The Face of Autism (for me)…

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This is Alex.  If you ask him who he is, he’ll say “Alex, A-L-E-X spells Alex”.  He can’t communicate like you or I but his mind is so beautiful.  When he’s happy, he flaps his hands like he’s going to fly away.  Or he’ll spin in circles.  Right now, he’s happy because he’s had his “Cookie Crisp cereal” without milk and his apple juice.  He has to have a routine in order to have his world make sense to him.  He’s happy because we gave him his books.  His WORD books with pictures of animals.  The words never change in these books and the pictures stay the same.  He lives for equations and order.

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(me and AlLex at the park)

Alex is 7 years old now.  He’s not mine but he calls me “Auntie Shewell” (it sounds like Antie Shoowoool).  I’ve been in his life since before he was born.  My friends, who were married at the time but aren’t any longer, decided to have a baby later in life.  Alex’s mom and dad were almost 40.  They were SO happy the day they found out their new baby would be a boy.  Jerry only had girls and he wanted a boy to be rough and tough like he is.  Dianna just wanted a healthy baby. Alex WAS healthy.  In fact, the day he was born, we were amazed at how calm and alert he was.  He was SO pretty.  Prettier than a girl and too pretty to be a new born.

As time went on, I felt like something was different.  I’ve always been able to bond with babies but I couldn’t bond with A-L-E-X.  He didn’t respond to me and it was hard for me to connect.  He’d cry or become agitated.  His mom had a group called “Parents as Teachers” come in every so often.  She did this because she was a good mom and wanted to see how well he was developing.  It wasn’t because she felt something was wrong with him.  She knew he was different because he wouldn’t nurse like her other babies nursed.  He would hurt her and she couldn’t make him do it the right way, sometimes.  Other than that, he was just a little different.  Parents as Teachers immediately discovered that A-L-E-X was more than different.  There was something developmentally wrong.  They weren’t sure WHAT it was.  They suspected Autism but when they’d ask Dianna to have him be seen by a neurosurgeon, or a specialist, she’d STRONGLY reject.  She didn’t want something to be wrong with her baby.  Jerry had a different approach.  He always had the attitude that if something was wrong with his son, they’d get help and deal with it the best way they could.  In Dianna’s defense, she’d already had a son with Asperger’s Syndrome.  She’d already been through so much with Alex’s older brother.  She only wanted a perfect son and for the world to accept Alex as a normal, beautiful boy.  I felt so sad for her.  NOT because I felt like Alex was a problem.  But because I could see that she was struggling.  Eventually, Dianna didn’t want Parents as teachers to come into her home anymore because she felt like they were trying to force their opinion on her and that they were trying to label her son unjustly.  I think Denial is normal.

When Alex was 18 months, it couldn’t be denied anymore.  We ALL saw it.  Dianna was still in denial.  As he grew to be a toddler, he couldn’t speak.  She’d try SO hard to teach him but he just couldn’t.  He ran around the house and flapped his arms like a bird.  Sometimes, it looked as if his little arms would break right off his shoulders!  It became embarrassing for her when she’d bring him out in public.  She felt like she needed to explain his behavior to strangers, when they’d stare at him.  She tried to make him stop but she couldn’t.  He didn’t play like normal kids played.  He remained in his own little world and there’d be no room for other people in that world.  He’d become EXTREMELY agitated when noise happened.  Certain sounds made him scared or mad.  He especially didn’t like some little boys who made noise.  He’d put his hands over his ears and throw himself on the ground and scream when he was around his nephew (who was born the same year as Alex).  The activity that Alex enjoyed most was reading phone books or manuals.  He didn’t want us to touch his books either.  It was like Rainman, where words and numbers comforted him.

At this point, even Dianna couldn’t deny there was an issue.  She tried but she couldn’t.  We ALL tiptoed around the word “Autism” because she didn’t want that word spoken around her.  I’m not sure how I did it, but I was able to talk her into having a neuro surgeon look at Alex.  I went with her.  It was sad, but within the first few minutes of our visit, Alex was diagnosed with full blown Autism.  Dianna cried as she learned that her precious baby would have to be medicated and that he’d never be a normal kid or be able to live on his own one day. He wasn’t just SLIGHTLY Autistic, like we’d hoped.  He didn’t just have Aspergers Syndrome, like his older brother Josh.  He was a severe case on the Autism spectrum.  Dianna has struggle with the need for medication ever since.  He takes medication but not as prescribed and only when she feels like he needs it.  I can’t judge this because I haven’t walked in her shoes.  I struggled when my daughter was diagnosed with ADHD.  I couldn’t imagine her needing to be on medication for the rest of her life.

That was just a brief background.  His little life, to me, is interesting enough to have a book written about him.  In the interest of time, I’ll try to wrap this up.

