Take Me Out To The Ball Game!

Friday, May 25, 2012

Another post where I realize I'm the one with challenges

I'm beginning to realize that my life is really just a series of long held beliefs colliding with reality.  Sometimes the collisions are messy, but if I shut up long enough, good things usually come from the wreckage.

You know why they call it "Challenger Baseball"?  Because it challenges your long-held beliefs.  Because it makes you look deep inside and deal with what you believe not only about yourself, but what's best for your kids, and even the identity of your family.  See, I'm a self-proclaimed radical inclusionist.  I believe to my core that kids with disabilities benefit infinitely from being included in general education classrooms, in churches, and in community activities.  Now, here comes the train wreck:  after moving to Our Town our kids had been invited to join a baseball team for kids with special needs and teams for kids with special needs are decidedly NOT inclusive because to be able to participate you have to have some kind of "dis"ability.  The second part of my problem was that our daughter had just recently benefited tremendously by playing on a soccer team for kids with special needs in our previous community in the South Bay of Los Angeles, and I couldn't argue with the results.  I was in quite the pickle:  I knew that neither of my children would ever be welcome to play on any team with typically developing kids, and with my daughter having played fall soccer I could see with my own two eyes how being on that team had allowed her to shine so bright and gain so much confidence in just a matter of weeks it was staggering.  (And ya, that was me crying like a baby on the sidelines of her soccer game on that Saturday in early March when I realized we would be moving within a matter of days.)

But here we were, brand new to Our Town and faced with this new opportunity.  I was 99% sure our daughter wasn't going to go for it (our daughter takes awhile to adjust to change (okay, okay, she doesn't transition AT ALL), and she had just adamantly refused to play on a similar baseball team back in Manhattan Beach, and on my son's side I was positive there was NO way he would find it remotely enjoyable to throw a ball when someone actually wanted him to and to where someone wanted him to.  And the whole batting thing?  Um, ya........taking the "Manny Ramirez batting stance" in the reflection of the back patio sliding glass doors is entirely different from facing the "high pressure" situation of batting off a T (ya, I had done my homework; I know ALL about those Little League Parents).  I just knew it wouldn't work.  But my husband's friend and his secretary (who really is the driving force of the entire Challenger Baseball league) convinced us that the kids would absolutely love it and that the whole organization was filled with amazing families.  My daughter cautiously said she'd give it a try and Hayden, being non verbal, didn't really have a choice.  We figured we'd have him try it, but if he looked or acted unhappy, we'd let him quit immediately and join us in the stands.

This is Hayden before the start of his first game looking quite miserable and upset:

This is Hayden leading the team and everyone in the stands in a cheer for him at his first ever at-bat.  Not a great photo I know, but you should have heard the crowd laugh and cheer with him;  sheer JOY!

Okay, so it looked like the boy was going to be okay.  The daughter?  She LOVED IT from the first second and I wish I had a photo of that. For the first game our team's buddies were the girls from the local university's varsity softball team, and as "luck" would have it, two of them lived next door to us, but we hadn't met them yet.  Jackpot!!  Our daughter was THRILLED to meet real live girl college athletes....plus they were NEIGHBORS who would be her INSTANT (in her mind) playmates.  Cha Ching!!

So now Challenger Baseball was underway in Our Town and it just got better and better with each game.  The next week the buddies were the football players from the local university led by the brand new head football coach, and those guys were awesome; friendly, outgoing, smiles a mile wide long and their whole focus was to make sure our kids had fun.  Week after week university athletes, kids from a local youth group, local high school all star baseball players came and our kids were having a blast; they laughed, they ran, they threw, they batted, they stomped on home base like it was a giant bug to squish, and they grinned from ear to ear when they saw all of us cheering for them.

And then for the last game, the piece de resistance that all the Challenger families had been joyfully anticipating all season long:  four participating teams from the national Junior College World Series Tournament came to town early to be buddies for our kids for their last game.  The mood was set when each JUCO player handed his buddy (one of our kids) a t-shirt and matching cap from his team (oh ya, there I go again getting all weepy).  After the game we had a big ol' barbeque and I don't know about anybody else's, but our buddies were stuck with us like we gave them an option (like we gave them an option) for the entire picnic and I'm pretty sure my daughter was the happiest child on earth:  she had her very own baseball player (you can't get those at Petco now can ya? huh?), and he really liked her lizard, Al the team mascot (Al went to most of the games in his own carrying case stocked with his own pipe-cleaner sword and a plastic knight inside his enclosure should he want to take a jaunty ride during the game).  Life was good!  Hayden's buddy was just one big walking smile from the second he met Hayden.  He followed him ALL over the ball field (and I do mean ALL over, because Hayden never stays in one place for more than :14 seconds), shagged all the balls that Hayden valiantly tried to pitch over the ginormously tall fence that separated the bleachers from the field, and even spoke to him in sign language because he had taken four years of American Sign Language in high school.  Ya, sometimes membership has its rewards.  Our kids were feelin' the love and basking in the sunshine of friendship.

So in the end Challenger Baseball for me was a joy-filled paradox.  There's no arguing that it IS a team for kids with special needs.  Neuro Typicals, or Physical Typicals need not apply.  But the amazing love and camaraderie that come with this league, to me, far out weighed the philosophical downsides; the fact that parents for both teams to cheer for both sides, the fact that EVERY batter makes it on base because we don't keep track of strikes and balls, and the fact that every last at-bat is a "three run homer" whether it truly is or not, all added up to the definition of fun if you go by the looks on all our kids' faces.  So I learned that there are many typical moments in the midst of living a decidedly UNtypical life.  I mean, what's parenting about if it's not about brimming with pride when your child is doing the very best he/she can?  Sometimes 150% effort and joyful exuberance bust through the boundaries of semantics and the word inclusion is relegated to just a word.

If you've somehow made it to the end of this post, reward yourself and watch this video montage of  the last Challenger Baseball game with the JUCO World Series players. Enjoy:

http://www.gjsentinel.com/news/videos/juco-players-help-special-needs-kids/

PS.  I'm trying to post some photos of my daughter too, but I'm having mondo-technical difficulties right now getting them to load.  So bear with me, as soon as JUCO's over, my I.T. dept will be right on it.....I'm sure of it.

Saturday, May 19, 2012

Home Schooling: WAY smarter than the system

I ran across this article today and I just couldn't pass it up.  Okay, in the spirit of full disclosure, this article was dumped in my cyber-lap via my news feed on Facebook (yes, I'm one of those relics who still uses FB) and me being me (remember me not being able to recognize an original thought if it hit me upside the head?), I couldn't resist using for a topic for a blog post.  In my defense however, I would like to say that this is something I've wanted to talk about for quite awhile, it's just I didn't have a visual aid to go along with it.  So today's topic is:  I wish Michael Weinstein Would Have Been Home Schooled.

Here's the article:  http://www.goldenhatfoundation.org/about-us/blog/125-golden-hat-foundation-blog-70211.  Meet me back here after you've read it.

Okay, so here's my premise (which may or may not turn into premises if I decide to ramble)  1) "Just because I don't talk doesn't mean I don't have anything to say", or to embellish that, "Just because I don't talk doesn't mean there's nothing going on inside the computation center of my brain".   Of course this isn't my phrase, I heard it a long time ago and it really resonated with me.  I probably owe the person who coined it a gazillion dollars because I quote it all the time.   Side note: I heard this LONG before being able to wrap my brain around the fact that one of our kids would essentially be NON-verbal and the other child would have profound issues with how to USE language in an understandable way.  I'm a communicator by profession and I LOVE words the way my daughter loves chocolate, so how could "I" have a non verbal child??  Because God had some things for me to learn, that's how.  But I digress.  So this phrase, "Just because I don't talk doesn't mean I don't have anything to say" is what I would like to carve into the foreheads of every public school teacher and every special ed teacher in the business.

Now that we're entering our SEVENTH year of homeschooling (holy home school desks, denim jumpers, and homemade laundry soap Batman, time sure flies!), I feel I can speak to this a little, because, well like I said, I've got a couple of kids who have some "issues" with verbal language.  And ya know what, their issues with verbal language don't mean BUBKUS when it comes to their core intelligences.  And I don't care what standardized tools you use or what nationally recognized tests you throw at a student, just because he/she doesn't have the ability to speak, doesn't mean they have cognitive disabilities.....or as the medical and educational "professionals" like to say, "mental retardation".  And one of our children has mental retardation, I can also speak to that too.  Another time.

So here's this young Michael Weinstein kid growing up with hideous labels being hurled at him from ALL directions since toddler hood, all because he couldn't "prove" that he WASN'T mentally retarded.  Ah, but now we rejoice because about 15 minutes ago, Michael, for whatever DEVELOPMENTAL reason (another sorely lacking concept in the mass institutionalization that is government run education) was able to start proving his intellectual worth.  All the while Michael's been brilliant, he's been expressing his creativity and imagination in no doubt countless ways that his family and friends could see, but just not in the narrow, hyper-focused way that the "professional educators" were trained to see.  So they were functionally blind when it came to Michael's giftedness and the giftedness of thousands and thousands of others just like him (think Sharissa Joy Kochmeister and Carly Fleischmann to name but two other highly intelligent people who happen to be non verbal).  In the meantime their psyches have been battered and bruised and the stress they've been under since their toddler days would kill most modern day warriors.  They ARE warriors.  And I'm so thrilled for them that they've survived and I'm very happy for Michael that he's finally receiving some recognition for his innate uniqueness and creativity.  But I just think it could have come at a lesser cost.

Don't get me wrong here:  I am in NO WAY impugning Michael's parents for not home schooling him.  But what I am saying brings me to my second point and that is 2) The mass education model is lousy for discovering a student's strengths and talents.  I've come to appreciate that the learning at home student doesn't have anything to "prove" to the system, unlike the public/private school model.  And remember, I came into homeschooling as the biggest anti-home schooler around.  For an analogy, go read how a brilliant and highly respected Jew named Saul met his match on the road to Damascus in the book of Acts in the New Testament of the Bible.  While I was no where near as smart or highly regarded as Paul, I was every bit as passionate about NOT home schooling as Paul was about killing every Christian he could sniff out within a ten mile radius.  The point is, that while learning at home my kids don't have to "prove" anything to me.  The premise from which we work is that both kids are very intelligent in their own way and we are constantly looking for ways to give them opportunities to shine.  And no, this isn't just coming a lovey-dovey mom who thinks her kids hang the moon.  I live with them, I know the truth!  For crying out loud I've got a 12 year old daughter who just the other day (and I'm not exaggerating) used "Aristotle's 4 ways of investigating something new" (I think that was the title) to refute Darwinsim, but she can't spell the word "very".  So ya, I'm keenly aware of her strengths and weaknesses, but in the meantime I'm not going to slap a label of "Spelling Failure" on her so that weight can drag her to hell. 

