Wednesday, December 22, 2010

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.

Saturday, December 11, 2010

Have You Seen This?

Truly amazing and beautiful...

Wednesday, December 8, 2010

Is There A Doctor In The House?

I posted the following at Hopeful Parents. Be sure to stop by their site for the Pampered Chef giveaway!

M has pink eye. How we had managed to go for over seven years unscathed by this lovely bacteria, I am not sure. Actually, I think we might be fairly average in this regard, (I've never had it in my 37), but my pediatrician's shock over it made me wonder if it was that unusual to have not experienced such joy as of yet. His chuckle-y reaction got me thinking about how we are perceived by the doctors we visit who aren't traditionally the ones who see kids on the spectrum or with other special needs very often. Do they assume that with all the other craziness we seem to embody that our kids are likely to get every ailment under the sun compounded with their unfortunate tempting of the odds to have their chosen disability in the first place?

We live in a smallish town that requires one to drive over a small mountain (or a large hill--whichever optimistic/pessimistic approach you'd like to apply to this road that winds up and then down) if you want to go to any of the big box stores. And if you want to go to really good doctors...well, the word on the streets is that you should drive over the hill for that, too.

We do drive over the hill for most of our doctors, and even for a developmental pediatrician that also assists us with our biomedical intervention. However, I also wanted an in-network pediatrician nearby for those times when my kids are sick and none of us has the desire to sit in a car 30-minutes each way; not to mention a doctor who only charges us a standard co-pay rather than the full amount of a visit up front that we must then wait to get a meager reimbursement for...oh, the expenses we hopeful parents must endure!

This was the doctor we saw yesterday. He truly is a lovely man; a youngish doctor who is genuinely trying to set up an old-school, small town practice where he gets to know his patients a bit better than in the bigger towns. There are plenty of kids in our town with disabilities, but I get a strong sense he doesn't see many of them on a regular basis; and the ones he does see, I suspect are a bit easier going about doctor visits than poor M is. Whenever we go to see him (which is rarely, thank goodness) he sort of looks at me like 'how do you want me to go about doing this?' In fact, for the required school health check last year, he literally did say to me, 'What of these required items do you think I can check?' I suppose I always respect a person who is willing to admit when they don't know something, but I am so frazzled by the time we are five minutes into most appointments that I haven't even got an idea of why we are there or what my name is.

We got out relatively unscathed yesterday. I only had to wrestle M's very, very strong 62 pounds during an under-the-arm temperature scan and when the doctor was checking his ears and nose. But the times when we have had to do strep test swabs...fuggedaboutit. On those occasions I leave sweat-colored and exasperated; unnecessarily apologetic and embarrassed. I know that the doctor likely takes pity on me more than he does M. He practically said so yesterday with his comment that he felt bad for me because he knew this was going to get even more difficult as M gets bigger and stronger. It left me with a sort of unease because I am in a transitional phase with this hopeful parenting thing; a phase where I am trying my hardest to stop feeling sorry for myself and projecting that sorrow onto other people. I realize that until I can allow that transition to fully happen people-doctors included-are going to continue to put their focus on me and not necessarily as much on M.

As M's Mom and main caregiver and advocate, I have to continue to seek out the best doctors to treat and understand my son. But above and beyond that, I have to find doctors that care about him and want to get to know him. These are the gems we have to seek out to become members of our children's very important teams.

Saturday, December 4, 2010

Grab A Tissue

This is a little corny, but damn if it doesn't sum this journey up really well.  Sigh...

Thursday, December 2, 2010

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?

Monday, November 8, 2010

Wanna Hear A Funny Story?

Our insurance company (ha! I made a typo at first and wrote 'sinsurance') wanted us to have a conference call with them this morning.  They gathered some big wigs in the room like their clinical social worker in charge of the 'care' management team, a senior care manager, and a doctor from the Bay Area who is a board certified child psychiatrist and director of behavioral health.  The purpose of the call was for them to give us suggestions that we may not have already come up with to better our child's health.  (HAHAHAHAHAHAHAHA)

So we discuss the speech and occupational therapy we're doing privately and at school.  Child psych agrees this is a good thing.  (gee, thanks)  Child psych then says that he noticed that in the last seven years we have not yet seen a child psychiatrist.  I had been concerned that this man would 'advise' us to seek medication for M, so I asked him straight out if that was his point.  He responded by saying that he didn't necessarily agree medication was always the right thing and couldn't comment specifically on that since he hadn't met our son.  Good man for saying that because I'd a pulled out a can of whoop ass if he had!  But he said that a psychiatrist would advise us on other behavioral interventions.

