1. A happy, harmonious family unit. Yes, there will still be the normal bickering, but a little less of the tension we have looming over us now would be nice.

2. Music all around us: I always envisioned having a little pick up band that would come to my home once a week or so and play music and drink wine. M's often quite deeply plugged into music-especially when it is live--and I have always thought having a sort of hippie, extended, musical family would benefit him greatly. Last time that happened was on our front porch in Austin, 2007. That's over three years ago for those of you who have killed enough brain cells (like me) to not be able to do basic math :) In other words: too damned long ago. Oh, you should have seen M at that party! He stood an arm's length from the electric guitar player; mesmerized and calm. It was beautiful.

3. A home that we love and want to live in for the rest of our lives (or at least feel like we'd want to). We move around. A lot. Our last home (same one that had that magically musical front porch!) was pretty close to perfect. We had four, fully-fenced acres to safely play on with the most beautiful trees I have ever seen on a residential plot in Central Texas. The deer had babies in our yard each Spring, and from my office window I welcomed back the monogamous pair of woodpeckers as they returned year after year to the same oak tree to kick out the wintering house wrens and have their babies. We watched our creek ebb and flow with the rains, saved a snake once from some garden twine, and took tractor rides down the block to feed the neighborhood goats. I miss having that space!

4. More quiet moments to reflect and write. I have fleeting moments of profound thoughts running through my head. Those are few and far between these days, and other less appreciated moments zap them from my thoughts almost as soon as they've appeared. I know I have a voice to share. I know I have things to put to paper (or blog as it were) that could very well help me process this life and get one step closer to my own version of nirvana, but it's all happening so fiercely and so quickly that I have no time to let it simmer and soak.
Like now, for instance...I've gotten up no less than five times to attend to everyone else's needs. This is life as a parent, I realize. And M is now about four feet from me with his ipad blaring another Disney movie, so I've gotten up a sixth time to turn down the volume. The flow of thoughts that were in my head before I started this post have withered and I am left once again feeling like I didn't quite express what I wanted to, and I certainly have no idea how to conclude it.

I am not living the life I know I am capable of living. This much I know is true. And so the days keep coming and going, no more fulfilled than the last. And my children suffer for it. And I suffer for it. And I must figure out a way to find that music and make it a part of our daily lives.

Where's Waldo? I Mean, Deb

Man, I look at my site meter and see that people are still stopping by here to check in despite nearly a month of silence.  Thanks for a.) caring, b.) wondering what this wack job is up to now, and/or c.) being loyal readers of this chaos.

As my friend, J, said to me yesterday, 'I know you've had plenty to blog about this past month!'  Yes, indeed, I could certainly fill more pages with blah, blah, blah...general suckitude...blah, blah, blah; but as I've said before, I hate that there are long stretches where this blog becomes nothing more than a bitch fest.

I will say this:  not having in-home ABA therapy for the last seven weeks has been awful.  Really and truly awful.  M is unhappy.  I am unhappy.  Everyone is unhappy.  There are sleep issues with both boys that are compounding the unhappiness.  Negative behaviors have returned to M's world, (and then some), and my mental state just doesn't seem to be fully in check to deal with it.  I'm working on that part, but I sometimes feel like I'm walking around like a bleary-eyed drunk, which is ironic since I've actually been drinking a lot less the past couple of months.

When I was a child--starting around age six and lasting probably until I was 13--I had a recurring dream whenever I had a high fever.  In the dream, I was in a white room with no dimensions to it.  I was standing there alone and all of a sudden tires began being thrown at me.  At first the tires were quite small and thrown gently to me, (I had to catch each one), but they would gradually get larger and thrown at a faster pace.  Inevitably, when I got to the point where there was no way I was going to catch the tire, the dream would switch to a playground.  I was on one of those animals atop a large spring coil.  A boy was sitting on one next to me staring.  Never blinking.  He was going back and forth very fast and then got slower...and slower...and slower...and then I would wake up.  I know, I know.  Totally messed up, right?  Probably should have seen a therapist about that one way back when.  But the reason I bring this past dream up is because I'm feeling like I'm in that room with all those tires right now and I'm about to drop them...and then what?  What really happens when I can no longer catch all those damned tires?