Because we have a much broader definition for intelligence and are constantly providing them real life opportunities to show what they know,  our home education environment is diametrically opposed to that of the public school.  I'm sorry Michael Weinstein didn't have that opportunity and it strengthens my conviction that if you want your kids to really discover how they can rock this world and make it a better place, keep them away from public school

Faster than you can say trisomy 21, everything changes

I won't pretend to have the corner of the market on perspective.  In fact most of the time my perspective is pretty off-base, usually focused squarely on moi.  But yesterday morning I was jolted back to reality when I heard the tragic news that one of "our" kids with Down syndrome had passed away in his sleep overnight.  At the ripe old age of 12.  I felt punched in the gut as I heard the news from a friend via Facebook and I don't even know the family.  But because we shared common connections in the Los Angeles area and because the disability community truly is a pretty small world in general, I felt a tremendous loss.  I still feel it.  A hollowness inside.  Like I can't quite catch my breath. 12 years old.  A precious little guy with an infectious smile and his whole life ahead of him.  No doubt he had brought his family countless moments of joy, laughter, and deep, deep love that mere words, at least my words, fail to adequately describe.  If you're fortunate enough to either have a child with Down syndrome, or you have a sibling or a close relative with Down syndrome, you know what I'm talking about.  (At the risk of sounding elitist, our kids with Trisomy 21 are different in the most amazing and blessed ways.)  Even though I didn't have the privilege of knowing his mom and dad personally, I'm going to guess that this boy, like every other baby with Down syndrome, was single handedly responsible for rearranging their priorities in life at the cellular level from the moment he was born.  And I have no doubt that since that day their definition of love has deepened in ways they couldn't have imagined.  Now their incomprehensibly tough mission will be to carry on his legacy without him.  These people I've never met, but with whom I have shared a pretty special path in life, will now never be far from my thoughts.  My heart will probably always ache when I think of their precious gift who left them and us far too soon.  Dance with Jesus sweet Tim.  You will never be forgotten.
http://www.clubtwentyone.org/Tim01.asp


Fast forward 12 hours later on the same day and we were once again confronted with how life can change in an instant.  My husband and son were getting ready to run a quick errand to the grocery store so I was brushing Hayden's hair in the tv room (#445 on his list of my son's all time favorite activities) when my mother-in-law came into the rec room and said that one of the neighbors had come to the front door saying that there was a policeman out in the court with Hayden.  And we were like, "Um, not so much---he's right here watching the basketball game on tv".  So Jeff went out to check it out and at almost the same time, my gut said, "It's Max.  Go outside".  So out I went, and sure enough, it was a little boy named Max, who also happens to have Down syndrome and whom my daughter and I had met at the park around the corner about a month ago.  It turns out Max and his mom live really close to the park too and our kids are in the same Challenger baseball league.  And as God would have it, our kids played against his team the other night and his mother and I were able to kvetch and get caught up with each other after the game, so Max was fresh in my mind and I could still feel the sweet hug that he had given me. (Let's call "fate" what it is:  God given moments in time where seemingly pointless events happen that, when later considered, were really opportunities where God was trying to show us who He is:  The Creator who desires more than anything to have a relationship with us and He'll use all sorts of crazy circumstances to bring that about.)  So is it just fate that you're here wasting your precious time reading this?  Hmmmm

It turns out Max's mom had stepped out for a short while last night and left his older brother in charge.  Nothing new there, the older brother had probably watched Max a hundred times before.  Only this time Older Brother fell asleep on the couch and out the door went Max.  It just so happens the local middle school down the street was letting out from a dance and Max joined the kids who were walking home in the breezy and cool not-quite-twilight evening. Max chose his walking companion well because he followed a boy who lives in our court and who happens to be very sweet and kind.  When the neighbor boy got home he told his mom that a boy who couldn't talk had followed him home and they immediately called the police, and he had just arrived when my husband and I walked out the door.  We immediately recognized Max and Max immediately gave us both hugs and then I called Maria and left her a message.  She called back within three minutes and was out of her mind with shock and worry, but we reassured her that everything was just fine and that Max was great-he wasn't flustered or agitated at all.  With the help of the wonderful policeman, who went to Max's house and picked up his big brother and then loaded Max in the back of the police car with him and took the boys home where he waited for Max's mom to get home, the family was reunited within 30 minutes.   I think we all had enough adrenaline in our systems to light up L.A. and the Grand Valley or a week or so.

We who are fortunate enough to have kids who live outside the highly overrated bell-curve-of life share a life force that is hard to describe.  We unite in joy with each milestone met and mastered, no matter how insignificant the world sees it, and across the country every single parent who has a child on the autism spectrum holds his/her breath until a missing child with autism is found.  It doesn't matter that we've never met that child or his/her family or that they live thousands of miles away.  We KNOW what it's like to have a child who doesn't compute safety, consequences or directions, so we lie awake praying over them until they're safely back home.  Likewise, we can't control the tears when we hear of the incredible loss our friends-whom-we've- never-met are suffering when a child dies.  We instinctively internalize the devastation and weep without shame for those who will have to spend the rest of their lives without the light of their lives.  We hug our babies (who are now almost as tall as us), a little tighter, gaze into their sweet eyes and memorize each freckle, each upturn of their mouth that quickly becomes an impish grin, and we hold their hands a few seconds longer than necessary so we will never forget what it feels like to have their fingers intertwined with ours.


And every once in awhile we are blessed to be part of a miracle of helping someone find home.

Sunday, May 13, 2012

My All Star Moms List

Today I saw a headline titled "Forbes Magazine All Star Moms List", and since I wouldn't know an original idea if it slapped me upside my head (if you read my last post you know this, or if you know me at all you already know this to be true), I thought, "what a great idea for a blog, I'm totally stealing that".  So here I go again.......

But before I get to that I just want to give a shout out to a variety of moms I know and tell you why you're on my mind everyday, not just on this made-up holiday:

*To the many moms I know who've had to give their babies back to heaven, this is your day too.  I won't presume to know the depth of your pain, but I know that your babies and children were called into your life for a reason and for reasons none of us will probably ever understand here on earth, they've been called back to be with their Creator.  I don't know what you're supposed to learn through all this but I do know that them being called back had NOTHING whatsoever to do with the level or depth of your love or how "good" of a parent you were.  God isn't punishing you.  He feels the depth of your pain and wants you to go to Him with everything you feel everyday; the good, the bad and especially the ugly.  Despite the fact you've had to bury your hopes and dreams along with your child, God still has lots more in life for you to experience.  Most of all He has healing and restoration in store for you.  I hope you feel loved today because you are. 

*To my many friends who have, or are, building their families through the adoption process, this is your day too!  Just because your child didn't grow inside you doesn't lessen your love or devotion to your child, and conversely nor are your feelings of unfathomable pain and grief any less if you've ever "lost" a child through the unpredictable and often unstable child welfare system, just because you're an adoptive family.  Pain is pain and so often the deck is stacked completely against the adoptive family, no matter how qualified or wonderful they are, or for how long they've had their baby or child.  The babies and children you've had in your care, if only for hours, will always be with you (and me).  Today is for us too.  We may only have one, two, three, or however many children physically living with us, but the ones whom we thought were going to be forever ours but are now living elsewhere will always be with us.

*To my friends here with me on the "Good Ship Disability", this is an "interesting" day to say the least!  I am quite honestly VERY conflicted about this whole well-intentioned-but-long-since-hijacked-by-the-greeting-card-and-flower-growers-associations "holiday".  Many of us sunning ourselves on the deck of the disability ship have kids who have NO concept of what "Mother's Day" is....and they may never, ever (shock and dismay ring out from the people leaning over the railings over yonder on the We Are Perfectly Normal ship, because they can not fathom NOT being lauded and appreciated on their "special day").  I know this whole Mother's Day thing is HUGE here in the U.S. but quite frankly, I really don't care that our oldest child will probably never have the cognitive ability to engage with the hoopla.  I'm happy to be a mom.  I'm THRILLED to be on my son's journey WITH him every day of the year and I don't need him to throw a party for me to prove that he "gets" anything.  He "gets" love, devotion, laughter, hugs and joy everyday.  Our daughter is a little more cognizant of the day, but I don't think she gets why there is a day.  She doesn't get the whole mass-manipulation thing.  Right there with ya, Sweet Potato, the emotional trappings of the day don't make much sense to me either.  I know she loves me in the best way she can.

*To my friends here on the Good Ship Disability who found themselves here long after being aboard the We're Perfectly Normal (and We Like It Just Fine) ship because of an accident, a trauma or some other crazy curve ball that life threw you (or at you, as it may seem) and your family, I know, no I FEEL every day from you that this is NOT the Mother's Day you would have EVER planned for yourself or the rest of your family.  Part of me is sorry that you're here on board with the rest of us because your sadness and grief is palpable, and I hurt because you hurt.  I'm sorry about that car accident that's responsible for your teenager who will never walk again, or for the permanent damage your child suffered due to vaccinations (so did our son by the way), I'm sorry your daughter had a near-drowning accident, but the circumstances don't change the fact that you're still a fantastic mom and your child still has an amazing mission to accomplish with you as their mom. 

Mother's Day, and lots of other days here on the Good Ship Disability, are a little sweeter in countless ways and we appreciate a lot of the "little things" in life that probably go unnoticed aboard the We're Perfectly Normal ship.  I know you're not here by your choice but I'm glad you're here none the less. No matter what the world says (or your immediate family), your child isn't broken, and with each others help we can lift each other up to be the best moms we can be with the information we have.  And isn't that all we can ask for on any day?  So happy "You Day".....everyday!!

Thursday, May 10, 2012

Autism parents stealing blog ideas while throwing Molotov cocktails at each other

I read a tweet this morning asking parents of kids with Autism (which I will from now on refer to as "autism parents" because it's way less wordy and I'll give you, the reader, the benefit of the doubt that you'll know I'm not implying that it's autistic parents I'm referring to (and yes I know I just ended a sentence with a preposition, but I can either choose to be grammatically correct, ala "Eats, Shoots & Leaves" or I can write how 99.99% of people speak.  I'm choosing my battles)).  ANYWAY, this person was asking people what meds they use for their kids who have asd's (autism spectrum disorders) and why they like them.  And I thought, "Perfect blog topic!  I'll totally highjack that woman's train of thought and take it for a big ol' ride!!" At least I admit my thievery.  Ya know, the whole honor-among-thieves thing.

