The Happiest Boy

May 29, 2011

This week my Monday spiraled out of control.  I took Evan to the first day of his evaluations for the school system.  These are done while a group of 5-6 kids participates in two days of pre-school classes.  The speech and occupational therapist, as well as a school psychologist evaluate the children through the morning. 

Eager mother that I am, I arrived 20 minutes early.  As the other children arrived, Evan came and sat on my lap.  He made his usual happy and excited noises.  Of course, the other children (who are also developmentally delayed) were all talking.  I saw the parents looking askance at us and I knew what they were thinking. 

Perhaps my son (or daughter) isn’t as behind as I thought! 

And, of course, I was thinking:

Wow, he’s so much further behind than I thought!

Obviously, discouragement was knocking on my door. 

When I arrived home that evening, I got the mail and opened a large, letter envelope from the organization First Steps.  First Steps completed Evan’s yearly evaluation last week and I knew these were the results.  There are five developmental areas listed in their evaluation: gross motor skills, fine motor skills, social, communication/language and cognitive.  The rating scale spans from -20 (severly delayed) to zero (developing normally).   When I saw the scale, I groaned internally. 

Can we not evaluate this like movies – 5 stars for developing normally and 1 star for delayed!  At least he would be getting stars instead of NEGATIVE numbers!! 

Sighing, I proceeded to the next page which detailed Evan’s scores.

-20 Cognitive, -20 Social, -15 Language, -9 Fine Motor Skills and developing normally in gross motor skills.

At least he can be a professional athelete.

I was fairly close to despair.  Wishing and longing, yet again, for ABA therapy – the most effective ‘treatment’ for autism. 

I went to bed and dreamed that I was a secret agent chasing down ABA therapists (have to love that subconscious mind, right?).

The next morning, I woke up and light was streaming through the blinds and making my covers warm.  I smiled a little bit and thought about God bringing joy in the morning.  As I was lying there, I felt God speaking to me.  He was telling me to forget about my circumstances for today.  So I determined that I wouldn’t pray, think or talk about my circumstances for the rest of the day. 

During my bath, I read a book about strengthening myself in God.  It detailed the effects of negative thinking.  In life, there is always a struggle.  If we focus on these struggles, then they consume us.  If we focus on God, then He consumes us.  Hmmm….

Consumed by God vs. Consumed by Struggle. 

I choose God. 

On my way to Evan’s evaluation, I worshiped, instead of thinking about all of our struggles.  It was an awesome time and I had a feeling that God was ‘consuming’ me.

We arrived about five minutes early and most of the other kids were there as well.  Another little boy in the evaluations started jumping up and down. 

Mom, Mom!  He’s cool!!!

I looked around, thinking he was talking about someone else only to discover that Evan was the only other boy there.  I smiled.  The boy ran over and said hi to Evan.  Evan smiled.  Then, the little boy looked up at me and I’m sure I’ll never forget his words.

He’s my friend.

As I walked back out to the car, I was misty-eyed.  I knew God was consuming me now.  I was filled with joy for the first time in so long.

The sun was shining.

I went grocery shopping (and found some amazing deals on grass-fed beef!).  When I returned to pick Evan up, the school psychologist was holding his hand.  The other children were running to their parents and Evan followed them, even though he hadn’t seen me.  This was monumental since he rarely imitates other children.  I knelt down and he saw me.  Made eye contact.  And gave me one of the best hugs. 

As I stood up, the school pyschologist walked over.  I asked her how things had gone.  She said he did well and told me about the conference for his Individualized Education Plan (IEP) in June.  I said goodbye and started to walk away, but she grabbed my arm.  I turned around to face her and she put her hand on my shoulder. 

I just want to tell you that Evan is one of the happiest boys I have seen in years. You should be commended.

To which I replied:

No, God Should Be Commended!

Today, I was glad that God reminded me of my circumstances.

I write this as my day is drawing to a close and am reminded of my favorite poem, which continually reminds me of why I love God and the music He helps me to create.  It is by Henry Wadsworth Longfellow.  It was introduced to me by one of my eighth grade teachers, Roberta Hite, who, I believe, may have read this blog a time or two (and certainly deserves a shout out for the many students she has produced with a love for writing). I wonder if she will remember this poem from one of our school books!

The Day Is Done

The day is done, and the darkness

Falls from the wings of Night,

As a feather is wafted downward

From an eagle in his flight.

I see the lights of the village

Gleam through the rain and the mist,

And a feeling of sadness comes o’er me

That my soul cannot resist:

A feeling of sadness and longing,

That is not akin to pain,

And resembles sorrow only

As the mist resembles the rain.

Come, read to me some poem,

Some simple and heartfelt lay,

That shall soothe this restless feeling,

And banish the thoughts of day.

Not from the grand old masters,

Not from the bards sublime,

Whose distant footsteps echo

Through the corridors of Time.

For, like strains of martial music,

Their mighty thoughts suggest

Life’s endless toil and endeavor;

And to-night I long for rest.

