Life with Autism... To me- Autism is fascinating, and I've found over the past 5 years, that people are much more open minded and curious about it. I can't remember ever hearing about it when I was growing up. I remember that I would talk to kids who were different, and talk to them like everybody else, because it seemed to make them happy... And I've always found joy in making others happy. Maybe that's why God blessed me with Ethan?
I do feel like Ethan is a gift... Having a son with Autism opened my eyes to a whole new world. Looking back, everything before him seems so alien to me. I know I was an independent, single minded person... But it's all so vague and unimportant now. God gave me my purpose....
When I was pregnant, I was not a happy, glowing, bouncy person. In fact, I wanted to punch **every chick** who told me that she had the "best pregnancy!"... Obviously being swollen and chemically imbalanced, didn't make me a spunky person. I was in and out of the hospital and the doctor with constant kidney infections. I was on pain medicine at one point through i.v. and who knows what else. I'd informed the hospital that I was pregnant. The doctors and nurses should know what is safe for me, right?
Finally the day came.. It was time to meet this little guy.. I went to the hospital around 9 in the morning, Ethan arrived at about 5 minutes after Midnight... I don't think I understood life before then. I don't think I'd ever seen such a beautiful soul. So innocent, tiny and amazing... mine! This little tiny creature was a part of me.. I am to shape this human being. How terrifying and exciting at the same time. Thus, our adventure begins...
When Ethan was born he had a hematoma on his head. A hematoma is a solid swelling of clotted blood tissue. The Dr's informed me it was because he was in the birth canal too long. He wore a soft blue helmet for 6 months. While I was breast feeding, Ethan had reflux so bad that he would constantly projectile spit up. When I asked the doctor about this, he told that I probably shouldn't eat spicy stuff... (0.o) Ethan also had a lot of rashes, the doctor told me to put hydrocortisone cream on it. FINALLY, I figured out he had an allergy to dairy.
As Ethan grew, It seemed to me that he wasn't developing like he should. It took him longer to sit up and walk than most babies. He didn't make normal baby sounds, I had a lot of trouble getting him to vocalize. When he would cry, I found that there were certain songs that I could play that would completely pacify him. Barracuda by Heart was one of them. As soon as the song was over, he would begin crying again. I know every note and word to that song like the back of my hand!
He began walking around 16 months. Several people told me it was normal, that all kids walked when it was time for them to.. but I knew something was different. His way of communicating with me was screaming and pointing. Pretty soon, I knew what he wanted just by the tone of his voice. I would label everything, trying to get him to repeat the word but to no avail. The only things that would get him to talk were movies. Thomas The Train, Cars, The Incredible's. Ethan would mimic their sounds and rhythms, which felt like some form of verbal success to me!
I spoke to Ethan's doctor about how I didn't think he was on target developmentally.. I filled out a developmental questionnaire and the Doctor agreed that he needed some extra attention. He was put on the waiting list to be neurologically tested at Amos Cottage in Winston-Salem, and we were soon visited by the CDSA (Children's Developmental Service Agency). They did testing, and sent someone out every other week for Ethan to have play therapy.
Ethan constantly had ear infections, as well as sleep apnea. The ear infection antibiotics caused a lot of yeast infections all over his body. When he was 2, I had his tonsils and adenoids taken out, and tubes put in his ears. It was a GINORMOUS relief to have him sleep through the night without randomly gasping for air.. and no more ear infections! Now to figure out the rest..
During the holidays of 2005 I was pregnant with my daughter, Ellie. I remember my dad taking the family on a hay ride around Thanksgiving. I was talking to my uncle and explaining Ethan to him when he mentioned autism. I had absolutely no clue what he was talking about. But* everything he said fit... It was all these symptoms that sounded like it summed up my son.. So I got online as soon as possible and researched my butt off!
Autism. Autism. Autism... I remember tossing that word around in my mind. Autism. That's a label, he has a label? This is strange.. Where do I go with this. Hmmm...
