Soooo, April is autism awareness month.  I feel like I should acknowledge that but I want to keep this to the point and short.
Many people I meet are divided into 2 groups.

GROUP #1: You’ve seen commercials about how autism is some thief that comes in the night and is the ugliest, scariest thing you can imagine.  The very mention of the word sends chills down your spine.

GROUP #2: Your neighbor’s cousins son has high functioning autism and you think you’re an expert.  And bonus for me, you want to bestow all your knowledge and advice, and more importantly, your judgement,  on me.  Yay!

To group #1: Autism makes life kind of difficult at time.  But my daughter is not a scary ugly monster.  She’s sweet, loving, and the first to give someone a smile.

To group #2: Every situation is different.  And the most valuable gift you can bestow on almost anyone is withholding judgment and keeping your advice to yourself.  A simple smile and greeting will go much further, trust me.

To the world: Where have all your manners gone?!  As my daughter is getting older I’ve seen a shift in the way she is treated by those we meet.  When she was younger it seemed people  either ignored her or passed off odd behaviors more.  (Not always, of course.)
But now she is almost 12 and taller than me.  My Amelia is social, friendly, and loves to say hi to new people.  In fact, if she had her way, she’d probably hug every person she came across.
She loves to run errands with me (depending where we are going, of course.).  Often times, in the grocery store, or wherever, she will stand in the middle of someone’s path and smile at them, say hi.    I’m saddened to say this is very rarely met in a positive way.  And I understand somewhat.  There is a stranger, tall enough to be an adult, with puppets on her hand and big smile on her face, standing directly in your path.  Maybe you are uncomfortable.  I get it.  I even have family members who are uncomfortable with autism.  We rarely see them, or when we do they avoid Amelia and ignore her greeting.  It breaks my heart.  Because you know what you miss?  You miss out on the best, most contagious giggles you’ve every come across.You miss the chance to have THE BEST hug of your life.  You miss the chance to hear her say “Nice to meet you!”    And we only worked about 4 years on that sentence.  Amelia didn’t speak until she was over 6 years old, and I’m talking about one word here or there.  Any language she has now has been due to years of tears and hard work.

So I have  simple request.  If you meet someone who seems different from you, bestow them a gift.  Withhold your judgement and just mind your manners.  Say hi.  Smile.  It won’t hurt, I promise.   (Oh, and adults? Your kids are watching.  When you are uncomfortable and judgmental, your kids will surely be as well.)
Children AND adults with special needs should be treated as what they are.  People.  With feelings.  Every person you meet started out the same, someone’s baby.  Maybe not yours, but that doesn’t mean their feelings matter any less.  So if someone with special needs makes you uncomfortable ask yourself why and figure that crap out.  Because you are being rude to the very group of people who are most likely to accept you exactly how you are, and the first person to give you a hug.

Besides, WHY ON EARTH, would anyone see this smile and not want to return a greeting?!

 

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.

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.

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

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.

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.

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.

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

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.

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.

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

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

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

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

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.

 

 

Happy Autism Awareness Day!  I had started writing this long post, then realized I was really just venting. 🙂  Which I suppose is fine occasionally, but today, I just wanted to ask everyone who reads this to try to be a little more aware of both children and adults around them who might act a little “different”.  As my girl is getting older, (or taller rather, at 9 she’s all ready as tall as I am!), I’m noticing its harder for some we come in contact with to be understanding of her behavior.  She may not answer you if you talk to her.
She might say “Hi!” to a total stranger in a store, or ask someone for a hug.
So please, remember that if someone doesn’t act or talk like you do, maybe there’s a good reason.
And adults with special needs are still someone’s baby.

And for pete’s sake, if you have advice keep it to yourself unless you really have something useful to share.  The mountain of advice I receive on a daily basis is ridiculous.  The most offensive is from complete strangers who think that just because they have a neighbor who has a cousin who has a son who has a friend with high-functioning Asperger’s that they would of course know way more about what is best for my daughter than I would.  I mean, who knew you could put pink glasses on a child with severe autism and cure them?!  Thank you complete stranger!
I so appreciate the support and love we get from friends and family, and don’t mind their questions or sharing something they read about or whatever.  But those are people who know and love me and my girl.
So if you feel the need to help someone you don’t know, just remember that usually the best thing anyone can give anyone else is non-judgment.
Okay, so I ended up venting a little.  Sorry.
Give a smile to a stranger today, for my Amelia.   She would give you one.