Take Me Out To The Ball Game!

Sunday, December 25, 2011

"I'm So Thankful Because God Answered ____________ Prayer", And Other Horse Pucky

   I was listening to L.A.'s Christian talk station the other evening when the afternoon drive guy was asking people to call and say what they were thankful for this year, specifically to tell stories of how God had answered their prayers in the past year.  Now I am ALL for proclaiming God's goodness ALL the time, and it's certainly a GREAT thing to be thankful for any and ALL answered prayers, but let's get this straight right now:  God is good ALL the time and ALL the time He is good.  Answered prayers are NOT the only, or even the best, evidence of God's grace and mercy, and how He is at work in our lives. You don't see it?  You don't feel it?  Bummer.  That doesn't change the facts of WHO God is:  He IS good.  All the freakin' time.  He is ALWAYS working on behalf of those who commit their lives to Him, give their hearts over to Jesus, and who daily want more of God in their hearts and less of themselves.

  So that rant aside, it just got me thinking, what do I have to be thankful for this year?  Notice I didn't ask, "What prayers did God answer this year?"  No, it's more like "What are the events of 2011 that I could put in the "thankfulness-column"?  Quite frankly I'm ending this year on an incomprehensibly sad note.  I feel like I've taken a cannon to the chest and at any moment, indeed at any point in the day, I could dissolve into tears.  Sometimes I do.  It's Christmas Day, just a little over one month that my beloved nephew, Jason, died.  Twenty three days ago was his funeral.  On one hand it seems like an Edgar Allen Poe nightmarish tale from a very long time ago and then all at once it seems like it was just yesterday and I start to cry again.  So what am I thankful for in THIS nightmare scenario that Jason was taken from us in his early 20's, in THE prime of his life?  I'm thankful I got to know him.  I'm thankful that he knew Jesus personally and that Jason was a GOOD person.  No, I mean he was really a GOOD human being.  I have moments where I'm nice; I can be polite, I can be caring and kind.  I'm not talking about that.  Jason LIVED it 24/7.  He made this world better because he was in it.  From paying for groceries for total strangers, to showing kindness and love (gigantic bear hugs) to EVERYONE he knew, Jason was good through and through.  I'm really, really glad that my husband and my kids and I got to know him and that we chose to invest in his life while we lived near him for three years.  (see my previous blog posts to get to know just how amazing Jason was)

  I'm SO thankful that our daughter is getting some MUCH needed help through resources like an autism/anxiety study we participated in at UCLA to now weekly counseling closer to home.  I'm thankful that I'm letting go of the self-condemnation and self-imposed stigma of asking for chemical intervention on her behalf.  I'm thankful that God doesn't beat me with the "bad parent" stick and that I'm learning to recognize that when that stick comes out, it's the devil himself who's holding it.  I'm thankful that our family is beginning to heal from years of incomprehensible insanity stemming from autism-related behaviors.  I'm thankful we have a knowledgeable and conservative doctor who truly CARES, not only about our daughter, but that our family survives intact.  I'm thankful that as I write this, we ARE a family; our daughter is sleeping soundly in her bedroom and not in a group home, or a residential treatment facility, or even a hospital.  If you have a child with emotional challenges, you KNOW that words cannot describe the pain you suffer as it looks at times like your child's psyche might be dissolving in front of your eyes.

  I'm thankful for the friendships I've made on-line through social media and various listservs I belong to that bring parents of kids with autism and special needs in general, together.  The bond we parents share is very strong and the safety of the forums is like a fortress standing against the gales and hurricanes in a world, filled with family members and total strangers, that has NO idea what it's like to live with kids with special needs and the unfathomable amount of pressure that we live with on a daily basis.  I'm thankful I have a place where I can ask questions, cry, rant, laugh, share every single victory (no matter how small it seems to most people), and to just be able to ask for help to get through the rough days.

  I'm thankful that God is IN CHARGE of the details of our everyday lives, and I mean every MINUTE of our days.  In February of this year God took Jeff off of his career path, and away from what brought us here to L.A.  We still don't know what exactly we're going to do, but so far, God has made it clear that we're supposed to remain here and while we're here, He's providing every single thing we need.  Daily bread.  Only what we need.  We want for nothing.  It is a powerful way to live.  Everyday I press in to know God more intimately.  Everyday He answers.  I'm thankful that God reveals WHO He is in the pile of unanswered questions that start with "What about.......?" 

  I am thankful for the powerful, powerful friendships that bless me everyday.  There's just no way I could have made it through the last month without them, plain and simple.  I think there is a level of friendship here on earth that just defies words--like that person is the other half of your brain, your oxygen when you can't breathe, and who truly doesn't judge you for anything--not that she WOULDN'T slap you upside the head if you needed it, but short of doing something illegal, immoral or fattening, she just doesn't sit as the judge and jury in your life.  Words fail me, I just thank God EVERYDAY for that person, or in my case, these two people, and pray over them everyday.  I NEVER want to take them for granted and I am SO grateful to call them friends.

  I'm thankful that after three long years, it looks live we've found a church home.  I don't know why it took us so long to visit this place, as we've known about it since we moved here.  Maybe we weren't ready, who knows, but it offers ASL interpretation and literally from the first night there, we've been embraced and welcomed.  I'm still getting used to it, this strange feeling of being welcomed, but I'm getting more comfortable every week.  So far no one's asked us to leave the sanctuary, people aren't staring and gawking at our merry little band.  In fact the second week we were there, after I had taken our son out of the sanctuary during a quieter time when our son decided it really wasn't HIS best time to be quiet, the sign language interpreter turned around to Jeff after the main sermon was done and told him NOT to take Hayden out just because he was making noise.  She told him Hayden was WELCOME to stay in the main sanctuary, no matter how loud he was.  I think my husband teared up a little at that.  No one has EVER said we were THAT welcome ANYWHERE.  For that spirit, that EVERYONE is welcome, I'm VERY thankful.

  I'm thankful that both of our kids continue to learn and grow so much.  Our son is saying and signing more and more words everyday, every week.  He's following directions, riding a bike, and he seems to be understanding life in general more and more everyday.  He has joy in his heart and is genuinely a happy person.  Our daughter's anxiety is probably at least half of what it was last year at this time and that touches EVERY aspect of our lives together as a family and we know she's feeling so much better. She is genuinely happier, she can concentrate better (night and day from last year), and she's now ABLE to cooperate now, which is a HUGE change.  For all of these little miracles, which we are still witnessing everyday, I am SO thankful.

  I'm thankful I'm exercising again.  The Newfoundland and I are schlepping ourselves around the park for an hour almost everyday and that's a good thing.  I need the time for mental health and I'm glad I'm making me a priority again.

  I'm thankful I'm learning how to knit and that I have a group to go to every week where I can sit under excellent light and think about nothing other than knitting and purling.  I've always enjoyed the group, but didn't realize until my recent absence with the funeral, Thanksgiving, and then a bout with the flu that kept me away, that I was genuinely an authentic member of the group.  Everyone seems sincerely concerned about me, and the possibility that the kids might not be okay, when I was gone.  It felt nice to be missed.  It feels nice to belong.

  I am thankful that no matter what happens, I am not alone.  God IS with me.  He DOES speak to me through His Word and through His "still-small voice" in my heart.  There are NO guarantees in this world:   jobs come and go, loved ones die far too early for your time-frame, and sometimes your land-lord gives you two weeks to move out of your house because he wants it back, but God IS in this stuff we call LIFE and He is ALWAYS working behind the scenes, because He's developing HIS character in our hearts as we go through all these challenges.  My daughter will always have autism and that's cool by me.  Will she always have emotional struggles?  I hope not, for all of our sakes', but God continues to prove WHO He is in our lives everyday, even when she DOES have rough patches.  I am thankful that God's mercies are truly NEW every morning, no matter what kind of day we've had before.  I need to do a better job of remembering that. 

  So to you God, I say thank you for bringing me through this year.  You ARE good.  You ARE kind.  You ARE comforting and you love even the darkest parts of my soul.  You love me even though you know I'm about to fumble and stumble....probably by Noon tomorrow.  Thank you for your patience.  Thank you for how you're working in our lives and thank you for giving us Your Son, Jesus, through Whom we can have a life IN you.

Sunday, December 18, 2011

Dear Me

  I recently exchanged some tweets with a mom of a little girl who's about six and a half years old and her parents strongly suspect she might have Asperger's.  That exchange harkened me "back to the day" (which now seems like 15 minutes ago) to when we started seeing some things in our daughter we couldn't quite put our finger on, but knew that it had to be more than "just" sensory integrationd dysfunction, something we knew she had since the day she was born.  In that spirit, here's a letter to the me, the parent of our then six year old:

Hey You,

  First of all I want to say to you that you're doing a GREAT job with your daughter.  No, I'm serious, you ARE doing a great job!  You've been a tireless student learning everything you could absorb about sensory integration dysfunction since the day she was born and you've made it your mission to do anything you could to help her on a daily basis.  And you've done all this while having another child with disabilities, who up until this point has been very medically involved.  And if that's not enough, your marriage has been to hell, although right now it looks like it's turning a corner.  Hang in there.  Keep reaching out to God; He's there for you with a life line. 

