Promotion Sunday...

This was “our” promotion Sunday....

At our church...the promotion Sunday for everyone was last week...but we decided to wait and make this “our promotion Sunday”.  The regular promotion sunday is full of fun crazy events for all the kids.  It’s sort-of like “open house” at school.  It’s great for most families...but for a child with autism it can be very overwhelming.  All the parents being in the room...with all the kids...with the singing... and the noise....and a new classroom...and then they served snack (meals are a VERY hard thing for Addie).  So I had made the decision...

We had just moved...she had changed classes at school...and I knew she was pretty much DONE with all the transitions.  We took the week off...and waited until the next Sunday when things would be calmer and a little more normal for her.  

All week we had prepped and prepared for Addie to transition to a new sunday school class.  We talked about it over and over.  Where she was going to go...why she had to switch...what they might do in class...did they have a quiet potty...etc...  She has to know EVERYTHING.  We talked about it the night before...she prayed about it at bedtime...and I was hoping things were going to be smooth.  I was really feeling pretty proud of myself for all the prep work and the decision I had made to miss the "crazy" Sunday. I even had a nice “cheat sheet” made for her teachers...with all her likes and dislikes... and ways to help her cope in the classroom.  I was definitely giving myself a pat on the back...

So the morning came.  We got to church 30 min early to let her see her new room...giving her a chance to process the new room without the classmates and teachers.  The room was nice and quiet.  She walked in... and stopped...just staring for a few minutes.  I was holding my breath to see what she would do.  I showed her that they had already moved her nametag to the new room.  All the sudden her “light bulb” switched on and she said...”I like it...I really like it...I like my new room mommy”.....Phewwwwww....I sighed a huge sigh of relief.  “Oh Lord thank you....thank you for this quiet moment in her room...thank you for giving me the wisdom to prepare her”.  I was on cloud nine...feeling really excited for Addie....really proud of her...and of course a little proud of myself too.

About 30 minutes later...I started wondering what was going on.  There were no kids coming...no teachers....ummmm...had I made a mistake?!  I could hear the music starting in “big church”...so I knew something wasn’t right.  I peeked into the hallway and asked someone who was teaching this class.  The looked puzzled and said...”there’s no kids sunday school today...we’re commissioning the teachers...they have to come in the sanctuary with the adults.   Ohhhhhhh NOOOO...the loud sanctuary...she could never make it through a whole service....are they crazy??!!!  A cold chill washed over me.  I am the worst mommy ever.  Oh I am such an idiot.  How did I miss that email...how did I not know?  I vaguely remembered something being mentioned about this....I vaguely remembered thinking we would have to skip that Sunday....but it hadn’t even registered with me all week.  

I looked back in the classroom at Addie who was now playing blissfully at the lego table.  Stacking and sorting the blocks...so happy and comfortable.  What was I going to do?  What could I do?  I knew I was about to rock her little world...and there was nothing I could do about it.  

I thought about leaving...but little C was already happily settled in his new class.  The younger nurseries were still open....and we weren’t about to go and disrupt that.  So we decided to brave the adult worship service.

“Lord here goes nothing...please let the people around us be understanding...please help Addie to stay calm...please let her understand...please give me patience Lord”...I was praying as I approached Addie with her legos in hand.  “Addie...we are going to change our plans today.  Your new teachers are going to be in the big church with mommy and daddy...so all your friends are going to the big church too.  Next week we will come back to your new class and you can stay here and play legos with your friends.”  She was dead silent...stopped in her building...staring at the legos...Then she exploded...  “No no no....I am in my new class....my friends are going to come...my teachers are going to play legos with me...there are two chairs...there are two chairs...there are two chairs”  She had been telling me that her teachers were going to sit with her in other lego chair.  So she began to chant about the chairs and nervously stack more legos.  I took a deep breath...waiting a few minutes to give her some time to process.  I repeated myself again...”Addie we are going to change our plans today...blah...blah...blah”.  “Oh Lord help me know what to do...should we leave...is this too much for her”  I was praying over and over trying to decide if I was pushing her to do something she couldn’t do or if I should try and give her the opportunity to work through it.  Then I got my answer...Addie suddenly stood up and walked out of the room.  

Walking down the hall...she was fumbling with her lips and doing her stimmy humming...I knew she was getting anxious.  I watched a few other families finding out about sunday school and quickly telling their kids that they needed to go to "big church"...and jelously watching as the kids barley reacted and calmly walked in the sancutary.  I had a moment where I was a little angry.  This is nuts...how is she supposed to make it through a whole service.  And I thought about how it wasn't fair that the other families seemed to think it was no big deal to have last Sunday crazy...and this one too.  "Lord it just isn't fair that this is so hard for us...and it's so hard for Addie...it's just not fair."  Just as I was having my own little meltdown in my mind...we got to the big doors with the music booming from inside.  Here we go....She froze at the big doors...in a trance she wasn't moving....so I picked her up and carried her into the big room.  My husband and I exchanged nervous glances.  We sat on the back row at the end...for easy escape.  There were lots of other kids in the service...siting quietly with their parents...coloring...eating “quiet” snacks.  It reminded me of sitting in church as a kid.  Again I was a little jealous.