I know that there are a lot of people in this world that have lives far more stressful than mine.  I know how fortunate I am in so many ways.  But when tires are being thrown at you from all directions, sometimes it's really hard to appreciate the goodness.  I suppose that's a New Year's resolution in the works.  Wouldn't it be nice if there were no need for resolutions?

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.

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!

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!

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 :)

Five Hours And Counting...

...until bedtime for my munchkins.  I am fried.  Kaput.  Toast.
I feel like I am not dealing with anything very well today and I don't like how that feels.
I've been on hold with Vonage to fix a phone problem. I've tried to hash out a long, past due medical bill (again). I shook B's almond milk not realizing the lid had broken and sending a torrential downpour of chocolate milk all over me and my floor.  I have talked to M's developmental pediatrician about doing another stool test because his belly is ridiculously distended again and the peeing-in-the-pants issue has escalated to him being in pull ups full-time for several weeks now.  I've made an appointment with an ENT on the recommendation of our pediatrician to do a sleep study to see if M has sleep apnea.  I have met with our social worker from the (worthless) regional center for our yearly see-where-we're-at-even-though-we-can't-do-anything-to-help-you meeting.  I have hauled M to B's swim lesson for the first time (since usually he is in school when these occur) only to feel utter frustration and pissed-offedness at how he scratched me and clenched his jaw at me because he didn't want to be there.  (and this was humorous since I was actually thinking about posting how it has been such a joy NOT to be scratched very often since our wonderful ABA therapist started coming here--that'll teach me for having positive thoughts. ha!)  I have yelled at M at least three times to get his brother's beloved, new, now well-chewed, light saber out of his mouth.  I have yelled at my annoying senior citizen dog who refuses to be outside by herself and God forbid away from our sides for more than five minutes.  I have asked B five times to get dressed so that we can go to M's network spinal analysis appointment this afternoon.  I have done three loads of peed-on clothing-filled laundry.  I have told M for the millionth time that it is NOT okay to unroll the entire flipping roll of toilet paper, leaving it in a torn up heap on the bathroom floor.  I have taken three chewed-on dvd cases out of M's mouth.  I have yet again asked B to get dressed for his brother's appointment and he is still not following directions.  (why do three year olds push your buttons so fervently?)  I am having trouble tuning out M's constant verbal self stimulating.  I HAVE A HEADACHE THIS BIG!  (okay, that sort of made me laugh)

I am feeling fragile about my mothering skills today and I hate that.  I like to be in control of my emotions and when I am not, it really bothers me.  I mistakenly opened someone's message from one of the autism support boards I am that was horribly disturbing and made me want to yell at that mother for posting such a thing.  I know that raising a child with autism is really freaking tough and don't need to be inundated with horror stories of other parents who have snapped because they couldn't deal with it anymore.

And now I take a deep sigh and I will go to M's next appointment.  And maybe I'll be able to put my boys in a stroller and take a cleansing walk on the coastal trail to attempt to clear my head a bit afterward.  And when I get home, maybe I'll pour myself a glass of wine as I make dinner.  And maybe I'll even get to read a few pages of the great book I'm reading.  And then I will go to bed and hopefully get a full night's sleep.  And then I will wake up and hopefully find that tomorrow is a much better day...

My Kid Is Special

Oh, things keep getting weirder, sadder, more blatant, and even a bit funny, in a really warped sort of way.

I had my parent/teacher conference last Friday to discuss M and his 'progress.'

The whole team was there and you could tell that we were all a bit tense, wondering which way this thing was going to go. I was mad at myself toward the end when I realized I'd been doing this goofy, repetitive rubbing of my ring finger thing. I hate that people who are supposed to be helping my child can make me nervous like that.

Everyone kept it low-key. This wasn't an official IEP meeting. But I did take a very intended jab at M's teacher at the end when I asked her if I was correct in having seen some of the kids in his class bringing in things for show and tell recently. When she told me I had, I said, 'Weird. No one told M or I about that. Even though he can't talk about an item, per se, it sure would be a nice exercise in INCLUSION!'

In what I now can tell is a very put-on voice, she told me that 'of course, he can participate in show and tell!' Would we like to start on Monday? Any day is fine except Tuesdays! As though all parents need to do to have their kids included in classroom-wide activities is to just come out and ask!

