Ethan's Story

Our story started 5 years ago.  On August 27, 2002, Ethan James was born full term, with no complications.  I remember the day as if it were yesterday.  We were so looking forward to his arrival.  We had already been blessed with a wonderful little girl, Abigail, not quite two years before.  Friends and family told us that we had the million dollar family:  a girl and a boy.   My husband, Ben and I had talked and dreamed of having three or four children.  Our hopes and dreams soon took a different path.  A path I never anticipated traveling.

After Ethan was born, he had severe colic.  He cried 24/7.  He threw up every time I nursed him.  In the beginning we joked about how we should wear raincoats while holding Ethan. He wanted to nurse every 2 hours all day long.  For 16 months I had to hold him upright just so I could get a half way decent night sleep.  We would wrap him tight in his blanket not understanding at that time about the benefits of deep pressure.  We took Ethan to the pediatrician, and they ruled out Pyloric Stenosis by doing an ultrasound.  They diagnosed him with acid reflux and was prescribed Zantac and Reglan.  Neither of which worked.  From birth he suffered from constipation. He would go for days without a bowel movement.  The longest was 13 days.  Looking back, no wonder he cried all the time!  I constantly called his pediatrician, but no help.  The pediatrician asked if I had post partum because I did have post partum after Abby was born.  No one saw what I saw in Ethan or the lack there of.  He would not look at me while nursing.  It was like he looked through me.  He did not like to go anywhere or have anyone talk to him.  If people came over, he would scream louder.  As the days turned into months, nothing seemed to get better only worse. I felt so alone.  I felt like a prisoner in my own home. It took a toll on me and on my marriage.

As the spring of 2003 started, I was faced with the day when Ben started back to work. Ben, owns his business and works April to November approximately sixty hours a week.  While I was very blessed to have him home in the winter, it caused me anxiety about him being gone and me dealing with a constantly screaming baby all by myself.  When Ben went back to work in the spring, I had a really hard time.  Our daughter, Abby, was such a good baby.  I had never met a baby or even heard of a baby who screamed like this before in my life.  As I looked at my life, I began to think maybe I was the one that was crazy.  I was mentally and physically exhausted. 

We stayed home and literally became prisoners in our own home. Days would go by and I would not even shower or brush my teeth. I would wait to go to the grocery store until Ben got home. Taking Ethan to the store was horrific. He would scream in the car on the way to the store and when we would go into the store he would scream more! After I stopped nursing him, he went from being constipated to having diarrhea. There would be days that he would go 6 to 8 times a day. I thought this had to better because at least he was going. I did not understand what was happening to his digestive tract. Ethan craved milk and we sure did go through the milk. He met all his developmental milestones on time.  He walked the week of his birthday.  I don't really remember him crawling though.  I just thought because of his acid reflux, he did not like to be on his belly.  I had all kinds of excuses for his behaviors.  I found myself finding all kinds of excuses for his crying and fussiness. No one ever told me that they had concerns about his excess fussiness. Things did not change, they only got worse.  He fussed constantly.  I would feed him constantly because food was the only thing that kept him quiet.  Of course, I was feeding him wheat and dairy not knowing what this was doing to our poor little boy's health.

I was worrying and focusing all of my attention on Ethan while Ben was starting to worry about me.  He knew he would be getting really busy with work over the summer and I was not doing well emotionally.  I think he was worried that I would do something to harm myself.   One day he wanted me to go with him to do estimates for his work.  I did not want to go, but I did not want to stay in my prison any more so all four of us piled into his truck and drove all around.  While riding along, I looked up to see a church and I wrote down the name, address, and hours.  When we got home, I looked the information up in the phone book.  I was so excited that there was an Assemblies of God Church closer to my home.  For the first time in a long time I felt hope. I could not wait until Sunday.  No matter what was going on with Ethan, I was going!  We had gone to Christian Life Church in Camp Hill with my brother-in-law and sister-in-law 45 miles away before Ethan was born and then stopped going because he cried all the time and driving was too far with little ones, especially one who cried even while traveling in the car.  I could not let him in the nursery because of his screaming so we stayed home and of course things got worse for all of us.  We just existed.  We were all exhausted! I lived in my prison and Ben would be upset with me for calling our home a prison.  He worked so hard so we could have a nice home and so I did not have to work, but none of that mattered. I had so much anger inside. So much sadness that I did not know how to handle it on my own.

