The Ups and Downs

February 23, 2011

Yesterday, I was so offended.  I was focusing on what God was not doing for me.  Its just plain silly to do this.  I have never once experienced joy and encouragement in the presence of the Lord when I complained.  It just doesn’t happen when you are bemoaning the tide of things in your life.

In Matthew 11, John the Baptist is in prison and he sends some of his disciples to ‘make sure’ Jesus was the One.  John spent his whole life preparing the way for Jesus.  So much so that when he saw Jesus on the banks of the river, he knew immediately that He was the One.  He didn’t need a miracle or anything special to prove it.  He just knew.  Sure enough, when he baptized Jesus, the heavens opened up and God said, “This is my son.”  Flash forward to John in prison.  He’s feeling unsure of things.  After all, didn’t Jesus come to release us from our chains?  When John’s disciples arrive and ask Jesus if He is really the One, Jesus does signs and wonders.  Jesus turns John’s eyes from what He is not doing (breaking John out of prison) to what He is doing (miracles, signs, wonders, etc).  I imagine that John’s time in prison was much easier when He thought about Jesus’ miracles than when He thought of all the complaints he had.

When I find myself in a spirit of despair, as I did yesterday (just read the nasty post – Guilt 101) I need to turn my eyes from what God is not doing – allowing me to be at home with my children, etc…to what He is doing. 

What is He doing for you today?  Focus on that.

Today, I spent three hours on the phone trying to accomplish a mammoth list of urgent “Evan-related” tasks.  Of the five things on my to-do list, I accomplished one.  Needless to say, the clock read 4:30 pm and the minions were informing me that naptime had ended.  My growing list was put on hold until next Tuesday afternoon. 

Tuesday afternoon. 

I have a planner with daily tasks.  Most days are full of scribbles about appointments, class assignments and urgent household tasks such as: Create edible gluten/milk/soy free meals from the top of my head.  Tuesdays are different.  They are blank except for the words, “Evan Day – see notebook”.  Which brings me to the growing stacks of books, bills, informative pamphlets, etc…all of which MUST be taken care of.  I am thinking of posting, “Quit your day job” above this shelf.  It would be the only chance for getting all of this stuff done. 

Welcome to Guilt 101.  I will be your professor today. 

The first year of motherhood, I spent most of my time being  jealous of other mothers who worried about how to iron men’s dress shirts and balance the checkbook since they weren’t working.  Of course, I was only chastised for not understanding the difficulty of ‘being with my children all day’.  Not to mention the scandalous looks I received when I forgot wipes in the daiper bag or my children wore the same shirt two days in row.  I wanted to wear a sign that read, “Hello, I worked a 14 hour shift last night.  No, I am not awake enought to pack a daiper bag.  And no, I have not done the laundry.”  Perhaps this all would have been less stressful had I not been worried about my checkbook too and unable to afford the weekly housekeeper. 

The second year of motherhood showed Evan’s arrival.  I got over being jealous and realized that my kids possessed a sense of independence unparralled by their frequently mothered peers.  However, this quickly progressed to the unquenchable fear that my children were not getting what they needed from me.  Now, I was just plain guilty.  After all, the days I was at home, I was just trying to get by.  No doubt, when I was at work, they were watching tv so that daddy could do schoolwork.  Sigh…what would become of them.  At this point, I contemplated daycare only to discover that the end result was further financial ruin, which I had not thought possible.  After all, we had already lost our house.  How much worse could it get?  Oh yes, we need a place to live and food to eat.  “Sorry, kids.  Today, I had to decide that you needed food more than meaninful interaction.  Maybe tomorrow…”  Yes, I was guilty…and it was all my fault. 

The third year of mothering showed that I had reason to feel guilty.  My son wasn’t talking or making eye contact or doing anything that he should have been doing.  Not to mention, another child in the picture.  God, help us.  Somebody should tell the Duggars that a house can reach full.  Ours definitely had.

Year four.  Evan is diagnosed with autism and I know things could have been different.  If I had been more involved.  If we had more money.  If…If…

Perhaps if I had quit my day job four years ago…Perhaps Evan wouldn’t have autism.  Now, I need to quit my day job just to take care of him.