If you ever want to throw a Molotov Cocktail into a group of autism parents at your next cocktail party (cause you know, us autism parents are a MAINSTAY on the party circuit), just throw out the whole "If you knew anything about autism you would totally medicate your child", or "You're going to hell in a hand basket if you give your child drugs".  I mean seriously, in the disability world we just kill each other over this stuff which is quite frankly, hilarious to watch. Did I just say that?  No, I mean it's just tragic, so sad to see parents fight each other. Seriously?  If you get caught up in that battle you deserve what you get.  Hope you're good at emotional first-aid, cause you're gonna need it.

Which is why I think this topic is perfect for this blog (and I use that term loosely while apologizing to real live bloggers out there who actually know HOW to write and do bloggy things, but who accidentally found my little corner of the blogosphere.  If you're still reading this, go wash your eyes out and take two aspirin and then go find one of those brilliant "mommy bloggers" and pretend you never saw this train wreck).  As a total aside here (we're so far off the beaten path, we'll never get back), did you know the reason no one reads this blog is that apparently readership of "home school blogs" is totally passe now. Done.  Over.  No one's reading them anymore.  Who knew? Okay, well maybe some people are reading them, ya know the good ones that are actually worth reading (e.g. every other one but this one).  But seriously, readership is down because it turns out apparently, that lots of home schoolers are actually doing the educating of the children in their homes instead of reading all about it all day everyday.  And isn't that just like me to be TOTALLY late on a trend?  I wear clothes until they start to fall off my body or begin to show too much of my total awesomeness to strangers, and I didn't even catch on to the whole the-24-tv-show-is-visual-crack until it had been on for like seven years.  And then of course, me being all OCD, I had to spend like the next six months watching it on DVD and pretty much carried on complete conversations in 24-ese with everyone for months.  Still do in fact.  What you mean it's been cancelled?  (I just thought Keifer-my-other-husband was doing his whole Jack Bauer thing and was able to be on two network shows at once).  ANYWAY, geesh, what is it with me today?  I have the attention span of a gnat on crack.  But there's a reason for that......get to it in a minute.

SO, that whole tweet got me to thinking about the do-I-medicate-for-autism-behaviors-or-not? question.  It's a super hot topic for me but I wish it wasn't. I wish I could say I've got all the internal issues all resolved and I'm comin' down from the mountain to share it all with you.  Ta Da!!  Come to the Mighty Gigi Of Oz and I will tell you sumpin!!  But the truth of the matter is that it's a hot topic for me today because yesterday, for the first time in quite awhile, my daughter got into a loop, which turned into a full blown family meltdown with me wishing I could die in the middle of it three times.  It was a loop she couldn't get out no matter how much talking, encouraging, redirecting we did with her (and we no doubt used too many words but there comes a point (which we nearly always miss with her) of no return and you can't get her to leave you alone so you can catch your breathe.  It's a NASTY soup I don't recommend trying.  SO, after I had multiple meltdowns on top of my daughter's uncontrollable swirling, I finally left the house for a few hours, presumably to go look for another Mother Of The Year tiara since I had stomped mine to smithereens.  Target was all sold out, ya know this being Mother's Day week and all.  SIGH.

The whole episode was very reminiscent of a period of time a few years ago when we started seeing things that went way beyond anything I had ever read about "typical" autism-like behaviors (most kids with autism have rigidity issues, emotion regulation and difficulties in controlling themselves at times).  I won't get into the details of the hundreds of hours of uncontrollable raging, arguments for absolutely NO reason, and hysteria that seemed to bubble up out of nowhere and refused to go anywhere for DAYS.  It was ugly and it was almost non-stop.  Up until that point as faithful vegetarian-tree-hugging-Jesus-loving-natural-living-freaks we had done everything in our power to stay away from drugs.  I barely took aspirin for headaches.  I felt like a failure that all the herbal concoctions, vitamins and oils we were using were not touching these outbursts that were enveloping our family (not just "trying"--we faithfully used tried and true herbs and tinctures that lots of kids find almost-instant relief with).  Here we were a family that ate whole foods (nothing out of a box, no chemicals or dyes, except for the occasional Costco fruit smoothie, lots of fresh fruits, and hello, we're vegetarians, so LOTS of veggies!), we made sure our kids were very physically active (we lived less than three miles from the beach in the beautiful South Bay area of Los Angeles and were bathed in sunshine 24/7), and we home schooled both our kids (our daughter in particular), to keep her days manageable and quiet.  And yet we were living in an out of control inferno.

In the end (or the beginning I suppose, depending on how you look at it), it was either try the pharma-thing or we were going to admit her to a children's psych ward.  It was that bad.  Instead we landed in the emergency room one Sunday and were prescribed something to put out the big flames.  Six long weeks later we had our first meeting with a child psychiatrist who took less than 10 seconds to quietly ask us if we had ever heard of Asperger's syndrome.  "Ya think? Uh, ya, we've got that base covered.....it's all this other stuff that is completely destroying us!"  We were absolutely lost.  I said I was ready try anything but I was openly hoping that the drugs would fail, that we would find the "real" answer elsewhere, so I wouldn't have to feel like I failed my child by turning to psychiatric meds.  Because like SO many other parents in the U.S. I believed that putting your child on a drug equaled failure.  I was just copping out, not wanting to deal with the REAL cause of her out of control behaviors (no doubt my ______ parenting).  I just wanted to put a band-aid on everything and pretend it didn't exist.  I can come up with LOTS more self recriminating things I told myself (and still do at times) but I think you get the point.  I think I thought that because LOTS of high profile child rearing experts and celebrities tell us everyday that we're failing our children when we turn to Big Pharma. For ANY thing.

So I'm here to tell you......If you're doing the whole Gluten Free/Casein Free, bio-medical route, and you have a DAN! doctor that you just love, and your child does great with Valerian, B12, melatonin, liquid magnesium, etc....you are an awesome parent!  Good on you!!  You're on a path of finding a viable solutions to the various autism-driven-behaviors and I wish you only the best!  I really do. I know lots of herbs and vitamins out there DO work for 99% of kids on the autism spectrum and will be happy to give you ideas if you need some.  We still use them.  If you choose to try one of the psychotropic meds out there, I say to you, Great job!!  You're an awesome parent!  No doubt you've come to this decision after countless hours of study and consulting with wise parents in your circle of friends and advisors.  You are most likely fastidiously monitoring your child's progress and changes very closely and you maintain a very healthy and frequent line of communication with your doctor.  You are aware that EVERY drug has side effects and you have chosen this path after careful consideration.

Relax.  Breathe. Know that the path you're on is yours and yours alone and you've come to be on this path after careful research and study.  If you're a Christian Believer like me, no doubt you've spent countless hours crying out to God for His wisdom, for His voice to be heard above the cacophony of tantrums and out of control behaviors, and you've come to your decision because you feel it's best for now.  We're not on an easy road, we parents of kids on the autism spectrum.  Rarely are there big signs and clearly marked detours for us to follow.  Most of the people we share this parenting journey with are completely ignorant as to the challenges we face everyday. We owe it to ourselves to trust our instincts and intuitions to get us through the decisions we have to make today and to give our fellow autism parents enough credit that they're doing their best too.

Tuesday, May 1, 2012

Juggling On Planet Sensory

I've always wondered what it would look like to run a nanny cam on my life.....what am I, INSANE?  NO ONE in their right mind (which I have never advertised to own) wants one of those wretched things.  But if I DID jump off the deep end one day and you were watching it, it would show among other things, my less than Martha-Stewart-clean counter tops, how I seem to go from room to room with great purpose and come out the other side scratching my head wondering why it is I went in the room to begin with, and the frequent interruptions when I try to spend time with one child doing a specific activity and how the other one will INEVITABLY need me right that second Or-They-Will-Spontaneously-Combust.  Am I losing the battle of guiding my kids through THE JOY OF LEARNING?  Are we having FUN YET???  Oy. Let's NOT watch that tape okay??

No, what I'm really talking about is what our life would look like to the newcomer to Planet Sensory. Maybe you're starting to figure out that your child moves through the world with a different motor, a different speed if you will, and maybe he/she looks at things through a different lens.  I'll just share how we do things, maybe something will strike you as useable.

First off, my two kids are polarily opposite in many ways, but at the same time they have very similar "special needs".  At any given moment the invisible Nanny Cam would show one child bouncing, pushing, rolling back and forth on his head, or in his bedroom lying on his bed completely still, while the other one is either talking non-stop at me (or my husband, if he's home), organizing her 448 plastic dog figurines or, if it's later in the afternoon, out trolling the neighborhood for friends to play with, which is to say that both kids are sensory seekers. 

It's a crazy juggling act and I don't think on any given day I ever achieve that elusive state of Home Schooling Bliss (I'm pretty sure I lost the map to that place awhile back)......I just try to make sure that both kids get their major sensory needs met throughout the day, along with what most people think of as "academics".

The very first thing that I MUST beat into your head as the newcomer to this unpredictable and sometimes befuddling life on Planet Sensory (you wore a helmet, right?), is that our learning time is NOT defined by the clock!  For instance, my son and I may do his reading words during breakfast one day or before bed time another day.  We sometimes read books and work on vocabulary outside on the mini-tramp or sitting on my bed after lunch.  It depends on how HE'S doing; if he's firing on "all cylinders" that day, if his overall tone is super low, so he'll need some stimulation to activate his system or does he seem okay?  He has Trisomy 21, a genetic condition which has an underlying low muscle tone component to it, but aside from that he was born profoundly deaf and has major global developmental delays due to an infant seizure disorder, so some days he needs LOTS of big muscle input like swinging, bouncing on a big exercise ball, pushing, pulling and doing what we call "Big Time Wrestling" with Dad.  I consider all of that movement stuff foundational to all other learning endeavors throughout the day.

Conversely our daughter "looks" normal (remember, "normal" is just a setting on a washing machine) but has more than her share of "invisible" challenges (mental, emotional and cognitive) that threaten to rock her boat everyday.  She was born with full blown sensory integration dysfunction (which was diagnosed at a few weeks old) and her sensory stuff comes out in not liking to be touched (tactile defensiveness), not liking loud or unexpected noises and certain pitches (unless she's making the loud noises, and then it's all fine), not being able to able to listen to anything for very long without getting overwhelmed (think of all the listening involved in the learning process), and lastly, she's a kinesthetic learner with a capital K, so she needs to move A LOT.  In fact if you were watching the pretend Nanny Cam last week you would have seen me reading Shakespeare to her while she was twitching ALL OVER THE BED.  And she was actually listening!  Usually I offer a ball for her to sit on, sometimes she likes to draw while I read to her, but not always.  But if you saw her the other day while I was reading to her you would have thought she was a marionette on a string, completely beholden to an invisible puppeteer.  I'm pretty used to it, but sometimes it drives me up a wall.  For her sensory stuff, I try to make sure that she gets LOTS of breaks throughout the day.  So I send her outside to run, ride her bike, practice her rollerblading and skateboarding, and to play for ten-twenty minutes at a time.  When I'm really on my "game" I try to make sure she has squishy stuff she can play with while we're reading or watching videos.  And now that she's older (12), she's pretty good about making sure that she has her own supply of squishy balls, play dough, silly putty, slime, etc.....so she can calm herself when she needs to.

