Take Me Out To The Ball Game!

Monday, March 21, 2011

Party Like You've Got Something Extra!!

     Today is "World Down Syndrome Day" where across the globe we join together beyond cultural, geographic, and religious boundaries to celebrate every person who has Down syndrome.  When people who don't know anyone or anything about Down syndrome hear about a friend or relative having a baby with Down syndrome their first response is often "Oh, I'm so sorry".  Those were my exact words too.  Before Hayden, when I still lived in a world where anyone born different was synonymous with epic tragedy.  I think part of the journey of walking with God isn't just that initial "accepting" that there IS a God who loves us and taking Jesus into our hearts, it comes in the daily living-out of how God chooses to heal the dark places in our hearts, that are unknown even to us.  I seriously didn't even know what love was before Hayden, but God knew.  And He knew that this baby, better than other child (and we had already lost two in the broken and twisted foster-to-adopt system just months before Hayden was born) was the one to single-handedly change my heart and the direction of our lives. 

    The assumption of course is that having a baby with Down syndrome automatically means a life of unending complicated medical problems and having a child that will never achieve anything.  Of course that's all rubbish.  While some babies with Down syndrome DO have medical issues, many have none at all.  And if by "achieve" you mean growing up to use their talents to make the world a better place, live independently and become tax-paying memebers of society, many do.  Are those who don't live independently not "achieving" anything?  Perhaps their mission here on earth isn't supposed to be out in the work force, maybe their jobs are changing hearts one at a time, closer to home in their own neighborhoods, churches and synagogues.  Many "typical" kids also grow up, make some horrific choices for their lives, and the lives of others and live out their days in a six foot by six foot cement cell, for which the rest of society pays.  I've never heard of a person with Down syndrome, stalking, killing or terrorizing another human being, ever.  How's that for achieving something?

    Now when I see a new baby born with T21 I want to run up to the parents and shout "CONGRATULATIONS!!" and "You have NO idea how RICH your life is about to become!!"  I think of today as "Grateful For T21 Day" because the day Hayden was born was the day when I truly began to live.  So for those of you fortunate enough to actually have a child with Down syndrome, congratulations!!  I truly hope you enjoy each minute WITH your child and are not trying to make him/her conform to what the world says children with Down syndrome should be doing or learning.  If you don't have a child with Down syndrome, I'm kind of sorry for you.  You're missing out on an amazing journey of pure love, unbridled sweetness, and true independence of thought and deed.  Hopefully you're getting the message from somewhere out there that every life is a treasure, every day is a gift and just being human is achievement enough.

Saturday, March 19, 2011

Homeschooling In Freedom

   There's something that's been on my heart and mind for months now.  Maybe years, but certainly since growing in freedom in the Lord as we've been homeschooling, which is now in it's fifth year.  And that is, a stifling spirit of striving in the "Christian" homeschooling community.  Trying to decide what came first for us; "freedom" or homeschooling is very much like the proverbial "chicken and the egg" discussion because it was right around the time the kids were seven and six years old, when we moved to WA, that we immediately began our journey of learning what it REALLY meant to be free in Christ that we came to the conclusion that homeschooling was the way we were going to educate our kids (by the way, "came to the conclusion" is code for God dragging us (me mainly) kicking and screaming into the homeschooling process, something I vowed with all my heart I would NEVER, EVER do in a million years, but that's another story).  So anyway, we went through a course called "Freedom" (short for Freedom in Christ) at a local church and it blew us up to a whole other dimension of knowing God.  We've never looked back and I can't EVEN imagine what our lives would be like today if we were still mired in the unbelievable bondage and pain we had been sinking in for so many years. 

   At the time we began homeschooling our seven year old son and five 1/2 year old daughter we began to break the chains of striving, failure, fear, anger, poverty, and a myriad of other forms of bondage that were drowning us.  We're a work in process and have SUCH a long way to go, but we've also come a
L O N G way and I'm grateful to say we've come a long way as homeschoolers.  Both of our kids have special needs and our homeschooling looks different than the "typical" family (ha, there's a lie right there if I ever heard it!), and yet I still struggle against the stereotypes of what homeschooling "should" look like.  Between my Twitter and Facebook accounts I'm bombarded with messages from other homeschoolers who are discussing the earth-shaking topics like the best P.E. curriculum (?) and their worries that they're falling behind with their curriculum-in-a-box.  Meanwhile back at the ranch, I'm just hoping that my daughter won't completely melt down as we broach the subject of long division (she did, by the way on the first day, so we cut the lesson short and went to the rock climbing gym) or that she'll remember from one day to the next what a verb is.  Needless to say I just can't relate to these people who have everything so neat and tidy in a box with children who awaken every morning waiting with baited breath for their new adventures in learning.

  So that got me thinking, if I'm one mom out here in the universe who is everyday engaged in spiritual warfare, breaking and severing the lies of the enemy and pressing into what GOD has to say over our lives and into my heart, especially as it pertains to homeschooling, maybe there are others out there battling to stay afloat in the sea of Homeschool Striving.  Maybe I could talk about how we do our homeschooling and maybe that might help another mom or dad out there who is overwhelmed when they read about how their five year old with Down syndrome is reading and writing and producing documentaries for their local cable channels (okay, that's a slight exaggeration, but only slightly).