Yet today, the answer is no different.  No different than when I returned to work after Arianna’s birth.  No different than when we needed some daycare to give the kids positive interaction.  No different than any other day. 

I can’t quit my day job.  We need food to eat and a roof over our heads…

Oh yes, it is my fault.  No logic could explain it away. 

Go ahead.  Inform me of the difficulty of ‘being with your children all day” and ironing men’s dress shirts. 

I’ll trade you anyday.

Evan had his last therapy session with his occupational therapist today (she’s moving).  It went really well!  We played with shaving cream and he loved the sensory aspect of it and made good eye contact.  We are going to miss her so much!  He should start with a new therapist here in a couple of weeks.  Just praying that the new therapist is as good as the last one.  Its times like these when I realize how much God needs to be in every aspect of Evan’s life.  This is hoping and trusting God for every aspect of Evan’s (and ours) future…

Speaking of trust…

I was watching the show,  Smallville (of all things), last night.  Near the end of the episode one of the characters made this remark, “Its not really trust if you ask the other person to explain themselves.”  I was immediately struck by how often I demand an explanation from God in my prayers!  “God, what is this about?  God, why did this happen?  God, just tell me what your plan is!”  I don’t think there is anything wrong with asking these questions, but it does bring into question whether my trust is really established.  After all, since He is completely good AND completely in control, then why do I even need to know?  Chances are that He hasn’t told me the answers for a reason…

I have been listening to a song, Hope’s Anthem, by Bethel Live (& William Matthews).  It has been so encouraging!  Here are some of the lyrics:

He’s awakening the hope in me by calling forth my destiny.  He’s breathing life into my soul. I will thirst for Him and Him alone. He has come like the rain – like showers on the barren plain.  So my heart and tongue confess, Jesus Christ – the Hope of Man.  My hope is in You, God. I am steadfast.  I will not be moved.  My anchor, never shaken – All my hope is in You.

Now, go download it off of iTunes!

GFCFSF: Getting Started

February 15, 2011

Once you have decided to go with the GFCFSF diet, then your next questions are likely, “How do I do this?” and “When should I do this?”  There are tons of variables and no one can really tell you what will work best for your family.  However, I’d like to share, from one mom to another, what led me to my decisions regarding the diet.  Additionally, I will share things that I thought could have gone better, what worked (and what didn’t) and how my kids responded.

When should I begin?

The number one variable to consider here is economics, in my opinion.  I knew I would be replacing most everything in our cupboards and refrigerator.  However, I was not prepared for the cost of simple things like GFCFSF ranch (which is almost non-existant), ketchup and mustard.  Additionally, I was prepared that we would be spending more, but I had not realized that start-up would rock the boat so much.  Previously, I had been spending about $80/week on groceries.  My first grocery bill on GFCFSF was $150 and I think it lasted all of 3-4 days.  I know with time that I will make things more affordable for my family by making many things from scratch, but I can only try so many recipes in one week.  Additionally, purchasing new and replacement ingredients for our pantry (rice flour, xantham gum, baking soda in the aluminum free container) every week drives the bill up. 

The second thing I considered was whether I should see a DAN! practitioner first.  DAN! is the Autism Research Institute’s response to biomedical intervention to cure autism.   It stands for, my favorite phrase, defeat autism now.  I believe this year they are changing the name.  You can view more information here.  Biomedical intervention consists of things such as the GFCFSF diet, vaccination considerations, chelation, etc.  Many of these therapies and treatments are not widely accepted in the medical community, because there is a lack of proven research.  By proven, we mean controlled studies of thousands of people.  However, there are doctors out there who recognize the value of biomedical intervention and you probably want to get involved with one.  One of the things they can do is test your child for gluten, casein and tons of other allergies/sensitivities.  This test may mean that you will be eliminating more than just gluten, casein and soy.  If you are looking to do all of this at once or want more guidence in implementing the diet, then waiting to see a DAN! practitioner is best.   I decided initially to go this route.  However, when I called for the appointment there were no openings for four months.  When I heard this, I decided just to dive in.  I wanted to see change before then.

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.