In the Bittersweet

July 30, 2011

As we opened his birthday gifts, I realized how different my little guy was.  Most three-year-olds have an insatiable thirst to know what is in each gift.  I remember Arianna ripping through each package and exclaiming in delight every few minutes. 

I had Evan wedged between my knees, the sofa and the coffee table.  As we brought the first package over, I used hand-over-hand assistance with him to get the tissue paper out of the bag.  Then, to his delight I pulled out a Mr. Potato Head.  For a good 10 minutes, he fiddled with the head and body parts – even getting the shoes on the potatoes head.  He was quite happy.  In fact, I doubt he really needed any more gifts. 

But, of course, there were more gifts…

As we brought the next bag over, Evan became distressed at the rustling of tissue paper.  When I tried to use hand-over-hand with him, he went into full meltdown.  Something in my heart squeezed. 

Such a joyful time – birthdays.  Celebrating.  Happiness.

Shadowed.  It was okay that he needed more time with each gift.  It was okay that only certain types of toys would interest him. It was okay that he needed help opening them. 

As a mom, it didn’t feel okay that he was crying on his birthday while opening presents.  It was a shadow.  It didn’t ruin anything and we (including Evan) all had fun.  But it was a shadow. 

A shadow of what things are meant to be, how they are supposed to be. 

It was bittersweet. 

A shadow of Evan’s potential.

Because he has potential.  I refuse to believe otherwise.  It won’t be this way forever. 

So I’ll just remember the sweet.  How, after we sang ‘Happy Birthday’, he let out a loud “WOOH-WOOH”.  And how he loved his new trains…

And most importantly, Mr. Potato Head…

Evan Turns Three!

July 21, 2011

Believe it or not, the little man has turned three!  Its hard to believe this little guy…

Has grown into this little dude…

We love him so much and are celebrating his birthday today! 

When I see people at church or in the grocery store, they sometimes ask me ‘How is Evan doing?’  For a long time, it was a hard to spit out an answer.  ‘He still doesn’t talk…’ is not quite the best response, as you can imagine. 

Awhile ago, I determined that it might be good to just respond with the good things Evan had been up to.  In fact, I notice that more people take an interest in him now that I do this.  So, in an effort to keep those of you reading my blog up-to-date, I think I am going to start posting a progress report monthly. 

I hope you enjoy reading about the little miracles, as much as I enjoy seeing them!

July’s Miracles

  • Evan gave me a kiss!  I did not ask for one, nor was it bedtime (which is when we normally kiss).  Loved it!
  • Evan said ‘Apple’ on the Fourth of July!
  • He is still bringing us his sippy cup when he needs more to drink.
  • We prompt him to say ‘eat’ when he is hungry and he actually does it!
  • He has graduated from First Steps and will start full-time ABA therapy in September! 
  • When we ask for a hug, he comes and gives us one.
  • Evan understands the word ‘go’ in many different contexts now – pretty useful when we need to transition!
  • Evan can walk up and down 6-7 steps with a hand on the wall or railing.  When we hold his hand, he even alterntes feet!
  • Tessa spilled Evan’s bowl of crackers last week.  Evan picked them up himself without ANY prompting – even putting them in his bowl!
  • One of the skills we are emphasizing lately is getting dressed.  Evan can now pull up his pants all by himself (with prompting).  He also slips his shoes on (with visual prompting) and tugs on his shirt to get it over his head (no prompting). 

Changes Made in July

  • We have begun praying over Evan nightly, before bed.  We pray that God will super-charge his development.  And, most importantly, we tell Autism to go away in the name of Jesus!  He seems to really like this whole process, because he smiles and giggles at us (making lots of eye contact).  He is probably thinking, “What are you crazy people doing now?” 
  • We actually stopped the GFCFSF diet!  Our doctor wanted to see if Evan had changes in his behavior when he was taken off of the diet.  Things are looking good so far – its been about a week and a half!  And our budget has certainly benefited!

To wrap it up…

I read a book by Mother Teresa in high school.  In it, she wrote…

“We can do no great things. Only small things with great love.”

This quote speaks strongly to my ‘mother’s heart’.  Sometimes we can look over the small things in our day, like filling a sippy cup or playing with blocks.  Yet, these are the most important moments.  Evan learns in completely different ways than other children.  Words, actions – they mean nothing to him most of the time.  But the moment I take my hand, put it on his and help him do something – it becomes real.  Its ‘mothering’ to the extreme. 