   Homeschooling for us is amazingly simple.  On some levels.  Our oldest child, Hayden, is 12 and is, among other things, currently working on reading words that I've written on roughly 3"x8" poster board stock.  I try to do that at least once a day with him (usually while he's eating his breakfast and his younger sister is doing her chores).  In a perfect world I would do these reading words three or four times with him throughout the day, but our world is far from perfect.  He has Down syndrome and lots of oral motor issues so everyday I try, (emphasis on try) to do muscle based oral motor exercises with him, like using a toothette (think foam lolly pop on a stick) to stimulate his gums and tongue, we work on horns (I follow a specific hierarchy which I learned from going to a MBOMT seminar and from buying the specific tools at (www.talktools.net), blowing bubbles and he drinks from specific straws to help strengthen his jaw, tongue and lip muscles.  I try to do neurodevelopment-style exercises like crossing mid-line, standing on a balance board and singing, marching, swinging, jumping on a trampoline and things like that throughout the day too.  Hayden is also hard of hearing (h/h) so American Sign Language is his first language and we are always, always, always working on expressive communication with him, be it through ASL, or encouraging him to attempt to verbalize words.  Hayden this past year has become potty trained, which has been an AMAZINGLY victorious journey and everyday we are amazed how FAR LESS stressful our lives have become.  None the less though, that's an area of his life that needs to be managed so we are always working on those self help skills, along with dressing himself and doing what most people would call "basic" chores like busing his own dishes and cups from the table and wiping down the table after he eats.  What's "basic" for a family of typically developing kids takes our child 15 times as long to do.  So while I'm doing any of those self help things with Hayden, I try to make sure our daughter is constructively occupied.  Enter Sage Lft, stress (the stress of keeping one child busy while I'm tending to another.....not that the child entering from Stage Left is stress).

   Our daughter, DP, is 11 and is multi-talented, multi-faceted, and very intelligent.  Her special needs come in the way of not always being able to transition from one activity to another (especially if it's not her idea), not being able to handle too much sensory input (with her tolerance level changing daily), and having rigidity of thought, to name a few.  All of her symptoms add up to having Asperger's syndrome, a form of autism that up until recently was largely not diagnosed in girls.  Structure is VERY important in her daily routine.  For her schooling we're working on things like different ways of looking at a problem (like multiplication and division are two sides of the same coin) and fine motor skills to improve her handwriting.  On some days we're only able to do one "academic" activity, like the four long division problems we did the other day.  Then we went to the rock climbing gym.  And that has to be okay for me.  It's hard because my entire foundation for life is firmly rooted in striving, perfectionism and never being able to do enough in my parents' eyes, and therefor mine, but I have to look at everything we do with her through the eyes of a child with autism.  Forcing a mold of a typical child on top of her just doesn't work. 
   So homeschooling with her sometimes means playing games of Scrabble, or "memory", or "Rummikub", or doing crossword puzzles, or playing "hangman" or "Wheel of Fortune".   Lately it's been difficult to get her interested in playing games, so the "rules" of what works and doesn't work with her seem to be changing.  Often homeschooling a child with autism is like tap dancing on shifting sand.  The one thing I HAVE learned about educating children at home is that it is VERY MUCH a symbiotic relationship.  I can't PUT knowledge into either of their minds or hearts, they both have to be willing participants, but with autism in particular being such a complicated onion with varying degrees of confusing layers, it's challenging to say the least.

  More thoughts later................

Friday, March 11, 2011

When Men Become Gods In Their Own Eyes

I love it when people reveal themselves for who they are.  Yes, this person is 91 years old, but clearly he currently has an audience and he's had one for some time, and clearly he has a circle of influence and is using his position in community leadership for evil, which is why his message must be heeded.  Eugenics isn't new (Pres. Woodrow Wilson was a HUGE proponent) and is the underpinning for many ideological agendas.  This isn't about being liberal or conservative my frends.


Wednesday, March 2, 2011

End The "R" Word Today!

   Today across the country twitter feeds will be twittering and FB Home Pages will be rife with postings about ending the "r" word. While many of my "friends" here on FB have lived in the disability world for quite awhile as a parent, sibling or grandparent of a child with a disability, there are also lots of folks here who don't have daily interactions with families who have kids with special needs.

   Ending the use of the "r" word in our popular culture is important because it represents a small step toward eliminating the ugly and demeaning distinction between those who can score higher on a standardized IQ test and those who don't. Many people in the disability world may not score very "high" on an IQ test, but the people I've met in that category possess more spiritual and emotional accuity than I can ever hope to attain (and if you've been my friend here on FB for any length of time, you know the feats and exploits of both of our kids who have "special needs"). When someone uses the "r" word, the idea behind it is that the person in their mind who IS "r", is that that person isn't even worth the bother. They are nameless and faceless, so there's no need to bother to educate, to befriend, or heaven-forbid, employ (the current rate of unemployment among the "disabled" is @ 90%). If someone remains nameless and faceless they have far less worth in any society and are therefor FAR easier to be relegated to the bottom of the social heirarchy.

   Quite frankly I don't even know what "retarded" means because my son brings gifts into my heart every single day and makes my life fuller than I could have possibly imagined, and I know for a fact I don't deserve one bit of it. We have hope, we have joy, we have a very full life of exploration, imagination, accomplishment and pure satisfaction. Quite the opposite of "r" to me, it's a life accelerated and invigorating!!

   My hope for today is that my friends here on FB who DON'T know someone with an intellectual disability will do a thorough gut-check on how they talk about others and that they boldly speak up when someone in their company uses the "r" word in any context. It's time to bury that word and the stigma that goes along with it. Tell them you have a friend named Hayden who is anything but "r" and that he is living his life as a messenger of hope and healing to all who will listen.