Friday, April 8, 2011

A Walk in the Park...

It's a warm sunny spring day...perfect day for the park.  I pack up the car and we head off to the great outdoors.  Addie and her brother love being outside.  Addie is truly in her element....and it is almost therapeutic for her.  She loves bugs, dirt, sticks, the puddles...the ducks...the swings.  She comes alive when we walk in the park...

When we arrive...I carefully drive around the park to find the least populated playground.  She easily tolerates a few kids...but certainly not a crowd.  So I find one with only 3-4 kids and mommies hanging out.  Looks safe enough.  I'm praying we don't make a scene...and that maybe we can make a friend?!  So we make our way over.  Along the way Addie is pointing out every butterfly...and telling me all about the butterflies and caterpillars.  How they turn into a chrysalis, etc...  As we get closer I start to give her some "prompts" to say to the other kids.  "Can you say Hey, Addie?"..."ok" she says.

We get to the playground and one of the other kids comes over..."want to make a castle with us?" ...Addie stood frozen with her hands over her ears.  I could tell we were headed for a possible melt-down.  She didn't know what to she was ready to scream and flap or jump around.  So I quickly prompted Addie to "say Hey, Addie" she processed that for a few seconds...meanwhile the other child had already ran away confused....then all the sudden Addie screams across the playground..."say Hey Addie".  The other little girl and her mom laughs...I guess thinking it's a joke.  Addie looks concerned and confused...she had taken my prompt very literally.....then she starts screaming and flailing because she doesn't like the sound of laughing...especially the louder laughs.  "Too loud...too loud...stop...stop...ahhhh".  Quickly the girl and her mom move to the other side of the playground.  I finally get her to calm down taking her and her brother over to the swings...they love to swing.  After a few minutes...she is the swinging motion calms Addie and relaxes her.

By this time, there are several mommies sitting and chatting while their kids run and play together.  I can see that they are stopping to notice Addie several times when she has some minor melt-downs.  I am walking around with Addie prompting her...trying to help her to engage the other kids...and to know what to say if they come up to her...."ask her if she would like to swing with you?"..."say excuse me"..."tell her no thank you"..."show her your new shoes"..."ask if they want to go down the slide."  I am constantly giving her the words to say...fending off an impending melt-down.

Finally Addie goes over to a girl and following my prompt says "do you want to go down the slide?"...and the little girl says "yes"...YAY!!!  I'm holding my excited for Addie.  The little girl and Addie go down the slide several times...they are both giggling and smiling.  I am overjoyed by this accomplishment.  Every time they get to the bottom Addie says in the exact same voice "do you want to go down the slide?"...and the little girl says "yes".  Then after a few trips down...the little girl changes her answer...uh ohhh.  I was waiting for it.  "do you want to go down the slide?"..."no, lets go to the sand box"....Addie begins screaming and flailing "no no no say say say yes...ahhhhhh".  I jump in and try to give Addie the words to say and try to comfort her.

Then I look up and realize everyone is staring...then the little girl exclaims "what is wrong with her?".  In that moment my heart just broke for Addie.  Although I was excited for her accomplishment in playing for a few minutes with another child, a chill washed over me as I realized that she is getting to the age that other children are starting to notice that she is different and might start to make fun of her.  That is a fear of any parent...and especially if your child is a little different.

I apologized and explained to the other mom and child that we are working on our social skills.  The longer we stayed at the playground... the more questions I get from other moms and kids.  "why is she licking that?"..."can she hear?"..."are her eyes ok? can she see ok?"..."she must be really tired today"..."boy, somebody woke up on the wrong side of the bed".  All sorts of questions and comments that basically all say the same thing..."what is wrong with her? why is the acting different?"  It's like they couldn't put their finger on it...but I can see the wheels turning and they are wondering why.  One brazen older woman remarked that "she just needs a good spanking...and I'll take her home with me and get her straightened out".  In the moment I was too busy chasing Addie and helping her cope and try to engage her... to even comment...but looking back I can think of a million things I could have said.