Wha??  Stop right there, doc.  So I said to him (in my best lawyer-esque, leading question, sort of way) 'exactly what other behavioral interventions could you mean??'  I'll give you one guess what he said.......

Wait for it....

Applied Behavioral Analysis!  The very reason we were having the freaking call!  Because the stupid-ass insurance company believes it to simply be educational and not worth of covering.  Anyone else find this ever-so-ironic?

They took it one fabulous step beyond that and let us know that they'd been awesome enough to do some research for me and found a provider who would charge us a lot less than our current provider had.  Of course, this would come from our own pockets, but aren't they so great to have done all that legwork and made all those phone calls for little-old-us?  Wow, I am so honored.

I made a point to remind them that the only reason we'd gone with the provider we had was because at the time they were the only ones in-network, which was their requirement.  I also made a point of reminding them that the reason our therapist was more expensive than most therapists was because they required her to be of a higher accreditation.   Funny, no one said a word after that.

We let them know that we'd be starting the tedious appeal process immediately knowing full well they're going to deny us at first.

What a joke.  What a freaking waste of our time.  $#@(**!!

Sunday, November 7, 2010

The Fight

Sorry for the delay in updating everyone on our crazy ABA/insurance situation.  The following was just posted over at Hopeful Parents:

As a parent of a child with autism, sometimes I really feel the weight on our generation to lay the groundwork for future families of autistics.  I accept that responsibility and do what I am capable of doing to mend the gaping hole that lies between our children's needs and rights and what our society actually offers them.  
But no matter how responsible I feel, I can't help but have those moments (many, in fact) where I allow myself a tiny pity party (often with wine/whine) because I just get tired of fighting.  For every.little.thing.
I find myself sometimes resenting those around me who have it so easy, and have to remind myself frequently that a.) everyone carries their own burdens whether I know it or not, and b.) maybe there is a teensy bit of truth in the idea that somebody in the universe thought I might be a little better suited to carry this load than someone else.  (insert maniacal laugh here)
For the past six months my family has had a huge weight lifted from our shoulders. A calm like we hadn't known in several years. We were finally able to have ABA (applied behavioral analysis) covered by our insurance company.  For those of you out there that have self-insured insurance plans, you know that this is next to impossible to achieve.  It took me over two years to do it, and I was ecstatic when I learned that we would be authorized for 25 hours/week at a co-pay of only $15/day.  
That calm came to a screeching halt two weeks ago as I was informed by a 'care manager' from our insurance company that the past six months had all been a big oopsie and were authorized and paid for in error.  Despite having a piece of paper in my possession that was the most recent 60-day authorization good through the end of November, I was told that no claims would be paid past the day of the phone call.  Apparently in the insurance world, documents I would consider binding don't have to be if the insurance company decides the rules need to be changed.  This is all most certainly unethical, and I can't help but wonder if it is illegal as well.
What we are left with now is a boy who doesn't understand why his beloved therapist no longer visits him each afternoon after school.  A boy whose hyperactivity and agitation have most definitely increased again, along with my own stress and guilt at not being as skilled or patient at keeping him engaged myself. My husband and I are faced with the daunting appeal process that lies ahead; one that will likely take up the next four months (at least) and require $150/hour for the services of the autism advocate we are hiring, not to mention the uncomfortable situation my husband is going to be put in since this will inevitably end up as an investigation on his company by the department of labor.
His company has taken good care of us financially thus far.  They have given him a solid job with room for significant growth in a time when many families worry about that sort of thing.  And yet, they aren't able to give us what we really need the most:  help for our child.  
Autism benefits for a company the size of the one my husband works for would cost millions of dollars.  I realize the impact this has on a company's bottom line.  But I also know just how many millions of dollars my husband brings in for his company...a number that far outweighs what an autism benefit would cost.
There are many large corporations who have collaborated with autism support groups to create such autism packages.  These companies have realized that by doing so, they've created a better environment for their employees as well.  Productivity levels will increase, not only because the employees loyalty will increase, but because they aren't having to spend countless hours during the workday fighting unpaid insurance claims and researching treatment options that might get paid.  These companies have taken a huge step forward that I hope more companies will follow.  But they won't do it unless we parents take a stand and let them know just how important it is.  And so, as frustrating as it is, we all must do our part in helping this country realize the importance of making treatments for autism like ABA accessible to ALL families.  We're going to have an even bigger problem on our hands when these kids reach adulthood if we don't help them as much as we can as children.