Read from some humbler poet,

Whose songs gushed from his heart,

As showers from the clouds of summer,

Or tears from the eyelids start;

Who, through long days of labor,

And nights devoid of ease,

Still heard in his soul the music

Of wonderful melodies.

Such songs have power to quiet

The restless pulse of care,

And come like the benediction

That follows after prayer.

Then read from the treasured volume

The poem of thy choice,

And lend to the rhyme of the poet

The beauty of thy voice.

And the night shall be filled with music

And the cares, that infest the day,

Shall fold their tents, like the Arabs,

And as silently steal away.

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Don’t Push – Pull.

April 17, 2011

Have you ever pushed on a door that was meant to be pulled open?  It looks fairly comical (and can be quite embarassing). 

I was struck today that, as parents,’pushing’ seems an inevitable action with our children.  Like mother birds at the nest, we must eventually push our little birds out into the free world.  I remember dropping Tessa off in the nursery for the first time.  I set her over the nursery gate and gave her little bottom a pat.  “Good luck, little one.” I thought. 

Having a child with autism is quite different though.  As a parent of an autistic child, I often find myself pushing on a door that is meant to be pulled.  Today, however, I was quite proud of myself for recognizing this and proceeding appropriately. 

On this very cold, blustery morning we went to the Carpenter Realtor’s Easter Egg Hunt.  The entire way I was debating on whether Evan should participate in the hunt.  Finally, I envisioned me sending him off at the starting line (adults were not allowed to ‘help’) and him doing an about-face with fear and tears in his eyes.  I decided he wouldn’t participate.  Of course, I then felt a mounting wall of anxiety.  Am I going to ‘hold’ him back in everything throughout life?  At what point do I push him out into the ‘great unknown’?

I was then reminded of the pushing and pulling analogy.  I began to envision myself pushing Evan in our radio flyer wagon.  We were running into all sorts of obstacles, because I couldn’t steer the thing correctly.  It occured to me again that pulling was a more appropriate parenting technique with Evan.  If I pull Evan’s wagon, then I am able to steer him where he should go.  I can move obstacles out of the way and prepare the road ahead of us. 

Next Sunday, Evan will hunt for Easter Eggs.  I am determined!  This week we will practice putting eggs in a basket and then on Sunday someone will hold his hand (likely Gramps) while he searches for Easter eggs.  So to speak, I will prepare the way for some Easter egg festivities. 

All of these pushing and pulling analogies have sent my mind going this afternoon.  Which brings me to a real life application – autism or not.  Are there ‘doors’ or ‘wagons’ I have been pushing on that were meant to be pulled?  What about you?  Is there something in your life that just doesn’t seem to budge, something you can’t make progress with?  Perhaps we need to stop pushing and begin pulling instead.  Prepare the road ahead of us with a little prayer….

I believe God changes circumstances.  I believe God, literally, gives people money.  Certainly, there are times when it seems that their employer gave them money or a loved one ‘left’ them money.  Yet, I believe that it all flows from this giant storehouse of ‘dough’ in the sky.  I know it sounds silly.  Yet, I cannot explain another way that formula showed up on my doorstep when Arianna was 6 months-old and our account was overdrawn.  Nor can I explain how we paid off $30,000 in debt in 2 years when my income was even less than that.  Certainly, someone probably put formula on our doorstep and God moved the hearts of our creditors to cancel some of our debt.  I am definitely not proud of what led us to those circumstances.  Our sins, however, do not diminish God’s work in our lives.  In fact, they illuminate the glory of His redemption. 

Right now, I would really like for God to change our circumstances.  (Wouldn’t we all?)  When I pray for these things, I envision myself shaking the legs of this really tall, super-dude.  Then, these giant gold coins start reigning down at my feet.  I know, its not really traditional and highly unlikely.  What have I done to deserve His blessing?  Just about nothing. 

Today, I got a quote from Anthem for Evan’s insurance.  It would cover his ABA therapy, which he needs 20-40 hours a week.  To put it lightly, ABA therapy is a little expensive.  Imagine paying someone with a lot of education to work with your son full-time.  Now, imagine that person makes more than you do.  How are you going to pay them?  Well, you have to buy more insurance.  Unfortunately, that insurance costs $700/month.  Yes, that’s right!  If I wasn’t a believer, then I might consider some very desperate ways of obtaining this money.  Its that important that Evan have it.  He needs this therapy so much!!!

I don’t want pity right now, but I want people to know how to pray for us.  Take a minute and see what adding a $700 bill to your monthly payments does.  Then, envision me shaking God’s legs again.  Please pray that God opens up a giant whole in the sky over our family and that all of the resources of heaven and earth (money) are at our disposal.  If that seems weird to you, then pray that Jesse get a job.  And if you know anyone who needs a FABULOUS graphic designer, then tell them about Jesse! 

I believe God created the people who designed and discovered the effectiveness of ABA therapy and I believe He wants Evan to have access to it.

For my little dude.

Jedi Evan Courtesy Peter Evans
Evan dressed as a Jedi for Halloween.

To God be the Glory. 

Great things He will do.