As soon as we found our chairs....the band geared up even louder...the drums...the guitars....and then the singing started...and the congregation jumps to it’s feet clapping and dancing to the music.  This is usually my favorite part of worship...but I knew this would be a nightmare for Addie.  I look at Addie...standing in her chair...eyes wide and nervous....her hands firmly planted over her ears...she screaming “ahhhhh...no....no....tooo loud....tooo loud....too loud”.  Of course no one could hear her over the booming music.  So I knelt down beside her...picked her up.  She was like a stiff board...her little heart was about to pound out of her chest.  “Oh Lord what have I done...this is a terrible idea....ok just calm down and explain this to her”  I whispered in her ear “we’re singing songs about Jesus....everyone is so happy and that is why they are singing so loud”.  She stopped screaming and looked at me.  She kept her hands over her ears...but she was quiet...she was just listening.  I winked at my husband...he smiled.  Even though I could still feel her little heart beating out of her chest....I knew she was calming down a little bit. 

Finally we made it to the last song...and it happened...

She took her hands off her ears and started to clap with the crowd!!!  I wanted to jump up and down and hug her...of course I refrained.  WOW...this was huge.  I quickly nudged my husband...he had a huge smile on his face.  She wasn’t smiling or singing...and it wasn’t really with the beat of the music...but she was clapping....she was trying to join in.  It was such an amazing moment.

I began to feel calmness...I began to feel relieved...”thank you Lord...thank you”  Maybe we are going to make it through this morning.  The music is over and we can sit and relax a bit.

Of course, I still was having my moments where I felt it wasn't fair as I watched the other kids and parents handling the service with such ease.  I wanted that for Addie and for us. All the sudden...the pastor caught my attention.  "It isn't fair" he yelled...I immediately turned my focus to the sermon....whoa...chills ran down my spine.  The sermon was about Jesus's parable of the man that hired the workers and agreed to pay them all the same.  At the end of the day some of the men had worked all day and some only about an hour...and he paid them all the same.  The ones that had worked all day were angry...they didn't feel it was fair.  (Hello ...that's me....yes Lord....I'm listening now )  The land owner told them not to be angry about his generosity to the ones that only worked an hour.  WOW!!  It really hit me.  I shouldn't be angry or jealous of other people's grace.  The Lord gives us exactly what we need.  We have exactly enough grace for today....we shouldn't worry about tomorrow....we should compare ourselves to others....it's not a competition...it's not a race.  The ground is level at the foot of the cross...and none of us deserve any of the blessings that we have been given.  It's only by God's grace. I should be focused on Him and not on comparing myself to others.  It was such an amazing message...and one I really needed to hear.  It may not always seem fair....but rest assured the Lord is giving me and those around me exactly what we need.  Through His grace and mercy and perfect plan for our lives. 

During the service...I teared up at so many moments.  I watched Addie as she sat and drew in my little notebook that I usually take notes in.  I was flooded with memories...sitting between my parents in church.  It was such a special moment.  Then my husband put his arm around her...just like my dad used to do....and she casually leaned up against him as she drew.  He had the biggest smile on his face...and my heart just melted. 

The people around us were so gracious.  A few concerned glances...while she did her constant humming...constant twirling and fidgeting in her chair...constant clicking her pen as she drew...constant tapping the chair in front of her with her toes.  And of course asking every few minutes...”what are we going to do now?” (loudly I might add...Addie doesn’t like loud noises...but she doesn’t notice her own volume control and her voice is often loud when she doesn’t mean it to be).  But it was ok.... I was so proud of her.  She was siting in church....in a crowd...with a PA system...with loud music...and here she was...handling it all.  

And guess what??!   She did it...she made it!!!  The WHOLE service...she made it!!!  And we made it.

I started my morning so proud of myself...thinking what a super duper job I had done preparing her...but I ended my morning so proud of Addie...so thankful that we didn’t leave....so thankful that we had been blessed with this huge milestone....so thankful that the Lord gave me just enough grace for today.   

On the way home I saw a billboard for the ice capades...something I’ve always wanted to do with Addie...but didn’t think she would be able to enjoy it with the crowd and loud music.  I poked my husband and pointed at the billboard...he smiled and said “maybe so”.  

I am so proud of her and how far she has come this year.  A year ago she would never have been able to set foot near those big doors with the loud music without crumbling onto the floor in total meltdown....she would have never been able to overcome all that she had today.  There are so many times that I question myself...is she ready for this yet?...can she handle this?  And sometimes she can't...and we fail miserably...but if we never try then we will never know.  She has done so many things that I never thought possible.  How can I put a limit on what God can bless us with.

I'm so thankful for God's grace and mercy...so thankful for this milestone for Addie...and so thankful that "it's not fair".  I am a different person...a different parent...a different friend than I ever thought I could be.  This journey has blessed me and changed me beyond my wildest dreams.  

I'll never forget this promotion Sunday...because it truly promoted us all...

  

Our Perfect Storm...

This is our perfect storm...and our journey through it...

Let's set the stage....it's two years ago.  My husband and I have great jobs..."typical healthy children" (so we thought)...a great house in a perfect neighborhood....everything was smooth sailing.  We weren't wealthy by any means...but comfortable.  We shopped at the organic grocery store...took vacations...enrolled the kids in Little Gym, etc...

Then it hit...without warning.  The climate was just perfect...the circumstances mounted quickly...the waves grew taller with every gust of wind...the clouds kept getting darker...the wind howled...and many times it has felt like this boat was going to break in half.  

With the birth of our son...our lives quickly changed.  He had a slew of medical problems right from the start.  So huge medical bills quickly piled up.  We also started having Addie tested at this time.  She had just turned 2 and we knew something was wrong.  Carting the kids from one specialist and therapist to another.  I quickly had to cut my hours at work to make it to all the doctors appointments.