I didn't cry my eyes out- (That was my Mom's job) I just educated myself. Well- if this is what we have then we should fully understand it, right? Of course! Than's my baby! The world wide web is the greatest resource to educate ones self. I found endless amounts of information.. Fascinating information. Statistics.. probable causes.. Youtube, ahhh... Youtube. Neurological disorders, brain scans... All the neatest things.
I've always had this way of finding something positive in the middle of a very wicked storm. I'm not sure if it's a gift, but I appreciate it. I knew my son had PDDNOS (Pervasive Developmental Disorder, Not otherwise specified) And I also knew I may not be able to cure it, but I can definitely do some things to improve life for Ethan.
When I was pregnant with my daughter, the Doctor called and told me that there was a chance that she would have down syndrome. Sheesh. Around the same time, my best friend passed away and I found it very difficult not to question God. There were times when it felt like the world was crashing down around me. . I could always find solace in music. It calmed me down, served as my motivator, my meditation, my comfort. It also turned out to be therapy for Ethan. He loved Heart, Pat Benatar, and Kasey Chambers.. His taste in music certainly made me giggle. I didn't mind listening to Heartbreaker 47 times in a row.. It made Ethan happy, and that ultimately made me happy.
When Ellie came along, she was a healthy, beautiful, sweeeeeet baby girl! I don't know what you classify as a perfect baby, but she was close. She was so calm, and happy and easy going. I feel like maybe God gave her to me to balance out everything? Ethan wasn't so excited about a little sister. He wanted me to put her down all the time because he was VERY attached to me. When Ellie became more mobile They seemed to get into their sibling flow.
Ethan was very attached to me. He had severe separation anxiety.. And still does to a certain extent. It was kind of stressful at the time, but I always thought that it felt nice that someone loved me that much. As Ellie was a sweet loving baby who loved most people she was around, Ethan was quite the opposite. Besides me, he only liked my Aunt and my Mom and Dad. There were plenty of other people in his life, but those and myself were the only ones he had any affection for.
When Ethan was 3, he started preschool and was mainstreamed. It was important to me for him to be educated in the most progressive way possible. I didn't want him to be in the E.C classrooms. He had a tendency to mimic, and I'd rather him mimic kids that were progressing normally. While he was going to school, he was getting speech therapy and occupational therapy- both at home and at school- As well as play therapy.
Around this time, he knew the name of every single brass instrument, all the different types of heavy equipment and could tell me the name of every shape including pentagon, hexagon and octagon. He would lay on the floor and line up every train and tractor in a certain order. He would build more intricate train tracks than I could even attempt to try. And he knew directions. If we didn't turn down Joe road to get to my Moms house he was very angry!
Ethan was still screaming and pointing. He knew plenty of words but would only repeat the same words over and over. And he would repeat lines from his favorite movies. He often referred to himself in third person. Every day I asked Ethan lot's of questions about his day..I tried to get him to tell me what he needed and wanted. I constantly pushed him for answers. I was at the point where I didn't think I'd ever be able to have any kind of normal conversation with him.
When Ethan was 5 he was officially diagnosed with classic autism.
I can't say that I was super excited about him being diagnosed with a neurological disorder, but I was excited to have a definition to work with and more open doors for him. Soon after he was diagnosed, I met a parent who also had a son with Autism.. She told me about this GFCF diet she had put her son on... and about this autism doctor they were seeing. She gave me a lot of information about it so once again, I educated myself with all of the ideas and facts that she had given me. No matter what happens in my life, that lady is- and always will be- one of my heroes!
GFCF (Gluten Free, Casein Free) Is a big part of our lives and will always be a staple. It's funny when your own little family unit adapts to something... How ALL of the people in your life will adapt to it as well. When I took Ethan to the autism Dr. she gave me a lot of hope. I was always stuck in the here and now.. Hope wasn't even something I had time to think about really. She filled me with plenty of it. So much so, that after we left her office, I went home and wrote a letter to all of the most important people in my life. I am about to embark on a huge journey with my kids, support is needed!
It's not easy taking wheat away from a VERY, VERY picky kid. A very stubborn kid at that. Ethan likes to only have certain things all the time. I knew that in order to see results from this diet.. then I had to be consistent. From what I understood doing my research, this diet would open his mind. I knew it wasn't a cure for autism, but it could possibly open his brain! (Yayyy!) He was halfway on this diet to begin with. I knew he was allergic to dairy, so at least I was halfway there... Here it goes. I think initially, it seemed much more overwhelming than it actually was. I found a lot of options for Ethan. More than I realized existed, which was relieving.
