For the Love of PECS

August 1, 2011

Over a year ago, our speech therapist arrived with a picture board of her different floortime activities.  For months she persisted in helping Evan connect the picture board with the actual activities.  Many days he cried when she would use hand-over-hand assistance to help him reach for the pictures.  Then, in September of last year, he started choosing between two pictures, then three.  Every now and then, he would Evan grab the picture and hand it to her.  To be honest, I wondered what on earth she was doing.  I thought she was supposed to teach him to talk!

That was before I knew or understood that Evan would be diagnosed with Autism.  I could tell by the way she systematically did things and her professionalism that I should trust her.   And so I did trust her, which was one of my better decisions as a mom.

By Christmas of that year, Evan would come and grab our hands.  He would pull us to the kitchen if he wanted to eat. He would hand us his sippy cup.  He no longer cried for the things he wanted – he communicated.  He did not ‘talk’, but he communicated.

Instinctively, infants cry when they need something.  As they grow older, they instinctively begin to imitate the sounds that adults make. One day, when mommy is being goofy and saying ‘mommy’ over and over again.  The baby says it too.  Of course, mommy gushes at this point and rewards the baby with a hug, smile and other such delights.  Soon the baby knows that if she says ‘mommy’, then her mommy will come.  And so the process of communication has been cemented for the baby, who now understands the value of those noises everyone is making.

My little boy, and many children with autism, did not progress this way.  I remember thinking when he was six months old that he didn’t ‘coo’ or ‘ga-ga’ at all.  However, I shrugged it off.  At one year, he made some noises and said ‘uh-oh’.  I thought speech was coming.  At eighteen months, he had learned the word ‘no’.  With no changes at 20 months, we were advised to begin speech therapy.  Some people looked at us strangely.  I’m sure they thought he would grow out of it.  After all, in the 70’s and 80’s it was not abnormal for a child to begin talking around age three.  What my friends and I did not understand is that the problem was not speech delay.  It was communication delay.  Thankfully, our speech therapist understood this and worked endlessly to establish the pattern of communication for Evan.

The technique she used is called the Picture Exchange Communication System or PECS.  It was developed in the 80’s to help children with autism and other developmental disorders learn to communicate. It was designed to be accessible to everyone.  In fact, it is the least expensive intervention system I have come across!!!  (Please applaud the person who came up with that idea).

The official PECS website describes it this way:

“PECS begins by teaching an individual to give a picture of a desired item to a ‘communicative partner’, who immediately honors the exchange as a request. The system goes on to teach discrimination of pictures and how to put them together in sentences.”

PECS is a very effective tool for therapists and others who are involved in one-on-one interactions.  As a parent of three children, I have found that its implementation can be difficult.  I remember posting frequently used pictures, such as snacks and sippy cups, on our refrigerator for Evan to use. Twenty minutes later I came around the corner with some laundry and the pictures were scattered across our living room. The dog was eating one picture, Arianna was coloring another and Tessa was trying to put them in her toy teapot. Evan, the one who should be using them, was at the kitchen table rolling trains back in forth at his eye level. Sighing, I collected the package and resigned myself to finding some other method of use.

My next route was fairly effective – one picture at a time. The therapist took a picture of our van so that every time we were getting ready to go, we could show Evan with the picture. This worked really well.  My only advice is make thirty-thousand copies of that picture, because you will leave it in the van or in your purse at least that many times!

My most recent effort has been a picture schedule and chore board.  This is what it will look like once it is fully implemented. 

However, it is still one picture at a time – starting with breakfast for a couple weeks, then we will add in getting dressed.  Perhaps in a year we will have the whole thing down!  I’ll keep you posted, for sure!

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.