Next came my husbands job.  He was working two jobs to make up the difference.  Then he lost his full time employment...and with that our health insurance.  We began sinking fast in all the bills.

Selling the house was the next logical step.  But since the market had depreciated in our area we were forced to do a short sale.  So on top of rushing around to doctors and therapists....we were going through all the "fun" that the mortgage company puts you through to avoid foreclosure.

We finally found a rental house that a co-worker would let us rent inexpensively until we could get our feet on the ground.  The house needed a ton of work...and this was a huge challenge from the start.

Suddenly we found ourselves... yes, two college graduates...waiting in line for food stamps, at the welfare office, and applying for medicaid.  It was a humbling experience to say the least.  Its a place I never ever thought I would be.  I felt like a complete and utter failure...and there was no way out.  On top of that...I felt so guilty for ever judging people in this situation.  For the first time I looked at the homeless person on the corner and thought of how quickly that could be me.

About a month after loosing our house....and moving....we got the official diagnosis for Addie...Autism.  We started early intervention...speech therapy...OT....support groups.  We just dove in with both feet.  Jumping into an unknown world.  We grieved...we reeled...we were spinning with Addie.  I felt like the waves were never going to end...and there was no light at the end of the tunnel. (see my post - My Little Butterfly)

Meanwhile the kids medical problems continued to worsen...it was a tough winter.  Many trips to the ER...several hospital stays...and more specialists than I care to mention.

Then came little C's diagnosis and evaluations....early intervention again...more therapy...more doctors. (see my post - Another Butterfly Is Born...)

Many days I felt like my life had swallowed me whole.  I didn't know who I was anymore.  I was in survival mode.  I felt like the waves were too big...and I didn't even want to wake up to see what tomorrow would bring.  The fear and anxiety were unbearable.  I was having heart problems and anxiety attacks...this was no way to live.

I think in the midst of all that despair.... the Lord knelt down and wrapped His arms around me.  He had been there the whole time I just hadn't noticed.  I had been so focused on the wind and the waves and the storm clouds brewing...that I hadn't noticed so many of Christ's amazing blessings in my life.

Sitting in church one sunday I was hit with my story.  It's the story where the disciples are out on the water and they are caught in a huge storm (Matthew 14).  They try everything they can on their own to save themselves from the rocking waves and boat.  Then just when they are about to sink...they call on Jesus.  (hello...that is sooo me!!!...I got chills as the pastor read the verses.  I was frozen to my chair hanging on every word).  Then when Jesus came to them on the water they didn't even recognize him.  (wow...yes...I don't see God in this storm).  They were so focused on the wind and the waves that they couldn't see him.  When He calls Peter out on the water...Peter walks towards him until he becomes afraid.  He stops looking at Jesus and starts to sink.  Immediately Jesus pulls him out of the water. (even my lack of faith and insecurity...you will not let me sink...yes...yes Lord I am hearing you).  Then Jesus calms the storm.

WOW all the blessings the Lord had been giving us...and I hadn't always recognized Him midst all the chaos.  I had trouble accepting gifts and help from others...I had fear...I had self pity...I had pride...I had too many things in the way clouding my vision.

When I opened my eyes and focused on Him.  I could see....I could suddenly see so many amazing things that have happened...so many unexplainable miracles...so many acts of grace and mercy.

Seriously...get ready for some chills.  Here are just a few......(because I could go on for days)

Our house sold in 10 days...let me rephrase that - we had 4 offers in 10 days...yes, in this economy.  When our air conditioner died the day of the closing...the Lord gave us $500 at the closing table....on a short sale (this doesn't happen).  And guess what?!....it was the exact amount to fix it!

When we didn't have money for groceries...the Lord provided for us.  Several times food literally arrived in the mail from family members....they didn't even know how desperate our situation was...but they just felt lead to help us.

When we couldn't afford Addie's new school that she needed desperately...the Lord provided.  A week before we had to pay the tuition...someone felt lead to sponsor her and paid it for us!!  (see my post...Butterfly School)

The old rent house had a fridge that didn't work (it was actually duct taped together and full of mold).  So a dear friend calls and says..."don't argue with me...I'm not taking no for an answer...I'm bringing you a fridge...those kids are not eating out of that moldy thing".  An hour or so later...a beautiful working fridge came literally to our door step.

When the dishwasher broke in the rental house.  The next day at work someone said..."Hey, does anyone need a dishwasher?"  YES...this really happened...free dishwasher!!!

The landlords let us work off a few months rent by painting, stripping wallpaper, cleaning, and fixing lights, etc...  Our friends and family gathered together and helped us.  It was amazing to see the Lord gather all these people to help us.  We felt so loved.

The kids have been blessed over and over again with the best possible therapists and specialists.  We have been spared so much.  Every time we have been in the hospital I see other kids and families there that are not going home as quickly as us...and I know how truly blessed we are.

Addie had a private speech therapist that wanted to work with her at no charge...how crazy is that?!  And then we were given blessings through the Greyson Foundation to continue some of her other therapies.

Jason's job situation has slowly and steadily improved.  Finding and searching for a new job grew him in so many ways.  He's more confident...more sure...and more hard working than ever.


We were able to move to a safer home a few weeks ago.  Then our new apartment complex had a mix-up that worked in our favor...and we got a much nicer place than we could have ever afforded.

Over and over again...we have been blessed.  Over and over again the Lord has shown himself to us.  We may not always see it...and the stormy waves may still be coming...and I still call out "why me"...and I complain....and sometimes my pride gets in the ways and I struggle with accepting these heavenly gifts.  But he still picks me up....despite my shortcomings...He is still there guiding me and wrapping His arms around me.