After a few more dramatic outbursts and a few more comments and thoughtful parenting tips from some other moms...I decided that Addie had about all she could handle of the small crowd and so had I.  So we decide to go walk on the nature trails...her favorite thing.  A sort-of reward for her trying so hard to interact with her peers.  Her sensory system was on overload...and I could tell we were headed for the "BIG ONE" if we didn't take a break soon.  I was thinking..."if you think these are haven't seen a tantrum"...kind-of smiling to myself.

On the way to the trails...Addie has to potty.  OHHH the dreaded potty in public.  Addie hates public bathrooms more than anything.  "ok Addie...this is the only bathroom here" I tell her trying to muster up the courage to take her in.  "SQUEEEEEEK" the bathroom door is rusty and VERY squeeky...this sends Addie into panic mode...shreiking and laying on the VERY dirty floor.  I am scrambling with the heavy door and Addie rolling on the floor as a crowd begins to look on.  "Can I help you?"..."Is she ok?"...with every stranger that trys to help...the more upset Addie gets.  I wanted to scream "just leave us along so I can get her calmed down".  I quickly pull her "magic ears" out of the bag (these are her headphones).  This calms her a little...and we proceed.  Then other people walk in the bathroom talking loudly...flushing....the flourescent lights are especially "buzzy" of the lights is flickering...she starts screaming "scary light...scary light....scary light"....then it all comes to a head..."VROOOOOOMMMMMMM" the hand dryer goes off.  The headphones are not working well today....Addie is shreiking, flapping, rolling.  Oh my..."Lord Jesus give me your strength"  I'm praying to myself.  After many moments where I didn't know wether to cry or scream...and trying to stay as calm as possible for Addie...we finally escaped the bathroom....PHEW!!!!  I was so excited that we made it ...and she went potty in public.  This was SUCH a HUGE accomplishment!!  We were exhausted...but smiling.

Now we can "just walk"...I told her.  I put on her "heavy" backpack...that the OT suggested for calming the senses.  We have her sunglasses on because "it's too bright".  I watch her become more relaxed with every step.  Brother is snacking in the stroller...happy and quiet.  And we are off through the woods.  The farther we walk away from the people...away from the noises...away from the giggles and happy laughter of the playgrounds...the squeeky door.....the more Addie calms and breaths.  She finally stops trembling....then I watch her shoulders lower...the tension is melting away with each step.  The heavy weight on her back is grounding her sensory system and she seems to be beginning to enjoy herself again.   We walk in silence so she can unwind and cope.  I am so proud of her and so proud that we are actually able to help her calm down.  The OT's advice is working perfectly.  I am bursting inside wanting to hug her and scream "YAY we made it!!".

After a while we stop to look at some flowers.... I take the opportunity to tell her how proud I am of her for talking to the other children and how brave she was in the bathroom.  She stares into the woods for a minute...then smiles and just says "Yes I was".

As we walk...she asks "what's that...what's that...what's that".  "It's the wind"..."what's that"..."it's a bird chirping and talking to us"..."what's that"..."it's an airplane flying in the sky".  Suddenly I realize that I am discovering all the sounds and smells and sights of the woods through Addie's eyes.  No detail goes stone unturned.  It's truly a walk into her world...on our nature walks.  And I love every minute of it.  Somehow God uses His creations to make Addie come alive on these little quiet hikes.

Going to the park with Addie...brings new meaning to "a walk in the park".  Overall this was a good day at the park.  She attempted to talk to some new "friends"...she used the bathroom...she used her words.  I may look like it was a terrible day to some folks watching us...but these accomplishments are HUGE...and I was so excited for her.

On our ride home as Addie and her brother slept...I thought about the other people at the park and some of the hurtful comments they made.  I thought of all the things I should have said....and I prayed about it..and I felt some comfort in the fact that they just didn't understand.  Then the Lord really convicted me about all the times that I used to be one of those people that would look in disgust at the struggling mom in Walmart or at the park.  Thinking to myself..."Why can't they just control their child?  I'm never going to let my child do that!"  Boy...was I wrong...

