Life with a special needs child is never an easy one, nor is the road an easy one to navigate. Our journey began almost 6 years ago. Here is our backstory:
Our son Ethan was born on December 9, 2006. After what would turn in to a traumatic birth, Ethan came in to this world kicking and screaming at 12:22pm. He seemed perfect and his newborn screenings showed no indication of anything concerning. We went home with our little bundle of joy and our new life began.
When Ethan was about 6-8 weeks old I began to notice that he would “space out” while we would be riding in the car. I cannot count the times that I pulled the car over and crawled in the backseat just to ensure he was still breathing. I mentioned this to his doctor after it did not go away by the time he reached about 5 months. She was mildly concerned because she stated that children this young do not have the ability to daydream, but she thought it best we take a “wait and see approach” since Ethan was still very young.
We moved to Newnan in June 2008 when Ethan was 18 months old. We started seeing a new pediatrician who mimicked my concerns regarding Ethan’s development. He was still having his spacing out spells, his language/speech was not developing normally, and he could oddly play by himself for VERY long periods of time without seeking out the attention of an adult. We were immediately scheduled for an EEG with Children’s Healthcare of Atlanta. This would just be the beginning of our journey to get answers for our son.
The next few years of our lives would be spent seeking out the opinions of various different healthcare professionals. It started in December 2008 with the EEG which came back completely normal. At that same time we were sent to Interactiv Children’s Therapy for speech and occupational evaluations since these skills were not developing normally. In February 2009 we began therapy treatments in speech and occupational therapy once weekly for 1 ½ hours. However, we still did not have an actual diagnosis so we were referred to our first Developmental Doctor in February 2009. This doctor concluded that Ethan was SDD (significant developmental delay) and he recommended intensive speech and occupational therapies to help overcome the delay. Not completely satisfied, we sought out a second opinion in May 2009 and were told at that time that Ethan had PDD-NOS, a condition found on the Autism spectrum but not always associated with Autism in it’s plain form. We pressed forward with our therapies and began to see small improvements in Ethan’s development.
By the time early 2010 rolled around we had been in therapy for a solid year. Though we had seen improvements in Ethan, we felt like we had hit a brick wall. Having read a lot of how digestion plays a roll in behavior issues, we had an IGG food panel test completed on Ethan in May 2010 and thereafter began a Gluten Free, Casein Free, and Soy Free diet. I only lasted 45 days before throwing it all out the window. My very petite child lost a whooping 7 lbs in 45 days and I became too upset to keep at it. We saw no improvement in that 45 day span though I am told it takes more like 90-180 to actually see differences.
Discouraged and practically out of answers, we called upon the Marcus Autism Clinic in Atlanta Georgia and we were placed upon their waiting list. We waited patiently for 6 long months before we finally received the call that they had an opening for an evaluation and could see us in December 2010. We stayed by Ethan’s side through the 2 hour process and 2 weeks later we had a diagnosis. The Autism experts in the country agreed with the first Doctor that we had seen and stated that Ethan was SDD and was not believed to be on the Autism Spectrum because he was too verbal, too alert, and too engaging. This was music to our ears!
It is now present day, 2012, and our little man is quickly approaching his 6 birthday in a few months. Though our world has been status quo for the past 18 months since Ethan was evaluated by the Marcus Clinic, lately we have seen some distressing signs that again indicate we are not doing all we can to aid in his development. That is where my current blog will start because we have recently been introduced to the Brain Balance program and have been contemplating utilizing them to press Ethan forward towards reaching his developmental milestones. Though no decisions have been made to date, please continue to follow our journey as we navigate our way through the world of Special Education in the public school system and the decision/decisions as to what the best course is for our son! And as always, we appreciate your thoughts and prayers as we fight to find our son, hidden slightly in his own little world!
Read another excerpt from Brittney’s journey with Brain Balance here, and stay tuned for future updates.
My name is Brittney and I am a stay at home mom with 2 precious children and 1 more due in mid-November! My son Ethan is 5 and loves Curious George, trains, and Buzz Lightyear! Ella Grace is 3 and loves princess stuff, anything outdoors, and coloring! Pretty soon our little Eden will be joining in on the chaos and we are anxiously awaiting her arrival!by