This, of course, happened right after she informed me that next Thursday (today) was the county-wide Special Olympics basketball day in a town about 30 minutes from our own. She made sure to mention that though he attended last year and seemed to do fine, he might 'get more out of his day' if he stayed at the school with his new paraprofessionals because it's just so 'crazy and overstimulating' there. I told her 'fine,' because who wants their kid to go where he's clearly not wanted? I probably should have insisted that I go with him so that he could be INCLUDED, but I didn't think about that until after the fact.

Here's where I was able to laugh about even more blatant, sad, exclusion of my child...when I told the other half about it, he paused for a moment to process what I'd said and replied with, 'Wait a sec. So you're telling me that our kid is too special for Special Olympics?'

HAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHA!

This was so bizarrely funny that I had to share it with my great friend, R, mother of M's best buddy back on the mother ship. We have shared some insanely funny stories in this vain with one another through the years. It's so good to have someone you can laugh about these things with, as completely effed up as they sometimes are. Her response was that I definitely need to get a t-shirt printed up with the saying, 'My child is too special for Special Olympics' on it. Poor Eunice Shriver is probably rolling in her grave over this one!

I just got home from picking M up from school and asked his aide how his day in exile went. She told me that he was pretty aggressive all day, but that maybe it was because they spent it in a new classroom...the typical 1st grade class. Now, I am all for inclusion, but let's not push the poor kid into an inclusive situation when he's pretty much just being set up to fail. For him, recess, music, art, etc. might work okay, but not for the full, academic day. So instead of M being with a huge group of special needs kids where he wouldn't have been weird, annoying or disruptive if he'd been aggressive or overly vocal, we have instead allowed him to 'get more out of his day' by putting him in a class with a bunch of typical kids who have a much easier time of focusing and remaining quiet. Gee, I wonder what they all thought when he lashed out at his aides during the day? I'm guessing they thought a lot more about it than his buddies at Special Olympics would have, and that pisses me off royally.

I left a message with the special education director for a face to face meeting. I'm so sick of this crap and realize that even with excellent new aides from a reputable outside agency, M is NEVER going to make any progress as long as he is in such a hateful environment.

How Much Is Enough?

It's been rough around here again. Damn. I hate even typing that. I totally get whining mother of the past two years.
I almost blogged last night after a very raw and real, holy-shit-I'm-losing-it, kind of evening that ended with a giant bowl of Ben & Jerry's Half Baked ice cream. (Thank you, Ben & Jerry. It was just what the doctor ordered!)
M has been a stimmy mess. And the stims are vocal. And they are LOUD. So basically his entire time at home, post-school, is spent flapping his arms, pacing around the room, and escalating his voice with total gibberish and the occasional recognizable word. (His latest is 'Tunnnnnellll!' a word we always all yell when passing through a tunnel)
I wish I could blame all of this frustrating behavior on gluten infractions (M has been gluten-free for two years) and have them magically disappear once the gluten is out of his system, but let's face it, gluten or not, he is still...severely autistic.

But here's the frustrating and confusing thing about the gluten...it's been B's 'fault' the past two days that M has eaten gluten. We've entered a little phase whereby B does not sit through an entire meal without getting up multiple times. I have to admit that this does not set well with me. I am a firm believer in sitting at the table until your done. I know that I'm going to have to instill this in him a bit more by actually taking his food when he leaves the table. It's not really fair to blame a three-year-old for his brother's issues, which makes me feel really terrible when I tell him to please pay attention when he's got bread or pasta on his plate. How the hell is he supposed to remember that sort of stuff?

And onto food in general...the food obsession thing has gotten OUT.OF.CONTROL. Not only does M spend his time fidgeting and vocally stimming when he is home, he also spends it hunting for food. I have to know where he is at all times because if I don't, I'll likely find him taking a bite out of a tomato (which he doesn't like) or biting into a banana peel or even an onion. I'm at a loss as to where to store my non-refrigerated fruits and veggies so that they are out of his reach. The boy is crafty. And if I make myself something to eat and turn my back for a second, or go to get a glass of water to go with it, I will inevitably turn around and have missed M in stealth mode, sticking his fingers in it about to take a bite.

