Evan Turns Three!

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.

Autism: Day 1

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.