  Keep listening to your gut, especially when it comes to ANYthing having to do with your daughter.  Through a lifetime of dysfunctional relationships you've convinced yourself that your gut can't be trusted, but you're wrong. You're spot-on in thinking that she's showing you she has more going on inside her brain than sensory integration dsyfunction.  No it's not "normal" that she memorizes word-for-word the Bill Nye The Science Guy videos.  It's wonderful and YES, she IS understanding 99% of what she's watching in those videos, but it's not a "sensory thing" for a five or six year old to memorize and recite science videos.  Same for SpongeBob-lots of little kids LOVE SpongeBob, but not very many of them recite the show word-for-word.

  There's a reason the word "Asperger's" keeps popping up into your mind.  Pay attention and don't try to shoo it away to the corner.  Don't let your pediatrician tell you that you're right, but that there are no parental supports or services available to you in the community.  You are VERY, very wise though to get her going again in occupational therapy.

  Your daughter DOES have Asperger's and everything, I mean EVERYTHING she says and does from now on will flow from that; tics, behaviors, habits, speech patterns, ways of relating to people around her, it can all be traced back to Asperger's.  From that you need to get it in your head and heart right now that it's not YOUR fault that she's never been able to look you in the eye.  You know what I'm talking about and you've noticed since she was just days and weeks old.  You HAVE been a good parent;  you HAVE been nurturing, you HAVE been loving, you HAVE been adoring, you HAVE tried to meet every single need she EVER exhibited.  You have been sincere in all your interactions with her and I really need you to believe that it's NOT your fault!!  It's one of the key characteristics of having Asperger's;  eye contact is all but impossible.  Do NOT let ANYONE tell you that she's disrespectful because she CAN'T look at anyone in the eye, and for crying out loud, throw away ALL those old tapes running through your head about what it means to be a "good girl" or to be a good daughter.  You were raised with a level of rigidity and conditional love that military boarding schools can only dream of.  Your daughter IS a good girl, but she's going to show it in entirely different ways than anything you've experienced.

  You are doing a great job of listening to your gut when it comes to homeschooling her, but please, please, please throw away ALL academic expectations.  Asperger's is VERY MUCH autism and autism by definition is fraught with developmental DELAYS.  Did you hear me?  Your brilliant little girl has developmental DELAYS.  She's not going to be able to write very well for a few years, so put aside the writing primers and pencils.  Your daughter is also a kinesthetic learner.  She learns by DOING......EVERYTHING.  Don't put a workbook in front of her for YEARS. She'll be fine; she's a SPONGE and is learning everything all the time, the last thing in the world she needs is to be saddled to a chair for anything more than eating.  RELAX.  I know your getting messages from your father as to what homeschooling "should" look like.  It's just an OPINION.  Your father is not (and never has been) God.  Stop being intimidated by him and teach YOUR daughter in the way that is natural and comfortable for YOU (and the same goes for your son too).

  Your daughter is going to come up with tics and behaviors.  It's okay, it's all a part of having Asperger's.  These are soothing motions she does with her hands.  It's not your fault!!  Yes, your life has been a bit crazy, but not everything that goes on with her is a direct result of something you did WRONG.  Let God come in and fill in the gaps.  Don't let members of your family tell you your daughter is weird or that she sounds possessed with the sounds that she makes with her throat.  It's their fear and control talking.  They've never been around kids or people with disabilities and they don't have a box for you and your little tribe.  It's scary for them.  Keep on shielding your son and daughter from the hurtful comments.

  There is nothing "mild" about Asperger's.  You've already heard it and you'll hear it countless times that Asperger's is "high functioning" autism or a "light" version of autism.  It's not.  Don't fall into the mental trap of thinking that just parts of your daughter are effected by autism. Yes, she is verbal, but don't let that fool you.  Having Asperger's affects her ability to undertand the millions of subtle nuances in our everyday common verbal exchanges.  Her inability to "decode" language will be responsible for many, many (too many to number) misunderstandings.  Please try to remember that she's not always trying to pick fights--she honestly doesn't understand the subtleties of language.  She's every bit as impaired as your son who has severe hearing loss and is non-verbal.

  As if Asperger's and sensory integration dysfunction aren't enough to keep you busy with your little one, you will start to see some other things in her behavior that go beyond the Asperger's diagnosis.  People in the "know" call them "co-morbid" conditions.  Again, these behaviors and attitudes are NOT your fault.  Your daughter IS fearfully and wonderfully created, but the "thorn" in her side, might be managing some chemical imbalances present in her brain.  Please just know that she's not acting out because she hates you or that she is miserable in your family.  Her challenges have nothing to do with your competency or lack of love for her.  She knows you love her and then she'll go pull out all her eyelashes.  Please don't take it personally.  I know that's easier said than done, but please say that to yourself 515 times a day until you believe it.

  That's enough for now.  Just love her as she is; a precious, brilliant, sensitive and deeply spiritual girl who hears the voice of God in her heart.


The wiser you

Sunday, December 11, 2011

Scenes From A Funeral

  "Ya know how in families everyone is crazy, but at the end of the day, they're family and you love them anyway?  Ya, well, that's not my family!"  I shamelessly stole this line from a Debra Messing, Dermot Mulroney movie I watched yesterday while I was sick in bed with the flu because, well, IT FITS!!  I feel like Lucy, from "A Charlie Brown Christmas" when she yells, "That's IT!!!"

  Yep, that's my family.  The forces of good and evil have been on a collision course for quite awhile but it all came to a freaky, ugly head at the funeral of my beloved nephew a week ago.  I say this without an ounce of acrimony or malace whatsoever.  It just is what it is.  I am watching the end game of a lifetime of bitterness and self-pity.  I am watching what happens when people DON'T get sick and tired of being sick and tired.  I am watching what happens when people hold on to pain instead of turning it over to God, or their Higher Power.  It's not pretty.  There are bound to be victims, there's bound to be bloodshed.  At the funeral I saw one of my cousins taking photos at various times throughout the day but for the life of me, I couldn't bring myself to take any pictures of anyone or anything; it just didn't seem appropriate to say "hey, it's been forever since I've seen you!  Could you move that giant pile of used tissue from the table so I can get a picture of you and your adorable children?", or "Hey, you've been crying non-stop for over a week, say CHEESE!"  So what I lack in digital imagery, I will try to portray with words.  These pictures in my mind's eye may not be in chronological order so bear with me.

*My friend Sue picks me up for the funeral in her car.  She's in a charcoal grey wool coat and she's wearing blush.  She has a calm resolve about her, somehow I know she means business today and she's going to be my rock.

*We get to the church, get out of her car and walk across the parking lot to see Jim, my nephew's long time wrestling mentor (he was just one of two or three former wrestlers who went to every one of his matches), employer at times, surrogate father, friend, and biggest fan, saying hi to my dad.  He was clearly and understandably choked up.  We hugged and both of us fell apart.  I felt his loss so deeply and would do anything to take away his pain.

*I see my dad and I'm relieved.  We had left from the same house, so I knew he was going, I was just relieved to actually see him there, in real life.  The night I had arrived in town for the funeral my dad told me my nephew's mother (my cousin to whom I had always been the closest) had forbade him to attend and was threatening to have him arrested should he disobey her edict.  She had her pastor call my dad to tell him he wasn't allowed to attend, but I don't think anyone knows why exactly and I don't know that she explained her reasons to my dad. She's in a bad place.  She's not a bad person, just a hurting person who's lashing out.  Unfortunately it's toward the one person, who has always loved her like a daughter, and until her mother (my aunt) married her wonderful step-dad when we were 12, my dad was in many way a father-figure to all my cousins, but I digress.

*The kiss of Judas:  after I walked into the foyer, I saw a cousin across the way whom I hadn't seen in quite a few years.  Just as I walk up to her, I see her whisper something to someone behind her when she spots my dad, who had followed me into the building.  She hugs me without warmth and I felt a chill go up my spine.  I look behind me see the pastor who will be officiating the service telling my dad to leave.  It has begun.  The unthinkable scenario is about to unfold.

*An unmoveable object in the church foyer.  My nephew David, Jason's older brother, had heard the night before that his parents had forbidden my dad from attending.  He wasn't happy.  This picture shows him standing his full 6'2" with his brand new light blue dress shirt tucked into tan shorts towering WAY over the officiating minister telling him under no uncertain terms will his uncle NOT not be allowed into his brother's funeral.  Considering he could have snapped him like a twig, David showed the utmost strength of character and dignity in NOT losing his composure even for one second.  He stated his case with passion and integrity and with few words.  The left side of his neck is splotchy red from the stress of the confrontation.  He doesn't speak harshly to anyone, ever, that I know of.  His eyes are flashing.  He's asking the minister to go get the police so they can tell him why his peaceful uncle is about to be hauled away in handcuffs.

*I look at Sue at the edge of the foyer taking in this unfolding melodrama.  She's standing straight as a statue, like she's made out of granite, and afraid to move for fear of getting in the way or missing something, but her eyes show great concern.  Her hands are cold.  Mine are violently shaking.  I say over and over again "this can't be happening".  She holds my hand.  I think I'm coming very close to passing out.

*I tell the pastor that love will win the day.  He keeps saying over and over that my dad has to leave.  I tell him that evil isn't going to win.  Love wins the day.  I say my peace and walk away.