And here's the deal with the sensory activities I've mentioned and with those I haven't (there are books written on this stuff, so I'm not going to recreate the wheel in this post):  Sensory breaks/accomodations can't be scheduled.  I know we "organized" types want to schedule everything so it fits neatly in that Home Schooling Calendar that all the "cool moms" at the local co-op use, but that doesn't serve our kids AT ALL.  That type of rigidity and insistence on doing such-and-such activity at a certain time only leads to epic frustration, especially if your sensory child is having "one of those days".  Trust me, I have a master's degree in Epic Control Issues.  If your kid is having one of "those days" you've got to be flexible and make sure that their neurological driven need for sensory integration is met first before you try to force any "learning".

I think this is one of those posts that I'm not even sure has any value at all.  I may not even post it, but if I keep it on my blog it's because I want to stress that there is no ONE way to do this thing called home education, especially for kids who have sensory integration dysfunction.  Everyday is so much like "50 First Dates" it's ridiculous: everyday truly IS a brand new day and everyday I have to be willing to adapt my planned agenda to what they can actually handle.  I've learned the miserably hard way that forcing my plans on them is just horrendous for everyone involved and won't help remediate their sensory issues one bit.  Please don't try to teach your sensory kid out of a book or from a homeschool-blog-recipe.  Our kids are NOT one-size-fits-all and really, that's what keeps it interesting, at least for me.  I hope this helps you!

Sparkling At Two In The Morning

I think I have a Hello Kitty problem and they say that admitting you have a problem is the first step.......  Well, not exactly a Hello Kitty problem....I mean who could have a problem with Hello Kitty right?  Doesn't just thinking of Hello Kitty make you smile?  See?  Point made.  No, my problem is that I accidentally bought an extra Hello Kitty iPhone 4 cover on eBay at 2 in the morning overnight.  I was bidding on a glittery, rhinestony red one (I know, so cute right?  You're totally smiling now), but then I thought "Oh no, what if I don't win the glittery rhinestony red one, because, hello....EVERYONE is going to want that one, so I bid on a plain red one, thinking I probably would end up winning that one instead.  But then when I woke up this morning I realized I HAD won the glittery one so now I have TWO red Hello Kitty phone covers coming to me.  I know, you're all like, "What an awesome "problem" to have!  I wish I had that kind of problem, because right now my problem is that my 11 year old son thinks its the greatest thing to play the recorder through his nose (especially through WalMart) and my daughter refuses to wash out the electric-green dye from her hair and we have a big family reunion coming up in early June and she is going to mortify everyone more than she did two years ago at the last reunion when she had all those fake goth tattoos all over her arms that she totally convinced her little cousins were for real, which weren't of course, because hello.....she still sleeps in her My Little Pony sheets.  But ya, I want YOUR problem."

I can't get the image to load directly from eBay, because I was day dreaming about Donny Osmond and Keith Partridge when my dad was trying to teach me DOS, but here's the link so you can see for yourself what the plain red one looks like.  Oh, and it only cost me $3, so I'll just ask the same.  I'll even throw in free shipping from my end because I don't have to pay shipping.....paying it forward Hello Kitty style.

http://www.ebay.com/itm/NEW-Hello-Kitty-Lovely-Red-Hard-Case-Back-Cover-for-iPhone-4S-/280873438427?pt=PDA_Accessories&hash=item41655c8cdb

And I don't want to tease you, because I'll probably keep this one, but here's the glittery one:

http://www.ebay.com/itm/Hello-Kitty-Bling-Rhinestone-Red-Hard-Skin-Cover-Case-for-Apple-iPhone-4-4G-4S-/180873176815?pt=PDA_Accessories&hash=item2a1ce1a6ef

Can't you just feel the excitement?  This is what shopping at 2am brings you.......unbridled Hello Kitty joy.

Sunday, April 29, 2012

No bones about it, a home schooling "aha" moment

 
EWWWWW!!  Probably not the kind of image you're expecting to see from a vegetarian-tree-hugging-conservative-home-schooling blog I'm sure!  Well there's probably more weird stuff you'll see here too.......But anyway, to the point of this post:  These are beef bones, probably from some poor cow's leg (now how's he gonna win that limbo contest?).  I picked them up the other day at the dog food store for our two fur-people (one elderly but evil Cairn terrier, and one Newfoundland, who isn't evil but she's awfully goofy).  And the minute I put the bones on the counter the science class began:  What's this?,  what are the different parts?, where's the skin?, where's the tissue?, are they hollow?, why not?  what's in the middle of them?, what happens if a dog eats a bone from a diseased cow?, how long will it take the dogs to eat them?.....and so on.

Here's the picture I took this evening of one bone fresh from the freezer (in the foreground) and one of the bones that's been outside for a couple of days.  They started off the same size, so you can see that whoever had this bone was pretty busy! (probably Shalom, our Newfoundland, the other bone got buried almost immediately by the Cairn terrier and I haven't seen it today)


                                                    side by side comparison after a couple of days
This view shows how I got to teach my daughter about what the word "cross section" means.  We had talked about that word a couple of weeks ago when we were looking at a cross section drawing of Shakespeare's Globe Theater, but here we got to talk about how important cross section images are in science.  


                                                    The marrow before the Newf got a hold of it
And then we got to talk about what's in the middle of these bones and why the lady at the store recommended that we get shorter, rather than super long bones (because the marrow inside would be easier for them to access).  So then we got to talk about what marrow is, why it's important for animals and humans to have healthy marrow and what happens to us when our marrow isn't healthy.  And that led to a discussion about how to keep our bones and our bodies as healthy as possible. And that led us to talk about why we're always stressing "green light" foods in this house and why we eat so many leafy greens, grains (including lots of quinoa), legumes and fresh fruits. (the term "green light" foods comes from the book "Eat Healthy, Feel Great" by Dr. Sears, a book given to our daughter when she was two by Aunt Glynis and our daughter immediately memorized every food in EVERY category and began her tenure as the Food Police in our family---oy!!....but it's a GREAT book for kids of all ages, and it removes Mom or Dad from being The Food Nagger, which is a win-win!)


                                                                    marrow be gone!


So this whole experience got me thinking.......beef bones are DISGUSTING!!  Why would ANYONE eat the insides of another living thing and how did I EVER eat a hamburger??  EWWWW!!!  But that's probably for another blog under another title......

No, what I was really thinking was how grateful I am that we have time together in order to do this kind of stuff at the kitchen counter.  Now, could this have happened had my daughter been in public school (or private)?  Probably.  My dad was constantly teaching me stuff, every spare second he had with me (and had I paid attention I might have actually learned DOS or Fortran and gone on to become uber smart and disgustingly wealthy, but I digress).  But in our case, the chances that my daughter would have the capacity to be engaged with us during her "off time" from public school would be very slim due to the fact that most middle school kids now have upwards of four hours a night of homework and they just don't have the time or the inclination to stand around and talk about dead animals.

So I just wanted to encourage all of us (me included) that we have so many opportunities in our every day life to really engage in serious "academics".  We have this amazing gift called TIME....even if it's just a minute or two here and there (depending on your child's developmental stage and attention span), our kids ARE paying attention and this is the kind of stuff they're going to remember-not countless handouts and workbook worksheets.

P.S. And here's a real-life, real-time example: I'm sitting here finishing this post, my daughter just came into the living room and told my husband how in one of the Renaissance art books that we've been reading she saw a painting from a famous Renaissance painter that included a Cairn terrier in it. She couldn't name the painter, but she knows he's from the Renaissance and she knows it included a dog....what could be more important? (!! :)



Wednesday, April 25, 2012

You Can't Take Over My Life Greta...Oh Wait, Of COURSE You Can!

Yesterday around mid-morning I discovered my Yahoo! e-mail account had been hacked.  Great, just great.  Which means all seven of my contacts had been sent some message containing only a web address for some smarmy website showing monkey porn or 338 ways you can use ________ to make your man happy forever.  Whatever.  I'll leave that to someone who actually has the time + the energy + the $19.95+shipping/handling.  So I sent out the obligatory "I'm sorry I spammed you" e-mail and I thought everything was hunky-spunky.  Until I opened my Facebook app on my phone and discovered that Greta Van Sustern has taken over my life.  I hate it when she does that.  Instead of seeing my photo when I open any of my posts, there's a photo of Greta.  But get this, it's only visible to me on my phone.  When my husband opens his FB app to see my posts, my normal profile pic is there.  And from my laptop my normal profile pic is there.  So now I sound all paranoid because I'm the only one who can see Greta's picture.  (Kinda like when you're the only one who sees the apparition of Mother Mary in a mud puddle in the middle of downtown Buffalo, but none of your other friends see it and every time you walk by that puddle that day on your way to and from your college classes you swear the Great Mother is looking right through you.  Ya, I heard about that once a long time ago)

And how is this related to my Yahoo! account getting hacked?  I have no idea, because the two accounts weren't connected, and as of 1pm yesterday Mark Zuckerberg hadn't taken over Yahoo!, yet.  But now thanks to Greta's little prank, I've also changed my FB account password.  So there she is, Greta, staring back at me every time I look at my FB posts;  that wholesome, yet a little smug, I-know-how-cheese-is-made-and-you-don't Wisconsin glow about her.  Ya, I'm watching you Greta, I'm watching you.

Tuesday, April 24, 2012

Why I'll NEVER Read A Home Schooling Blog Again, or How Breeding Unicorns With Llamas Will Make The World A Better Place

This is a post for home schoolers. Man, woman, duck, I don't care. But if you don't home school, feel free to leave now because chances are you won't relate what I'm about to describe.  Trust me, you won't want to.