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(Here he is with singing with his Kindergarten class on his graduation day)

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(I gave him a shovel to help me do my planting and he really tried)

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(Alex is plugging his ears because he doesn’t like to be anywhere around his nephew Trevor)

Alex’s mom and dad have been divorced for a few years now.  Despite what people SEE, Autistic kids really DO have feelings.  He was attached to his daddy and his big yard and his big house.  When Dianna was forced to move him to a small apartment with NO yard, his little world crumbled.  Some aspects of his life are good now.  He’s able to fit in at school and has learned SO much.  He can talk and spell and he’s learned to express his emotions.  He’ll say “Happy” and then smile.  He’ll say “Sad” and then make a frowny face.  He’s learned to tell us what he wants, but we have to give him choices.  For example, I’ll say, “Do you want cereal?” and he’ll repeat the word “cereal”.  I’ll ask him, “would you like alphabet or cookie cereal?”.  He’ll tell me “cookie”.  Sometimes, he’ll spell what he wants.

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(playing my piano when he was 5 years old)

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(laying on the floor keeping time with the music)

Alex loves classical music.  His mom has been playing it for him since he was born.  He can go to my piano or a keyboard and play (in ANY key), Mozart or Beethoven.  He played “Ode to Joy” the other day and he’ll tell you what he’s playing.  He played it in all “sharps”.  He CAN play it in all flats.  I think he’ll be a musical genius.  Not just saying that.  He LOVES my house because I have a piano AND a keyboard.  It’s like heaven to him. Oh and he LOVES our little Beagle named DIxie!  She doesn’t love him, sometimes, but he’s gentle with her and loves to chase her and show her affection.

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(Alex loving on Dixie with his big brother Josh, who has Aspergers)

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(here he is playing with my tea cups.  He loves playing tea party and he never breaks the delicate china!)

He’s here now with us and has been since yesterday.  His Mommy has to work 12 hour shifts all weekend and his sister has her own baby and needs some time away from little Alex.  There would have been a day when he couldn’t have spent the night.  Separation anxiety would have been too strong for me to overcome because he didn’t like being away from his mom or dad.  NOW, Alex loves me.  He can’t stop hugging me or kissing me.  He wants me to hold him like a baby and he wants me to wrestle with him so I do.  He loves to play games, he just can’t follow rules.  He’s an absolute joy for me. I’d have him ALL the time, if my husband would allow it.  Hubby is getting to the point where he doesn’t like noise and wants peace and quiet.  Of our 5 kids, only 1 is still at home and he likes it that way.  I’m NOT there yet and miss my kids being around.  However, hubby never shows Alex that he doesn’t want him here.  In fact, right now, he’s going over to Dianna’s house to get Alex’s bicycle so we can take this boy outside and have some FUN!  He usually stays inside because there’s no place to play at his house anymore.  There’s ALL kinds of room over here and he’s flapping his arms in excitement and anticipation, just waiting for his bike to get here!

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I wish he could tell me what’s inside his mind.  What does he think?  What does he feel?  I think it would blow me away if I could see the pictures in his little brain.

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Still…

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(my Valentines flowers)

Still…

I love waking up beside you.

for whatever the coming day brings,

you’ll be there to share my life with me-

both the big and the little things…

Still…

I love spending evenings with you,

talking over the events of the day,

enjoying each others company,

even if there’s nothing to say…

Still…

I love sharing my life with you –

There’s so much to look forward to…

And I know in my heart,

for the rest of my days,

I’ll be sharing my love, Still, with you,

This was the beautiful card I woke up to this morning, with a handwritten note that says:

“I’m going to grow old with you, Michelle.  I know THAT for sure.  And I can’t wait to see what we grow into.  Rough spots, bad moods, who cares.  You’re mine and I’m yours.”

I love you baby,

Ben

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Oh… AND if that wasn’t enough to bring a tear to my eye, These were the first thing I saw!  And Another hand written card

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Valentine’s Day is usually saturated with cheesiness and false sentiments.  It’s no secret that I used to hate the holiday.

(this is as close to my hubby as I could find quickly!  lol)

 

(SO very much NOT me)

I almost dreaded Valentine’s Day.  Why? Because my husband is a hopeless romantic and he EXPECTED so much from me, or at least I thought he did.  It felt like I always fell just short of his picture of perfect.  I didn’t pick the right card, I didn’t make a big enough deal.

 I guess, in all honesty, my heart wasn’t in it.  Our marriage didn’t start out on the right foot and for the first half of our life together. I resented him for not keeping our marriage sacred, like he promised before God, our friends, family and the whole church.  Looking back, I don’t know how we made it.  We both chose to stay. Again, why?  Because there had been love, between us, before.  SO much love.  We both remembered the dreams we shared and the intense passion, friendship and above all else, we remembered the trust and the LOVE.

What we learned through the years of struggle?

Love is a choice.

I don’t think I could have stayed beside a man who didn’t trust me.  Every time Ben looked at me, he saw the pain, anguish, tears, but mostly anger.  Picture an earthquake.  Now picture an earthquake ripping down the center of your soul, your very being.  Yeah, that was me.  Anger takes over and if you let it, it makes you bitter and mean.  I let it take over and hurt ruled my existence.

I’ve heard once that anger is really just “sad turned inside out”.  It’s true.