My degree is in sociology and I had worked for four years in mental health prior to starting our family.  I never heard of a child quite like this and wondered what I had done to deserve this.  I looked up autism on the internet.  Ethan would not respond to us talking to him, would not look at us, had no interest in people or toys.  We could stand beside him and scream his name, but he would not respond or even glance in our direction. We could put a video tape in and from the other room he would come running when he heard the tape being put into the VCR. He would not wave to people or point at the things he wanted, he would just scream. We became really good mind readers to figure out what he wanted. It was exhausting for him and for us.

My mother-in-law helped us immensely.  If it was not for her, I do not know what we would have done.  I printed out something from the internet, an autism red flag checklist, and took it to my pediatrician.  I came out in tears.  He made me feel like I was a paranoid mother reading too much into the information I got off of the internet. I was devastated because he did not listen to me.  Where was I to go from here? Because of my background I knew of Early Intervention Services, so I contacted them myself.  At fourteen months they came over and evaluated him.  He had a severe language delay--he didn't have any language or babbling!  We started working with a Developmental Therapist, Occupational Therapist and Speech Therapist a few hours a week.

Over and over again, I asked them if they thought he had autism.  They said they were not qualified to make that kind of diagnosis. Finally, when Ethan was 23 months old, we had an appointment to see a pediatric psychologist.  Ethan was diagnosed with autism on July 13, 2004.  I was both devastated and relieved to finally get the diagnosis I so desperately needed answers to, but it was bitter sweet.  I almost wanted to call his pediatrician and say "I told you so!"  but I was mourning the loss of my dreams for a typical life for our son.  I wanted to know what his life was going to be like--would he live with us forever?  Would he drive?  Would he go to a regular school?  Could he have children?  Could he go to the prom?  Crazy things were flying through my mind at warp speed.  My husband who is cool, calm and collected, seemed to be alright.  He dropped Abby, Ethan, and I off at home and went to work.  I was alone!  I was all alone! After I put Abby and Ethan down for a nap, I cried for hours.  I wondered how Ben could just go off to work and not have to cry or be mad. I pulled myself together and called the pastor from our church. I will forever be grateful to Pastor Joe and his wonderful wife for talking with me and helping me through one of the most difficult days of my life. They helped me to understand that Ben was hurting too, but that as the head of the household he was wondering what this meant financially for our family. That this was how Ben could fix our family. We talked for a long time and I will always remember their prayer for Ethan and our family.

I lived with the on-again off-again anger and sadness for a while.  I do not really remember much, but my drive to heal Ethan at whatever cost.  Throwing myself into books and the internet trying to find something/someone to help us, became my quest.   I pushed everyone away including Ben. I felt exhausted and nothing left to give to him. With the help of some really great parents who also had children with autism, we started Ethan on the gluten and casein free diet in August 2004.  He did wonderful.  No more diarrhea.  His glazed over look disappeared.  He was not as fussy.  We went to an autism outreach clinic in Maryland in September 2004.  They did hair, blood, stool and urine testing on him. They prescribed him supplements and we started him on those supplements in October 2004.  He was doing so much better, but there was still so much more work to be done. I felt like the clock was ticking and I could not run out of time! I had to save Ethan! It was like our boat had capsized and Ethan was floating further and further away as I kept trying to throw a life preserver to him that he was unable to catch!

After implementing the new diet and supplements, I looked into wraparound services.  After an evaluation, we were granted 20 hours of Therapeutic Staff Support and 3 hours of Behavioral Support Consultant a week.  Our first TSS, LeAnne Reese, has now become his BSC and (also a partner in the Ethan Center), and she has been instrumental in helping Ethan become what he is today! 2004 was such a crazy and exciting year! Ethan went through so much change in such a small amount of time!

Ethan responded well to all the therapies that we implemented!  He started to sleep better at night.  Which meant Ben and I started to get better nights sleep! We did Epsom salt baths.  We started b-12 injections.  Ethan started preschool in Carlisle at an autism preschool in October 2005.  We also started Auditory Integration Therapy in Harrisburg in October 2005.  We would leave at 7:45 am drop Ethan off from 9-11 am pick him up, feed him lunch in the car, drop him off at the preschool at 12:15 pm, he was then dropped off at home around 3:45 pm, and he would work with his TSS until 6 pm.  I do not know how at 3 years old he did that schedule!  I was exhausted!