*Jason's mother, my beloved cousin with whom I've had SO MUCH fun and laughter and wonderful conversations over the years, comes from the sanctuary and in about three strides with her long, long, legs is at my dad's side telling him she has to talk with him outside and to come with her right this instant.  My dad won't budge.  He's not mad, he's just not going to follow her anywhere, and not certainly not outside the building.

*One of my nieces, ones of David's sisters, is pulling at his sleeve in the foyer, "David, come ON!  They're starting the service now and I want you there!  PLEASE come in!  They will start the service without you-now I don't want that to happen, so please come with me now!"  David won't go with her.  She goes into the sanctuary alone, upset.

*I see my dad through the church foyer doors talking to the police outside the church.  The foyer has emptied and presumably everyone has walked in and taken their seats. The next thing I know, my dad is walking into the sanctuary with David.  They stand in the back.  Sue and I take two seats in the back row.  If my dad is hauled away by the police, I need a quick escape.

*One of my nieces who has been sobbing, probably non-stop since she heard the news, miraculously pulls herself together to give a lovely and poignant story of what it was like for her, a sign language interpreter, to work at Jason's middle and high schools.  It's funny in parts and very touching.  Jason's nickname for her was "Ragdoll" and he carried her around school like she was his toy.  She signs "I love you" toward Jason's casket as she leaves the podium.

*One of Jason's sisters sings a song.  I see this in the program and think "has everyone has lost their ever-lovin' mind to have a sister sing a song at a funeral??"  And not just a song, her part of a duet that she and Jason used to sing together.  Has this family completely gone off the deep end?  She does a terrific job.  She's an amazing girl (young woman now) on so many levels.  I admire her even more.

*After the service I went home with my dad (he left quickly before my cousin could call the police again) and I drove his car back to the church so I could attend the graveside service.  As I walk up to the church doors again, my niece (the one who sang) is holding one of the doors open and needs help with the other one.  They are carrying Jason's casket out from the sanctuary to the waiting hearse.  I hold the doors wide open with her and take in the surreal, somber scene.  Again my mind tries to tell me my eyes are playing tricks on me.  Another cousin takes pictures of the pallbearers carrying the casket.  I can't imagine why anyone would need a photograph to remember that moment in time.  It is forever etched in my heart and brain.

*I see Jason's oldest sister as we close the church doors and we hug tightly.  We walk arm-in-arm down to the church basement where the food and the rest of the family and friends are.  I get to see her beautiful and amazing boys, whom I haven't seen in three and a half years.  One of them is "new", although now he's nearly two and a half and he is truly beautiful.  The middle boy, "Natey" was born looking EXACTLY like his Uncle Jason.  I'm glad I get to see his sweet face again.

*Jason's mom and her husband stay on opposite sides of the church basement from me for the remainder of the food time.  The rift feels like a chasm.  I feel empty.

*My middle cousin and I have a nice time in the church basement hall as she tells me beautiful memories of how Jason drove to Alabama many times to spend time with her and her husband and their wonderful daughters.  We are smiling and crying through the stories thanking God so very much that He let such an amazing boy come into our lives.  We agree that WE are the blessed ones to have known Jason.

*Graveside.  The pastor doesn't say anything remotely relevant to Jason's life or memory, or the power of a living relationship with a loving God who is right here with us in our grief, so I tune out.  I look across the way and two of Jason's closest cousins, his buddies, are bent over sobbing.  His uncle's (my only male cousin) shoulders heave with desperate cries.  His son, another nephew, stands away from the group of his older cousins, crying alone, unashamed.  This all has to be a really bad story.  No one THIS adored, THIS beloved, THIS treasured, could be gone.  David stands behind the casket watching out over the crowd of family (and the few friends who were allowed to attend) and tears slide down his cheeks.  Two of David and Jason's friends from high school, their best friends, their closer-than-friends buddies, stand next to David and they each throw some dirt on the casket as it's lowered into the hole in the ground.

*David's girlfriend, Krista, stands off to the side of the tent, alone on the frozen ground.  I want to move toward her but I seem to be stuck in one place.  She's not crying.  She's being strong for David.  Or maybe she's just strong.  We are blessed to have her in our family and I can't wait until she and David get married.

*I see one of David's other sisters standing close to her husband.  She looks beautiful and fresh, all of her make-up in the same place where she put it that morning.  I on the other hand, haven't worn mascara (or any makeup) for well over a week and have no future plans for it.  When I went home with my dad earlier in the day, I had to reapply moisturizer because the salt from my tears was drying out my skin.  I take two things away from this:  1) I am NOT a dignified griever by any stretch and 2) I am now old-as-dirt and that's why my skin dried out-from all the undignified crying I had been doing since before I got dressed that morning, which now seems like six months ago.

*There's nothing anybody can say to make it better.  I look around at various intervals at the cemetary to  see people hugging each other.  People talk quietly to one another and then seem to dissappear into the frozen mist. 

*Jason's  mom and stepdad and I go to our separate cars at the same time.  We don't say anything to each other.  It feels awkward on one hand, but there's absolutely nothing I can say to her at this point and I know it. I feel bad for her because I remember like it was yesterday what it was like to be twisted up with anger and control.  It's confusing to me because she "knows" what freedom in Christ is.  She was at the church where a man who was profoundly impacted by ALS was miraculously cured. She was in on the "ground floor" of  what it means to be restored from generational sin and just sin in general.  I will always love her and I pray for her and her husband as we drive away.  I know as long as we're alive on this earth, there's a chance for restoration.  I hope that all the love that Jason showed to every single person he ever met doesn't end up in vain in his own family.


    Five days after my birthday this year I got a message at dinner time in my facebook messages to call my cousin immediately.  It was a life-stopping message because I instantly knew someone in our family had died, but nothing could have prepared me for the outcome of that conversation.  I called her from the privacy of the bathroom and I gripped the sink with white knuckles while she delivered the shocking news.  I tried not to let my voice crack too much because my cousin had already had a VERY long day retelling the horrific news over and over to our extended family and I didn't want to start her crying all over again.  A VERY bright light had been extinguished from amongst us.  Every single one of us in the family had been hit hard in the center of our beings with a Jason-size cannon.  It couldn't be true of course; Jason, the second youngest child of my third youngest cousin, wasn't gone-my cousin had been misinformed.  He was in his early 20's.  He was larger than life.  He was stronger than an ox (or at least most modern mechanized farm equipment) and he was living and working for an oil company in Oklahoma (but not doing anything dangerous, so it just couldn't be true, my mind rationalized).  My heart reeled.  The room began to spin and I hung on harder to the sink.  But of course it was true; the news had been delivered to Jason's parents (one of my other cousins) early that morning from emergency workers and first responders where Jason lived and worked in Oklahoma, and from there the gut wrenching word quickly spread from sibling to sibling, from cousin to cousin, from aunt and uncle to aunt and uncle, until all of us, far and wide across the country and even into India, where my dad was, were doubled over with wracking sobs, each of us wishing it were US who had left and NOT JASON, anyone BUT Jason.

     Jason was born the year I graduated from college and because I left home after high school to go away to college, I never really knew him until my family and I "accidentally" moved back "home" to WA a few years ago.  We moved there in the Spring just in time to see his older brother, David, graduate from high school and get ready for college.  We were relieved to learn that David would be attending a university literally just down the street from my dad's house, where we had begun "accidentally" living in his guest room (ya, the head count would be four people living in a 10'x10' room), because we really wanted to get to know my "nephews" (I'm an only child, but my seven cousins had generously let me be an "aunt" to their kids--a moniker that probably doesn't hold much meaning in itself, but I've always loved it because I've always loved each and every one of my cousins like they were my sisters and brother....which probably sounds so silly to people who actually have brothers and sisters, but it's true for me none the less). 

   But I digress......back to David and Jason.  Jason was just finishing his junior year in high school and would be playing football in the fall and then begin wrestling in the winter.  We didn't know how long our "vacation" was going to be, but we knew that if it extended into September then we would be able to see some of Jason's senior year football and David's first year of college football.  We were excited!!  In our family when referring to the siblings David or Jason, we don't often begin the sentence with just one name, it's always "David and Jason did........" or "David and Jason are going to......."  They were very much individuals and had very unique personalities, but they did lots of things together and were very close in age.  They were still living at home, so it made sense that they did lots of stuff together.  And because my dad lived across the street from his sister and her husband (my aunt and uncle, David & Jason's grandma and grandpa), I felt like I had gotten to know them through my dad via phone conversations and the various stories of what the "boys" had been up to.  So I was privy to tales of the many trips to the ocean with the boys where my dad had property, a few mission trips to Mexico with my dad where they served families who live in giant dumps there, and of all the hard work they did for my aunt and uncle across the street.  My dad thought the WORLD of both of them and loved them like they were his. 

