Autism: Day 1

February 11, 2011

On September 9th, 2010,  I first heard the words autistic spectrum disorder used to describe my son, Evan.  As we left the doctors office I felt a flood of emotions and thoughts.  “Is this my fault?  Could I have done something to prevent it? How will this affect my family – my husband, my daughters?  Will we ever have more kids?  Will Evan be able to graduate, go to college, live a normal life?  Will he ever enjoy the things that I have enjoyed so much – marriage, children…a relationship with God?”  These were dramatic thoughts and I drove around for several hours praying, crying and thinking things through.  When I finally returned home, I just sat watching the kids play in a very undignified stupor.  I got out old photos of Evan and reminded myself of how much love he had brought (and still does) to our family.  By the time my husband returned home late that evening I was a wreck.  After crying a little bit, he held me while I told him about the day….

Evan had been referred to a pediatric neurologist, because his developmental therapist was concerned about episodes of starring.  My mom, with great fore-thought, insisted on coming.  I was worried on my way to the appointment about many things.  The first was that he was having seizures (absent mal).  The second was that the doctor would diagnose him with something (autism) without getting to know him.  The third thing, which I was most afraid of, was that he would diagnose something and tell us there was no hope.  After all, there is no ‘cure’ for autism, nor do they know what causes it. 

The visit went well (looking back on it).  Evan was well behaved, active and babbling some.  The doctor asked a lot of questions and was very personable.  I felt he was trying to get to know us and not trying to diagnose a problem.  He examined Evan, which was when I started to get nervous.  He did the classic, pound-on-the-knee reflex test.  Evan’s leg shot up in the air, but he didn’t respond normally.  He just starred off into space, not even recognizing the doctor’s presence.  I knew this wasn’t normal.  It was the sort of thing we were worried about.  The doctor asked how Evan did playing with others and how he responded to us.  I shared that I was concerned, because he didn’t respond to inflections in our voice and often did not respond until we had said his name several times.  The only time that he really seemed to ‘play’ with others was when there was physical activity involved. 

The doctor felt there were some things to rule out such as seizures and poor hearing.  Then, he shared, “But you should prepare yourself that if these tests come back fine, we are likely looking at autism spectrum disorder.”  He went onto to say that he wanted to see Evan every three months for the next year to ‘track with him’ and see how he progresses.  I was glad he hadn’t diagnosed him right off the bat, but frustrated too.  In retrospect, I wished that I had asked, “What do I do now? What can I do that will help?”  I should have shared that I was willing to try anything and that I did not want to wait an entire year for this ‘verdict’.  Of course, I did not want him to diagnose him too early or quickly, but I did want somebody to tell me what I should do. 

As mentioned before, Evan was in developmental therapy.  He also saw a speech and occupational therapist each week.  I knew that these were the best things I could do for him.  Keeping him involved with these therapies and implementing changes at home – that was my task.  Yet, as the months flew by we saw improvement…but only a little. 

Evan went from 5-6 words to 20-25 words!  He began to understand commands and follow our directions.  He also started to recognize when we (and others) were upset.  These were incredible improvements and should not be diminished.  The guidance, support and encouragement our therapists provided (and still do) made a huge difference.  Yet, after four months, it was clear to me that this  progress was not enough.  It has taken me four months, a series of hearing and neurological tests, internal arguments, many tears and even more prayers to come to terms with things.  

Today, our pediatric neurologist diagnosed him with autism spectrum disorder.  Amazingly, I did not cry or go into denial (although I did eat one too many cookies).  God placed me here as his mother for a reason and I will not ignore what I think can make his life healthier, more enjoyable and full of color.  I know that God made him this way for a reason and that one day he (Evan) will share his ‘story’ and point others to the One who created him and the whole earth.  Many people look at him and say, “He’s normal.  People are just hyper-sensitive to these things.”  My only response to that is this:

What is ‘normal’, when God fashioned each one of us individually?  I don’t want him to be normal.  I want him to love God and fulfill the destiny created for him.

People have prayed with me for Evan to be healed.  We see improvement in him each day.  I consider those prayers answered.   I have peace in my heart and an understanding that this is God’s plan.  I will pray for his improvement, even healing, but I will pray twice as hard that Evan loves God and follow him.  Afterall, this is what is important in life – not whether he is ‘normal’, not that it is ‘easy’ to raise him.  I recognize that things can be difficult and hard and still part of God’s plan.  More than anything, I know that God carries this burden for me and makes it light.  And some day Evan will stand strong and say, “I have (or had) autism and God called me…and I answered.”

This is our journey to life – autism free.  Day 1 complete.

Advertisements

Evan’s Escapades

January 3, 2011

Today marked the 24 hour time mark for the GFCFSF diet.  Evan seems to like most of the food, except the rice milk.  I am thinking of taking the unopened cartons back to the store and purchasing some Coconut and Hemp milk.  There are some good recommendations for those in the GFCF Kids yahoo group.  This morning I noted increased eye contact and jargon.  He also had more purposeful play.  For instance, he strung three trains together and moved them along the rails.  He seemed to be really enjoying himself!  Then, when the occupational therapist arrived, he didn’t cry and seemed ‘ready’ for therapy.  Usually, there is a large transition between play and therapy  that consists of crying and hugging until Evan is soothed.  It has been very rocky!  This is, word-for-word, how the therapist described today’s session:

“Evan did not cry today!  Was able to begin therapy session without tears.  Seen in family living area.  Evan appropriately answered ‘no’ to therapists questions 2 times.  He said ‘yes’ to rolling on ball, being ‘squished’ by ball 2x near end of session.  He gave eye contact more frequently on lap/near therapist…”

I hope this was not some fluke and the GFCFSF diet is clearing the fog around Evan so he can enjoy life!