Amazing Amelia

In “honor” of autism awareness month I’m going to attempt to give a quick version of our autism journey..

When my Amelia was born it wasn’t under the best circumstances.   My organs were shutting down and to save both our lives I had to deliver her almost 2 months early.  When she came home from the NICU she was only 3 and a half pounds.
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Somehow, she gained weight quickly.  Even though she would stop breathing every time she ate and seemed to spit up more than she took in.  Her pediatrician nicknamed her “Amazing Amelia”.

When Amelia was 18 months old she came down with RSV disease and pneumonia.  It was scary.  Heart wrenching.  I slept by her bed every night with a timer to administer medication.  She seemed withdrawn after that.  Any language was gone.  For awhile we thought it was just from the trauma of the illness.. from being a preemie…  and then the diagnosis process began.  About a year later, after multiple groups of specialists sufficiently prodded and poked we received the diagnosis of Autism.  I didn’t feel upset, it was almost relieving to have a label to explain some behaviors.  I remember a “good” friend once turned to me and said “Is Amelia just slow?”.

We were all ready doing therapy, occupational at first and then speech as well.   The first assessment Amelia would hardly do more than bang her head on things and wanted to leave.    Gradually, things got a little better.  But therapy was still hard.  And I was at a breaking point.  I was exhausted from dragging her there, quite unwillingly.  When I had our second daughter we took a few weeks off and I was considering taking a longer break from therapy but we decided to try again, at least for a little while.   And it was like something clicked.  All of a sudden she wanted to go.  Things started to fall in place.  Not everything… I still remember sitting with her speech therapist and crying my eyes out, asking her if I would ever hear her say “mommy” again.
But as Amelia gets older, the thicker my skin gets too.  I know I have to fight for her at times, and be willing to wait as long as it takes to see her progress.  And just keep going.  And then go some more.  And then something magic happens.  When I am at my lowest point, exhausted (did I mention Amelia doesn’t really sleep?… well, not much anyways..)  and overwhelmed Heavenly Father gifts me these little windows.  Windows of Amelia in her true state.  When she takes my hand and says she loves me.  Or hugs me tightly.  I always felt that for Amelia the most important thing we could work on was affection.  Being okay with receiving and giving affection.  Because imagine you are a young child whose skin feels like it’s on fire simply because the tag on your shirt is itchy.  Now imagine you aren’t okay with going to your mom or dad for comfort.  Instead you just hit your head on a wall.   To stress “socialization” so heavily for children with autism seems backwards to me.  After all, if you are so uncomfortable with your OWN skin, how can you be comfortable with someone else?  For us, that has worked.
Amelia is sweet, loving, and a daily reminder of all that is good in the world.   Is it always easy? Nope.  But nothing worth anything is ever easy.
As she grows older, I am becoming increasingly aware of how those with disabilities are treated as adults.  It is one thing to bestow understanding on a child.  But adults?  That seems to get grey for some unfortunately.  And while people are increasingly aware of autism, it has become common for high functioning Asperger’s syndrome to be referred to as autism as well.  So it is difficult for some to understand the difference, and be understanding when Amelia can’t do the same things as someone with Asperger’s can.   Even children with the same disease will not all look the same, and react to therapy and treatments the same.
So I want to remind you, the next time you meet someone who seems different from you, remember they are someone’s baby.  And they are more than their differences.  I want to share some things my girl loves, maybe you’ll see something there you can relate to as well.

1.Winter.  Everything winter.  The lights, the snow hats, scarves, and gloves, decorating cookies and gingerbread houses.

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2. Glamour.  Does this picture not say it all? She has even put this tutu on her dog so they can be fancy together. 🙂

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3. Her Charlie boy.  It’s hard to believe this little fur ball is now over 100 lbs but I’m sure that’s in part to her making and sneaking him peanut butter sandwiches.

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4. Birthdays.  This was her 7th birthday and the first year she enjoyed being sung “happy birthday” to.  She beamed and seemed to all at once understand that this was a special day for her.

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5. The beach.  Amelia is a different girl at the beach.  She loves to feel the wet sand in her toes and collect seashells.  I can see her shoulders drop and a calmness come over her at the coast.

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6. Her little sister.  Just when they both couldn’t drive me more crazy I catch them doing this.

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7. Her rhino trike.  This girl can’t get enough of it!  No matter how we tried Amelia couldn’t ride a bike.  But thanks to her occupational therapist, Amelia discovered the joy of a bike.

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8. Mr. Rogers.  I think it would be impossible to find a bigger Mr Rogers fan.  Proven by her Mr Rogers Birthday party here.  Sometimes if Amelia is having a hard time doing something I just have to tell her some encouraging words “from” Mr Rogers and she can get through it.

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9. The Aquarium.  She would go every day if given the option!

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10. Glamour, again.  Seriously, this is how we look for school time many days!

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11. Snuggles.  I catch my two babies doing this all the time and it makes my heart so happy.

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12. The zoo.  Okay, pretty much all animals.  Farm animals as well.  She finds chickens to be insanely hilarious.

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And one last thing.  People.  She loves people.  Saying hi, offering a hug to a waitress or cashier, or telling the little boy in a wheelchair “cool chair!”.
This girl finds the rose on every thorny bush.  I pray the world will see for the beautiful rose that she is, and understand some thorns will come with that.

 

 

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Comments

  1. Kristy Moser says:

    Oh, I miss her so much. I remember holding her littleless and how perfect she was then and is now. I miss you all and am so glad you shared this post. Give hugs all around.

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