All I knew was that as crazy as this schedule was it helped him a lot.  Everything we were doing started to pay off! He started singing.  Ethan loved to sing.  It is the most beautiful voice I have ever heard!  One day we were waiting for our daughter to finish with her play practice at church, and Ethan started singing.  I can't even put into words what that meant!  I remember after finishing up with AIT around Christmas of 2005, only wanting Ethan to say, "I love you mommy!"  That is all I wanted for Christmas.  I told people, "please no gifts, all I want is for Ethan to say 'I love you mommy'."  In my mind it was going to happen.  He was going to talk!  I had read Awakening Ashley and after a day of AIT she said, "I want cookie."  I thought for sure he would talk!  I prayed.  People at church prayed.  We would take Ethan down to the alter for prayer.  He did not talk!

He did start identifying pictures.  He started singing more.  But, I wanted to hear, "I love you mommy."  I was very pleased with his progress, but I wanted more.  So back to my quest for healing him!   I had no time for anyone else. Every free moment was spent working with Ethan.  We turned our basement into his therapy room.  I bought anything and everything that I thought would help him.

One issue was really difficult to teach him and that was dangerous situations. We lived on a small corner lot in a development. The road was traveled a lot. Two times we had close calls were Ethan ran out on the road. In March 2006 we moved to a new house with much more land.  It was fantastic! We had more room so we decided to get a dog. In my research, I had read about service dogs working with children with autism and thought that this would be a great idea for Ethan.  I thought if nothing else he would be able to help me find him if he ever wandered off.  (I lived in fear of Ethan running off!)  I had heard so many horrible stories about children with autism wandering off.   The move was great and Ethan was doing better, at least temporarily!  

For some reason Ethan's behavior started to decline.   He was much more fussy, he did not sleep well again, his old behaviors started to resurface. Back to my computer to find out what was going on! I felt like Sherlock Holmes and a mad scientist trying to figure out what had happened to cause the decline in Ethan's behavior. When we would give Ethan his epsom salt baths, we started noticing he would scream and cry and we would struggle to get him into the tub. Prior to this he loved to take baths. Since bath time was something we could pinpoint, we decided to look into what was going on with our water and have it tested. We found out that we had bacteria in the water. Thankfully, once we cleaned up the water and a few months went by, he did much better again. 

In September 2006, he started in a regular preschool with typically developing peers and a TSS to help transition him.  The transition was so great that the TSS was only with him for a month. He no longer needed a TSS in school.   He was able then also to attend a school through our district for speech and occupational therapy two times a week in Shippensburg. Academically, I felt he was in the right placement, but I was having second thoughts about what was going on physically. We thought we should look into seeing a different doctor.

Back to my computer I went again. The end of 2006 I started doing research into the DAN! protocol. We attended the DAN! conference in April 2007.  I was so excited to hear all the great things that were occurring with other children and in the autism field. After much research into different doctors, we decided to go with a doctor out of Florida in May 2007.  When his evaluation was completed, he increased his vitamins and added some new things and he started talking in complete sentences.   He became more social then ever before.  We also started doing chelation with him.   He has not really been pulling much toxins out but lead.  Ethan loved Thomas the train and of course, he had trains that were recalled because of the whole lead paint issue.

He is still working on his socialization and communication skills. It is amazing to see how far he has come in such a short time. He now plays with his sister, Abby and with other children. I remember a short time ago when Abby would ask why Ethan would not play with her. When she would ask me, it would make my heart break for her as well. I know that Ethan's autism has affected each of us. I believe that we were each taught something. We are all stronger individuals because of this. Abby and Ethan are so close now. I just love to watch them play. It is like Christmas everyday! We are so blessed.

Even though our life's journey has traveled down a path that I would not have chose if I had been given the opportunity to chose, I would not change it now for the world. This brings me through the journey of Ethan's first five years.  I wonder what the next five years will be like!  I must say that for the first time I am actually looking forward without fear of the future and what it holds for all of us!  I am trying to work on my relationship with Abby and Ben now that Ethan is doing so much better.  I still at times feel sad about losing time with them. We still have a long way to go, but I have realized that I do have other family members that need me too!  I am so thankful that Ben is in my life and has helped me through some really difficult times. It has been a long and difficult journey...  but I know that the Lord has been with us through it all and will never leave us!  I clung to Philippians 4:13 "I can do all things through Christ who strengthens me."  Without the Lord, I am not sure where we would be now.

Because we have been so blessed, we would love to be able to help other families who maybe experiencing challenges with autism. It is our hearts desire to be able to touch the lives of others as our lives have been touched. As we are approaching the end of the beginning of our journey to the recovery of Ethan, we would love to be able to make an impact in other people's journey. Many thanks to all our past and present therapists and teachers, family and friends for all your love and support!!! We would not be where we are today without each and everyone of you!