Things started to change for Ethan. Starting with the outside of his body. His eczema and rashes started going away. His skin cleared up tremendously. He was still repetitive, but not as much. His autism stems stopped popping out as much. Less flapping, no more spinning in circles. The teachers noticed that he was making eye contact now and they could hold his attention in class a little longer.... I picked him up from school and asked him what he'd done one day.. For the first time EVER, he answered me... "Went to the gym." This is when the tears started rolling, my baby answered me. I didn't know he could do that. I was so excited I remember calling my mom. GUESS WHAT?!?!?!?
I feel like he knew how to answer me all along. I really do. But I also feel like something in his brain wasn't letting him. Maybe that's why he screamed and pointed so much. He had to be frustrated because he couldn't get the words out. He understood everything I said but he couldn't process the words and deliver. Hitting that realization definitely brought me to tears. I felt like he was locked in his own prison for 5 years.... Never able to express exactly what he meant. But now, I was figuring out the possibilities... If he'd improved this much so quick... let's take some more strides and see what happens.
My aunt and uncle got me a ticket to go to an autism conference in Winston-Salem to see Temple Grandin. I'd never heard of her before but of course I wanted to check it out. She had autism and was going to tell her side of the story.To hear straight and directly from someone with autism was exciting for me. As a parent, don't you wonder what your kids are going to be like when they're adults? For Ellie, I could see that she can be anything she wants. She has no burden of mental disabilities, and she is extremely intelligent. But Ethan is a different kid... I've laid down in bed several nights wondering and worrying.
When Temple started speaking I was instantly awed. Wow. She's fascinating. Her tone of voice, her mannerisms, her story.. I'm sure I looked like an idiot with my mouth gaping open soaking in everything that she had to say, but I didn't care. Here was a brilliant lady, a professor no less... Who was purely defying the odds. This day changed my life in a lot of ways. It changed my understanding for people in general. I remember her saying that there was a little bit of autism in every one. Everyone has a unique brain, every brain is works totally different.... Hmmm... So that completely scrambles the word normal. What is normal? I think everybody has their own inwardly, but ultimately to me, there is no such thing.
Ethan was sent to have a brain scan between the ages of 5-6. The results showed that he has a spot on his cerebellum. What that spot is causing, is yet to be known. The cerebellum controls regular and fine motor skills, balance and coordination. It may also be involved in some cognitive functions such as attention and language, and in regulating fear and pleasure responses. Ethan has great motor skills.. He also taught himself how to ride a bike without training wheels. There is no way to know exactly what is going on.. Maybe someday science will progress enough for me to understand this "spot". .
Ethan has been mainstreamed in the public school system every year so far. Luckily we have had some pretty amazing teachers along the way. It's interesting to me that the kids around him seem to motivate him. The teachers have told me so many stories about how Ethan gets particular about things and his fellow students help him along. He does homework and has to make good grades like the rest of the world. He get's pulled out of class for speech therapy and he get's some one on one help every day. But he's doing it!
We have been blessed to have a close family. Besides Ellie, Ethan has 6 other cousins that are close to his age. I think that has helped him a lot socially, and what an amazing group of kids for Ethan. They Love and adore him and try their best to over compensate for him.. I do believe Ellie was made for him. Of course they have their disagreements... but sometimes they just seem so perfect for each other.
At this point in our lives, the 3 of us are very blessed to have such amazing friends and family. Ethan is 10 now, and has a few more favorite people. His mind has opened up so much that it doesn't seem like a chore anymore. I don't have to try and figure out.. he can tell me.
I can't tell you what caused Ethan's autism. I have ideas, but not pin point proof on any of it. I used to be rather curious about finding out... But since there is no way of knowing, I've let it go. He is here... He is who he is. I simply adore who he is.
The first few years of his life were challenging... but worth it! He isn't perfect, or normal... But who is.. :)
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