   As it turns out, everyone thought Jason was their's because, I think he was.  If by some form of magic every single person who had ever worked with, or befriended Jason, or had the opportunity to spend time with him could have been at his funeral, maybe eventually (after six weeks or so) we would have grownn tired of hearing the same thing hour after hour after hour, but I doubt it.  There were accounts of Jason paying for people's groceries, paying their rent, taking friends of friends to the hospital, fixing people's cars, and showing up to a friend's apartment out of the blue just to cheer them up.  I think what broke me up more than anything (aside from the sheer magnitude of the loss) was the sadness that someone truly GOOD  had left us.  Person after person, coach after coach (coaches from OPPOSING high schools came and spoke), even an elementary school teacher who had heard the news came, and they ALL said the same thing, "Jason had the highest character, the strongest work ethic, was the friendliest, most affectionate and had the best attitude" of ANYONE they had ever taught, anyone they had ever coached, anyone who had EVER been in their youth group......of anyone they had EVER known.  Period. End of conversation.  And that's just from the people who COULD talk.  I was sitting in the back row next to some of Jason's high school friends who were doubled over sobbing, so they couldn't add much, and two of Jason's closest mentor/father-figure/friends one row in front of us weren't doing much better.  Every single one of us who knew Jason were, ARE, walking around with Jason-size holes in us, and given that Jason was at least 6'0" tall (I'm only 5' 1", so anyone over 5'5" seems tall to me!) and probably tipped the scales at 300, we've been hit hard. 

   I don't expect to ever "get over" losing Jason.  Looking back I've known for quite awhile we didn't "accidentally" move to WA back in '05.  God was SO GOOD to us to open our eyes to the possibility of doing this thing we call "life" in a different way, so it actually "made sense" to uproot our little family and completely impose ourselves into my dad's very quiet and VERY ordered world, in order to get to know God a whole lot better (and His amazing plan for our lives).  Once we realized that our lives were unfolding in that small guest room, we made it our mission to go to every one of Jason's football games and every one of David's college games we could attend.  I don't think we missed a wrestling match and very soon we were  the loudest cheerleaders in the bleachers.  We were SO blessed to get to truly know Jason and to have him be part of our lives.  He loved our kids (even if he was a little intimidating for our daughter at the time) and he treated Hayden like the great little boy he was.  Jason didn't really know what a disability was so he didn't treat Hayden like he was broken or something to be afraid of; he hugged him, wrestled with him and carried him around like he did with everyone who was smaller than him (which for Jason, was pretty much everybody).  Jason probably didn't do it consciously, but everywhere he went he gave a piece of himself to everyone he encountered.

  Jason is forever imprinted on my soul at the very same place there's a canyon full of tears.


Friday, October 28, 2011

Thank You Hayden

To My Dear Sweet Hayden,

You are now a mighty young man of 13, and before life gets even crazier than it already has, I just wanted to write you a note to say thank you.  Thank you for being you.  Thank you for being my son.  I'm horribly insecure, having spent most of my life's energy (until you came along) trying to please everyone else and always, always, always coming up short.  Thank you for teaching me that you don't have to please anyone and you have absolutely NOTHING to apologize for.  I LOVE your self confidence and feed off it.

Thank you for your joyous spirit!  Thank you for leading with a smile when you walk into a room....any room.  Thank you that when we encounter people we don't know out "there" in the world, you change people with your engaging smile.  I absolutely LOVE following you in a crowd to watch the hearts that melt in your wake.  It's magical.

Thank you for trying.  In all the therapies, (all the puzzles, all the bounces on the giant balls, all the sit ups, all the climbing, all the bike riding), in all the outtings with your crazy parents ("what?  I'm hiking ALL the way down to Abalone Cove???!"), all the meetings you've had to sit through, you try.  You try to talk to us even though you can't hear much and the muscles in your mouth don't work all that well yet, and yet you try SO hard to be connected to me, to us, your family.  Thank you.  I feel unworthy of your efforts.

Thank you for reaching out to hug me when I'm completely overwhelmed and I've just lost my mind with all the demands of being the mom to two busy kids.  Thank you for not holding a grudge against me for all of my juvenile behavior.

Thank you for changing my definition of what a family is and thank you for teaching me to see you how God sees each and every one of us, as treasured works of art, each with a unique mission here on earth.

I will forever be in your corner,

Your Mom

Your Unborn Baby Can't Wait To Meet You

It's almost the end of October, which means it's almost the end of Down Syndrome Awareness Month (or if you're like my 11 year old daughter who's been waiting for three months, it's almost Halloween--a day I think is more about the "hype" for her than the actual day....but that's another post).  Before my feeble brain cells take me completely off track I want to dedicate this post to the mom or dad out there who just found out that their unborn baby "may" have Down syndrome or Tisomy 21.  Here are some facts:

*Prenatal tests are NOT always accurate.  I've had friends who have gone through amnio's and they've come back negative, and then they gave birth to a baby with Down syndrome.  I've had friends who have had blood tests showing elevated levels of proteins and the baby they give birth did NOT have Trisomy 21.  There are NO guarantees in this life.  There just aren't.  Please get over this "I have a right to know all the variables so I can make a decision" (the emphasis being on the "I" as in "I" know what's right and wrong in this world).  This post modern philosphy serves no purposes whatsover in the world of parenting a child with Down syndrome and the sooner you put that behind you, the better off you'll be. 

*Doctors have MEDICAL degrees, they are NOT experts on how individual children develop and grow and they have NO business telling parents what their baby's future is going to be like.  Doctors NOT immerse themselves in the special needs community where positive attitude and aptitude count for EVERYthing and most certainly are directly related to quality of life.  Even in this day and age, in the year 2011, doctors in MAJOR hospitals (even here in Los Angeles) are telling parents of newly born babies with Down syndrome that there isn't much hope for their babies to learn their names, recognize their parents' faces, or have much of a life at all.  DO NOT BELIEVE THESE LIARS.  These are lies straight from the pits of hell, plain and simple.

(do I have your attention now?)

*This life with a child with Down syndrome is the BEST.  That's a fact and I'll argue for it till the cows come home. Your heart will grow exponentially.  Your baby (who will be a child before you know it) will DAILY teach you what it means to be strong and what it means to perservere.  Does that mean that every child with DS has a "hard life" filled with physical and cognitive challenges?  Not necessarily, but nearly every child with Down syndrome experiences challenges in at least one part of their lives; be it health, low muscle tone and coordination (not all kids with DS are "floppy" like Hayden was, but that extra chromosome does create an underlying "low muscle tone" issue, which pretty much every kiddo with DS that I know overcomes with time and patience), speech, or cognitive development.  Despite all that, you will have the BEST and most pure love from your child with Down syndrome that you can even imagine.  I'm pretty sure I can't describe this very well, but the love from your child will just knock you out.  You don't deserve it, I don't deserve it, and yet that love they have for you  is SO pure, SO unconditional.  It's an honor to have them in your life.

*Last fact:  this baby you're carrying who may have been identified as possibly having Down syndrome has a BRIGHT future!!  They are fierce and strong!!  When that sweet smile emerges at a few weeks old when you walk into a room it will strengthen you, embolden you, and it will hold you up when you need it no matter where your life takes you.  Please give them a chance to bring the happiness and joy into your heart that I'm gifted to live with every single day.

An Overdue Dose Of Humility

Do you ever read something or hear something and wonder, "Did I hear that right?  Did he/she meant to say that?".  Well, this morning I received what felt like a sharp rebuke from a friend, not necessarily a close friend, but someone with whom I'm certainly friendly and with whom I have regular contact.  It was in the context of me asking on a social media forum about when a particular meeting was coming up, and I joked about myself in the question, saying something like "well if I were more organized, I'd probably know about this meeting which is about organization!".  And he responded by saying how nice it would be if the group to which I was referring had a website, a calendar, etc... in which to communicate upcoming events.  Now it's very possible that this person wasn't trying to be snarky in any way and that his tone was intended to be completely benign.  But it felt like a slap and so I thought, "hmmmm I may need to consider this a bit".  And so I did a few minutes later, while Shalom (our Newfoundland) and I were schlepping ourselves around the park a few times (okay, okay, I'll be honest: I was schlepping pitifully, Shalom effortlessly trotted for the first couple of laps around the park and then she too began schlepping and trying to peel off toward the Suburban she off down the hillside as we rounded the corner).

Back in the day when Hayden was a baby and our hair was on fire about forming a Down syndrome support group for parents in our community (there were no active Down syndrome groups or disability groups of any kind), I was unbelievably arrogant, now that I look back on it.  The group we formed really was all about "us", but I did my level best to dress it up in a way that it looked like I was serving others though.  Don't get me wrong, we DID want to connect with other families, we DID (and DO) want to make sure that parents knew everything they possibly could about feeding methods, different types of therapies, how to create Infant Family Support Plans and IEP's that really would serve the individual child, and we really DID want to have friends that would share our journey through disability with us, etc...., but underneath it all I'm pretty sure my attitude was, "I've gone to all this work to make these meetings happen; I send out e-mails, I make fliers (this was WAY BACK in the day before a common schlub like me would even consider creating a webpage on my own.  Come to think of it, I don't think this schlub would do it even today!), "I make phone calls letting people know what's going on out there in the community, the least "you" can do (the "you" being that parent of another child in the community with Down syndrome) is pay attention!  I'm working here!!"  Ya, I was all about having a servant's heart.

