4/02/2013

Coming Out of the Closet: The "A" Word

Being a parent...  It's a crazy hard job.  Like all parents, my greatest desire is to be a good mother to my children.  I fall short.  A lot.  Sometimes it's just so hard to know what to do.  Sometimes you know, and then you change your mind.  And then you change it again.

To cut right to the point...

Our oldest son, Lucas, has autism.  For some of you, this news will come as a big surprise. For others, those of you who have spent much time around him, not so much.  He was diagnosed when he was three and a half, right before Max's first birthday.

Before I go any further, I want to be very, very clear about something.  If you take anything away from this blog post today, I want it to be this.

We did not wait four years to come public about Lucas's autism because we are ashamed.

Not in any way.  Not when he was three and a half, and certainly not now.

We were desperate to protect him.  Protect him from an ignorant world.  There are family members and very good friends, people that I love dearly who are learning this news for the first time.  Honestly, I told my own father only a few months ago.  We didn't want him pitied, or talked down to.  We wanted to do everything in our power to avoid a label on our precious boy.  We didn't want "The A Word" to define him.  It was very important to us that Lucas be treated by our friends and family like every other kid.  But the truth is, Lucas isn't like every other kid.  He is different in ways that sometimes fill us with pride.  He is different in ways that also occasionally bring us to our knees brokenhearted.  The broken heart days don't come very often anymore.  I'm very thankful for that.  I think it's partly because Lucas isn't as hard as he was a few years ago.  But it is also partly because we've embraced who he is, and not who we thought we wanted him to be.  There is a very fine line, in parenting all children I think, between seeing your child's weaknesses and trying to help them overcome; and accepting your child for who they are.  Seeing the beautiful little person that they are right now.  Not who they will be someday, if only you all work hard enough.  That took some time for me.  And it was not always an easy journey.

Autism is a spectrum disorder.  You may have heard the phrase, On the spectrum.  I do not claim to be an autism expert, I'm only a Lucas expert.  You can learn more about autism spectrum disorder (ASD) at the Autism Speaks website.  I'm not writing this to educate you about autism.  Just to educate you about us.  About Lucas.  And please, please.  Do not think you know about ASD because you've seen the movie Rain Man.  Seriously.

So, you are now in Lucas school.  I am your teacher.  Which is funny, because I am also in Lucas school.  Chris and I are still learning, still figuring this out.  (All parents are, right?) Here are a few things that we have learned, and that may help you appreciate our little man and our family a little better.  I have decided to write this in list form, because I have a newborn and get very little sleep.  And paragraphs are hard.

Here we go.  Crash course in Lucas.  Buckle up.

1)  Lucas is not mentally retarded.  He is actually quite brilliant.  He is probably smarter than you are.  I'm not kidding.  (disclaimer:  if you are a parent who is blessed with a child who is developmentally disabled, please understand that I am not making an unfavorable comparison between your child and my own.  I am merely stating that autism is not the same because it is a fairly common misconception.)
2)  Lucas is not mentally ill.  Autism is not mental illness.  (If you or someone you love suffers from mental illness, please apply the above disclaimer.  Again, I am just taking the opportunity to clear up surprisingly common misconceptions.)
3)  Lucas may not look you in the eye very much when he talks to you.  He is not being disrespectful.
4)  Lucas loves animals.  No.  I mean, loves.  There is only one person that I personally know who knows more about animals than Lucas does.  That is my father, who holds degrees in biology and animal husbandry. My dad might know a little bit more than Lucas.  For now.
5)  He also loves pretty deserts.  Cupcakes.  Petit fours.  Pies.  Croissants.  Cakes.  He carries Williams-Sonoma catalogues with him everywhere he goes.  His favorites are the Christmas, Valentine's, and Easter issues.
6)  Lucas needs order.  He needs for his special things to be safe and where they belong.  So if you come over to our house, I'm not going to make Lucas share his beloved plastic lion with your kid.  If that makes you think that I'm a lousy parent for not teaching him to share...  go ahead and think that.  I don't care.
7)  He is as gentle as a lamb.  Really.  I love this about him.  It would never occur to Lucas to bully or tease another child.  Never ever.  This is also sometimes a little concerning.  I worry that he will be the one that is bullied, that he will never stick up for himself.  (I guess that's why God gave him three brothers.) As sweet of a personality trait as this is, it is really inconvenient for sports.  He played soccer last year, but would have never dreamed of trying to take the ball away from any of the other boys.  Lucas really just wanted to play a little in the dirt, watch the clouds, hold his coach's hand, and occasionally run up the field.
8)  Lucas's emotional reactions can be really intense.  This isn't as much as a problem as it was when he was younger, he is getting more and more self control as he matures.  However, we do still have some fairly unpleasant melt downs.  Usually, over something that to you may seem like a non event.  For example, forgetting a book in the car in the school parking lot can completely ruin his day.  And his teacher's day.  And the teacher's down the hall day...
9)  You may see Lucas in a room with a group of children, but not playing with them.  It may be your first reaction to think that he is an outsider, or that he is too shy.  He is neither.  He enjoys being with the other kids, but he really likes doing his own thing.  I am such an extravert that it took some time for me to appreciate this about him.  It always made me sad, and I assumed that he felt the same way that I would feel had I been sitting outside a large group of kids.  That he felt lonely and left out.  But Lucas isn't like me, he's more like the anti-me.  He is perfectly happy to be close to the group of boys wrestling on the floor, but he would rather not get in the middle of all that, thanks.