I thought I was going to break under all the weight.  But I didn't.... the Lord held me up...He didn't always calm the storm...but He brought me through it.  He never let me sink.  He has made me stronger...more understanding...more blessed and thankful than I ever thought possible.

He never said life was going to be perfect..."For in this world you will have troubles...but take heart because I have overcome the world." John 16:33  Even though we don't know when or how....He has already overcome our perfect storm.  He knows how it's all going to end.  He has a perfect plan for all of this.

Many times I wonder why...like so many moms with special needs children.  Why did He chose us to have these butterfly children.  And like so many families going through job loss and financial struggles.....why do we have to go through this colossal perfect storm.

But I think sometimes He has to bring us to our knees... so that we may stop....and look up into His face.  It's only then that we can sit peacefully in His presence...with His strong loving arms wrapped around us.

Because I do...

It's a quiet day in the park...and I was about to learn another one of life's lessons.

There were only a few kids playing quietly...so it's the perfect atmosphere for some socialization with Addie.  After seeing another little girl Addie's age...I prompted her to ask and see if she wants to play.  To my pleasant surprise Addie runs over and says her "script".  "Hi my name's Addie...what's your name...do you want to play with me?...Ok my name's Addie...what's your name...do you want to play....do you want to....do you want to."   Addie is repeating herself over and over.  The other little girl is looking a little confused.  I'm waiting eagerly to see if she'll say yes.  "Oh Lord please let her say yes....come on...say yes...don't notice she's repeating...just say yes".  Then the other little girl furrows her brow and says "why do you talk funny?  what's wrong with you?".  I'd be lying if I didn't admit I teared up a bit.  I tried to look away so the other mom's wouldn't notice.  I was so proud of Addie for going over to her and trying to talk to her.  I wished she could have just said yes.  Of course we've heard this before..but it still punches me in the gut every time.  I'm standing there praying for strength....and trying to remind myself to be proud of the little milestones and not get carried away.

I wasn't sure what Addie was going to do...usually she meltsdown...or starts jumping around and flapping her arms screaming....she just doesn't know how to respond.  But today was different.  As I was looking up at the heavens trying to pull myself together and praying for a way to explain this to the other child.  Addie shouts...."BECAUSE I DO" in a very stern confident voice.  WOW....I'm speechless....I look down and see Addie about 6 inches from the little girl's face.  The little girl looks shocked and glances at me for help.  It was a strange moment.  I was so proud of Addie for expressing herself....but I knew it looked strange to the other mommies...and she had possibly scared the other little girl by yelling in her face.  But I knew this was HUGE for Addie.

Bending down on their level...I reminded Addie to talk quieter when her friends are close.  I wanted to scoop her up and hug her tightly and tell her how proud I was....but I restrained myself since that would only upset Addie.  I calmly told her how proud I was of her and that she had used her good words.

Of course, the other little girl had run away by this point...confused and upset.  She was yelling across the playground asking her mom "what's wrong with her?...is there something wrong with her?".  The other mom was trying to hush her daughter and smiled sheepishly at me.  As I tried to walk over and explain...she quickly hurried away with her child.

I sighed and looked down at Addie...she was pleasantly oblivious to the awkward situation and was sitting scooping up mulch and running it through her fingers.  I almost laughed out loud.  Here I am almost in tears...worrying about Addie's feeling being hurt...worrying about her being picked on or never having friends....worrying about talking to the other mom.  And here's Addie calm and collected....she doesn't seem to care in the least.  She gave her answer..."because I do"....and now she has moved on.  How beautiful is that?!

So many times I try to explain myself...I worry about what other's think...I worry about what I say or didn't say...I question myself about why I feel a certain way or why I don't.  It's overwhelming the mind games we play with ourselves.  But not Addie.  Her answer is..."because I do".  I love that.

I've been noticing myself this week...worry worry worry....taking the world on my shoulders.  Why God this and why God that....worry worry worry...when Lord this and when Lord that....worry worry worry.

Addie says...it's just "because I do".

But I think the Lord was trying to show me that....it's just because He does.  Having faith.  Simple and perfect.

As I watched her sitting in the mulch playing obliviously.  I thought about how wonderful that would be.  I had just been shouting at the heavens a few minutes early...having one of my "why God ...why me God...moments".  And here Addie is just sitting there playing.

As I teared up again....I felt like God was telling me...it's just because I do...

It really hit me...that's all the explanation I need...at least all I should need.  He made Addie just the way she is...and He made her for a reason...and He has a plan for her life.  And it's because He did.

So I bent down....sitting in the mulch....trying to worry a little less and trying to play a little more....

O' to Rush a Butterfly

My lesson in waiting...

Addie is perched on the edge of her seat nose to nose with the miracle that is unfolding right in front of us.  "what's it doing mommy...what's it doing mommy...what's it doing mommy?". After waiting for weeks for these little caterpillars to turn into a chrysalis and finally emerge as butterflies...it's all happening.  Slowly slowly slowly...the butterfly is trying to crawl out of it's comfortable chrysalis.  Addie is so excited she's shaking...chewing her hair...her heart is beating through her chest.  Her little eyes are totally focused...not even blinking as she watches.  So here we are... just waiting and watching...

