Jill’s Blog

“When your child is diagnosed with cancer, neighbors stop by your home bringing precooked meals, hugs, and support. When your child is diagnosed with autism, families who see you in the supermarket will slip away down another aisle.” -Jenny McCarthy

On March 30th 2007 my husband, Nick, and I drove to Vanderbilt for the third time to find out exactly what was “wrong” with our son, Ethan.

A little less than a year prior to our trip Ethan’s baby sitter at the time approached me with a concern of Ethan being 2 and having no vocabulary. At a year of age, when given fruit loops, Ethan would separate them by color and eat them 1 at time; first red, then blue, then green and so on. He would repeat certain behaviors over and over again sometimes lasting for more than 30 minutes and if asked to stop he would become very upset. By 2, his behaviors were a little more strange. He would have to close every door in the house before he would eat his food. He would open and close doors 100 times before moving on to another activity. He would shake his head, almost as if he was “clearing” his thoughts and would spin the wheels on cars for over an hour or until someone finally just took it from him. He would line up his toys and if anyone moved one out of place then he would scream, kick, and cry as if something horrible had just happened. Trips to the grocery store with Ethan were referred to as, “Trips to Hell” because Ethan would make scenes that would make everyone around us stare. Eating out with Ethan was out of the question because 10 minutes into our meal one of us would have to get up and take Ethan out to the car and let him scream in his car seat until we were done. Being young parents, Nick and I never thought anything of these behaviors. We just thought it was who Ethan was. We never thought anything of him not talking because we had both always heard, “He will talk when he’s ready”. When Candy, his babysitter, expressed to me that she thought Ethan may have Autism I immediately called my mom and told her the “horrible” things Candy had said. I can remember my mom going. “Well, maybe you need to look up the symptoms” and me thinking, “Oh great, she’s on HER side and thinks my child is stupid as well”. When I got home that evening, I googled “Signs of Autism” and this is what I found;

Social skills

* Fails to respond to his or her name
* Has poor eye contact
* Appears not to hear you at times
* Resists cuddling and holding
* Appears unaware of others’ feelings
* Seems to prefer playing alone — retreats into his or her “own world”

Language

* Starts talking later than other children
* Loses previously acquired ability to say words or sentences
* Does not make eye contact when making requests
* Speaks with an abnormal tone or rhythm — may use a singsong voice or robot-like speech
* Can’t start a conversation or keep one going
* May repeat words or phrases verbatim, but doesn’t understand how to use them

Behavior

* Performs repetitive movements, such as rocking, spinning or hand-flapping
* Develops specific routines or rituals
* Becomes disturbed at the slightest change in routines or rituals
* Moves constantly
* May be fascinated by parts of an object, such as the spinning wheels of a toy car
* May be unusually sensitive to light, sound and touch and yet oblivious to pain

I was horrified.

This was Ethan. This was MY child. I called his doctor the next morning to make an appointment to discuss my concerns. At his appointment she agreed that Ethan needed to go to speech but wasn’t very educated about autism and thought I needed to seek a professional in autism. At his first speech appointment Ethan sat under the desk the entire time and spun the wheels on a favorite car. At his second speech appointment he did the same thing. The therapist said there was nothing she could do for me with Ethan’s unwillingness to try. She gave me a number to TEIS (Tennessee Early Intervention) and told me they could probably help me more and would provide me a speech therapist at my own home where Ethan may feel more comfortable. Within a month Ethan had been evaluated for services through TEIS and qualified for a speech therapist to come out to our home. TEIS also made our appointment for testing at the Monroe Carell Jr. Children’s Hospital at Vanderbilt. There was a 9 month waiting list, but Ethan would continue to receive speech at home until his appointment.

