This Dream

August 25, 2011

I have this dream. It involves Jesse and I sitting on our couch in the morning. He’s sipping coffee and we are talking about the upcoming things in our day. Then, we hear ‘the sounds’ emanating from upstairs. And soon, six sets of little feet come pitter-pattering down the stairs. We help them grab their bowls of cereal and glasses of milk.  As we all converge around the living area, Jesse prays and reads something from the Bible.

That’s it. That’s my dream. Its simple. Nothing fancy. It has been my dream since I met him – Jesse. I always wanted a lot of kids and when he said 6 sounded fun – well, we were meant for each other. We got married and started building our lives together.

We bought a huge house and got pregnant. Our little lady arrived on the scene.

Around this time, we fell in love with the youth group at our church.  We felt God calling us.  At the same time, Jesse discovered a calling to return to college and study graphic design.  He started a work from home job and went back to school. I started working full-time.  We became the youth ministers at our church and we just felt so excited about the things God was bringing into our lives.  Soon, this little dude came too.  And we were very excited.

Jesse’s work-from-home job became demanding – they didn’t even give him 2 days off for Evan’s birth.  I had a c-section and had limitations – I couldn’t carry anything heavier than the baby.  This made it hard to care for our little ones.  In the end, Jesse had to leave that job.  We moved out of our gargantuan house and into a two bedroom apartment.  Six months later, we were officially in foreclosure.  I started working night shift. I got pregnant. We stepped down from ministry.  The bill tally was $1000 more than we made each month. Peanut butter and jelly was our daily staple.  It began to feel a little less ‘exciting’. 

In my third month of pregnancy, I developed kidney stones.  In my fifth month, overwhelmed by the circumstances around me, I became depressed and suicidal.   Our apartment lease ended and my parents offered to let us live with them. I think ‘very worried’ hardly described my mom’s feelings.

We moved in and welcomed some Good News.

At Evan’s 18-month check-up, the doctor was concerned about his lack of speech.  Soon we sat in a neurologist’s office and listened to his remarks that we were likely looking at ‘autism spectrum disorder’. 

In these moments, I felt so far from the patter of six little feet and Bible readings over coffee. Some days I still feel pretty far from it.  I wonder if it is even worth considering anymore. 

At the beginning of this year, a good friend of our’s prayed for us.  He told us that God was going to restore us this year.  I remember feeling hopeful and doubtful, all at the same time. 

Saturday was Jesse and I’s sixth anniversary.  Unfortunately, with my new job, I had not been able to request it off. However, that morning I received a call saying that I could have the day of.  Lying in bed, I began to think about the last year and the gratitude just overwhelmed me. 

We paid off over $30,000 in debt, when I only made $21,000 the entire year. We moved out on our own. Jesse got a job – a great one. I got a job – a great one, with great hours.  I’m starting to feel restored.  This morning, I had this song in my head:

It’s been a long, hard road these last few years. Yet, it seems we are finally rounding the bend.  In the end, all of the struggle, the pain – it led us straight to Him. We could not have survived it all without Jesus. It sounds hokey and cliche, but He truly has been our Savior. 

Which brings me to Evan…

I just hope this road leads him straight to You, Jesus.

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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…

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….

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?”