We've been homeschooling for seven years now (stab me with a fork, I can't believe it's been that long and I'm still upright.  I'm drooling on myself, but I'm upright).  I was having one of those days where I needed a little encouragement in the Is-there-a-snowball's-chance-in-Hades-that-my-children-are-going-to-turn-out-normal-despite-the-fact-they're-stuck-with-me-all-day? department.  (and by the way the only reason I even know how to spell Hades is that my daughter is super interested in Greek mythology right now so we're working our way through ALL the gods and goddesses....and what a twisted bunch they are!!  I think those Greeks were probably the first to experiment with magic mushrooms, if you get my drift)  My best friend Sue wasn't available to talk on the phone on that day when I needed some reassurance that I wasn't The Worst Home Schooling Parent Who EVER Lived because she too is a home schooling parent and she was probably too busy having one of those magical mother-daughter moments where her daughter was lovingly and graciously complying with all of her handwriting assignments and who was remembering everything she EVER learned in math (hahaha).  From where I sit my friend is doing an A #1 Super Duper, Give-That-Woman-A-Gold-Star-And-A-Barca-Lounger-In-Heaven medal.  The daughter she's currently homeschooling is her third child she's home educated.  Her first two are brilliant and wonderful, caring and generous human beings that, get this.........dress and look NORMAL.  They're hip and cool and they have BOAT LOADS of friends, many of whom were also home schooled, who are now also independent young adults, and who are also NORMAL.  (And it's actually ALL Sue's fault that we're even home schooling to begin with, but more on that in a later post).

There I was, left un-chaparoned in the cyber world.  With no alcohol.  Did you know there is a veritable cornucopia of home schooling blogs out there?  From Pagan Home Schoolers Who Worship Purple Geodes From Planet XIJ87678 to  Conservative Christians Who Are Sick Of The Government's Plot To Take Over The Life Of The American Family and everything in between.  I mean EVERY thing in between.  Our family?  Good luck putting us in a nice little box with a neat little bow on top, as we're a vegetarian-tree-hugging-Jesus-loving-politically-conservative-disability-friendly-multi-racial family who seems to move every three years whether we need it or not.  Confused?  You're not alone.  My side of the family has COMPLETELY given up on me, which really isn't a bad thing.  But I digress.

So there I am in cyber-land looking for some encouragement on the home schooling-front, hoping to limit my children's time in therapy to a decade or less when they come out of this.  Well that was mistake #1!  Don't read homeschooling blogs!!  Or drink heavily when you do.  Or steal your neighbor's Xanax if you do.  Or wear a blindfold if you do and only read every fifth word. Did you know there are people out there who actually GROW ALL of their own food (from seedlings and babies of course), make their own laundry detergent, plan their meals down to last 1/2 tsp of paprika a month in advance, perform for free in their communities for anyone who will listen on their handmade Brazilian fiddles they make during their daily quiet time (the youngest, "River" is only three, so he uses a butter knife to carve his baby fiddle), and they raise their own money by canning their own raspberry preserves and they recycle plastic bottles that they find while cleaning their nearby parks so they can all go to Rwanda every year to hand out shoes and toothbrushes to orphans.  And I don't drink because.......?  I seriously have no idea.  I had to go take a nap after reading that one.

Near as I can tell home schooling families can fall into one of three categories.  There's category #1, as mentioned above, the over achievers to the nine gazillionth degree on every level of family life.  We bless and release them, while we run screaming in the other direction looking for large amounts of alcohol and anti-depressants. In Category #2  are the families who believe they can do eduction a whole lot better in their own homes and they do it in a wide variety of ways; from having school desks lined up in rows and a flag hung at the front of the room,  to the families who are just as convicted that they can do school a lot better than the current model, but who do it in a more relaxed atmosphere, with kids studying in various places at various times throughout their homes, but whose homes are probably not going to be featured in House Beautiful anytime soon and whose spice cabinets would make Martha Stewart cringe.  Then there's Category #3, the one that scares all of our parents and extended families the most: the UNschoolers.  These are the ones who lean toward John Holt's humanistic view of education which simply states that if you leave children alone and don't hassle them with ANY kind of structure of ANY kind, they will turn out smarter than Guy Kawasaki,  richer than Warren Buffett and more interesting than the Most Interesting Man In The World, and you should just go out and get a hobby that would be useful to the world, like breeding unicorns with llamas while drinking large amounts of Dos Equis.

If you fall into category #1 congratulations, you are an AWESOME parent. Your children will only be the better for eating homegrown kale and mutton (little sweet innocent lambs, by the way, that used to answer to your children's whistles in your pretty-as-a-postcard-meadow).  Your Herculean efforts will pay off in spades and our world will be a better place on every level.  If you're in category #2, congratulations, you are an AWESOME parent!  Chances are good that your child can read by age 14, (beating the national average if you believe what you read in the papers, and of course you do because it's in PRINT for crying out loud, which is almost as good as Walter Cronkite himself speaking from beyond from the The Great News Desk In The Sky). He has a hobby that won't land him on the Crime Watch pages of your local paper, but whose room looks like an Albert Schweitzer experiment gone awry, so you know he's tracking with the normal American teenager.  And if you're in category #3, congratulations, you're an AWESOME parent, and I mean that sincerely.  Every kid learns differently, so kudos to you for being intuitive enough to know when to leave well enough alone.  You definitely have time to blog, write your own music and breed unicorns with llamas, therefor making the world a better place.

But what about the FOURTH category?  And you know who you are, you had to read this post just like you have to rubber-neck at accidents on the freeway....you're the ones who don't home school.  You think we're all nuts.  Or saints. Or that we just LOVE, LOVE, LOVE spending EVERY freakin' waking moment with our spawns and that everyday is just a mutual love fest of adoration.  What about you?  Congratulations, you are an awesome parent!  And that's the truth.  Not everyone is going to home school.  Not everyone can, for a whole variety of reasons.  I do think it's the best way to tap into every child's emotional and intellectual capacity but I'm not naive enough to think that everyone is going to board this train with me, and that's cool.  I don't judge you.  I don't have the time or the emotional energy to. Don't be offended, but I actually don't think about you a whole lot because I'm too busy trying to keep up with my offspring........but I would appreciate it if you would share your Xanax.  I heard it's freakin' awesome when you're breeding unicorns with llamas.

Thursday, April 19, 2012

Oh, So THIS Is Where You Go To Not Be A Parent Anymore

Just now I was cleaning up my in-box and I found a post that I had made to the L.A. Down syndrome group a few months ago.  I'm pasting it here so people who don't have kids with disabilities might get a taste of some of the mind-numbing conversations we as parents who do have kids with special needs have with mindless drones, who collect a paycheck whether they're actually helpful or not.  Most of the time it's not the stress of parenting a child with special needs that makes us want to stab people in the arm with shivs hidden under our sleeves, it's conversations like these:  This is from Oct. 27, 2011


So this afternoon we had our annual meeting w/ our regional center (Harbor, which covers the SouthBay).  I don't know why I didn't come here first a few days ago and ask for some tips and reminders with which to take to the meeting, but I totally spaced it.  Chalk it up to only have six brain cells left.

Some background:  Hayden is 13, but developmentally he operates somewhere between 2-4years of age (4 maybe stretching it, but hey, I'm entitled to a mother's optimism while wearing my rose-colored-glasses!!).  We currently receive 18 hours of respite/month (which we had to formally petition for last year) for which we are VERY grateful.  We are a homeschooling family and do not access therapeutic supports and services through the school system.  There are MAJOR safety concerns and issues with Hayden including him leaving the house (remember him escaping from our house when we lived dangerously close to Pac Coast Hwy???) and regularly turning on the hot water in the kitchen and bathroom sinks (his nerve receptors don't seem to alert him when his hands are under the steaming hot stream of water), which means line-of-sight-care.  Which means someone MUST be with him at ALL times.  Which means if I need to use the bathroom, I do it BEFORE I make his breakfast/lunch so WHEN (not if, when) he gets up in the middle of his meal to turn on the hot water (which he does compulsively), I'm right there to redirect him.

Okay, so from last year's IFSP to this year's, there weren't a whole lot of major changes in Hayden's life that would affect us accessing services (what services???) and supports (nonexistant so far) from HRC, but I really tried to emphasize from the get-go the safety part of our life and Hayden's inability to respond to stimuli, to our directions (often-not always).  So we start the meeting by going over the first couple of sections and my husband tries to ask our case mgr what can be done to help US bridge the gap between what a typical 13 year old behaves like/is capable of understanding, etc.....and what we go through with Hayden on a daily basis.  And the case worker says, "Can you be more specific?"...."Well", my husband adds, "We don't know exactly what to ask for, but we know we need help".....and the case worker says, "Can you be more specific?".  At this point my husband's face (natural red headed complexion-used to have bright red hair back in the day) goes completely beet red.  Danger Will!  Danger Will!!  Get the husband out of the room before we need a HAZMAT crew in here!!"  My husband tries to explain himself and then she talks OVER him and tells us how HRC can't provide any services whatsoever (good to know---can we just cut to the chase and ask for more respite hours now??), but that she could send us information on classes they have there at HRC (classes? first I've heard of any of that).  She tells us ALL about the "Y" and their various community programs but then when I suggest that we probably can't afford the membership she says, "Oh well, we can't pay for that".  At this point I should say I'm totally cool with that....I'm not expecting HRC to pay for the Y,  or therapeutic horseback riding, music therapy, or camps, or traditional therapies, or anything really.......we just want to KNOW what's out there (In the two plus years w/ HRC we've received NO information about ANYTHING).  About that time I said, we just heard about something yesterday called "The Friendship Circle"......have you heard of that??" I ask her.  "Oh yes", she replies, "Some parents find that organization really helpful, others not so much".  "Well, I just found out about this yesterday, quite by accident and we're kind of interested in that", I added, hoping that at this point she'll actually TAKE THE BAIT and explain a LITTLE about what this group does here in the South Bay.  She told us she thought it was in Redondo Beach.  End of conversation.  What more could we possibly want to know??  At this point my husband's head IS going to explode, so he excuses himself to the bathroom......or the nearest bar, I don't know.

But here's the thing we DID get from HRC:  they can't offer any technical assistance (she did ask us AGAIN if we could be more specific), but we can take CLASSES on HOW to teach our 13 year old son HOW to brush his teeth, HOW to dress himself, HOW to feed himself, etc......  ARE YOU KIDDING ME???  There has GOT to be a  hidden camera in this room, I just KNOW it!!  (I take notes officiously and I'm sure she's thinking I really want to know more about these informative classes......really I'm taking notes so I don't forget these little nuggets for this rant).  She also told us how we can take classes on safety so we can teach HIM about safety issues.  Wow, if someone would have just taught me about safety and locks then maybe I could have explained it to Hayden and he wouldn't have walked out the front door of our house....TWICE!!!  At one point, I turned to this woman and said, "Please know that I am not in any way being sarcastic, but in our family, we call this P A R E N T I N G......this is kind of what we do EVERY SINGLE DAY".  I mean aside from reading, writing and arithmetic, we actually DO teach SELF HELP skills every single flippin' day!!!

