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.

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.

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.

We Have Enough

May 22, 2011

As I listened to my pastor this morning, I was encouraged that God never leaves us without the tools we need.  He always gives us ‘enough’ (and sometimes an abundance) of what we need to get through

This week, during one of his therapy session, Evan said ‘my turn’.  The therapist looked at me completely astounded and said, “He can talk!”  Something in my stomach turned over and I felt my ‘mother bear’ coming out. 

Of course, my son can talk.  He has been saying a mish-mash of about 10 words for almost a year.  He just doesn’t like to do it and doesn’t see the necessity most days.  And when he does want to talk, it is rather garbled, because he hasn’t had much practice.  BUT given the right kind of motivation, I’m pretty sure he could verbally detail quantum mechanics for us. 

We just haven’t found that motivator yet.

I find myself longing and dreaming of Evan having an ABA therapist who would use motivators to help him learn.  All the while, I hear my inner voice saying, ‘God has given you what you need.’ 

On my way to work, I find myself reciting the mantra, “We have enough.  God is taking care of us.” Over and over. I feel my heart wanting to follow and my mind pulling me in the other direction.  The two at war with each other, I pull into my parking spot and say outloud, “God, we need a miracle.”

Yes, I am undoubtedly overdramatic.  Yet, I cannot deny my desire for God to provide some ABA therapy.  It would be a miracle, truly. 

Until then though…

“We have enough.  God is taking care of us. We have enough.  God is taking care of us. We have enough.  God is…”

Does this constitute ‘content in all circumstances’?  I highly doubt it.  But I’m trying and that’s got to count for something.

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….