So there we were, 9 months and 3 trips later at Vanderbilt waiting for the doctor to call us back. I was so nervous. I’m not sure what I expected him to say. I had researched anything and everything about Autism and pretty much knew that was Ethan’s diagnosis. However, I still held on to “What if it isn’t autism and everything is going to be okay?”. When the doctor arrived, I could tell by his face that it never gets easier to tell a parent that their child has autism and that there was nothing they could for them. He looked at me and said, “Mr. & Mrs. Kelly, I know this is no surprise to you.” My throat swelled with a lump, “Ethan has autism. We don’t know why and we have no cure, but we do know with therapy that these kids can improve. You are his advocate, you have to fight for him. He may never speak. We suggest you buy a text-to-speak machine to help Ethan communicate.” The doctor handed me some brochures, a magnet, told me he would mail the evaluation with Ethan’s diagnosis and sent us on our way. We walked out of there in what seemed like slow motion. I looked at the faces on other moms in the waiting room and wondered if they were about to receive the same news. We left Vanderbilt and I cried. I was mad, I was sad, I was glad it was over. No more wondering. Ethan continued to receive speech at home for about another week. He turned 3 and no longer qualified for services through TEIS. Unable to afford speech on our own, we enrolled Ethan in preschool.

Jump forward a few weeks.

Nick, My sister Melissa, and I were sitting around the kitchen table playing a game when I looked over at Ethan and said, “Ethan, I love you” and he repeated, “I love you”. I nearly fell out of my chair. HE SAID IT! I didn’t care if he didn’t know what he was saying, HE SAID IT! I hugged him and threw him up in the air and I said, “I LOVE YOU!”. “I love you!” he said, again. There was hope. I hadn’t had much until this point, but this turned on my “super-mom” mode and I was DETERMINED to bring Ethan out of his autism even if Vanderbilt told me there was no cure.

Shortly after, I was given a copy of Jenny McCarthy’s book, “Louder Than Words”. I read the entire book in a day. Jenny claims to have “healed” her son, Evan, of his autism. Could this be true? Can you “heal” autism? Jenny agrees with health professionals that there is no cure, but that it can be healed. She makes the analogy that you can not cure someone from getting hit by a bus, but they are healed. Jenny recommends that after a diagnosis has been determined you find a DAN (Defeat Autism Now) doctor. I did. And we went. Our DAN doctor asked if he could pray with us prior to Ethan’s blood work. We agreed. He prayed that God would heal Ethan and that we would see no traces of Autism in our son. He prayed for our strength during the journey and that we would never lose hope. I had not through much about praying for God to heal Ethan prior to this. I was a Christian, but was not active in a church and had never really been guided on prayer. After that, I prayed multiple times, and continue to pray, for Ethan’s healing.
(side note: My mom gave me a book, “The Power of a Praying Parent”. If you are parent, READ THIS BOOK.)
After the blood work was done, it came back that Ethan’s brain processed casein similar to the way our brains processed morphine. Making him have the glazed look on his eyes, and a severe speech impediment. We took milk out of Ethan’s diet and within 48 hours Ethan was making vast improvements. He was talking, he was laughing, and he was playing with toys…appropriately, his OCD was pretty much eliminated other than a few qwerks. Since then we have slowly allowed certain foods back in with small traces of milk in them, and we can gauge when he has had enough. We have not, and will not, medicate Ethan. I truly believe that God is the ultimate healer. When Ethan was first tested, his results came back that he he at 14% for his age level. 2 months ago Ethan was tested again to find out what services he qualified for. Ethan is now at 94% and no longer qualifies for any services! PRAISE GOD! He still has certain behaviors that we continue to pray for. Tantrums when things don’t quite go the way he planned. He still has sensory issues that come and go. He’ll go days, sometimes weeks, without any problems and then may have 1 day that completely throws him off, but all in all he is doing AMAZING.

He started his first day of Kindergarten last week. He is in a mainstream class with typical peers and really enjoyed his first day of school. He talks well, and has lots of friends. Most people do not question if Ethan has autism because his autism behaviors happen so seldom. My husband and I can go out to eat, or take Ethan to the grocery store 90% of the time with no problems. He no longer shakes his head, or flaps his arms. He loves to learn.

I just want to give all moms out there HOPE. If you are just receiving your child’s diagnosis, or fear that your child may have autism, please do not give up. Please do not think that there is no future for them. With God, ALL things are possible and he WANTS to heal your precious child. You will need to seek professional help. Please do not ignore the signs and most of all, PRAY PRAY PRAY. Pray like you’ve never prayed before. You will see miracles right before your eyes and see God’s work not only in your child’s life, but in your own.

Ethan on his first day of kindergarten