The next time you are in the grocery store or at a restaurant and a child is acting out...or a little never know what that child has going on in their lives.  This may be their "walk in the park". These are experiences that may be hard for a child with autism...but it is SO important for them to aid in their development and growth.

We accomplished and learned so much that day in the park.  We have learned so much and come so far this year.  There was a time when I would have gone home after the first melt-down...I would never have stayed and tryed to teach her how to cope and work through these situations.  There was a time when I would have been too overwhelmed to take her into a public restroom.  There was a time I would have crumbled at the stares and comments.  But then Addie may have grown up and never learned to cope in these necessary situations.  I am so thankful for all the therapy and guidance and support that Christ has blessed us with this year...and how much that has helped Addie grow and learn.  I am so glad we are not alone in this.

Here's to many more "walks in the park"...

Tuesday, April 5, 2011

Addie's Village

"It takes a village to raise a child"'s an age old saying...but so true.  Having a child with autism or any special needs can be lonley...and asking for help may be humbling or heartbreaking or embarrassing.  Even though I'm just starting this journey I have learned right away... that it takes a village.  It takes a support network of family and friends to make it through.  Be assured that behind this clueless scrambling mother and child...there is a BIG village.  There are people supporting, loving and praying for us every day.  We could never made it through this journey alone.

Many moments feel overwhelming for any mother....wether you have typical or special needs children...there many moments that you feel alone and isolated in this journey of parenthood.  From the moment you feel the first kick...they breath their first breath...or you hear that first heartbeat on the feel the weight of overwhelming responsibility and unconditional LOVE.  This life that isn't even born yet...and you are already a mommy.  It's an incredible feeling.

We all have dreams and visions of what motherhood is "supposed" to be like.  And what our lives are "supposed" to be like.  I thought I knew what I wanted my life to be...and I mistakingly thought I had some sort of control of that...I thought it would never happen to me.  My children wouldn't have any sort of special needs. can happen...and it did...and our lives are forever changed.  But I'm learning that what I thought I wanted... wasn't actually that great after all.

I'm just begining this journey..walking away from what I thought my life was going to be like.  I still have many moments when it's lonley...scrambling from therapist to therapist....seeking all the things that will help your child reach their full potential.  Searching for the right doctors, books, information...filling out evaluations, answering questions, meetings...and more meetings...appointments...and more appointments.  It feels like it's never going to end.  As the mommy..many times you are the main advocator for you child and it can be overwhelming and lonely because you are the only one that can answer those questions and sign those papers and deal with the day to day constant therapy.

Though there are mountains and valleys...and there are those moments where I stand alone and walk those "red lines" with Addie...I am not alone in this.  God has given Addie a village!  These people in Addie's life love her, support her, and accept her just the way she is...not for what they think she should or could be...but just for her. I am forever grateful for all the prayers and love that they have poured over our family.

Having a child with autism has made me ask for help more times than I ever thought I would.  It has humbled me and amazed me.  There are so many wonderfully strong people in Addie's village.  They have listened, cried, prayed, and jumped for joy with us.  They have seen us go through all the ups and downs...listened to all our crazy questions...and supported our nutty ideas.  They have bought us books, shared their stories, and been patient with our learning.  Some even knew before we were ready to accept that Addie was different.  They waited for us and prayed for us to open our eyes.  I could not have made it through and Addie could not be as successful as she is without our BIG village.

Every person she touches...every person in her village...has their own butterfly journey with her.  Some might have even had to walk "a red line" or two with her.  It's not easy to be in her is a true test of faith and understanding...but it is so rewarding.  We all think we are here to support and teach her...but instead we walk away inspired and amazed by her.  Our lives are fuller and richer for being a part of hers.   She has opened our eyes to a whole new world.  She has opened our hearts and educated us on what autism really is.

Thank you God for the people in our lives that support us...many of you reading this are in Addie's Village...we can never thank you enough.  We love you and Addie loves you.