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


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!'


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.'


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 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!

Sunday, September 12, 2010

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?

Saturday, September 11, 2010

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.

Tuesday, September 7, 2010

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  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!

Monday, August 30, 2010

Autism In Film

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

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

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

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

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

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

Thursday, August 26, 2010

Spare Some Good Energy?

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

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

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

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

Tuesday, August 24, 2010

Verbal Vomit

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

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

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

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

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

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

Monday, August 23, 2010

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

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

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

Oh, you don't know either??

Well, that makes me feel a bit better :)

Sunday, August 8, 2010

Gone Fishin' - A Guest Post

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

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

Friday, August 6, 2010


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

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

Thursday, July 22, 2010

Irving strangulation case: Mom says she wanted 'normal kids'

Irving strangulation case: Mom says she wanted 'normal kids'

Okay, please don't read the above if you are the parent of a child with autism who is feeling overly stressed right now as I was yesterday when I read it!!

I am not 100% sure about even re-posting the story here, but I feel a huge need to talk about it.

The link is not to the main news story, but to a blogger's thoughts about it. She gives some really good advice and insight that I thought was worth sharing.

I also want to tell my friends who are reading this--especially those of you who do not have children with special needs--that you make life easier for me every day that you are
here for me, listening and offering encouragement. Sometimes I wonder why y'all stick around. Even I get tired of hearing myself talk about autism sometimes. And yet you stay and you love me for me.
(well, and I have excellent taste in wine and music, but that's a whole other point-ha!)

But, seriously...thank you. I couldn't do this without you.

Wednesday, July 21, 2010

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...

Monday, July 19, 2010


I often get asked, 'When did you know something wasn't right with M?'
I don't believe our situation has been quite the same as so many families who have a child with autism, so I thought I'd share it with you.
M was a happy, healthy boy born past my due date by induction.  (and, yes, this is one of the many things that I sometimes torture myself with as I think of the 'what ifs')

He was bearing weight on his legs at an early age.  He smiled on time.  He held his head up strongly.  He sat up early.  The one milestone he didn't make that first six months was rolling over, but we'd seen it happen one time and thought it wasn't a big deal.

Around six months our happy boy began to do a few things that puzzled us.  He would incessantly shake his head-a giant grin on his face-as though he were trying to say 'no.'  I mentioned it several times to my pediatrician in conjunction with the note that we also have a nephew on the spectrum, and each time I was brushed aside like I was saying the silliest thing she'd ever heard.  M's head was also in the 95th+ percentile, which we questioned as well.  Though in truth, my family has a history of giant Polish/Irish noggins!

At nine months M began to do another strange thing.  While sitting up, and generally when he was very excited, he would put his little hands in fists out in front of him, tense his whole body to the point of shaking ever so slightly, and yell out happily, 'EEEEEEE!'
Again, I brought up this peculiarity to my pediatrician.  Again, I was told, and I quote, 'This child is NOT autistic.'

A year came and I can recall looking at photos much later how withdrawn and timid he seemed at his birthday party as his Aunt K held him during present-opening time.  I vividly remember saying that it was probably because he didn't know her well yet and was being shy.  But was it really that, or did he falter further after his one-year checkup?  I will never really know.  I always am careful to tell people that were were not one of those families who saw overnight changes in M after a vaccine.   There were the signs I mentioned earlier that tell us he experienced delays from birth.  I try not to get too obsessive or caught up in the vaccine debate, but in my humble opinion, I do wish that I had spread out and declined some of the vaccinations I did give him.

Back to his first year...I became very ill right around that time with a mystery, mega-virus for three whole months.  Multiple tests and trips to specialists (including a rheumatologist since my mother has severe rheumatoid arthritis) brought up nothing but a faint positive on the mono spot test.  It was the rheumatologist who told me that I likely did not have mono, but a mega virus that mimicked it with no name.  Regardless, it was the scariest kind of sick I have ever been and it left me in an awful state of depression.