I don’t know how we did it.  I don’t know what made me decide to stay or what gave Ben the determination to wait and to be Still.  There’s that word again.  He said during those years of hell, he’d pray to God and he could almost hear God say “Be still”.  He felt like God was telling him that HE caused this pain and now his job was to be patient and wait, wait to reap the rewards of that long ago, unfaithful decision.  Pain, the direct result of the paralyzing betrayal my husband  bestowed upon me.  He had to sit and be still while I gained my faith back and my trust, but most importantly the love and respect that I had once felt for him.  My job was to breathe, and if possible, to let God heal my broken heart.  As far as I was concerned, I only existed.  I prayed for renewal of spirit, renewal of my marriage, I prayed to love again… I prayed, but I couldn’t FEEL what I was praying.  It doesn’t matter, God knows your heart and even if you only have HALF a heart, He hears you and knows what you mean to say.  He’s there to lift you and carry the dead weight of your soul, when you don’t have the strength to carry yourself anymore.

Which leads me to now…  My spirit HAS been renewed.  Thank God, Ben and I made the choice to love.  NOW, we finally know what true love is.  It’s not the glamour or the romance.  It’s not the sappy, cheesy love song.  Love is the knowing glance shared between a husband and a wife.  The whisper without words.  Love is time we share reading a book together.  Love is the giggle when one of us makes a fool ourselves.  Love is putting a worm on my hook when I SO badly want to go fishing but refuse to get my hands dirty.  Love is sleeping on a recliner in my hospital room, day after day, not knowing if I’ll live or die.  Love is seeing only the beautiful young girl I used to be, instead of counting the new lines of age on my face or the ten gray hairs that popped out overnight.  Love is surprising me with a weekend trip when the week seemed 10 days long.  Love is crying with me when I lost my daughter.  Love is crying with me AGAIN when I found out my other daughter battled with addiction.  Love is “having my back” when nobody else was on my side, even when I was wrong.  Love is having patience with me when I make no sense at all or when I wake up, like I do EVERY day, on the wrong side of the bed. Love is encouraging me to follow my dreams and believing in me even when I don’t believe in myself.  Love is raising my daughters, when their own fathers weren’t up to the task. Love is SO many things.  SO many things but most of all, love is stronger than it ever was.

Together we chose to trust again.  This was hard because what IF he hurt me again?  He COULD.  There aren’t any guarantees, BUT, now I know, I’ll live.  If he hurts me again, he has to live with that.  I can’t live every day in fear.  That’s giving too much power to the bad.  It’s also taking away my joy and my ability to live in the moment.   We never would have known the depth or the strength of our love, had we never rode that long black train through hell.

                                                       My husband made a decision to not only be faithful to me but to become the man he was born to be.  You know the old Cherokee story about the two wolves, right?  We’re ALL a work in progress but I’ve had the pleasure of watching him grow into a man with convictions.  A man I will gladly walk beside.    He talks, not just to say “words” like he used to.  He talks because there’s something meaningful to say.  More importantly, he LISTENS.  He tries to empathize.  He does this because he loves me.  We’re connected.  We work at staying connected.

Life isn’t perfect and it never will be, but we have fun with the little things.  We have peace with each other.  He knows my mind and I try to know his.  NOW, I’m in love, for real, with a man I will grow old with….

STILL….

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My Little Chunkaddodle Turns 4! Cuteness overload….

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4 years ago, February 2, 2009, God blessed us with our very first grandchild!  Happy birthday to  one of the biggest loves of my life, my little “Chunkadoodle”.

Being a Mawmaw has brought me many emotions I couldn’t have imagined I’d have.  First of all, I would never have guessed that I could POSSIBLY love another human being the way I love my own children.  My heart swells with emotion beyond love for this little angel.  When I hear her tiny little voice say “Mawmaw, come meer, I want to SHOW you sumpin”… and then she brings me a flower…

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When she screams, “Mawmaw, I wanna swing HIGH , all the way to the MOON!”

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When she pretends not to hear me when I tell her it’s time to leave because she’s MUCH too busy climbing the jungle gym…  And she makes me have to run and catch her to bring her down…

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When she says, “Pawpaw, Come meer, I wanna give you a hug” and I see my husband melt…

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When she falls asleep eating a chicken nugget on the way to somewhere…Image

And when we finally get to “somewhere”, how she makes me laugh because she wants to try on every hat in the gift shop…Image

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When she tells a funny joke and she cracks her OWN self up…

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When she’s in her own little world and she doesn’t know we’re part of that world…

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When she’s ready to take on the world with a cannon AND a sippy cup…

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When she causes her daddy grief because she’s too squirmy…

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When she thinks I’m Reeeeediculous……

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When she says “Pawpaw, I tired.  Gimme a piggy back wide”…

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But especially when she laughs…

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These are the moments when I realize why I live, why I breathe, why I love…

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Liza,

Through you I see the future,

Through me you’ll see the past,

In the present we’ll love one another,

As long as these moments shall last.

(author unknown)

Happy birthday my angel!  It breaks my heart to be so far away but you’re in the biggest part of my heart every single day!