So the medicine I got this morning may or may not have been intended to sting, but since it did sting, I take it as a welcome sign that I sorely needed a dose of humility.  A little trip down memory-lane if you will; to remember back in the day when it was just Hayden and us, and then a newborn baby girl (and yes she had significant special needs and we were VERY busy on every level trying to provide her with supports and services all the while trying our best to adopt her-but it seemed a LOT simpler then) and how our lives revolved around "us" and our efforts "for" the community without really stopping very often to take into consideration what those other families were going through at the time and what could have been preventing them from jumping in feet-first. Without sounding like a martyred soul, raising a child (even a young one) with special needs is well, special.  There ARE more appointments, there IS more paperwork that ONLY you can take care of.  There are more stresses on our every day lives than that of a typical family.  And that's just if the child we're talking about is "healthy", not requring many medical interventions and not taking into account the other children you may have and just all it takes to be a parent.  Ya, it's crazy!!

Since leaving that town where our kids were born a few years ago, our lives have taken a couple of significant turns; geographically, spiritually, emotionally, etc....  And while Hayden has been relatively "healthy" overall, for the first seven years of his life he had life-threatening ear infections, eight major reconstructive ear surgeries (including peeling back the ear itself and ridding the middle ear of potentially deadly bacteria) and a life changing bout with Infantile Spasms, which forever changed Hayden and our family.  About the time Hayden was getting healthy (and we began homeschooling,-NO coincidence there with the state how his health steadily improved), we began to realize that our daughter was exhibiting some traits beyond what knew her challenges in the sensory integration arena to be, and that has led us to the world of autism.  So for the past six years (and counting) our days are taken up mainly with getting through with as few blow ups as possible.  To say it's been rough doesn't even begin to describe what most of our days are like.  I'm glad I didn't know then what I know now, but I sure wish that I had had more compassion for my fellow parents on the journey and what they could have been experiencing as we were on the road together. 

Of course hindsight being 20-20 and all that,  I sure hope that despite my ego, I helped even one person and never made someone feel small.  And if I did, I hope I have the opportunity to apologize one day.

Tuesday, October 11, 2011

Nothing To Prove And All The Time In The World To Prove It

  For National Down Syndrome Awareness Month there are all kinds of blogs and essays written FAR better than anything you'll ever see here, spouting the accomplishments and feats of people of all ages who have Down syndrome (the extra chromosome on the 21st gene that's also called Trisomy 21).  I LOVE that people are bringing attention to people who have DS who are out there just livin' life: going surfing (on my facebook wall today), riding horses, swimming SUPER crazy long distances (Karen Gaffney of Portland, OR), teaching a Kindermusik class, working independently at jobs out in the community, riding city buses to and from their homes, etc... 

   While I completely applaud and am 100% behind the efforts to bring attention to the accomplishments of those who have DS, I think we can sometimes portray an image to the outside world of "Look what my son/daughter is doing:  he's (she) is ______________, he's in "such and such"activity- isn't he great?  He has VALUE!!"  Don't get me wrong, I do NOT in any way fault ANY parent for tauting their child's accomplishments and I completely understand why the parent of a child who just a generation ago would have been institutionlized from BIRTH would want the entire WORLD to know what all their kids can do despite the challenges of having an extra chromosome.  My concern is that sometimes we as parents of kids with disabilities are out there CONSTANTLY (and very subconsiously in most cases) proving that our child has value as a human being because she's in a hip-hop dance class, or he sings in the choir, or he's in a play at school, or he "reads at grade level" as if to say, "See, he's not that different.....he's in the cool club, even though he has a disability". 

   Much of the examinations we feel from the outside world come from those who used to be, or should be the closest to us; friends, our own brothers and sisters, our parents and extended family members, rabbis and pastors, etc....  Last year my best friend was at a wedding reception and was seated at a table with some former friends.  I say "former" because my friend and her family just don't have a lot in common with these people anymore, but before my friend's daughter was born their families did lots of things with them (my friendn's daughter is a year younger than Hayden).  These are folks who are pretty bound up in the world's game of "what will "so and so think?"" and they act and talk accordingly.  At some point during the evening as the families were talking about their kids and just doing the normal chit-chat-thing, the woman turned to my friend and said, "Well can Claire READ?" (names have been changed to protect the innocent from being associated with this blog), as if to imply, "Can she at least do THAT?".  Now, in my friend's case Claire can read, but not because her mother's been grilling her for years or shoving phonics down her throat since she was two (that's more my striving style than my BFF's developmentally appropriate method).  What really, really struck me about that whole exchange was, well what if Claire COULDN'T read?  Would she be pitied?  Would my friend and her family be judged because of it?  Would Claire still have value as a human being or did Claire just go up a notch in the eyes of their former pals because she CAN read?   To my friend's credit she said "yes", but in such a way that the conversation wasn't pursued.  My friend can not STAND striving and can see right through the schemes (it's no small miracle that we're friends and I'm the beneficiary of some serious wisdom from this woman).  I just see a lot of striving in the disability community, as if we have to prove to the world that our kids DESERVE to live.  And thanks to Roe v. Wade and the fact that over 90% of babies identified (correctly or incorrectly) in-utero as having Trisomy 21 are aborted, maybe we DO have a lot to prove.

  So today I take a few minutes to celebrate Hayden for being Hayden.  He's 13 years old and he LIVES for music.  Right now he's TOTALLY into the TV show "Yo Gabba Gabba", although his first love, Signing Time, is a very close second.  He reads and recognizes some words and his current favorite books are Dr. Seuss's "Hop On Pop" and "The Dr. Seuss Songbook" (both from Jeff's and my childhood collections).  He can spend HOURS in his room reading his sign language cards.  He loves to play on his sister's old violin.  He's learning to catch a ball and he rides his bike (with training wheels) under diress.  Within weeks of moving to L.A. he heard Vin Scully calling a Dodger's game on TV and he's been a Dodger fan ever since.  We have pictures of him taking batting practice, ala Manny Ramirez, in the reflection of our siding glass door and it's pure joy.  He reads many words, signs even more, and he can hear and understand a staggering amount considering he has severe to profound hearing loss.  Most of the time when we go through our reading words he signs what I say, even if he doesn't "read" the word for himself"  He is CONSTANTLY learning, but often times doesn't want you to know what HE knows.  It's all a game to keep Mom and Dad guessing!

  Hayden, thanks for being you!  Thank you for teaching ME that a person needs to be treasured and honored because God made you special and He loves you very much!!  Everyday you teach me that you have nothing to prove and that I'm the one with the unwieldly baggage.

Thursday, October 6, 2011

The Ironman

  One of the things I celebrate during National Down Syndrome Awareness Month is Hayden's strength.  He's 13 now and Jackie Chan has nothing on how he can instantly turn you inside out with a quick twist of a finger (he pretends he just wants to hold your hand and then WAAAHHH, he's twisting your finger and you're begging for mercy), but I'm talking about an entirely different animal.

  I'm talking about Hayden's core strength of character and resolve.  Maybe he somehow knew he was going to have to endure countless tests, surgeries, ear exams where he had to be held down by an entire clinic staff just to see inside his ear canal, EEG's, a spinal tap, and more blood draws than I count.  I honestly don't know how he's done it all.  I should, I mean I was there for everything, but much of it is a blur to me now, probably because I don't ever want to revisit what I hope will always remain history.  It takes my breath away to think about what he's gone through; like the time when he was six years old and he had a central line in his chest to deliver some of the most potent drugs known to man for his life-threatening ear infections and he pulled the line out of his chest first thing in the morning.  Ya, like the line had been SURGICALLY placed into his chest (full anesthesia--big operation) and the surgeon and post-op nurses assured us that THE LINE WOULD NOT COME OUT......because it's clamped INSIDE of him.  Two weeks later he PULLED it out.  Crazy kid.  Did he cry?  NO!!!  Did he care??  NO!!  Was my husband, who discovered the trail of blood drops across his bedroom floor, curled up in a fetal position turning various shades of grey??  YES!!  And you know what happens on the day you're scheduled (or NOT scheduled as in this case) for surgery?  You can't eat!!  So before we could pack him full of breakfast, we quickly called our doctor, told him what was going on, made arrangements for our daughter to spend the day and night and a friend's house, and made the trip to the hospital where he would have the surgery 40 miles away.  Here's what totally blew me away about Hayden ALL DAY that day: he didn't once ask for food or water, or whine, or protest anything.  It was like he knew something was up.....he knew in his heart of hearts it was going to be a VERY L O N G day full of waiting, pre-op procedures, blood draws until finally being admitted to the hospital.  He blew me away with his calm resolve.

  There are SO MANY things I wish I could tell that parent who has just been told that the baby they're carrying may have Down syndrome ("may" being the HIGHLY operative word here as many in-utero tests turn out to be completely wrong) or the baby they've just given birth to has Down syndrome.  But I think the biggest news I have for them is that "It really IS going to be OKAY.  Your baby is STRONGER than you know and stronger than you ARE.  No matter what his/her future is, he/she will get you through it".  Does that mean it's going to be smooth sailing for that baby born with Down syndrome?  I wish I could say yes, but of course I can't. Does every baby born with Down syndrome have a path of trauma and medical difficulties in front of them?  Nope, some babies don't have any major medical issues.  But I do know beyond a shadow of a doubt, that no matter what lies ahead, our kids have a strength that we can only hope will rub off on us. 