Cooking is no longer a fun or relaxing thing to do. I spend way too much time herding him away from things I have just chopped, and worse, from sticking his hands into pans on top of the stove. He never used to do this!! What the hell is going on?

I know that this concern over gluten infractions is why doctors and nutritionists suggest that an entire family go on the diet together. I get it, I really do. I also know that it would probably be very beneficial for all of us to be gluten-free.
But you know what? I'm fucking tired of it. I'm tired of doing a thing that I don't see 'wow-me' results from. Yes, he turns into a hyperactive maniac when he gets a bit of gluten accidentally. BUT HE IS STILL SEVERELY AUTISTIC. Yes, his poop is more formed since we started the diet. BUT HE HAS SINCE REGRESSED TO BECOME SEVERELY AUTISTIC.

And then there are the supplements. I am a big believer in vitamins, always have been. Blood tests have shown me that M is low on iron, calcium, magnesium and vitamin D...this part is not hocus pocus, it is medically there in front of me to see as necessary. But you know what...even if I try to bolster all of those things that the lab tests show me he is lacking...wait for it...HE'S STILL SEVERELY AUTISTIC.

When we were on the plane home from Kauai I lost my cell phone for a bit. It turns out, I'd set it on my chair next to M and then gotten up to grab something for B. M had grabbed the phone and somehow hid it (not intentionally) underneath him. I was so worried that I'd lost the thing that the other half even had the flight attendant come over with a flashlight. The attendant asked me to tell her when I found it, so I did. It's hard to explain why your child didn't just tell you he had your phone, so I briefly explained the situation by saying that my son is 'non-verbal.' Afterward, the other half looked at me a bit offended and said, 'M isn't non-verbal! He talks!' It hurt my heart because I know that this is what he wants to believe, and here I am getting into that 'realistic' stage with him still lagging just behind me. M does not express his needs. Yes, there are a few recognizable words, but you know what? HE IS NON-VERBAL!

Clearly all of this has me worked up. I want so desperately to help my beautiful child and to bring him more into my world. It makes me feel horrid that our afternoons are spent annoyed at him and on edge because there is never a second without movement or sound. (funny...I just typed that and he is actually sitting still with his chew tube, barely making a sound right now. Oh, wait...never mind. There he goes again! I swear, that really just happened that way!)
And poor B, the world's most compassionate and patient child has even started to get bothered by M's sounds. He actually said to him the other day, 'M! Stop making your sounds! You need to say things like I want to play with you, or be my friend!' I told him he was breaking my heart--and he was--but being the funny boy he is, now every time he tells M to say real words he immediately turns to me and says, 'Am I breaking your heart, Mom?' Oh, that boy....!

Our Dan! doctor wants us to try an elimination diet next. He is without answers too and freely admits that our next step may need to be medication. Though I was at first open to the idea of an elimination diet, I am now at the point of saying, 'screw it.' Screw the diet. Screw the vitamins. Screw the no-prescribed-medications belief. We're all a bit miserable in each other's company at present, and this is just no way for a family to live.

I'll shut up now...and I may even get myself some more Half Baked ice cream.

Thankful Sunday (Because It's Cheaper Than Therapy!)

Today I am thankful for my village.
Have you read 'The Red Tent?' If not, you should.
We weren't necessarily meant to do all of this parenting alone, you know!

I feel so blessed to have made several amazing friends here...not just the kind that you drink wine with over a good bitch session, but the kind that you drink and bitch with over way more hours than you'd normally spend at someone else's house; hours during which you're perfectly comfortable to help yourself, rummage through their kitchen in search of the perfect serving dish, and have your children run around like banshees while your rear is planted firmly in their kitchen chair-because you don't have to worry that your children are going to dart into a street or take off with a stranger.

I was fortunate enough to have two such days this week and it was fantastic. Both families are quite different; one, a family whose son also has autism, and the other a family with three typical children who all have this fabulous gift of accepting M and all his quirks and still try to include him over and over again. I love that these friends don't care if their homes are spotless when I come over...or that they forgot to cook a vegetable to go with the chicken. I love that they take the initiative to put a borrowed t-shirt on B who arrived wrongly dressed for the hot weather in a long-sleeved shirt and jeans. I love that when M could not handle the movie I suggested we see, they did not feel short changed (even though I did!) and suggested instead we head back to their house to relax. I love that they told me how relaxed they, too, feel just hanging out with us.