When I first started this journey with Evan, I thought one thing would make the difference and help him turn the corner.  Now, I know it is the little things.  It is the daily prayers.  The hand-over-hand, the extra mile when I am tired – that he needs most. 

Pray for me.  Its hard to fill every action with love.

And I will pray for you – that every action is filled with love.

God has a purpose for giving Evan autism, Ashley. 

You just don’t know what it is yet. 

For the record, I hate those words.  Just don’t even try them on me.  I don’t believe for one minute that God gave Evan autism.  I don’t even believe that God made autism.  Why would a God who is described as love, kindness, grace, etc….give someone autism or even create autism? 

No one has given me a good answer for that question.  The closest was that the good of this situation would far outweigh the bad.  Even that seems unsatisfactory.  Certainly God – omnipotenet and omnicient and omnibenevolent – could come up with a plan that does not include autism.

In fact, I would like to postulate that He did come up with a plan that did not include Autism. 

It went something like a man and a woman in a garden named Eden…

And ends with a man on a cross and an empty tomb. 

He was pierced for our transgressions, He was crushed for our sins.

The punishment that brought us peace was upon Him.

And by His stripes we are healed and made whole.

Isaiah 53:5

With a child who has autism, a parent rarely hears the words ‘healed and whole’.  They don’t come in the autism FAQ  or Q&A sections.  In fact, the mantra for most goes something like this.

No cause. No cure.

Rehabilitated at best.

Therapies are expensive and unproven.  Doctors are uncertain.  People respond to the ‘A’ word with confusion and glances askance.  And I hear them describe my child as disabled, when his laugh tells me otherwise. 

I lift up my eyes to the mountains –

Where does my help come from?

My help comes from the Lord, the maker of heaven and earth.

Psalm 121:1-2

God can heal autism.  God will heal autism. 

And we will be part of that plan. 

Because we believe…

Jesus replied,

“If you have faith as small as a seed, you can say to that mountain:

‘Move from here to there’ and it will move.

Nothing will be impossible for you.

Matthew 17:20

MOVE MOUNTAIN!

Terrifically excited to announce that Jesse was offered a job Friday evening!  To the man who has persevered through so much – You Deserve This!  Congratulations!!!

Along with this wonderful announcement, there are several real implications for our kiddos.  The first is that Evan will be able to have ABA therapy!  The second is that the girls will be going to daycare 2-3 days a week.  Big changes are coming in our house!

So what is ABA therapy?  Well, a good friend of mine from college is actually an ABA therapist.  She also has a blog.  To read one of the best descriptions about ABA therapy that I have found – go here.

One of the wonderful things about living in Indianapolis is that there are a multitude of ABA options available.  Here are a few that we are considering:

 Lots of excellent opportunites!  I am blessed to have so many choices.  Please pray for us as we make this decision!  And you have any thoughts or recommendations, I’d love to hear them!

This week my mom fell and broke her humerus – near the top, just before the ball joint of the shoulder.  She has been in the hospital and had surgery and hopefully comes home today.  YaY! 

Unfortunately, I just came off a stretch of working 6 days in a row!  I think I have seen my kids for all of an hour each day.  My house is turning to chaos and the laundry is stacking up. 

Two nights ago, I was driving home from the hospital and thinking about the next day’s tasks.  In the midst of wondering when I would see my children and how my husband was surviving all of this, I turned on the radio (K-LOVE by the way).  Of course, they were doing this wonderful segment on the many roles of mothers and how to balance those roles!  Hmmm….God must be listening to the rambling in my head and decided I needed some encouragement!  LOVE it when He does that!

Needless to say, I have not learned any revelatory insights about how to balance my roles of mother, mother of a child with special needs, wife, bread-winner, homemaker, daughter, etc…

All I can say is that encouragement is the most important thing.  Some days you have to decide between one role or another – that’s just how it is.  There is always something that you can do to make a certain relationship or task better.  Perfection is impossible.  If I focus on it, then I become depressed.  Which brings me to encouragement…

Sometimes its unexpected – like Evan gave me a kiss yeseterday!  Sometimes its purposeful – like when my husband says I am the most wonderful wife!  Sometimes its divinely inspired – like on my way home in the car listening to the radio!  And other times you just have to find it yourself! 

Finding it yourself. 

I’m a big believer in the fact that God gives us all of the tools we need.  If we rely on Him and ask Him to show us encouragement, then He will do that.  You never know where or when it will come, but its there. 

Even when you think its not!

This is what I found today…

So what is encouraging you today?