  With Hayden, beng born deaf instantly put us on a mission to find out why and that led doctors and specialists to discover some pretty catastrophic ear infections just a little too close to the brain for comfort (think encephylitis and permanent brain damage), which led to eight reconstructive ear surgeries and tympanomastoidectomies.  We also had to figure out why he needed O2 at birth, which turned out to be a small hole in the left ventrical of his heart (not uncommon for babies born prematurely or babies with Down syndrome, especially at high elevations), which was surgically repaired when he was four weeks old (in the scope of heart surgeries, the "PDA ligation" as it's called, is relatively minor, but it's still your newborn baby with a hole in his heart being put completely under anasthesia, where there are NEVER any guarantees).  Hayden contracted Infantile Spasms when he was six months old and it is ONLY by grace that he is here with us today.  I will probably never fully understand what it's taken for him to fight to regain all the development and core of "who" he was before the seizures took over.  That is strength.

  I'm sincerely happy for people who've worked hard enough and consistently enough to earn a trophy for anything, but inside I will always know who's the strongest of them all, and they don't make trophies big enough for that.

Wednesday, October 5, 2011

Axl Is In The House

  Thanks to a friend of mine who shares my passion for the tv show "Everybody Loves Raymond", we are now completely hooked on Patricia Heaton's new show called "The Middle".  "How can I possibly love anything as much as much as "Raymond"?" I protested, but she promised me I would love it, and love it we do.  At first I thought it hooked us because in the show the youngest child is "quirky".....like how some kids with Asperger's are "quirky" and the parallels between that character and our daughter are too numerous and hysterically funny to name.  But about mid-way through watching the first season shows via Netflix, we realized that we also love the show because Hayden acts EXACTLY like the oldest kid in the show, Axl.  In the show, Axl is about 14 or 15 and he's constantly slouching around the house (in boxers only) and complaining how everything is "lame".  "This dinner is lame", he'll whine, or "homework is lame", "having to clean my room is lame", etc.... 

  Now you may be wondering what does THAT have to do with National Down Syndrome Awareness Month?  Nothing actually, I suppose.  I just really like "The Middle".  I laugh my head off just about every episode and I think it captures the average American family pretty well and can see us as the parents and our kids in many of the scenese.  For instance, we've realized that Hayden acts JUST LIKE Axl.  Only without the words, because Hayden doesn't really talk in full blown conversations........yet.  But if he could, the thought bubble over his head would often read, "This___________is lame".....like when he sits down to the dinner table to eat......well, anything other than a peanut butter and jellly sandwiches (Hayden is a lousy eater and we don't exactly celebrate that aspect of his Down syndrome, but he IS an individual and he has a VERY strong personality, so we do celebrate that).  You can also see the bubble when I try to get him to help me make his bed in the mornings.  He usually grunts and yells as I'm forcing his hands to push the covers under his mattress as if to say, "making my bed is lame, Mom.  I'm just gonna sleep in it tonight anyway!"  Or when we then go to the bathroom to brush his hair the bubble reads, "Brushing my hair is SO lame! I'm not going anywhere today, why do I have to look good?  This is so lame!"  Or when he parades through the house with the remote control thrusting it into my hand and signing "Signting Time", as if to say, "I need tv now Mom", and when I say "No, you've had enough Signing Time for the day", he'll say "Noooo!', and stomp off with the bubble over his head, "It's so lame that I can't watch Signing Time all day everyday".  Then there was the time a couple of weeks ago, I think it was our daughter's second Saturday morning soccer game, where Hayden kicked the ball around a little before the game started, but quickly sat down and proceeded to put his head in his lap for the rest of the game as if to say, "Getting up before Noon on a Saturday to come watch your sister's soccer game is SO LAME".

  Be patient with us Hayden, maybe some day your coolness will cancel out some of our lameness.

Tuesday, October 4, 2011

Hayden Teaches Us To Read

  It must have been when Hayden was between one and two years old when we became acutely aware that Hayden was very decidedly choosing whom he liked and didn't like.  He had probably been giving us signals all along, but we have cognitive delays and can be a bit slow in our learning so it took us awhile to catch on.  One day we were assigned a new OT (occupational therapist) through our local early intervention agency and she came into our home with a Game Plan.  She knew just what she was going to do with and for Hayden who had DOWN SYNDROME.    SHRIEK!!!!!  What was that I heard?  Can you smell burning brake pads?? If I hadn't seen it with my own two eyes the second it happened I wouldn't have believed it:  Mr. Flirty-I-Love-Everyone-Who-Comes-To-My-House-To-Play-With-Me was mad as a hornet with this new OT and he was done with her before she completely unpacked her bag of tricks.

  My husband was home at the time working out of his office, just feet from the playroom and he heard the shrieking sound of the brakes too;  the grunts, the frustrated tone of voice, the cajoling begging tone of the OT.  Nope, Mr. H wasn't going to have any of it.  He was used to OT's who would engage him with smiles and playing, and singing  AS they put him through his course of exercises (life IS a cabaret after all).  This new lady was JUST here to work on what SHE wanted to do with no regard for how to motivate and connect with The Prince.  She lasted three visits....maybe.

  Fast forward a few weeks to a weekly sensory-based playgroup that was facilitated by a wonderful OT, but on this particular day she wasn't there, so we had a substitute OT for the day. After the incident in our home with the Drill Sergeant OT (now, a former OT), my radar was up, and I was now fully aware that Hayden wasn't going to perform for just anyone.  He had standards. When we walked into the large playroom (I remember this like it was yesterday) the substitute OT was sitting on the floor playing with a couple of little ones and I had Hayden's baby sister in a carrier in one arm while carrying Hayden in the other (yes, I carried BOTH babies for nearly four years......apparently I WAS standing in the line where God was handing out arms and shoulders the size of  linebackers).  I put him down on the floor so he could scoot/crawl/roll while I met the new OT (she was all smiles and I knew I could feel the love, but what would Hayden think?).  I told her that she was welcome to try to play with Hayden, but that he didn't respond too well to "agendas" and it might take him awhile to warm up to her.  She smiled and said, "Well ya know what?  I don't like agendas at all, I just love kids!"  By the time the sentence was out of her mouth, Hayden had crawled up into her arms and she was giving him a bear hug while he giggled and giggled.  Does this playgroup have any kleenex?? 

That scene still chokes me up, on so many levels.  First of all Hayden was telling me that his spirit could EASILY discern who the "good guys" were and if I would just "tune into HIS radio station" I could learn something (see, that career in radio was about to pay dividends in the relationship arena.....because we know it never paid in the financial arena!!).  The other thing I learned was that only the "professionals" who possessed TRUE humility were going to be able to "teach" him anything.  And of course the truly humble folks know that the kids are the ones who are teaching us first and foremost.  We're just here to guide, and direct, and help focus their energy.

  Kathy the OT was the first in a long line of people whom Hayden would "choose".  Since then we've learned to watch him very carefully in ALL settings: with family, friends, church, wedding receptions, meeting new people, therapies, etc....If Hayden is comfortable, then we're likely to be more open to the person/situation.  Sometimes (okay, more often than I want to admit) we'll be in a store and Hayden will reach out and touch someone.  He doesn't do it as much now, but it used to be that he would start singing with them. Maybe now that he's 13, he figures he's too cool to just break out in song with total strangers, but it used to be that a trip to Target or the grocery store meant that some unsuspecting soul was going to be serenaded whether they wanted to be or not.  You can tell a lot about what's going on with someones psyche/emotional state when a boy in a shopping cart reaches for their hand and starts to sing them "The Itsy Bitsy Spider".  More times than not, people have been very receptive, and the people he chooses are eight of ten times the elderly.  Maybe he knows they haven't sung Twinkle Twinkle Little Star in a long time, or maybe he can sense that they need a smile and some eye contact that day.  Because that's really what it's all about for Hayden, making that heart connection.  And that's probably why people are so surprised when they discover that he has profound hearing loss.  He was born deaf, has some hearing now (even better when he's wearing his hearing aids), and is here to connect with people on a heart level.

  I can hear you just fine H and your station is on all my pre-sets.

Monday, October 3, 2011

Perfect From The Start

  One of the first major principles that I learned in the first few weeks of being Hayden's mom was what it means to be perfect.  I mean, here we were bringing home from the hospital what the world would call a "disabled" child, a "defective" baby.  (I would later learn that 90% of all babies identified, either correctly or incorrectly, in utero as having Trisomy 21 are aborted).  He had this thing called DOWN syndrome for crying out loud!  He was different than all the other babies in the newborn nursery.  The doctors had to determine "what was wrong with him" from the minute he was born and when his characteristics matched enough, he was given the label of Down syndrome (a few days later a blood test called a keratype would confirm that).  All of these terms and defnitions floated around in my head as I had him home with me spending HOURS gazing into his amazing little face.  I searched for what was "wrong" with him but couldn't find much.  Sure, we were concerned about him being on oxygen, even though the valve on the tank only needed to be barely open for him to saturate at 99% or above, and we wanted to know how long that was going to last, but other than that, I just couldn't see what was "wrong" with our new baby.

  So what does the word perfect mean anyway?  Everybody always talks about bringing home a "perfectly healthy baby boy or girl", but what does that REALLY mean?  I had grown up with the phrase "God doesn't make junk" and there's that verse in Psalm 139 where David is talking about how God had known his innermost parts since he was in his mother's womb, so the idea that God was the Creator and Divine Inspiration for each and everyone of us wasn't foreign to me.  But clearly not everyone was on board with the philosophy that God was THE designer of each of us because people everywhere, and certainly in religious circles, were VERY upset, sad, and even grief stricken when any baby was born with something "wrong" with it,  something like DOWN SYNDROME.  And I wanted a quick answer to have for those people who were in anyway going to feel sorry for us as parents, or for Hayden.

