This Month’s Miracles:

  • Evan initiated a ‘high-five’ with me and actually said ‘five’. Amazing!
  • Evan ran up to Tessa and wrapped his arms around her – he said ‘hug’ while doing so!
  • Normally, we leave Mammie and Gramps house through the garage door.  However, the other day we left through the front door. Evan recognized that we were leaving and said ‘bye’ numerous times.
  • Evan has been saying ‘uh-na’ and ‘tessssssssa’….his sisters names!
  • While running through the apartment (his primary self-stimulatory behavior), he yelled ‘run’!  He was so excited…and so was I!
  • Evan reached up to give Jesse a hug at bedtime. Then wrapped his arms around his neck and squeezed.  Evan requests a lot of hugs and receives them, but ‘giving’ hugs is a little more rare. So special…
  • Evan moved up from the nursery to the preschool room at church! The big boy definitely enjoyed the new toys and was a pleasant addition to the classroom.
  • Evan started school. By the second day, he walked right on the bus with no problems. He seems to be enjoying his days and napping a little better in the afternoons. I think they may be wearing him out a little!

Overall, there have been quite a few words at random this month. Here are some goals that I am going to work for this month:

  • Use a PECS card for the school bus to show Evan where we are going and help him to learn that word. Figure out the sign language for it too and start using it!
  • Evan tends to wander during meal and snack times. I really want to nip this particular behavior.  At dinner, we will be continually sitting him back in his seat and prompting him to say or sing ‘all done’ when finished.
  • Gather and read resources regarding potty training children with autism. Evan has been tugging at his diaper, because it is uncomfortable. I feel this may be a sign to start moving in that direction.
  • I have been working on my ‘alone time’.  Each morning for several weeks, I have been able to set time aside to read my Bible and a small devotional. I really want to add exercise into this routine, because I want to be healthier. I know it seems like this goal doesn’t relate to Evan, but I am learning that I need some ‘me-time’.  Especially, since most of my time is ‘kid time’ or ‘work time’ or a myriad of other responsabilities!

If you think of us and are praying, then I’ve got a request. I’ve been feeling that God wants us to pray that our kids, and especially Evan, that they are fertile soil. The parable of the sower is typically meant to signify the way that different people respond to the gospel – we can be rocky soil, weedy soil or fertile soil.  I just really feel called to pray that my kids will be fertile soil for the right things – that the things we are trying to teach them and working towards will flourish and grow and take root in their hearts!

 

 

 

 

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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!

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…

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!

He sees me…

June 30, 2011

As I sat on the train with Arianna, she smiled and commented on the things we were passing.  Every now and then she would say something to Thomas – the train we were riding.  It was completely adorable.  In reality, we were about 10 passenger cars back from Thomas the Train.  Even if he was alive and capable of listening, he would not be able to hear my daughter telling him about the farms and cows we were passing.  Yet, she persisted and in delight babbled for the full 20 minutes of our ride. 

Following the train ride, we walked to down to Thomas for some pictures.  Thomas was, of course, being swarmed by a throng of three and four-year-olds.  Some were screaming ‘THOMAS’ at the top of their lungs.  Others were jumping up and down just to get a glimpse of the large, blue train with a smiling face.  Parents were trying to chorale their children into the line being formed for overpriced ‘Pictures of Thomas’.  A group of boys was eagerly pushing their way to the front so they could touch him. 

I looked at my precious daughter who calmly held my hand and looked up at Thomas with wonder in her face. 

Do you want to see him closer or go up and touch him, honey?

I asked her the question twice, the second time around she responded with:

No, He sees me.

In that moment, with pulsing enthusiasm all around us, I felt a stillness come over the two of us.  As she ‘basked’ in the presence of Thomas, I was struck by her ability to tune the rest of the world out and focus on him.  I was also moved – by the Holy Spirit.

I looked at my child, staring in awe, and realized the value God found in this moment.  Certainly, she was not worshipping God at that moment, but there was a glimpse of her potential, her destiny.  While others were frantic to get a glimpse of him, to touch him, to memoralize the moment with an overpriced picture – my daughter was simply content to be in his presence. 

And then her words hit me with an even greater impact. 

He sees me.

I smiled and tears filled my eyes as I felt the presence of God rush over me. 

He sees me.

We don’t have to be elaborate to get His attention.  We don’t have to wait in line.

He sees us.

Certainly, we all have different ways of relating to Him.  There is nothing wrong with those trying to touch Him in the crowd or those waving their arms at Him.  As long as they know that He sees them. Our ways of relating to Him are unique as those found in that vibrating crowd.  And He sees each of us. 

Which brings me to my little guy, whom the world views as odd.  My little guy who has trouble relating to others.  My greatest worry through all of this has been how his relationship with God will unfold – whether it will unfold.  In that moment with my daughter and Thomas the train, I knew something without a doubt.

God sees him.

The stillness and peace, the wonder I was feeling at that moment is all possible for Evan.  And guess what?

He sees you too.