This looks like a picturesque moment...and it was...but leave it to my craziness to ruin it.  We were LATE for school.  I was sooo frustrated with these butterflies..."ugh after waiting all this time...and NOW you want to come out".  So I began to pray...or more like silently shout at God..."oh Lord...please help this butterfly to hurry up...Lord we are going to be so late...help this little butterfly come out faster...come ONNN".  Then as if an answer to my fervent prayers...another chrysalis starts to crack.  Addie is shrieking and flapping her hands..."mommy moommy mommy...it's coming...it's coming...it's coming".  Meanwhile, I'm silently about to pull my hair out..."AHHHHHH...Oh NOOOO...come ONNNNN...not another one".  These butterflies are taking forever...we are LATE for school ... I'm going to be late for work....AHHHHHH...

As I stood there pacing silently in my "mommy frenzy"...I felt the Lord saying...just stop...just stop...just stop.  Look at this beautiful miracle that is right in front of you....look at this beautiful moment I've blessed you with.  Suddenly I remembered the verse "Martha...Martha you are worried and bothered about many things" Luke 10:41...I felt like He was whispering this right in my ear.  We had a sermon in church about this exact verse...Martha had good intentions preparing a meal for Jesus...but she missed the point.  The point was to spend time with Jesus.  My intentions for getting to school and work on time were good...but I was missing the point of being in this amazing moment with Addie.

I got a little teary eyed as the Lord revealed to me that I was missing this amazing moment....I was missing the Lord's blessings...all because of my silly distractions...

Totally giving up...I sat down beside her...plopped my bags on the floor...and just stopped...stopped rushing...stopped thinking...just being in the moment.

As Addie was watching her butterflies come alive...I was blessed with such an amazing surprise.  I got to watch my own little butterfly come alive.  She was telling me the whole process...showing me the butterfly's proboscis (it's tongue)...telling me to hurry and get some oranges for it to eat...telling me about the blood pumping through it's wings...telling me how long it was going to take for it's wings to dry.  I was utterly amazed how much she knew about these butterflies.

I felt so guilty for almost missing this amazing moment with her.  "Thank you Lord...thank you for stopping me".  The Lord was teaching me a lesson...I knew it...I felt like He was saying to me.....you cannot rush a butterfly.  Addie and the butterflies are on God's perfect time...not mine.

Addie has taught me so much in her 4 years.  But one of the most amazing things...is to just stop and wait....wait for her...wait on God...wait for my butterfly.

Addie takes a little longer to process change...to figure out how to get her shoes on...to find the words to say...to decide if she likes the food on her plate...to comprehend what you just said to her.  She may need a little extra time...but she can do it...she can come out of her chrysalis.  And it's a beautiful thing.

"Addie go get your shoes".....I hold my breath and count to 10...just give her a minute...I tell myself....my mind whirling...did she hear me?...did she understand?...Should I just go get them for her? Sometimes there is a long pause...or maybe she's staring into the distance...and then after a few minutes she suddenly gets up and goes to find her shoes.  It sounds like a simple request...but for Addie it's HUGE.  These little moments are milestones for her and we are overjoyed.  I have to remind myself what would happen if I hadn't waited...if I had rushed her...she never would have learned to get her shoes.  It's these little moments when she emerges from her chrysalis.  It gives me hope and I am so blessed to see her come alive.  It's these little moments that she starts to become a butterfly.

The Lord has taught me so much through waiting.  I've learned that my schedule and my timing means nothing.  The Lord has perfect timing.  I make a mess trying to do everything on my own.  As my Dad always reminds me..."For God is not a God of confusion but of peace" 1 Corinthians 14:33. I need to just stop and wait....lay everything at the foot of the cross...and let Him take control.  He may not give me an answer as fast as I want or the way that I want him to.  But there's a reason for that...He knows what's best...and His timing is perfect.

It may take Addie a little longer than most kids to do some things...it may take her a few more trys...it might take a picture or two...or maybe a social story...or her magic quiet ears...she may need a little more instruction and help...but she can do it.  She can come out of her chrysalis when she's given the chance.

When I wait on her...and when I wait on God...I am amazed with these beautiful life moments where I see a miracle.  I see a butterfly.

Autism Land

Admitting...anyone willing to forget the "normal"...willing to forget what is "appropriate"...and willing to open your eyes to a whole new world...

Before taking a journey into Autism Land...keep in mind that every resident is different...and every visitor has a different experience there.  It may even be hard to tell who is a resident and who is a vistor at times.  This is a "travel guide" to Autism Land....of course it's based on my personal experience as a somewhat permanent visitor there...

In Autism Land you "say it like you mean it".  Throw away the "Normal" slang...throw away the jokes...everything is literal.  So just say what you mean...be blunt and straight forward....don't hint...don't "beat around the bush" (and yes, if you said that to Addie she would be looking for a bush).  Last week I called Addie a "silly goose"...she was VERY upset...."no...no...no.... I am not a goose...I am Addie...I'm not a goose....I'm not".  Of course...sometimes this can be funny...and it does makes for some very humorous moments.  My husband, J, and I usually look at each other...and silently laugh with our eyes.  But it's really best to be clear and direct.

In Autism Land a couch is not a sofa...a cat is not a kitty cat...big is not large...  Each object has a name...only ONE name.  Sure you may think... "couch", "sofa", "seat"... they all mean the same thing right?  Wrong in Autism Land.  Addie does not understand what you mean if you call an object the "wrong name".  She might scream...cry...or correct you bluntly. It may not make sense to you...but that's ok ... you don't make sense to her either.

