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.

A few days ago, I took Evan to his very first swim lesson.  Normally, sessions with new people don’t go well, but Evan cried minimally and smiled and laughed most of the time.  I tried to ease his transition by letting him watch Arianna’s swim lesson.  Of course, changing his clothes was an all out duel!  Once we sat down in front of the large window, he saw the others swimming and became pretty excited.  When I handed him off to the total stranger, he cried, but I’m pretty sure most 2 1/2 year-olds would do that!  And then Arianna and I, went back into the waiting area which was filled with mothers who were staring at us.  Yes, staring. 

I smiled meekly and took Arianna to get changed.  While drying her hair, I contimplated their stares.  I really did not think Evan’s level of upset was abnormal.  Once he was in the water, he stopped completely and was smiling and laughing.  Then, I realized that they must have known that the instructor was trained to teach special needs kids – that was why they were staring.   I have to admit, it made me feel worse.   

We sat down in the waiting area and Arianna ate a snack while we watched Evan.  The other moms were all talking to each other and introducing themselves.  I kind of felt like I should try and be social, but the episode of staring had thrown my confidence.  I sat there thinking of what my introduction should be, “No worries.  My autistic son is not contaminating the pool water.”  I laughed out loud when I thought this.  The absurdity of the thought began to put things in perspective. 

Autism is not contagious.  It is, however, extremely prevelent.  1 in 110 children are diagnosed with the condition and, even more striking, 1 in 70 boys.  Autistic people can be very different from us, but for every thing which makes them different – there is one thing that we have in common. 

Last Saturday, I went to an Autism Expo.  There were tons of places offering services – schools, therapies, organizations, etc.  There was one booth with an autistic man.  He was selling and signing a book he had written.  There were probably hundreds of people at this event, but no one was at his booth.  I knew why.  They were afraid to talk to him.  I was afraid.  I didn’t even stop.  I felt convicted about it all day.  Yet, I had forgotten about it completely until Tuesday. 

Tuesday was the day I took Evan to the pool and no one talked to me, because they knew he was ‘special’.  It is so easy as human beings to focus on all things that make us different from one another.  We have seen it through history – skin color, religion, etc.  Why can’t we see what makes us the same? 

I’m not offended by those moms at all anymore.  I realize that they didn’t talk to me for the same reason I didn’t talk to the autistic man at the expo.  They were afraid.  Afraid they might say the wrong thing.  Afraid I wouldn’t want to talk about the same things as them.  Afraid it might be awkward between us.  They couldn’t see that we were in the same building for the exact same reason – swim lessons.  Perhaps next week I will introduce myself like this:

“No worries.  If your children contaminate the pool with their normalcy, I won’t be offended.  After all, they are all here to swim, aren’t they?”

Ouch.  Maybe not.  Perhaps this vein of thought would be better…

“Hi, my name is Ashley.  That’s my son, Evan, out there.  He has autism.  And he loves the water, huge hugs, anything with wheels and running around like a bulldozer.   I’m really proud of him.  Which child is yours?”