Then she tells us about ADULT services for ya know when Hayden turns 18....in FIVE YEARS.  I'm ALL for planning ahead.  I WILL plan ahead, but TODAY we're talking about THIS year's IFSP.  Support for this family THIS year, thank you very much.

Okay, here's the other part of the rant:  she told us that we couldn't get more respite than what we have and certainly not 24 hrs/month (is 24/month the "max" # of hours in the state of CA? I seem to remember that from last year)  unless both of us were working parents.  So my husband says (not trying make enemies here on the list, just pointing out some institutional incongruities), "So you mean to tell me that a two parent working household whose child goes to public school six or seven hours a day, and those parents spend three or fours a night with their child (assuming the parents work traditional 8am-5pm workdays) are eligible for 24 hours a month of respite, but someone who is ALWAYS with her child who has SIGNIFICANT special needs and disabilities is in essence "lucky" to have 18 hours a month?"......to which she started back peddling and saying how she doesn't make any decisions and she just passes it along to management, etc......Then she starts telling us about how HRC runs foster homes for kids under 18.....ya know, if it just gets to be "too much".  We could pick him up on the weekends.  ARE YOU KIDDING ME????  How about you take a little chunk out of that $3-5K/month it takes to house a child with a developmental disability in a "foster home" (not run through the county, she assured us) and give it to PARENTS to access more respite???

Okay, that's all I can remember for now.  My apologies to all of you for wasting your time with this whining rant!!.......I need to go meditate, medicate with Halloween candy, or find last night's episode of "The Middle".

Sunday, April 15, 2012

This One's For You Systems-Change Lady......

  This past week I posted on Facebook about about a comment that a speaker made at a meeting that we had just attended that night.  The meeting topic was systems change as it relates to the disability community and at some point the subject of social media came up and she made the (what she thought was) an off-hand comment about not needing to be on Facebook because she had, "plenty of real friends and I don't need to go looking for new ones in cyberspace".  Wow.  That was a mouthful and my husband and I were more than a little stunned as we sat there in our seats.  And me being me, I had to come right home and write about it.

(here it is:  (Thurs.p.m. April 12)  Just went to a public policy mtng in Our Town (public policy as it effects people w/ disabilities), where the person leading it, a major player in state-level systems change, disparaged and impugned social media, saying she has plenty of friends in real life and she doesn't need to look for new ones here on FB. Turns out she's active here in FB land and had more than 350 "friends" (wonder how many are "real"). Dear Systems Change Lady, It doesn't matter what you think about it, social media IS an unprecedented phenomenon that has repeatedly proven itself to be a major player on the WORLD stage and lives HAVE been changed and SAVED. In the world of disability, social media is helping forge authentic and intimate friendships and it is creating dynamic mentoring relationships in which our children's lives are enriched and on really good days, our sanity as parents is restored. Thank you. That is all.)

Okay, so that was my post and I received a lot of positive feedback as a result, which was really nice.  But it got me thinking about this whole "real friendships in the cyber world" thing and I wanted to share this AMAZING story.  A true story......  So this is for you Systems-Change Lady-who-doesn't-think-she-has-the room/time-in-her-life-to-go-"hunting for cyber-friends":  

A couple of years ago I was having a rough go of it with one of our kids (ya know, autism behaviors aren't all they're cracked up to be).  So I found some group on Facebook and put out a feeler to find another mom who might want to chat with me sometime (think, "help, I need a friend, NOW!!").  A woman answered my cry for help and we started instant messaging with one another and right away we found out that we had quite a few things in common, not the least of which was that one of our kids was on the autism spectrum, but the most important was that both of us were Believers and loved the Lord.  And so began a wonderful friendship that grew and grew.  We instant messaged one another, shared photos of our kids, shared our home schooling philosophies and strategies, our parenting strategies and values, etc.., etc.....and we laughed and joked with each other ALOT.  We both love to and NEED to laugh ALOT to keep our sanity!  Pretty soon I was telling her about my wonderful and AMAZING friend who lives up in the Northwest, and how it sounded like they probably had quite a bit in common too, including the fact that they both had older children in their twenties and they both had experience with neuro-development theory and practices, and last but not least,  all three of us also have kids with Down syndrome.   So I hooked up my new friend "L" with my amazing link-to-sanity-friend "S" via FB (using initials here in a vain attempt to protect the innocents) and before long they too were communicating with one another.  Now, fast-forward about a year.  My friend L had been sharing with me that she was completely "over" living in the state where she had been living with her family for years and years.  She was geographically and socially isolated, they didn't know any other homeschooling families, they didn't have any authentic "go to" friends in the community and she was really, really tired of being alone.  So they wanted a change in geography for everyone's sanity-sake.

  So I began to pray over her situation and intercede on her behalf and I just asked the Lord what HE wanted for their family's life and my friend S did the same thing.  Before long L and I were were having conversations about where they "could" live, and what, if any, were the geographic restrictions for them to relocate.  Turns out her husband was completely free to move about the country to anywhere they pleased.  So me, being me....I said, "Well then, you're moving to Tacoma, WA so you can be near S!! I know you've never met her....you haven't even met me!, but you'll LOVE her....you two will hit it off and you'll have at least one friend and your kids will LOVE S's daughter and her older kids....It'll be great!"  And you know what??  S and I banded together and combed Craigslist and Zillow for possible houses and neighborhoods for them, S went out on scouting trips to possible houses and you know what? Last September 19th L's family pulled up with a moving truck and a trailer to within three miles of S's house to a house they had never seen in person and S's husband and a group of guys from their church were there to help them unpack.  

In December I had to make the devastatingly sad journey "home" to the NW to attend the funeral of my beloved nephew Jason.  Within two hours of getting off the plane, S, L & I were sitting in an Applebee's restaurant, all three of us in the same room for the FIRST TIME EVER and it was like we had known each other FOREVER.  The occasion for my arrival was of course horrible, and we all acknowledged that.  They were there for me in the sadness and grief, but before long the jokes were flyin', and we were laughing and carrying on together like it was as natural as breathing.  The only reason we even left the restaurant was that L's kids were getting worried about dinner (like, was anyone going to be there to make it?!).....we had held her captive ALL afternoon after all!!  Now fast forward a few months.......Last Wednesday afternoon I called S to check in with her for the day and she had four of L's kids at her house and they were making a birthday cake for L while she was out running errands with a couple of their other kids before they all headed out of town for L's birthday the next day.  It was going to be a big surprise for L and all the kids at S's house was so excited.  So when L came by to pick up her kids there was a surprise party waiting for her........and I couldn't be happier for her........Well I guess it would be pretty amazing to actually BE THERE in person to share in the party, but being on the other end of the phone was the next best thing.........And that feels pretty real to me.

Clearing The Air

  In recent weeks I've been posting more on Facebook, because there's been a lot more going on in our lives and there's actually something TO post, and I've probably posted it to FB rather than here because FB is like a highway and people will stop and stare no matter what's on the side of the road.  I'm not self-indulgent enough to think that people are actually reading my stuff because they "choose" to per se, it's just that well, that highway analogy pretty much says it all, my stuff is there and it apparently doesn't take any effort for people in my stream to read it, contrasted to the intentional effort it takes to go to some one's blog or website.  So anyway, people ARE reading my posts, which in and of itself is a good thing because, well who doesn't WANT attention?  I won't sit here and pretend that I don't write for an audience.  I do. I also write to get stuff out of my head (it's already plenty crowded there with all the other conversations and voices) and I write because it just feels GREAT.  I just LOVE, LOVE, LOVE the feeling of putting words to my thoughts and feelings and experiences, and to that end, I don't care if anyone ever reads any of it.

 But at least one person is reading the posts and at least one person (maybe that same person) has their panties in a wad and that's why this post is here. I'm starting to get more comments, which is cool, especially the positive comments!  But of course, that's not what this entry is about, this is about the negative comments which are trickling in.  Apparently some are reading my entries and are seeing things that are not there, like negative comparisons of where we used to live (in the second largest city in U.S.) to where we are now (NOT a big city), with the "where we are now" place not faring so well.

  First and foremost, thanks for reading my stuff!!  I'm just happy that one person has read ONE thing I've written (aside from my husband who also faithfully listened to me every morning during drive-time....he's a good guy). That being said, it's no where near the truth that I have in any way cast a negative light on our current town, which I've have named Our Town in my posts.  I'll get back to that point in a minute, but I want to back up and explain some basic foundational writing tools I use. It's very common to compare and contrast one thing to another.  It makes thing more "real" for the reader, more relate able and a writer can do that without disparaging or insulting one thing or the other, and I think I've done a pretty good job of that.  Are there differences between where we are now from the ginormous city from which we just moved?  Of course!!  Does that mean that I hate this place?  NO, it means it's DIFFERENT.  I have pointed out just a few of the differences, like the lack of Yogurtlands and the fact that I should just prepare myself for missing Indian restaurants and take-out food because there isn't a real big Indian population here.  Does that mean that I think less of where we are now?  No, it means I'm "noticing".  That's what writers do.  They notice stuff and write it down, not totally unlike a painter who paints what he sees in front of him.  And because I really love to write, get this next point because it's important:  I'm writing down the differences. If I wanted to complain about anything, believe me, I've got the words within me to do it.  I'm NOT complaining about our new town because, and here's another really important point:  I have NOTHING TO COMPLAIN ABOUT.  I am truly happy to be here, and that's probably because I'm truly happy to be ANYWHERE.  It's a heart-set.  A few years back before most of my life passed me by, I decided to jump on the Grown Up Train and be content no matter what my circumstances are; wealthy or poor, tall or short, living in a mansion or not, living at the beach or in the desert.  Since doing that (and making the daily choice to stay on that train) my life has busted out with more joy, more contentment and get this, more PEACE.  Yay for me!  You can join me on that train anytime you like, there's plenty of room!

  Do I miss some things from living in a big city?  Of course!!  And it just so happened that our exact location in that large city was pretty smokin' sweet:  three miles from the beach, a bevy  of friends within the disability community, a church that offered sign language interpretation, a social group for the kids where they were VALUED, included and LOVED for the awesome individuals that they are, and beautiful homes in which we lived and beautiful aesthetics surrounded us wherever we went.  And last but definitely not least (I'm only listing this last because I won't make it through this sentence without a box of Kleenex), quite possibly the best "baby sitter" or child care provider (whatever you want to call it) I could EVER ask for.  She was in our lives for over two years and now we're out here without her.  I feel like I'm on a ledge of a skyscraper all alone.  (oh great, here come the flaming hot tears down my cheeks).  It's been a month since we left and it still feels like a gorilla is sitting on my chest whenever I think of her. She IS all that and more. I feel like I got punched in the gut whenever I think of how we're without her, how our kids are without her love and laughter and joy.  Are there things I miss?  Oh ya, and missing things like Miss Becky will never go away (but I am hoping to be able to talk to her on the phone at some point without blubbering), but it's NORMAL to miss things when you leave something or someone important.  The fact that you do miss means that you have the capacity to make connections to people and experiences within your environment, which is a GOOD human quality.  Please don't mistake my references for missing some thing or some one as "hate speech" for our current location.