In Autism Land change is not welcome.  Addie likes everything to be the same.  If I made toast first yesterday....then I can't make eggs first today.  Like many of the residence of Autism Land...she is having to live in your world...and is having to understand things that make no sense to her world.  So, I can't say I blame her...If I had to deal with all that she has to understand and cope with everyday...I might want a little sameness too.

In Autism Land there are rules.  Everyone has "rules".  I call them "rules" for Addie...because they are just that.  They cannot be broken...and if they are... there needs to be fair warning and many discussions about it before hand.  For you and me...it may just be a "pet peeve"...like a certain side of the bed you like to sleep on.  But for Addie they are rules.  A few of Addies rules ...stand in a certain place in the bathtub...have me count to 7 while pouring water on her head...dress in a certain order (underwear first, then shirt, then shorts, then glasses, then brush hair)...hair brushing is five strokes on each side of her head...bed time is the biggy (one story, lay down, pull up covers, tuck in caterpillar, one kiss, one hug, prayer, walk to door, blow kiss, then we recite the entire schedule for tomorrow - yes, even down to what are we going to eat for breakfast).  It may sounds crazy to some...but these rules help Addie cope with the fact that she is trying to live in our world...it's a comfort to her...and it keeps her calm.  It helps her cope and to function.  

In Autism Land you may not speak the same language.  Addie's language sounds like your language...but it's not always the same language.  She may not always understand you and you might not always understand her. Addie may yell loudly in your face and scream "HELLO"...but she may talk quiet as a mouse to ask for help in a busy classroom.  She may repeat herself over and over and over.  It's ok this calms her and helps her to comprehend.  She may begin to quote a TV show or a book.  She may just want to tell you all about butterflies...she doesn't want you to interrupt...just wants to talk.  C has another language.  His language is with signs or pictures...or maybe some gestures or sounds.  He talks..it's just not the same language.  If you are patient and quietly listen and watch...you will understand their language.  You will hear beautiful stories from a child.  You will see the glimmer of light in their eyes.  Your heart will be touched and your mind will be opened to something new...a little bit of their world.


In Autism Land things may not always seem "appropriate".   Addie may run up to a person on the playground and scream "my fingernails are painted"...and then run away.  The person may look confused...but it was her way of trying to interact.  She may tell me sharply "be quiet mommy".  To others this may sound rude or disrespectful.  But I know that this is such a HUGE step for her.  When my voice was too loud for her a year ago Addie would have had a huge melt-down...and it would have been a rough day.  So when she uses her words to tell me to "be quiet mommy"...we rejoice...even though other's may think it's "inappropriate".  It's actually very appropriate.  It may seem like Addie says inappropriate things at the inappropriate times...but in reality it might be more appropriate than you think.


In Autism Land sock seams and tags are a HUGE deal.  "AHhhhh....there's something in my shoe...ahhhh...it hurts me....ahhhhh"...Addie screams as I try to pull off her shoe.  To my surprise...there is nothing there.  I should correct myself here....to me there is nothing....but to Addie the seam in her sock is painfully uncomfortable.  She cannot continue our walk because of the painful seam.


In Autism Land honesty rules!  "Did you hit your brother?"...."Yes I did"..."Why?"..."I don't like him"..."Is that nice?"..."No"....this is a typical conversation with Addie.  She has never lied to me...she has never tried to hide something she did wrong...nor does she ever assume anything.  She will tell you if she doesn't like you...or if you are too loud...or if you smell.  It might be funny or hurtful.  But when she says "I love you" you know it is real and true and for no other reason than the fact that she loves you.  So skip the pleasantries...it's just the pure raw honest truth in Autism Land.  I guess could all learn something from this one.

In Autism Land the lights can be loud.  Addie calls them "scary lights"....the dreaded fluorescents.  She says they are flickery...and too loud.  She has "super sonic" hearing and notices the little things that we tend to drown out as background noise. 


In Autism Land emotions may not be what they seem.  Addie may scream and laugh when she is getting upset...she may have a furrowed brow when she is happy...she may be staring out the window when she is really listening to every word you say.  You can't always read her emotions...and on the flip side...she has a hard time reading your emotions...she doesn't notice your tone of voice or that "motherly LOOK" you give her when she has stepped over the line.  She doesn't see the subtle hints and body language.  Sometimes I wish I could do this too.  Just ignore all that...and take life for what it is...plain and simple.


In Autism Land the world is seen in pictures, patterns, and colors.  Addie immediately notices what color you are wearing...especially if it's green (her favorite).  She will then start matching it up to all the other similar colors in the room.  Don't try to pass off orange for red...she will correct you.  She always knows if things are the same or different.  She likes to organize....by color, size, and shape.  She likes to count things.  She likes to make lines of similar objects. She makes the most complicated beautiful block towers (and she would correct me...as she calls them her "machines").  As a designer I love to watch her create patterns and lines...I love to watch her budding art skills.  Her creativity always amazes me.

In Autism Land there is true passion.  When Addie likes something....she REALLY likes it...and I mean totally whole heartedly passionate about it.  Her passion with butterflies has lead her to learn all the different species of butterflies and the entire life-cycle by age 3.  One day...while hiking through the woods...she says "that's a black swallowtail".  I looked at her and then at my husband and we shrugged.  I wasn't sure what she meant.  When we got home I realized that one of her books had the different butterfly species in the back.  I asked my husband and found out he had been reading those names to her....and she was RIGHT!!  It really was a black swallowtail.  From that day on...we have seen her recognize many different types of butterflies.  She even figured out the different between moths and butterflies...between male and female monarch butterflies...the different types of caterpillars...how the caterpillar sheds it's skin...what their favorite plants are...and many many many other facts and findings.  She has such a thirst for knowledge.  We just keep encouraging her...keep on praising our little passionate butterfly scientist.  I never would have had this type of concentration at her age (...yeah right...who am I kidding...I don't even have that kind of focus at my age now).  She just continues to amaze me everyday with her sheer passion and brilliance.