It really does take a village. Let us not forget this and always cherish the good friends we have in our lives.

What do you love about your village?

Things I Am Currently Stressing Over

Bet you can't wait to hear, huh? Bet you can guess what they are, huh?
(Alright...anyone reading the above with an old-timey, Jimmy Stewartish voice, while mimicking tipping their cigar ashes to the floor? No?? Huh...)

Money: It is freaking expensive to live here. The other half makes a great salary by all accounts and yet we still worry. Ridiculous.

The Real Estate Market: This one ties in nicely with the first. Let it be said that Mama Deb has finally accepted her fate and realizes there will not be a chance to sell--and subsequently move out of--this house until, AT MINIMUM, Spring of 2010. The final realization came last week after learning that a comparable house to ours came absolutely no where near appraising. Damn. Damn. Damn.

Anyone care to take dibs on which one is next....

SCHOOL! Yep, you guessed it. Still stressing about M's school. He did fine during summer school (different teacher, one of the same aides, mostly different kids, different elementary school...hmmm?), but has already shown great displeasure with going to class each day. We don't struggle every single day, but we're only about eight days in and I'd say five of those have been really tough. But what is tougher is hearing that he is very agitated, showing a ton of self-stimulatory behaviors, or easily angered during the school day. And at night we have been dealing with a little guy whose emotions are so out of control that he is starting to show a bit of rage towards mostly me and his little brother. It is both scary, upsetting, and enough to make a person really pissed off. There is only so much being pinched or kicked a Mom can take :(

And finally...

The grand combination of money AND school! Because I have just received a delightful little note from the district saying that though they are pleased to see M back in school this year, they need me to understand that they will not be able to continue serving him without me signing the latest education plan. (These are those IEP things I have previously mentioned. It is not recommended that a parent sign these if they are not in agreement with them. Because these plans have outlined an education that is to be granted in a public elementary school as opposed to the private autism school M needs to be in, I have not signed. I did this fully knowing that we'd come to this point eventually where one of us would be forced to take that legal turn...here we go!) So I am scrambling for advice from some specialists whose opinions I value and I imagine our next move will be to hire an attorney or an advocate. Can I curse here? Because I really want to yell out, 'FUCK.' There. That's better. Thanks.

That is all!

Thankful Sunday

Today I am thankful for the ocean. The one I look at as I wash dishes, take a shower, walk by my dining room table...something I try hard not to take for granted. I look to see how many fishing boats are heading out each morning, and to see the lone light of the last one in after dusk. I look to see if the waves are high by counting the black dots of surfers in wetsuits. I gauge the outside temperature by how far off the coast the fog lies. I love this ocean.

When we decided to move here the main plus that kept coming up was how good we thought the ocean would be for M. I must admit that for the first ten of our fifteen months here I did not have much confidence in taking my two boys to the beach. After several failed attempts I could not see the worth of trying. But as of late, when my boy gets agitated on just about any errand or outing we take, the ocean has become my sanctuary. It is the place I know he will remain content watching the waves crash, and digging, digging the sand with his fingers and toes. And because B loves to hunt for 'treasures,' run as fast as he can and dive into the sand over and over, and humors my new obsession of hunting for sea glass, I look forward to our visits to the beach. This amazing ocean is the thing that continues to cause me doubt in ever leaving this place.

I wish I could win the lottery and start an autism school of my own here on the coast...oh, and move all of our family here so we can have the support and love we miss so very much!

Status

Debbie is: tired of changing, washing, folding, putting on bed linens. She is also tired of wet carseats and clothes that smell like urine.

PLEASE MAKE THE PEE STOP!