  Another writing tool I employ is humor. I like to point out the ridiculous, the absurd, the nonsensical and the inane.  Many times, I'm pointing that stuff out in my own life, my own perceptions and thought patterns.  Other times I'm opening my eyes and just documenting what I'm seeing around me, like the fact that our new town has a North Avenue which runs east and west and a West Street which runs north and south. I pointed that out recently, but does that mean that I'm making fun of our new town?  NO, it means that I'm pointing out that it can be confusing!!  In our previous home I pointed out the proliferation of botox clinics and medi-spas.  Does that mean that I think that every person in LaLaLand was pumped full of bovine botulism and were all phony and fake?  NO, it means I was merely pointing out that there was enough botox for every man, woman and child on the planet, located in one city, which is of course absurd and hilarious, and tragically funny all at the same time.  There is a cavernous difference between pointing out the funny things in life and being mean spirited and derisive.  I will always strive to stay in the camp of the former.

  Thank you for staying awake long enough to read this.....or for employing the use of a 5 Hour energy drink in order to do so!  Life is FAR too short and precious to not laugh, and to not have fun!!  Have a GREAT DAY!!

A Month's Worth Of Posts In One.....

 So this morning I decided I wanted to put some of my most recent posts from Facebook in one place (some of the posts have references to photos that aren't listed here and that's why).  I didn't know the best way to play this, so I just listed them from the first of the writing stream to the current date.  And I did this for me, for my recording efforts, so I can look back and read from the "beginning" (or our latest "beginning"; this new adventure) to where we are today, half way through April.  In my next post, I'll address some of the themes or references in this collection......so IF anyone reads this blog (if a writer writes and no one reads it, is it still writing?) you might want to be familiar with this stuff before reading the next entries.......
 
 
(Wed. March 14)  Things I've noticed so far on our Back To The Rockies journey: I'm just a little too happy that gas is "only" $3.59 here (and sadly I have now joined the ranks of my parents who can, and do, smoothly work in the price of gas into EVERY conversation). 47 degrees felt good last night after being in a car for two straight days, but the 36 degrees that greeted me when I let out the dogs this morning was a little startling, as my body doesn't recognize temps under 62 degrees. Also there was a thin crystallized film over the dogs' water this morning. Fortunately Shalom always travels with her ice-fishing pole. Our new little berg is a thriving metropolis of 58,566 people covering 38.22 sq miles. I'm used to 58k people at Costco with me, all with their carts parked in the middle of the aisles while they sample every little morsel they can while chatting up the sample lady. Also, there is no Costco. Or Yogurtland. And I dare say that my days of to-die-for-Pad Thai, melt-in-your-mouth Sag Paneer from Ocean Tava, and fresh-baked-this-morning pita bread from my corner market are over......or maybe just going on a vacay for awhile.               

                                                       Scenes from the journey..........
 
261
 
 
 
(Thurs. March 15)  What I've noticed so far today in our new life: I hung up a pair of sweatpants, a pair of pajamas, one of Hayden's sweatshirts, and a pair of DP's skate shoes to dry in the laundry room last night. This morning three of the items were completely dry and the others were just slightly damp. Note to self: you've increased your water intake by about a liter/day, but you'll need to add another liter/day to keep up with what the ambient air is draining out of you.

I took the Big Girl out walking this morning (about the distance from the Esplanade to the Redondo Pier and back) and only saw two or three other people. And they weren't on skateboards or scooters or longboards. Something tells me Chronic Taco is NOT in my immediate future.

There is at least a 30 degree temperature swing between the low in the morning and the high in the afternoon and no one seems to notice. It doesn't even make the news. What could be more alarming than the weather deviating from the standard norm of Sunny & 74F?
25
 
 
(Thurs. March 15) Thursday's Thoughts: The local police had a sting operation set up today to ticket drivers who were going over 30mph and for those tail-gating on a couple of main thoroughfares through Our Town. They don't HAVE enough jails in L.A.! I didn't touch the car keys all day.

Earlier in the day I asked Jeff to go to Trader Joe's to get more milk for Hayden. He gave me a funny look. Hmmmm, I was sure there was a Trader Joe's in the sales pitch.

Filed under the heading of "Things Aspies Say", DP went up to Jeff today and said, "Don't be offended, but you look older than Grammy". HAHAHAHAHAHAHAHAHA!!!! No, I wasn't offended AT ALL my little Sweet Potato, but Daddy's ego is down for the COUNT!!

Going to Uncle Danny's with Grammy to see the chickens and get fresh eggs is a pretty cool field trip. Later those eggs turned into pretty amazing cupcake size quiches for dinner. YUMMMM

DP rode her bike around the col d'sac a few times this afternoon and no kids came out to tease her or ridicule her. Nice change

We had to drive ALL THE WAY downtown to get a new string for the girl-child's violin. It took 1.5 minutes. But then from there, we drove OVER a mile to find a restaurant (there were of course other eateries in between, but not the one the hubs was thinking of). I think we crossed two bridges and the mighty Colorado River. I told him we were too far from home and we'd have to find a room for the night.

Better than all the toys we could have unearthed for her from the 498 boxes packed away in a storage unit, was the treasure trove of goodies Grammy found in Auntie Jill's old desk from her bedroom where DP is sleeping.....kept her entertained most of the afternoon!
 
 
(Mon. March 19, 2012)  Monday's Musings:

Good news peeps!! Theres a SONIC in Our Town! Hope abounds for when it's 135 degrees in the summer. How do you spell relief? Cherry Limemade!!

I'm sewing on my GirlScout Adventurer Badge after walking in the freezing blustery wind this afternoon with The Big Girl (yes I'm repeating myself--I'm allowed, it's my wall and I can repeat if I want to)

Found a new knitting group. Not the same as my beloved Knitting Brain Trust, but I learned a few new things on my first night there, proving that knitters everywhere are happy to share their knowledge and experience with anyone who wants to learn.

Left alone with her Granddad's piano for a few minutes, the girl-child taught herself the main theme to Star Wars this afternoon.

Hayden, proving once again that he is an exact replica if his father, refused to eat any of his black bean soup until I buttered a slice of bread and put the beans on top of the bread. Then all was right with the world.

My father in law is LIVID over the Peyton Manning acquisition. By the rather heated "discussion" he was having with Jeff after dinner, I would guess this solidifies in his mind why John Elway has never been worth anything. Good thing Biff's # is unlisted.
 
(Thurs. March 22) Thoughts From Thursday:

I think I need to hire a lotion consultant

The Man needs to start carrying an extra pen with him for all the autographs he's signing around town....... It's like being with Roy Hobbs the way people are reacting when they see him

My in-laws both get Fearless Epicurean badges for continuing to show up to the dinner table despite the fact they've never heard of most of the dishes they're eating.
 
(Sat. March 24)  Saturdays need to seriously take a chill pill and stop going by at the speed of light. Things that made me go, "hmmmm " today:
SPF 4000 applied-check. Five liters of water packed-check. Mt.Everest approved sunglasses-check. Ready to bike two blocks to the park at 11 this morning. I'm pretty sure the entire state of CO has moved a few hundred miles closer to the sun since we left the first time.

We've gone from high school and collegiate surf teams to bicycle teams. Went to my first criterium today, in downtown Our Town----Wooohooo. A very chill and laid back event, unless you were on a Cannondale, then probably not so much.

H gives the local library a big thumbs-up, as it is WELL stocked with YoGabbaGabba & Signing Time DVD's

Girl-child is getting lots more exercise; she's riding her bike around the court a lot, taking The Big Girl out on multiple walks everyday, and today she made friends with the two boys across the street who own a Great Pyrennes, and then ended up riding scooters with them around the neighborhood park. So far no reports of teasing, taunting or ridiculing (of DP), which is a good (and new) thing

Mimi, the wonder cat, was just down in the basement playing the piano. It's a circus over here, never a dull moment
 
 
 
 
(Sun. April 1)Sunday's are for driving' so that's what we did today.....we figured the kids hadn't driven each other completely over the edge on yesterday's excursion through the peach orchards, so today we just gave them an extra nudge......besides Jeff and I wanted to hear more Star Wars music.......

So, just a mere few minutes outside of Our Town is this ginormous collection of canyons contained in one national park. It's a little over 26 miles across and it's favorite ride for people who feel the need to peddle their thighs to the consistency of hamburger. In November there's an annual marathon.....time to start training!!!! And of course there are a gazillion trails where you can get to know Colorado's snakes, lizards and mountain lions up close and personal without the possibility of medical care for days and days. Sign me up!

Enjoy the photos.......none of Hayden though because getting a picture of him would require him to get out of the vehicle, which apparently was NOT in the cards today (we asked).......until we locked him IN the car, walked 50 feet away to a viewing point and then he decided he would get out. Fortunately the alarm went off because he was trying to get out after the alarm had been activated.....so we completely interrupted the serenity of nature with a blaring alarm, but Hayden didn't get run down in the middle of a gigantic canyon, so it was all good. And he didn't try to get out again, because Jeff re-engaged the child locks on the back doors.......whew.......Just another day at the office........
 



 

 
  
 
(Mon. April 2) Monday's Musings: it was cold today in Our Town. "How cold?", you ask.......it was so cold that Hayden actually wore sweat pants and a long sleeve shirt and DP wore socks (of course she was wearing shorts---that'll never change since she can stand pants if any kind). Apparently the half of Utah that blew in with yesterday's wind storm also brought with it actual Spring time cooler temps.

Tonight at knitting the jr high guy (yes, he's a guy--and he's about a gazillion feet tall) was crocheting a fake horse hair tail cover. No, the horse hair is real (and pretty creepy if you ask me), but it's in a fake pony tail thing that you add to the horse's real tail when they're showing..... That's right, to make the horse's tail seem fuller and thicker!! (I knew my L.A. friends would catch on to this concept right away--like they can't spot a fake horse tail from a mile away---puleeeze). And of course every 4H'er worth his/her salt knows that you have to keep the fake horse tail in a protective sleeve when it's not in use, and since you can't just be buyin those things off the rack, you have to make your own. It's black and white.... The sleeve thing I mean. I have no idea what color the horse is, and not do I care. I mean, what's next, fake eye lash extensions? Rump implants? This is NOT the 4H that my father in law grew up with I'm tellin ya.