  I learned that "perfect" essentially means "complete".  It's a Greek word that Aristotle used to describe something that had attained its purpose, it was complete in and of itself, and something so good that nothing of the kind could be better.  I immediately felt FREE.  I knew Hayden was perfect!  Yep, he had an extra chromosome (and I had made it my mission to read everything ever written on the subject, even going to the......get this:  THE LIBRARY.  A building that house millions upon million pieces of paper with information typed on them.  Hayden's SO old that I had to search by hand periodicals (magazines) for articles on Down syndrome.  Ya, I was that thirsty for knowledge!), and for sure his little body was floppy, but he was COMPLETE.  He was exactly how God designed him to be.  Whew

  Knowing Hayden was perfect just the way he was born completely changed the lense through which I saw (and see) the entire world.  Yep, Hayden was born with extra genetic material (along with thousands of other people).  Yep, some things in life might be harder for him to master because of that extra chromosome, maybe some things he would never be able to do, only time would tell.  But for now, my perfect baby was perfectly happy and content in my arms.  Thank you Hayden for teaching me about perfection and so much more!!

Sunday, October 2, 2011

What Will The Neighbors Think?

  When you bring a baby home from the hospital, it's totally natural for everyone in your life to want to know everything about that baby.  They want to be connected with you in your newly unfolding story and they are ready to celebrate your new joy with you  In our case, our friends and family, most importantly both sets of our parents, had been with us on a VERY wild and VERY tragic ride through the foster-to-adopt process.  The week before Hayden was born our second foster-adopt baby (the younger brother in the sibling set) had been sent back to the family that had tried to kill him through starvation (he had been placed with us after being admitted to the hospital at 4 1/2 months old and weighing only 9lbs).  He turned one year old the day Hayden was born.  To say we had conflicting emotions and were a bit jumbled doesn't even BEGIN to describe our pysches at the time.  But God knew.  God knew what we needed and He began speaking into the hearts of friends and strangers even before we brought him and his oxygen tubing home from the hospital.

  As I began telling close friends about the possibility of bringing home another baby, another foster-to-adopt baby, I did so with no small amount of trepedation.  No one in our circle of friends was an adoptive family.  There wasn't adoption on either side of our families that we knew of. We were breaking new ground and just because we knew this was the path that was going to lead us to build our family (I got "the call" to adopt when I was 16 and knew it like I knew my own name that I wanted only to adopt my children. It was my first choice and my only choice; the "calling"on my life), it didn't mean we could count on our close friends and families to share that conviction, especially after having recently watched two innocent children get completely run over by the so-called "child welfare system".  Would they understand after losing a baby just days before, how we could bring home another one, and not just a "regular" baby, this one already had a label that meant "broken", "disabled", "special needs"?.  So many questions came home from the hospital with us.

  Enter another "thought bubble", this one appeared again as Jeff and I were walking across the hospital parking lot to visit  Hayden during his seven day stay at Club Newborn Nursery.  The bubble read, "There are no guarantees", and I turned to Jeff and said, "Ya know, there are NO guarantees with ANY baby.  Babies who are born perfectly healthy sometimes develop horrible diseases, some kids die in accidents, some grow into adulthood and make LOUSY choices for their lives (hence the penal system). What's the difference with THIS child?"  He paused for a minute and said, "Ya, you're right. It's no different for this one".  And the issue was settled.  For us.

  Some time during that week as I was going back and forth from the hospital, I talked with my ballet teacher on the phone.  For years she had been a sounding board for me, a mentor, a compassionate shoulder on which I had leaned many times, especially during the previous year when we had entered the very murky waters of the foster-to-adopt process.  She had been praying over us that week, but at this point she didn't know what the baby's name was.  But she said over and over in her mind she kept seeing the name "Jacob", a baby named Jacob and he was going to come home with us.  Shivers sped up and down my spine.  The first confirmation.

  After being home from the hospital for a week or so, a friend and I went to a women's conference in Denver.  We had purchased the tickets long before my life had erupted and long before we could even fathom bringing home a newborn baby WITH SPECIAL NEEDS.  My friend had a new baby too, having given birth in early July, so there we were; my friend and her new baby (this was my friend's 5th baby so nothing phased her at this point), Hayden, his portable oxygen tanks and enough tubing to go to the moon and back three times, and me, who wanted to be a mom more than anything in the world.  In our short time together as a new little family we had already experienced many miracles: I hadn't strangled myself, the dogs or Hayden with the oxygen tubing that was in every room and on every level of our house,  and I even managed to have the oxygen TURNED ON, (all the time I think-I gave myself gold stars everyday for this no-small-feat).  Hayden was breathing and eating, so why not take the show on the road?  And so we went.  It was the first time I had ever been to such a huge conference, and I was more than a little intimidated, more than a little worried that I was going to trip over the oxygen tubing, drop Hayden in his carrier, or that people were going to stare at my baby WITH SPECIAL NEEDS.  So quite honestly I don't remember alot about the conference, except to say it was fantastic; the teaching was amazing, the encouragement was genuine, and the spirit in the place was authentic. 

  At some point during the first day we broke for lunch and my friend left me to go look at the book tables.  I wasn't up for lugging Hayden and all his accessories up and down the stairs with 20,000 of my closest friends, so I hung out in the seating area and stretched my legs.  Before I knew what was happening, a woman was standing next to me admiring Hayden and telling me how precious and beautiful he was.  I agreed (I was emotionally exhausted but not blind).  Then she asked if she could pray for Hayden, and I said, "sure".  I mean, who wouldn't want someone to pray over their new baby?  This woman couldn't possibly know all the back-story of my wacky life and she couldn't possibly know the circumstances of how this baby came to rest in the baby carrier in my arms.  So she prayed.  Some of the details I've forgotten, but I remember her saying that he was a VERY SPECIAL baby and that he was going to have a life of power,  a life of healing (like he was going to be the healer) and that he was already touched by God.  She closed the prayer with the usual "amen", I looked up to her face.....but she was gone.  Like, nowhere to be found gone.  Like, as were standing there praying together, there were 15 or 20 women milling around in our section and when I looked up it was just Hayden and me within ten rows.  Suddenly I needed to use the little girl's room.

  I came back from the conference not remembering one detail of what had been taught, but with a new found confidence in my gut and heart.

Saturday, October 1, 2011

Celebrating The Extra In October

  Today marks the beginning of Down Syndrome Awareness Month, so it only seems fitting that in honor of Hayden, I should try to recount the very first moment that I became "aware" of Down syndrome in my life.  Be patient, it's a wild ride, but I remember it vividly.

  As I was driving one summer day in 1998, I turned a corner and a  little thought bubble crossed the top of my brain that read, "what about Down syndrome?" and the implication of that little thought was "what about a baby with Down syndrome?"  I shrugged and said to myself, "Hmmm, Down syndrome, that doesn't sound like a big deal", and a I let the thought go.  (A little excursion off the beaten path here to explain that my husband and I had been in our county's foster-to-adopt program for nearly a year and had already had a sibling set temporarily placed with us, with the youngest, a baby, still with us) Fast forward a few weeks: life had gone full-speed ahead and not at all in the direction we had wanted, but I"ll get to that part in a minute.  I was on the phone congratulating a friend whose baby's adoption had just been finalized that day, and he told me that that as they were leaving the courthouse that afternoon, their DSS case worker told them about a baby who had just been born, who needed to be placed as soon as possible and that this baby, a girl he thought, had Down syndrome.  Since that thought bubble appeared in mind, we lost our second baby, just a week before, and had arrived back in town few hours earlier from an out of town hike-and-grieve-at-timberline-camping-trip.  I didn't mention anything about this new baby to Jeff that night, as we were both emotionally and physically exhausted and VERY raw, but called our caseworker the next day to see if she knew anything about this baby girl.  She said she didn't, but she'd do some digging and get back to me.  Within minutes she called back and said the baby was a boy, still at the hospital, the mom had decided to relinquish the baby and that so far there were no prospective foster-to-adopt families.  I called Jeff on his lunch hour, gave him the sketchy details and by 3:30 were were in the hospital nursery and I was feeding a precious hours-old baby boy a bottle.  It took him longer to drink his bottle than for me to fall in love.

  We had SO many questions; Why was his mother NOT taking him home from the hospital?  Was she SURE she couldn't raise him? Could we actually take him home without fear of the mom changing her mind and us suffering another horrific loss?  Were we ready for even the slightest possibility that could happen?  Would any social worker in their right mind actually GIVE us a baby a) so soon after losing our first two children and b) would they actually place a baby who had a disability (and who was coming home on oxygen, no less) with US??  We barely managed to keep ourselves afloat in life, could we care for a baby with "special needs"? And these weren't the only questions.  We wanted to know things like, what exactly was Down syndrome and what did it mean for his future?  I mean, what do people with Down syndrome actually DO with their lives?  Do they go to school?  Do they read, write and participate in all of life's activities like boy scouts, soccer, baseball, climbing on monkey bars and annoying their sisters and brothers?  Was he going to have a "normal" life?  Fortunately for our caseworkers and the on-call pediatrician covering the nursery that week, we didn't want all those answers right away, just by the time the baby was going to be discharged from the hospital, which turned out to be seven days.