M has been soaking his bed probably three times a week the past couple of months. He has also been wetting his pants 1-2 times/week during the day. It is as though he is completely unaware of it or just does not care. He will sit in it until we notice. This is the child who had not had a single daytime accident in about 18 months. Why is that??
And then B decided at some point between me putting him to bed and him actually going to sleep to take off his pants and diaper. A very pissed off (ha!) B came sopping wet into my room at around 3 a.m. this morning. Oh, and did I tell you that he's taken to pooping on the floor? It is a cross between wanting attention and thinking it is hilarious when one of our dogs eats it. (Totally disgusting. Want to come pet my dog?) Psych 101 tells me that this is yet another instance where B is acting out in ways similar to his brother (though when M pees it is not because he is acting out) in order to get more attention from us. It's tough to keep your reaction in check. The bribe, I mean promise, of ice cream tomorrow seems to be helping today though!

I have finally wised up when it comes to my own tempurpedic bed. After having to unzip the fortunately-waterproof-yet-not-so-easy-to-remove-and-put-back cover a zillion times I finally bought another waterproof mattress cover to go on top of it.
I'm quick these days, I tell ya.

Does anyone have any recommendations for a good overnight diaper that I haven't heard of yet? We are currently using the Overnites, size S-M. I have also tried that new competing brand and they suck even worse. Anyone? Anyone?

Symptoms Of Parenting A Child With Special Needs

Hop on over to Hopeful Parents to read my latest blog entry!

What A Difference A Day Makes

The second half of yesterday was B-A-D. (And no, not in a Michael Jackson sort of way)
I was in the foulest of foul moods, and I'm sure now most of my neighbors are aware of this fact as well :)

I was going to blog about it last night, but I kept thinking that my opening line would have been something to the effect of me calling the other half on the phone, (as he was wining and dining clients in downtown San Diego at the time), and saying 'GET ME THE FUCK OUT OF THIS STRESSHOLE!!'

And that would have likely been followed by a very large string of run-on sentences describing all of the pleasantries my children, dogs, bum ankle, and lovely, multi-storied, hilly-freaking house were providing me on an afternoon where all I really wanted to do was watch them in the backyard as they got a little fresh air and I drank a nice glass of chianti and read my People magazine. Uh, yeah...not so much.

Seriously, people. It should NOT be this hard to do such a simple thing! But it is. This is my life, for better or for worse.

A couple of weeks ago a similar scenario played out, but while we were attempting to have the kids play outside the other half and I were trying to grill some dinner. Total chaos. Not one moment of someone not crying, screaming, asking for this, that and the other, PUTTING THEIR HANDS DOWN THEIR PANTS (ahem), etc. The other half and I were beat. Exhausted. Stick a fork in us, we were done. He looked at me with weary eyes and said, 'It wasn't supposed to be this hard.' I immediately went to him and we hugged, speechless, for quite some time. It was actually a good moment within a bad one because I needed to know that he thinks this is really freaking hard sometimes, too.

But as bad days become a memory you'd like to forget, good moments (maybe not entire days!) follow to help make up for it. For instance, I was downstairs putting B to bed last night while M was upstairs on the potty. I thought I heard a noise, so I yelled up to him, 'M! Are you okay?' Normally I would not receive an answer from him. In fact, I don't believe I have ever received an answer from him when I have asked if he was okay. But sure enough, I heard his sweet, little voice respond appropriately to me, 'Yes.' He said 'yes!' YES! He doesn't generally say yes. He'll sometimes say no, but yes?! It was a beautiful thing.

And then there was this morning. We all slept in until a glorious 8:20 am when I heard M chattering away in his room. I went in and was greeted with the most beautiful smile. I can't truly describe this smile except to say that if you know M, you know how special it is. It is a smile that cannot be faked; one that depicts pure happiness and the innocence of my boy who wears his emotions unabashedly, unlike typical people who are better at masking them. I immediately got under the covers next to him and we snuggled, smiling all the while, for a good ten minutes. It was lovely and the right way to start a new day.

And so here we are; a new day. And all I can do is hope that the second half of it goes as lovely as the first!

Remember To Take Care Of YOU!

Today I'm over at Hopeful Parents. I will be the first to say this is not my best contribution as today I am realizing the effects of too many beers last night. I am such a lightweight!

Getting Away From It All

First off, have any of you ever noticed that I always capitalize each word of my post titles? (I am betting that a certain vice-principal, writer-extraordinaire, reader has! haha) I love punctuation, if you haven't already noticed. I found James Frey's 'A Million Little Pieces' utterly fascinating because of the way it was punctuated. Check it out and you'll see what I mean. It's my geeky way of being literarily-rebellious. (And look-I just made up a new word!) I also like to end sentences with prepositions. Take that, eight grade English teacher, Mrs. Woodard. I'd like to see one of your appliqued sweaters and your pointer stick try to be so daring...ha!