Speaking of horsey things (hope I don't lose anyone with that technical ranch-speak), I saw a lady walking around with cowboy boots ( not surprising as they give a pair when you cross the state line, I said I had already bought some at the office) that had actual spurs on them.....and she looked like she knew what do with those spurs too.

Jeff found our DVD player and hooked it up to an unused tv in the basement so H could main-line YoGabbaGabba like the DJLance junkie that he is and H was so excited he wore his hearing aids all afternoon......
 
 
 (Wed. April 4) Wow, It's Wednesday!! Seriously don't even know how THAT happened! Turning out to be a lovely week overall:

We found a new person to cut Hayden's hair.....who shall henceforth be referred to as "Saint Linda", or "SL" for short. Really just went in to see if she had the right temperament to handle Mr. Oh-No-You-Won't-Get-THOSE-Scissors-Near-Me, and to see if we could get a little trim, but as the photo shows, we went for broke and Mr. Octopus Hands was thwarted in almost all his evil efforts (it might have helped that he hadn't been in the chair more than two minutes (and fully in rebellion-mode) when I decided that a quick refresher course in the organizational management of his life might be in order, so off to the bathroom in the back we went). SL remained calm, cool and most important of all, super quick with those scissors and within minutes we found a handsome teenage boy under that mop!

CO weather is PERFECT for those with ADD because it changes literally EVERY five minutes!! Sunday and Monday most of Utah's top soil blew into the Grand Valley, yesterday it was partly cloudy and cool, and today it was a brilliantly crystal-clear-blue sky kind of day. If the temp never went beyond today's 70, I'd be in heaven.......but I know better!

We are LOVING the library in our town and H is now walkin' in like he owns the place: through the front doors, veering to the right into the kid's section and with laser-like focus he finds the YoGabbaGabba DVD's and starts shopping. Life is good! No need for a complicated and lengthy seminar from Mom or Dad on how to operate the tv/DVD player downstairs. H just gives us this look of: "Just give me the DVD's please and be on your way Parental Units....I've got this covered.......ta ta,". And off we go......In the meantime, DP has found the section in the library about The Bermuda Triangle and has checked out most of the books on that subject.

Granddad gave DP a rope to help her climb trees (hopefully JUST trees, but I don't know that we've spelled out that she can't climb houses or buildings with it, or use it to wrap around the back bumper of some unsuspecting cowboy's truck to get a free tow on her skateboard.....) and she's a kid on a mission. Last night she led a tree climbing seminar at the park for a couple of kids and she and her dad are headed back there right now.

Seriously hard to believe that Easter is THIS Sunday. Seems like Ash Wednesday was about 15 minutes ago. Six weeks ago seems like a lifetime ago. I must have been in the Your-Life-Is-Going-To-Be-One-Freakish-Adventure-After-Another line. Easter is DEF the BEST holiday of all and the one with all the hope and power. Staying focused on the future and appreciating the present. Life on life's terms.
 
 
 
(Tues. April 10)  Tuesday in Our Town:

Went to a high school baseball game with Mr. Our Town and found out that a couple his friends/former teammates (I think one guy he actually used to play against but they've always been friends through various teams and leagues they did play on together--who knows, can't keep up w/ all the teams through all the years)....Anyway, at least two of them actually played major league ball. Wow. The son of one of the guys who was in our wedding plays shortstop for their high school team. Ya, that REALLY messes with my Master's Degree in Denial Math.

As of today it looks like the Little Lachlan's have been signed to play on a local team. The girl-child wasn't too excited, reminding us that she had already turned down a contract to play in Manhattan Beach right before we had left town, but we're trying to talk her into participating so she can be an encouragement to her brother. Hmmm, have NO idea if that tactic will fly, but the uniforms are green, which may help because her soccer uniform from The Burg By The Sea was green and she ended up actually liking the color green as a result......

While playing Rummikub with The Man the other night (beating him soundly actually, but who keeps score?) with front door open I clearly heard gunshots (I DID live in L.A. afterall so I know what these things sound like......okay, so it wasn't exactly SouthCentral....I watched A LOT of "Law & Order" from the base of Mt. Crumpet, so sue me). I was like, "was that gunfire???" Mr. Man, "Uh, ya......shotgun I think" "WHAT??? What's THAT about??" In the meantime, Shalom, The Dog Who Vigilantly Holds Down The Floor, was on FULL alert barking her massive head off and shaking like a 120 pound leaf....and Mr. Man says, "Ya, you need to get used to this because people shoot guns all the time in rural areas".........Uh, YA, this is me getting used to the sound of guns going off for NO freakin' reason. No sirens, nothing. No front page story in the paper the next day. Oh....speaking of which, TRUE STORY: the national story of the guy who accidentally shot a girl with a mohawk a couple of weeks ago.....from Our Town. Thought she was a bird and he was in his house with a gun/rifle/bazooka or something....I dunno. Anyway, dude lives right here....somewhere. Yikes

In other news: Little Man's language is EXPLODING in this rarified lack-of-oxygen valley. Since we've been here, everyday he's now walking around the house saying "No TV...." with a very somber and melancholy voice. Very funny. And what's funny is that he totally knows how to start the DVD player and get himself hooked up with his Main Man, DJ Lance, so I guess when he's walking around saying "No TV...." it means he's deciding to come up for air. He's also yelling at the table while we're having a conversation during a meal and you look at him to reproach him and he puts his index finger to his lips and says, "shhhh"......HILARIOUS. Yes Dude, please be quiet. Please feel free to talk to us, but not shout. The Dude is trippin. All afternoon today before going to the baseball game he was signing Granddad and baseball.....every five seconds. Yes, Dude, we're taking Granddad to the baseball game. Life was good

The girl child is busy building a not-so-secret hideout behind the shed in the backyard (think Sheldon being able to keep a secret), complete with furniture and spy gear. Great, another possible location for a private conversation out the window. We all watched her second favorite movie tonight after dinner: "Joseph & The Technicolor Dreamcoat"..........What a fun show-I always see something new whenever we watch it (I think we're up to 25 times now......). Her first favorite? "The Music Man". Hmmm, I think I'm going to stick with Donnie-My-First-True-Love-Osmond, as Joseph and call it a night............
 
 
 
(Wed. April 11, 2012)
What kind of day was it? It was the kind of day when, even though your daughter is playing games on your phone in the backseat, and therefor you can't use your "notes" app, you grab the back of an envelope to jot things down, because.....well you can't risk forgetting some of the hilariousness you see.......

In no particular order:

*North Street in Our Town runs east and west. West Street goes north and south. I could only take so much of that and went back to my Mrs. Pollifax book

*We were out on a family trek for most of the morning taking a tour of Our Town in search of a place that would take our recyclables. We even stopped to buy gas at one point. Ya, I get the irony. I think we passed some of the homes from which the gunshots originate. After driving for over an hour (or ALL DAY if you believe the reports from the backseat) we found the ONE place in town that would take our variety of plastics and glass......and it was a whopping half mile from the house.

*Suburbans are compact vehicles here.....for reals.

*Clouds here MEAN something. I went to Never Never Land for quite awhile when I could just gaze up at the sky and say, "oooh, it looks a monkey" or "Isn't that just cute".....No people, we are in SERIOUS weather country and you have to study, analyze and figure out what these clouds are SAYING TO YOU right this minute, because they're saying somethin', mark my words! Today's interesting clouds brought 60mph gusts and black-ish/blue-ish scary-ness that swirled all around the valley all afternoon, but did they bring the much needed rain that everyone so desperately wants? Not so much.....

*.25 buys you two and a half hours of parking on prime downtown real estate.

*Saw my first Asian food store on our search-for-recycling adventure named "Carol's Oriental Foods". I'm not making this up and I don't care what it's called as long I can find a decent selection of nori, peppers, and dals.........my poor in-laws don't know what they're in for..........
 
 
(Thurs.p.m. April 12)  Just went to a public policy mtng in Our Town (public policy as it effects people w/ disabilities), where the person leading it, a major player in state-level systems change, disparaged and impugned social media, saying she has plenty of friends in real life and she doesn't need to look for new ones here on FB. Turns out she's active here in FB land and had more than 350 "friends" (wonder how many are "real"). Dear Systems Change Lady, It doesn't matter what you think about it, social media IS an unprecedented phenomenon that has repeatedly proven itself to be a major player on the WORLD stage and lives HAVE been changed and SAVED. In the world of disability, social media is helping forge authentic and intimate friendships and it is creating dynamic mentoring relationships in which our children's lives are enriched and on really good days, our sanity as parents is restored. Thank you. That is all.
 
 
(Sat.a.m.  April 14)Overnight here....busy, very busy (think the guy in the UPS spot: "Busy!!....I'm BUSY!!" as he calls out from his empty cubicle)

At some point I get up to use the bathroom:

Me: Shalom, move please, you're standing in front of the door

Shalom: Yes, I'm guarding it

Me: Well I need to get out of the door, please move

Shalom: No, the monster might be there

Me: There is no monster on the other side of the door

Shalom: You don't know that and if my GINORMOUS body weren't squished right up against the door, he would probably already be in here gobbling all of us up like Easter's ham......hey, which reminds me, why is it we only have dead pig here at Grammy & Granddad's house? I could really go for some ham right about........

Me: Move now! I'm about to wee my pants!

Shalom: Whatever happens, it's on you now Hee, hee, get it: "it's on YOU now??" hahahaha! I am SO funny in the middle of the night-who knew?

Me: OW!! Your standing on my foot!

Shalom: You told me to move, so I did. You didn't specify to where you wanted me to move.

......Then, what seemed like 15 minutes later:

Hayden: Oh THIS is SO hilarious!! Mom, Dad, have you heard the one where the........

Me: Hayden, what time is it? It's 5 in the morning! On a SATURDAY!! Trust me this is NO time for jokes

Hayden: HAHAHAHAHA!! This one is SO funny I can't stop laughing and throwing myself on my pillow.....PLEASE, you've gotta listen to this.......So the bear, the priest and the rabbi walk into a......

Me: PLEASE Hayden, save it for your set at the Comedy Club in Manhattan Beach......I'll send you there ONE WAY.....you can stay with Bronwyn Shields or Carrie Wetsch.....I'm sure they'd LOVE to have you for a few days or a week......Just please let me SLEEEEP on a Saturday morning!!!

Hayden: You mean Ryder & Tyler? Those two dudes are HILARIOUS! HAHAHAHAHAHAHA, I just can't stop laughing even thinking about them!! Watch out pillow, I'm going to attack you!! HAHAHAHAHA!! GOTCHA!!

......In the meantime, on the other side of the bed:

Jeff McLaughlin: SNORE, gurgle, cough, SNORE, SNORE, SNORE