Autism Land is a gift.  It will change you forever.  Being a permanent visitor has taught me so much in understanding, patience, humility, and tolerance in my life.  It has brought me to me knees...it has put me in the clouds...it has taught me life lessons that I am forever thankful for.  I will never again look at someone else and judge...I will never again think that it can never happen to me...I will never again think I can do this life on my own.  The Lord has used Autism Land in my life to show me His love and strengthen my faith.  He has blessed me over and over.  My two little butterfly residence are perfect in His sight.  And I know....He made them just the way they are.

So take a trip and visit Autism Land....you'll meet someone amazing....you'll laugh and you'll cry....you'r faith will be strengthened....and you might even realize that normal isn't so normal after all.

Butterfly School

This summer has taken us on a journey...to the butterfly school.  It began with huge leaps of faith...a ton of prayer....and ended with a blessing in disquise...

Before the end of the school year...I knew we had to find a new school for Addie and C.  Like many family's with special needs children, I found them caught in the "middle".  The school system said they needed to be in a regular classroom...mainstreamed...despite their behavior problems and verbal delays...they are both highly intelligent for their age.  Of course, not just every classroom is suitable for a child with autism.  Not every preschool understands how to teach children with autism.  Not every school accepts these challenges and focuses on their strengths.  We really didn't know where to turn.

I began to pray about this...pray for the right teachers...pray for direction...pray for peace about this decision.  Over and over, every time I asked one of our therapists or other families with autism...they all recommended the SAME school.  It was almost a little creepy to hear these people that did not know each other...with 100's of preschools in the area...all recommending the SAME one!!!  I had no idea why...I had never heard of this school...but I really felt the Lord was leading us to go there.

So, I made the call.  Immediately I asked the receptionist about children with autism...do they accept them?...can they work with all the therapists?...How do they handle the behavior problems?...Are the teachers educated in special needs?  I was waiting for her to say something negative...or maybe not understand...or give me a patient answer.  I was thankfully surprised...as she shared her personal story with me that her son has autism...aspergers syndrome.  She was so understanding and really encouraged me that everything was going to be fine and they know exactly how to work with all types of children.  She even told me how successful her own son had been in that school.  She told me about all the special training the teachers attend...and the many children that they have already attending with special needs. A wave of relief washed over me.  I was so excited.  This was the perfect school...mainstream...yet specialized in special needs...the perfect combination for my two little butterflies. Then I asked the dreaded question about tuition payments.  Of course, it was more expensive than the school they had gone to before.  We had gotten a scholarship based on our income at the other school...and I had no idea if we could get one...and for how much at this new school.  After I hung up the phone I was in tears...."Lord why did you send me to this school...I already love it...and we can't afford it....it's perfect for the kids...but what do you want me to do?".  The Lord was quiet...or I wasn't listening is probably more like it.  I was trying to figure out how I was going to do it myself...forgetting that He will provide.  I was in my mommy stress mode trying to call every other school...trying to see what else was out there.  There had to be a way....and I was going to figure it out.

Meanwhile I was asked to speak at a meeting with several educators and area preschool directors about Addie.  I was a nervous wreck...but somehow I made it through.  Afterwards, I was introduced to the director of the SAME preschool that everyone had recommended.  It gave me chills...it was another sign.  I immediately had such a peace when talking with her...and sharing with her.  She assured me that they have many children on the spectrum and with other special needs.  In that moment...I just knew I needed to go take a tour and see this school.

The day came for the school tour...as I walked in...I was praying "Lord give me a sign that you want us to go here...and we will somehow figure out how to pay for it...just give me a sign.".  I'm sure He was laughing at me...Duh...as if he hadn't given me several signs already.  As we walked around the school the director took me outside and shared with me her own story about her grandchild with special needs.  We both got teary eyed as we talked about it...and I knew she really understood and has a heart for these kids.  Next we walked into Addie's classroom....to my surprise...it was FULL of butterflies.  I almost burst into tears.  Her new teacher told me that her favorite thing is butterflies...they take trips to see the butterflies...they have a butterfly garden...they have a worm garden...they love bugs...and on and on.  Everything was sooo perfect for Addie.  Then I noticed they had a picture schedule on the wall...and a quiet corner to escape.  And to top it all off....The quiet corner was GREEN....Addie's favorite color.  She is extremely color sensitive...and LOVES everything green.  The whole time I had chills...every single detail was almost too perfect!!  I think God was laughing again...saying "you want signs....well here's some more for ya...how many signs do you want??".

I knew I needed to make a decision...quickly...they only had 1 spot left for Addie's age group.  I was in tears on the way home...."Lord...what are we going to do...we can't even afford the first month...why are you torturing me."  I think I was still trying to do it on my own...in my own strength...in my own logical way...this wasn't going to work.

We had to decide.  Summer was coming fast and we had to get the kids into school.  For me as a kid....summer was always a time full of fun...pools...beach trips...watching cartoons...no homework....making forts in the woods...playing kick ball until the lighting bugs came out.  Most kids love summer break....they love a chance to relax and not have the normal busy routine.  On the contrary...for a child with autism...the change in routine of being out of school for summer can be almost maddening.  Addie and C thrive on routine...and cannot handle too many changes at once.  Changing school was going to be monumental...and overwhelming for everyone...but they have to be in school.

