mes on Autisable

Tuesday, 07 May 2013

The Crash

Sudden impact...instant pain...smoke billowing...the faint sound of sirens in the distance... Didn't see it coming...

The date was circled, starred, highlighted and underlined in my calendar. My person, my beloved big sister would come to the house to watch my infant baby Scarlett. My husband would meet me at the clinic and we would take care of it. All the plans were set and in place, but like a horrific side impact collision, I did not see it coming.

It was unusually foggy driving out to Santa Margarita with Lilly silent, as usual, in the back. I pulled up to a well groomed, peach stucco office building, saw the familiar face of my other half in his work clothes waiting anxiously outside for us. We carried her in, nervous of course, but blindsided by what would happen inside that room.

I was a teacher, he is a Healthcare Manager. The word Autism was familiar in my classroom daily, his client list of patients, yet never spoken about in our home or on our thoughts of Lilly.

Sure she wasn't talking and seemed to ignore everyone, but she was just our baby, and maybe just a little behind.

Then the crash... The therapists were sweet and kind and soft spoken, but it became undeniably obvious to us all that they couldn't even administer most of their tests. She was lost in her world of spinning fans and pieces of dust in the air only her eyes could see.

My voice trembled with every "no " question given.

My teacher brain triggered and my entire body felt as if it was sinking into the ground. The minutes ticked away painfully and tragically until each therapist finished scribbling away. Pencils dropped and my husband courageously broke the silence, asking them politely why they were all asking questions that lead to a description of Autism. The word pierced my heart, not because I wasn't familiar or unaware of the disorder, but because there was not one second I had ever considered Lilly to be Autistic.

It hit, it hurt and it was real. It still is our reality, and like the beautiful yet powerful God made waves crashing in, then pulling back, the triumphs and meltdowns, it remains.

Yet, the smoke cleared and together we have survived the crash.

Today Lilly can show you her gorgeous eyes, laugh when Mommy falls, run and leap into Daddy's arms, calmingly hold her sister's hand on the sidewalk and sing Jesus Loves Me while falling asleep in her big girl room.

"I would not change you for anything in the world,

But I would change the world for you."

Thursday, 11 April 2013

A picture is worth...

A picture is worth the world to me...As a mom, I am in love with shots of my girls and proudly show them off, but as a mom to a child with Autism, a picture can speak volumes. See my daughter is almost four, and we have yet to have a single, normal conversation with each other. She has never asked me a question or told me what is hurting her. Her language is emerging, and my heart feels so blessed with her progress. Still, the silence is saddening. A gorgeous red breasted robin swoops near us as we slowly walk to the end of the driveway. I squeeze her hand tighter.

Did you see that Bug, I whisper...

The moment will preciously file in my head, but will not know if she saw her, too... I snap shots over and over, knowing I can scroll through later, cherishing the ones I feel close to knowing what she thought, felt. I stare into her bright eyes, squeeze her tight to feel her heartbeat against mine, and breathe in her wonderful ness, knowing our day will come... Until then, I must cherish every smile captured, every word emerging, every hug given.

Monday, 01 April 2013

Touched by an angel

Touched by an angel

Have you ever smiled after seeing her round cheeks and deep dimples?

Has your heart ever warmed after hearing about a new milestone reached?

Have you been given a chance to stare into her striking blue and yellow-gold eyes?

Have you felt the utter thrill of receiving one of her running hugs?

Have you melted inside with the sound of her infectious giggle?

Have you heard the beautiful soft tone of her real voice softly singing?

Has your body ached with pain in knowing she cannot say everything she is thinking and feeling?

Then my sweet family and friends, you have been blessed to be touched by an angel, an angel made lovingly by The Lord to bless us all...

Friday, 08 March 2013

The Highs and Lows of Autism

"We do not remember days. We remember moments." Cesare Pavase

Who knew this fridge magnet I bought back in high school would provide so much comfort for me every morning...

The invigorating highs and exhausting lows of our lives can only best be described as living a bi-polar life . Just 48 hours ago I couldn't be higher- L had her first ABA therapy session in almost a year and killed it. She said hi to a fellow student on her little bus, unprompted! She slept through the night and woke up herself... Got out of bed on her own and sprinted into our room, smiled and shouted, "Daddy, Morning!"

Talk about bursting at the seams pride - each of these events are in themselves the biggest milestones of her life... I find myself writing them down and reading them repeatedly to let the overwhelming mass of accomplishment sink into my heart as a permanent reminder of her incredible progress. I actually thought to myself yesterday, "We got this... L will be just fine..."

Fast forward to last night... Got L down and asleep before 10 and blissfully slept for a solid few hours until she awoke - hysterical, exhausted, confused... Every painful minute awake with her felt like hours... Screaming, hitting...waking up little sis and Daddy, who sweetly took over the early morning shift of her meltdown before needing to get ready for work himself. I fought through tears as I instinctively dialed the number to cancel her bus, knowing the ripple affect these nights have on her body all day long. Sleeping through her school- up late, and probably a sore throat which she can't tell me about from her screaming. All I can do is take a deep breath...spend extra time in prayer with The Lord, drink a few too many chai tea lattes and feel grateful for my new special treat from the beauty supply store to pep up my tired eyes.

We truly have a blessed life and need to just take life as we can- minute by minute and hour by hour.For every low there will come a more beautiful high with our sweet angel that many will not have the opportunity of blissfully celebrating.

Monday, 11 February 2013

Sisters

Those close to our family know that while we have known Lilly's developmental delays are caused by her Autism, Scarlett's sweet little life has been an uncertain road. She was an extremely difficult and fussy baby from hour one of her life. I didn't have that blissful moment of swaddling her, and gently setting her in the hospital bassinet for a much needed snooze. I remember the horror and anxiety I felt needing to rock her to sleep from her first nap of life and how I was going to handle her and Lil. Luckily I had therapists in the home for Lil and was constantly having them observe S. Why was she so fussy? So hard to get asleep? Even though Lil is Autistic and has severe sleeping issues, she was an incredibly easy newborn. The doctors and therapists didn't see any signs of Autism in her- just let her grow into her own...

At seven months I was finally able to move her into her crib from our bed, but not without rocking her to sleep first. She would slam her head into the crib for hours if I didn't ...

There were sparks of smiles and physical strength but like Lil, no typical babbling or signs of typical language starting.

I decided not to wait and scheduled a developmental screening for her, a routine I am all too familiar with. They were concerned, tests were administered and round two of therapy in our home begun.

No one thought she was Autistic and connected her delays, anxiety, balance and coordination issues with a Sensory processing issue. Every six months her OT would say she just needs a little more therapy and now, at two it seems like she is truly outgrowing those issues.

Still, her inconsistency with language was troubling. When her and I were together, beautiful four and five word sentences would flow out of her little mouth. Yet at home or in music class- nothing. People have told me they thought she was nonverbal.

After her latest therapy session, her speech therapist assured me she is perfectly fine.

The truth is that my mature and sensitive little two year old just wants L to stay the big sister. S is aware that she has passed her big sis in many ways, and withholds speech to respect Lil. My heart breaks for her sweet little heart but must urge her to push ahead and be the best little sister. I know with all certainty that L will always, always be the big sister in our family.

Scarlett's language continues to progress daily and warms my soul to hear her thoughts and observations. Lil is the most repeated word in her vocabulary and told her Daddy she loved him for the first time... Ever. My life is stressful and difficult at times, but filled with such such joyous moments with my sweet girls and their spoken and more important, unspoken language between each other.