Okay, back to the point of this post. Yes, I seem to be lagging quite a bit between blog entries. I think of something to write at least once each day, but I can't quite wrap my brain around taking the time to sit down and let it spill out. (A-ha! Another sentence ending in a preposition!!)

I think part of the problem is that most of what I am thinking about seems too personal to open up about. (Yes, 'about' is a preposition) It's not that I don't feel comfortable writing about these things, it's just that I am pretty sure I'd feel obligated to qualify each feeling with an 'I realize I am very lucky,' or 'I wouldn't change my life if I could,' yada, yada, yada. You know...all of those things the guilt of society makes us feel we have to say. It's not that I am not thankful for being so blessed in many ways, or that I'd change things if I could, it's just that, dang it, sometimes I want to expand upon the feeling of, 'This SUCKS,' or 'Why me?' Yes, I realize I do that to an extent, but sometimes you just feel like having an all-out, sprawled on the ground, kicking and screaming, two-year-old, temper tantrum, ya know?

So what do you do when you're feeling the stress? You high-tail it out of town, that's what. On Wednesday night the other half (who has been lacking in spontaneity the past five or so years) said, 'Why don't we go somewhere for the long weekend?' Sounds great to me, as I'm always up for a road trip, but, uh, it's Memorial Day weekend; one of the busiest weekends of the year. Well, since we like to do it up stress-style 'round here, we searched for a rental house until finally finding one in Mendocino at 5pm on Thursday night. We were packed and in the car by 5:18 and on our way up the coast. We stayed in an amazing house the first two nights. It even had a full-size arcade game programmed with all of the oldies like Burgertime, Space Invaders, Joust, and Jungle Hunt. We lounged around, went to the farmer's market and saw more dreadlocks on pre-pubescent kids than I've ever seen in my lifetime. I finished my second book in over a year (so sad that I've lost my ability to take time to read). I read TWO People magazines. We hot tubbed. We saw wild turkeys. We ate a feck-load of bacon. We danced to Pandora. We left food on the counters without worrying that a dog or cat was going to eat it. But perhaps most important, the other half and I co-parented better than we have in a very long time. He stepped up to the plate with the boys way more than he has in quite awhile, and I really, really, REALLY needed that from him. I've come to realize that part of my problem (only part, not all...there is no blame game going on here) is that I take my frustrations out on the kids and become overly-stressed with them because I am frustrated with him. I have felt like I am the one constantly dealing with the struggle that is getting M dressed (and subsequently, often being hit), or taking him to appointments; or the only one responding to B's relentless whining and requests. I suspect the other half has finally noticed my resolve crumbling. Heck, who are we kidding? It's not just crumbling, it's coming down in a torrential landslide at this point.
We were so sad to have to check out of our little paradise less than two days after we'd gotten there that we decided to find another rental for another two days. The second house was not nearly as plush as the first, but it was very family-centric in its layout and ended up working out very well for us. Television was not a focus on this house, so we took walks, collected wildflowers, and played in the yard. The second house struck a chord with us because the owners had noted in their guest book that their son had been born with a serious heart defect that had resulted in several surgeries and ultimately, a heart transplant. The family wrote that they did not know how long their son would be on this earth, so they built the home knowing that they needed a place to make cherished memories and to get away from the stress, worries and fears of home. My gosh, could we not relate! The other half and I both noted that you could really feel the presence of the little boy in that house. I do not know if he is still physically present on this earth, but I sense that he will always fill the rooms of that house no matter what.

We took the scenic, coastal route home; anything to extend the familial high we seemed to be on.

When we got close to home you could sense that we all felt the anxiety rising once again. The worst part was that M started crying when we turned onto our street.

We dreamed of a vacation getaway similar to those we rented. We spoke of ways to continue that feeling of being on vacation in order to help us through the tough times. We decided that we need to visit places like Mendocino more often. Places that give us that peace our bodies need in order to stay healthy; places that bring us together as a family and remind us that we do love each other and that we are, after all, quite blessed.