After prayers upon prayers...we put down the deposit.  I knew everything was telling us to go there...the Lord was crystal clear that this is where we needed to be.  He didn't even "crack" any other doors....just left this one wide open.  It is honestly one of the HUGEST leaps of faith I've ever taken.  We paid the first month...and had no clue how we were going to pay for the next.  Honestly there were moments I felt a peace about it....and moments I was wondering if I was going crazy.  We applied for a scholarship...and just prayed...and prayed...and waited...and waited.

Over the next month I went to a seminar about autism.  Who was there?...And who ended up at my same table??  Addie's new teacher!!!  Again this was another confirmation of our decision.  I got chills when I realized that out of all these people we ended up at the same table for the day.  The teachers were taking their time to do special training in specifically dealing with children with autism.  It was amazing.

So the first day of school came and went.  Social stories...visits...driving through the parking lot....over and over and over.  We were super prepped for a major meltdown for Addie.  Meanwhile we were just discovering about C's needs.  Their teachers have been amazing.  After the first week or so...both were settling in and really beginning to enjoy themselves.  Every day when we get in the car for school Addie asks "are we going to my new school?"...and I say "yes"...."YAYYY" she screams.  This is a first for her...I have never been so thankful.

About two weeks before tuition was due...I was beginning to panic.  "What are we going to do if we don't get a scholarship?  Lord ...helllo....are you there??"

Then it happened...

Monday morning I was corralling the kids into school.  It was an especially rough transition that morning.  C escaped and ran away from me....straight into the director and a new family having a tour.  Then Addie got upset and left C's classroom door open...letting out several running toddlers.  Finally the teachers and I corralled them all back inside.  Addie was screaming "I don't want them to look at me....ahhhhhhh....stop....ahhhhhh"...about the toddlers in C's class.  C was screaming and kicking.  Phewww...we finally left C's class and headed towards Addie's.  One of her friends says..."hey Addie!!!".  Uh ohh I thought....here we go...."NOOOO....I don't want my friends to see me...ahhhh...don't talk to me...don't talk to me....ahhhhhhh".  Addie likes to be the first to say hello...and if she doesn't know what to say...she gets really upset.  After a little struggle...and hiding under a table...and a lot of prompting...she went inside.  The teacher slowly coaxed her into the group and she seemed to relax.  I stayed to peek inside the two-way glass and watch them settle down.  Finally both kids were settled and I headed towards the director's office to appologize for our dramatic entrance this morning...and to thank her for her help.

She asked me to step into her office.  My heart sank...I thought...oh no maybe we were really too crazy this morning.  Maybe she's going to tell me to try another approach, etc...  I wasn't sure.  She began to tell me about her church on Sunday.  The church supports the scholarship program at the school...and the pastor had asked her to speak on Sunday about the scholarship program.  She told me that she had decided to speak about Addie...but had kept her name annonomous, etc...  I totally relieved she wasn't upset about our grand entrance.  "That's great" I told her.  Then she said "After hearing your story, there is a church member that has felt lead to sponsor Addie".  All the sudden....I felt like she was speaking in slow motion and I hadn't heard her correctly.  "Sponsor Addie?" I asked...."Yes...sponsor...they want to pay for her tuition".  I felt a huge lump in my throat...my eyes immediatley welled up with tears.  We both just stood there crying and hugging.  I didn't know what to say...I didn't know what to do....I couldn't believe what had just happened.  TOTAL and complete SHOCK.  NO WAY...NO WAY...I just couldn't believe it.  I got in my car and bawled my eyes out all the way to work.  "thank you Lord...thank you Lord....thank you Lord....how could I have ever doubted you?...forgive me Lord...you are such a huge God....thank you for giving us the faith to put the kids in this school....thank you".

I called my mom and dad to tell them the news.  My dad was dead silent on the phone......then he told me about their Sunday school class.  On that exact Sunday...at the exact time the director spoke to her church and the person felt lead to sponsor Addie...his Sunday school class did a special prayer for our family.  They prayed specifically for Addie and C's school tuition and our finances.  A cold chill washed over me...and I was in tears again.  WOW...there is such power in prayer and in faith.  God called us to take a leap of faith....and in His perfect timing....He provided.  I felt like shouting from the rooftops.

This is the summer of the Butterfly School.  I'm calling it that because of the butterfly's that lead us there and the promise that God made to us.  I think Addie and C are going to fly there...maybe even soar...and I know they are going to be surrounded by the best teachers and therapists to help them in their journey.  I know this will give them the best possible start to their school career.

To the person that felt the Lord calling you to sponsor Addie....I can never thank you enough for answering that call.  You allowed the Lord to use you in His plan...you were a vessel for Him.  This has blessed our family in such a way that will change us forever.  You have truly made a difference in life of a child.  Thank you.

I have once again learned that I cannot do this alone.  There are so many people praying for us and supporting us.  We are so blessed and so thankful for this crazy, stressful, insane, maddening, beautiful, amazing butterfly journey.

"To the Journey...

...because Autism is where you've been, not where you're going.  It is the path you walk, but not the road you follow."

I wanted to share this beautiful painting and quote that was created by my sister...Aunt Leslie.  She is a wonderful artist & writer...and has been such a huge support through this whole process.  

Thank you so much girl...you are amazing...we love you.