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:


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.

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.


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


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