M wasn't crawling at this point, yet another thing I had pointed out in concern to my pediatrician.  Even though I knew in my heart that this wasn't right, I remember feeling so ill that I was silently grateful for his immobility at the time.  It was about a month into this that my brother-in-law, the father of our nephew who is on the spectrum, spoke to my husband about his concerns for M's development.

When the other half came to me I felt very angry and defensive.  I do feel sorrow for my initial reaction.  I know now that it came from a place of love.  My main reason for such defense, however, was that I felt no one believed that I had been concerned or asking questions leading up to that point.  I have since that time learned on far too many occasions that a parent really does have to come to the point of seeing things for what they are mostly on their own.  I am grateful that my brother-in-law prodded us to seek an evaluation from early intervention, but I am also grateful that the prodding was left at that and not taken too much further.  I think just as a new parent needs her baby to sleep lots, then crawl, then walk...nature's way of preparing you for the next stage gradually, a parent of a child with special needs often also needs those baby steps to ease them into the hand they are dealt.

Our (less-than-stellar) pediatric neurologist that we began seeing around 18 months also would continually tell us that 'something was going on, but he didn't think it was autism.'  Many specialists would say this to us as M did seem to have a certain engagement to him that didn't seem typical of so many autistic children.  (*Please note that I firmly believe that ALL children on the spectrum have the desire and potential to engage and form relationships.)  And then there is the almost-laughable labels that he gave us; the ones so many of you parents of autistic children also received:  sensory integration dysfunction and global delays.  I would love to know just how many children are given those descriptives and DON'T later end up with an autism spectrum diagnosis?  Again, maybe it's all part of the settling-down-with-it process.  Less scary words to help you ease into the whammy that lies ahead...

And yet, when we did finally get the A-word whammy, it was actually quite less of a big deal for me.  I was alone with M at our yearly appointment.  He was 4 1/2 years old by this point and had been seeing a slew of therapists and specialists for over three years by then.  I calmly waited for the doctor to come in and calmly accepted his speech that went something like this:

Dr:  Well, I suppose it's time we put a name to this.
Me:  Yep.  I figured you would say that this time.
Dr. (totally non-plussed, no emotion) I believe M has high-functioning autism.  (and here's where you'll probably get the same chuckle I did when I left the office) Some people call it PDD-NOS, others call it Aspbergers.
Me:  Ok.  That's what I thought.
Dr.:  We'll see him in six months to a year.
Me:  Ok

Done.  That was it.  I didn't feel like I died that day.  I think I'd died a hundred small deaths already before then.  I didn't feel like someone had hit me with a baseball bat.  I felt totally at ease.  I called the other half on the way home and matter-of-factly told him what the verdict was.  (though I always said PDD-NOS because even I am not so much of an idiot as to think that is the same thing as Aspberger's...seriously!!)

I was somewhat delighted to be able to stop telling people, 'Oh, my son has sensory processing issues and global delays.'  The word 'autism' is a hell of a lot shorter and has much greater meaning to the general public, as vast as the spectrum is, and as little as people really do understand it.

The 'other health impairment' diagnosis that allowed him to be accepted into the public school's special ed. preschool program was quietly changed to autism.  We were two months from moving from the mother ship to California and this change would allow us to receive more services than OHI would have.

Unfortunately that high-functioning diagnosis would not hold and I will never know if it could have had we stayed in Texas.  Our boy, as you probably know, has plummeted and regressed into the world of moderate to severely afflicted autism.  This began when he was nearly five, a sad situation I have not found duplicated yet through all of the families I have met in person or virtually.  

I suppose the purpose of me writing this here and sharing it with you is twofold.  First, I need to document these things for myself, in hopes that one day I can read it again and think, 'My, how far we have come!'  But I also want to document it in case one of you readers is following a similar path.  I am knee-deep in the emotions that come along with autism.  I am often barely able to fully help myself find my way through it all.  But I know that the one thing I can fully offer up is a type of mentorship to those who walk this path after me, just as so many--like Susan Senator or Casdok--do for me.  Because it helps to not feel so damned alone in this all the time.  And let's face it, even though the numbers are an astounding 1 in 91, you can still feel like the last one picked for the team.  Sometimes I, as outgoing and personable as I may seem outwardly, feel almost autistic myself.  And, perhaps, that is just nature's way of also helping me to understand just a little more...