Friday, April 20, 2012

Autism Awareness Confessions...

In an effort to raise awareness for autism, here are eight confessions that I have regarding my daughter's autism.  I think these confessions could be true for most parents with children who have disabilities.  It's a long hard road but I believe God picks the strongest to look after these precious children and for that, I feel honored.

1. Even though my child has a disability, I wouldn't change a thing.

My child has a disability.  That is a tough sentence to utter at first but, as the years pass... it becomes easier.  In a weird way it makes me proud.  Autism was literally the LAST diagnosis I wanted to hear... only because it is so uncharted and misunderstood.  I have a child with a disability and I love her.  Would life be easier if she didn't have autism?  Absolutely.  But, my Bella loves me in ways no other child could.  It's in the way she strokes my hair with her fingers and holds me tight when we spin together.  Or the way it frustrates her if my hair is in a pony tail.  It is my life's goal to love her as vibrantly as any mother could.  Today I feel that without her autism, I would be a more selfish person.  So for that, I thank her!

2. I never pictured my life like this....

When I got married, one of the first things I thought about is our first child.  My husband and I... the product of our love.  What would this child look like?  What personality traits would they take on?  Would they be as mischievous as me?  Would they find love?  Would they break hearts or get their heart broken? Would they take care of me when I got old?  These are all questions I pondered.  The very instant of my child's diagnosis... these questions disappeared.  Shattered dreams.  A vague and impossible future existed before us.  It was actually like a nightmare.  But that was then, and this is now.  From that day forth, I promised to pick up all of the shattered dreams and piece them together differently.  It's like doing a puzzle with your eyes closed.  You can sense the pieces will fit, you can't see them but you know eventually something beautiful will be produced. Thankfully God is the master puzzle maker:)


3. I stopped feeling sorry for myself a long time ago...

I used to feel sorry for myself.  Like I deserved some sort of pity or reward for the day in day out stresses of raising a child with a disability.  Maybe it's because I heard so often... "I don't know how you do it".  It's hard to hear that your child is "moderate" on the spectrum from trained professionals.  Why couldn't she be "less autistic".   It's hard when Bella seems to have the most difficulty in even her special needs classes.  It's utter torture watching her physically harm her body in frustration because I can't figure out how to help her.  But you know what?  That's where God shows up.  He is a strong fortress.  Ever present in my time of need.  He speaks to me in those tough moments and reminds me that Bella is His child.  He entrusted her to me and I should feel honored to be her mother.  He reminds me that she is a walking example of His power, and divine mercy on our lives.  So, I don't feel sorry for myself anymore... I feel honored to share my life with others.

4. ...but it is still hard.

When I wake up each day, I am faced with the fact that I cannot erase autism from our story.  I walk around my house fixing things.  I never realized I did this until the other day.  I would straighten items so Bella wouldn't get annoyed, hide toys that frustrated her, move items in the fridge around so she couldn't see them and get fixated.  When I get invited to social events I stress about it for days wondering if Bella will have a "full blown meltdown".  I watch other children speak to her and realize she doesn't really notice them.  They try again and give up usually... or they ask their parents "what is wrong with her?".  Autism is hard to explain to a child.  Bless them for trying, especially Bella's sweet little cousins...they seem to never give up! Listen, I can hear you.... Yes, you in the grocery store.  The one who gasps at the pitch of Bella's screams.  You should feel lucky that I am a patient person.  Did you know that many mom's actually print our cards that explain autism so that they can hand them out to people in public who seem "appalled" by the tantrums or stemming.  


5. You complain that your child talks to much... I would give anything to have a conversation with mine:)

My child's voice is sweeter than honey.  It is.  When she says words (and I've said this before) I want to freeze time and play it over, and over, and over.  When she looks in my eyes and says even one word that makes sense... it literally "makes my week".  So, parents... please don't complain about "how much your child talks"... I don't say this because I'm annoyed.... I just want you to consider how precious their words are.  Listen to them, take it in... It's a miracle they can speak and express themselves.  


6. When I think about the future, it makes me nervous.

I will die before Bella.  It's the way life works.  Knowing this, the future becomes frightening to me.  Why do we do all sorts of therapies and try different methods to help Bella progress? Well, it's for her future.  To help her become an adult who can thrive in society on her own.  But here's the deal, I don't know her future.  I don't know how far she will progress.  Will she ever be able to take care of herself?  Will she have a husband who loves her they way her father loves me?  I hope and pray so... every day.  What if she doesn't?  Who will love her and care for her when we are gone.  My fingers ache just typing this.... God is good.  That is the only thing I know.  Jeremiah 29:11 is something I recite to myself when I get overwhelmed by her future "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future".


7. I feel guilty when I get angry with my child. 

The fact is, reasoning... spankings...threats... none of them work with a child who lacks understanding. Until Bella is able to understand emotion fully, I cannot punish her like a typical child.  Until she realizes that actions have true consequences.... until then.  When she was a baby and before diagnosis, I saw other moms putting their child in the corner, or grounding them to their room, or swatting them on the hand.  I tried each of these techniques and boy was I in for a big and hard disappointment.  The corner technique resulted in screaming for an hour straight with bruises on her head from banging it so hard.  I remember thinking, "what am I doing wrong, why is this not working?".  The grounding in the room resulted in the door almost coming unhinged from her flailing her body at it.  The spanking, well... she looked at me with such confusion, it hurt my heart so badly... I cried instead of her:(  So, when I get angry now.... I have to remind myself that she doesn't always understand what she's doing (in the way I want her to).  She does understand, but she needs to be reprimanded calmly, with unique reinforcers.  Take a toy away, withhold.  Show her no emotion.  That is how we punish now.  It's hard but we will get there:)

8. I love my child more than you could fathom.

I love my child more than anyone could love a child.  When I think of this, I'm reminded of another child.  He was born on this earth, lived a perfect life, and died for me...and for Bella.  He had a father that loved him too.  More than anyone could ever love their child.  It's called sacrificial love.  It's something I strive for every moment I exist.  I must, for Bella.

My sweet child.

4 comments:

  1. Very well written Annie! Abby just walked up and saw Bella's picture and said, "hey, its Bellsy. She's so cute!"

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  2. Annie, why is it that I find myself in tears every time I read one of your posts? You have a way of writing from your heart, and it does make a difference. I admit that I'm guilty of #5 a great deal. This was a wonderful thing for me to read. It's the age old you-don't-know-how-wonderful-something-is-because-you've-never-been-without-it syndrome. We take things for granted, and become ungrateful for them, because we don't really understand how much God has blessed us with in the first place! I continue to pray for you and Josh and sweet little Bella. God IS using you!

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  3. Absolutely LOVE this post and agree wholeheartedly with all of it...

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