I know that after learning about a diagnosis like this, sometimes it's hard to know how to act.  It may be difficult for you to know how to treat Lucas or to treat us.  Not any differently, thank you.  That may be hard, and you may feel awkward because you love us and you want to say and do the right things.  But we really don't want sympathy.  We don't want heads cocked to the side and puppy eyes.  We don't want special treatment.  Here are a few "Do's" and "Don'ts" to help you not make me mad.  (How's that for being blunt?)

DO please talk to him and not over him.  He may not answer you, he may not appear to be listening.  But I assure you, this kid misses nothing.  Nothing.  And it makes him very uncomfortable to hear you talk about him.

DON'T tell us you're sorry.  I know that this is a very common reaction to bad news.  And to you, that may be what this is.  But it isn't bad news to us, it's just who Lucas is, who our family is.  When your first reaction is, I'm sorry, you are saying that you think that there is something wrong with my child and you are sad about it.  That is not how we view our little boy.

DON'T talk to us about a "cure" for autism, or of Lucas being "healed".  He does not have cancer.  He is not ill.  Your intentions may be good, but the message this sends is that in your eyes our son is broken and in need of fixing.  This is not how we see him.  Not at all.  Lucas doesn't need to be fixed, he just needs to be understood.  He may not be like your child, but that doesn't mean there is anything wrong with him.  His brain just works differently than ours does.  That's all.

DO feel free to talk to him, shake his hand, hug him, just like you would any other kid.  Not all kids on the spectrum (or off the spectrum, actually.) like to be touched, but Lucas doesn't mind.

Do talk to us about Lucas's diagnosis if you want to.  But don't if you don't.  It's just a word.  Our family isn't defined by it.  Lucas isn't defined by it.

I'm sure that I will write more about our family's journey on the spectrum, and that there will be much more that I will want to share here in the future.  But for now...  Please just remember that we're the same family we were yesterday.  Lucas hasn't changed, he's the same little boy you saw last week.  He's the same kid, now you just have a picture to go with the word "autism".  Now you know what autism looks like.

Like this...

 And gives great hugs, like this...
 We couldn't be prouder of our boy.

5 comments:

JessicaVPerez said...

What a beautiful, amazing boy! You are quite blessed with this extraordinary Evans family!! I so wish we lived close & shared a fence in the backyard. :) Thank you so much for this post - I'm so happy you're back on the blog-train.

Love you friend!
Jess

Angel said...

I love you, Mariah! And beautiful, Lucas. Your post is well written and full of wisdom.. Thank you for sharing. I am in tears because my Levi shares so much in common with Lucas. And I know people just don't understand. But I will keep loving Levi with everything in me; I will do everything I can to celebrate the unique boy that God created him to be. Thank you for embracing Lucas with the truth that he is NOT broken. :) :) People need to understand this truth. Lucas, and Levi, have different gifts than some others and this is GOOD! :) The body of Christ is not made up of one arm but many diverse parts that have their own specific function. :) Love, love, love you!

JoLaLaLa said...

Amen, Angel! I seriously love this post. I have read it about 3 times today. I want everyone to read it. Mariah, you are a wise woman and I love how you are raising your boys. They are so very blessed to have you & Chris as their parents. :)

StringGirl said...

Love, Love, Love!

jodijojo said...

This post resonates with me, as a mom of a child with a more visible difference, but the sentiment is the similar. It is a difference and it does not need fixing. I'm grateful that there are people like you that share these sentiments so eloquently with words, and with pictures. Your photography is super powerful. Great post!
xo jodi

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