  Within those seven days of going back and forth from the hospital (I spent all day everyday in the nursery with him, holding him, talking to him, reading to him and feeding him), the next biggest question we had was "What would we name him?"  His birth mom had given him a name, Jacob, and that was fine, but we wanted to give him something special from us.  Enter the next thought-bubble: This one happened as Jeff and I were walking across the hospital parking lot getting ready to see this baby again, probably only a day after seeing him for the first time.  I said, "Hayden!" and Jeff said, "Uh, my name's Jeff, not Hayden" "NO DOOFUS!! for the baby!!!  Let's name him Hayden!", to which Jeff said, "Oh, the famous football coach from the University of Iowa-sounds good!".  "Ya, that's it honey, I want to name my baby boy after a football coach. Uh, NO....it's just a name that popped into my head, what do you think?", I asked. He thought for a few seconds and then said, "Sounds good to me", and the deal was done.  Hayden had a name.  In the meantime, word had spread among friends and family in our fare town that we were getting a new baby.  A special baby.  A baby that might need some extra care. 

  This story wouldn't be complete if I didn't share a conversation I had with a complete stranger on Wednesday evening of that week (the day after seeing Hayden for the first time), because that's when I actually became"aware" of what Down syndrome was and what it wasn't.  I remembered working with a guy at the health food store who told me that his mom helped families in our town whose babies are born with disabilities find the services and therapies they need (which was a big news flash to my naive mind: "there are little kids with disabilities? hmmm, who knew? I thought).  Turns out this guy's older brother had this "Down syndrome" thing, so I found his mom's number in the phone book (if you have to take a minute to scratch your head to remember what a phone book was, that's okay, this was "back in the day", WAY back in 1998) and she generously spent the next hour and a half "schooling me" on all things disability as it related to having a baby with Down syndrome.  She shared with me with me how kids with disabilities can have VERY rich and very "normal" lives, compared to when her son was a baby.  She explained how health care, for one thing, had come so far and that most children with Down syndrome are no longer sickly and frail.  She told me how Hayden would play with other kids his age, he would go to school with his neighborhood peers, he would be able play t-ball if he wanted, and now days he could join Cub Scouts, and that "now days" kids with disabilities were being included in all aspects of what we call "normal" life.  It was a conversation of hope and light and it was just what I need to hear to push forward.

  When it was time to come home the next Sunday, we came home with was a brand new shiny baby boy, sporting a dashing cannula, one oxygen tank, one apnea meter (when we left the hospital I was in a cold-sweat over this whole "apnea" thing. I had NO idea what "apnea" was or if it was contagious.....were the dogs going to catch it?, 'cause that would be bad, I thought), and enough oxygen tubing to go from our house to the moon three times, and a few more pressing questions.  The oxygen dude was at our house before we made the 14 minute trek home from the hospital.  Completely convinced that I was the LAST PERSON ON EARTH who should be trusted with ANY kind of medical equipment to be used on a real live human baby, I offered (okay, I begged) the oxygen dude to stay in our spare bedroom where I promised him he would be comfortable for as long as this baby would need all that stuff (and considering we lived nearly a mile high in Southern Colorado, who knew how long that would be, but I was hoping we'd be free from it by the time he turned six).  He was saner than I was, so he thought I was joking, and he casually jogged to his oxygen-dude van.  "No really, come back here!!  What do I do when that thingy beeps??  How do I know to change out the tanks?" And poof, he was gone.  Fortunately though, as the oxygen dude was burning rubber away from our house, in walked the home health care nurse that would ease us through the transition of bringing-home-a-baby-on-oxygen.  And she was great.  I felt like as long as she was making her daily visits to check his weight, his temperature, and O2 stats (that's medical mom lingo for oxygen stats-how much oxygen is his body saturating?...80%, 90%, 99%? how much O2 is he getting without the giant green tank?) the chances were slim that I was going to do something "wrong" with this BABY WHO HAD SPECIAL NEEDS (I still had NO clue what that actually meant for our everyday lives).  Before the nice nurse lady was out the door after her first visit, Hayden and I were nestled in bed (with our ever-vigilant-Westies snoring at the corners), for our first nap together.  The thought bubble over my head read, "aaah".  Most of the questions we had at the beginning of the week that seemed so urgent, remained unanswered, but for now, we were a Mom and Dad and baby boy......and enough oxygen tubing to go to the moon and back.

 Hayden on his bike at the beach, June 11

"What can I say? It's cool to be me!"

Watching his favorite sport (baseball) with Dad

Just fiddlin' around, Aug. 11

Friday, September 30, 2011

It's A Gakky Kind Of Day

Mixing it up

What it looks like at the beginning stages of kneading

"Remember life before "Gak"?  Ask any parent of a child with sensory integration dysfunction and they'll probably say, "No"!  More telling, they'll probably add, "is life worth living without Gak? "why would anyone do that?"  The rest of you, either NT's  yourself (neuro-typicals) or parents of NT's are no doubt already lost in this conversation and are seriously considering flipping pages to the next blog.  No worries, Gak is one of those wonderful playtime activities that transcends labels of "dis" and "ability"; all kids are fascinated by it and most, if not all, will at least try to touch it at least once. 

Gak is an ooey-gooey substance that is silky to the touch and flows through your hand like cooled pudding.  You can easily hide little toys in it and have your kids try to find them, and it easily washes off of most surfaces (except upholstery and carpetting).  It doesn't "stick" to your skin exactly but you can hold it.  It's something you'll just have to try for yourself.  We make our Gak on the kitchen floor, or another surface that can be easily wiped up with a sponge, and it's a good idea to have your kids wear short sleeved shirts as they're making it so it doesn't get everywhere.  Even making the Gak is a GREAT sensory experience, as you have to knead it for at least five minutes to incorporate LOTS of air into the mixture from the beginning so you can develop the gelatinous goo.  Today when we made our Gak, it might have been the humidity level, or maybe my daughter didn't "work it" hard enough in the early stages, but after a few minutes the water was still completely separated from the glue/water and borax/water mixtures, so I got out my handy-dandy stick blender and whipped some air into it, and within a minute we had Gak (if you use this trick, be sure not to keep your stick blender in the runny mixture for too long or you'll burn up your motor).  It quickly developed into the thick and gooey Gak we all know and love and my daughter was thrilled.  Depending on how your child reacts, whether your child dives right in or just pokes a finger in it, can be very telling as to his sensory status at that moment; is he sensory averting or sensory seeking? 

I was first introduced to Gak when Hayden was a wee little toddler, not yet walking, talking or feeding himself and our daughter was an infant. We were in a sensory integration playgroup for adoptive children and the brilliant Occupational Therapist, Debbie, who taught us oh-so-much-about-brain-and-all-things-sensory/behavior introduced it to us and all of us parents thought it was manna from heaven for our kids.  Our son, who was only 16 months older than our new baby girl, had super low muscle tone and lots of texture aversions.  The first time he ever beared weight on his legs, he was standing against a kidney-shaped table with his other little friends, hand elbow-deep in Gak.  If I could find that picture I'd post it here--it's precious.  So what was happening in Hayden's little body at that time was that his mind was so focused on the feeling and texture of the gak, that he forgot about his legs for a few minutes and stood strong (albeit his hips and knees were "fixed" in position, definitely not optimal, but it was a starting point and I don't think any PT would mind too much!).  As soon as our daughter was old enough to put her hands in the stuff, she did, with our help and LOVED it from the first second.  And the rest, they say, is Gak History.

Fast forward a decade and we still love the stuff.  Our daughter was having a rather tough morning dealing with some sensory stuff (often we can never tease out of the soup exactly what is going on at any given moment).  She had already bounced a little on the trampoline and kicked a plastic ball against the hedge and the back of the house until she felt better (and she was rewarded with beads for letting her dad and I help her through that "chaosy" moment and then taking our suggestions).  We read a little bit more in ancient art history (you can never know too much about high and low relief, cameo, plaster casts, and so on...) and then I suggested making some Gak.  Her eyes instantly lit up and we got to work.  Of course we made it blue, because blue, well blue is just simply THE BEST COLOR EVER, according to the Aspie.

Here's the recipe:

 In one medium blow, mix:

 *one cup of hot water

*one cup of white glue

In another medium bowl, mix:

 *one cup of hot water

 *1TBSP Boraxso (or Borax) hand cleaner

 * Add 2-3 drops of food coloring if you wish

 Mix the two bowls together using your hands! Be sure to knead in all of the water. It may take 5-10 minutes of kneading.

  Store gak in an airtight container, and keep for up to a month.

 Fun things to do with GAK
 *Hide toys or small objects (marbles work really well)

 *Use a straw to blow gak bubbles and make silly noises (blowing through a straw is a VERY good sensory thing to do when a child is disorganized or unable to control him/herself-it centers the brain)

 *Squeeze, stretch, jiggle and poke

 Things to AVOID with GAK:

*GAK is not yummy or edible

*If left sitting on a flat surface, gake will find its way to the floor and make a MESS

*Keep away from carpet and upholstery

"Squishing it is SO much fun!"

Blowing bubbles