The first night we spent in the hospital he screamed for almost the entire night. I tried everything, singing, feeding, rocking, bouncing, and changing diaper, nothing seemed to console him. It was like I was in some alternate universe. I was his mother. I was supposed to be able to quite his crying with just the gentle sound of my whispering voice...
I was assured by the nurses that everything would be okay. That he was probably just having a tough time getting used to be outside of his warm and cozy home that he had spent nine months swimming in.
The next day was okay but still deep in my heart I knew something was “wrong”. I didn’t know what but I just felt it deep in my bones.
I took him to his first doctor’s appointment in tears. I hadn’t slept in almost two weeks because Ethyn was literally waking up every 20 minutes and I refused to let anyone help me. Being a first time mom you want to do everything and show everyone how capable you are of juggling the responsibility of being a new parent.
I couldn’t understand why he wouldn’t stay asleep in his crib. Sometimes holding him gave me an hour of uninterrupted sleep but no more than that. His doctor thought that maybe I wasn’t producing enough milk and suggested that I try supplementing with formula…so I did just that but there was no change in his demeanor. He was always fussy, always crying, always wanted to be bounced or held very tightly against my chest…so when I took him back, his pediatrician thought that maybe I should switch to a soy based formula because maybe he was intolerant of milk. I did that, no change.
Maybe I was just going to have a “fussy” and “cranky” baby. Maybe I was just a paranoid and over-protective first time mom. Maybe with time he would get better and start to sleep….but he didn’t. Over the next several months we did every test under the sun for Ethyn thinking that it could have been acid reflux or some kind of “brain” problem because he had an “abnormally” large head…but I explained to the doctor’s that I didn’t think his head size was really an issue because unfortunately his father and I had quite large heads ourselves.
We did Barium Tests, CAT Scans and MRI’S. All of these tests showed nothing. I took Ethyn to behavioral specialists thinking that he had inherited his father’s natural and unexplainable stubbornness and temper. We tested for diabetes, lead poisoning, cancer, vitamin deficiencies…you name it…if there was a test for it…we tried it…Eventually we tested and poked his poor body so many times that to this day he still fears going to a doctors office.
In between all the visits to countless specialists ranging from neurologists to ear, nose and throat specialists, I just couldn’t seem to keep Ethyn from getting sick. At about 6 months old Ethyn was getting sick just about every three to four weeks. It seemed like there were only a few days a month where he was “well”. This would last for the next year.
In between visits to his pediatrician’s office and the Emergency Room at one o’clock in the morning, for ear infections, severe congestion, or bronchitis, I started to notice that he wasn’t developing “normally”. He was delayed in hitting his baby “milestones” by about two months. He didn’t eat rice cereal until about 8 months and didn’t learn to sit up unsupported until 9 months and wasn’t babbling or blowing spit bubbles. He never really smiled or responded to my voice when I or anyone else talked to him. It was like sometimes he was off in his own world.
I couldn’t go to a mall or any other “noisy” public place without Ethyn erupting into tears and screaming uncontrollably. I felt trapped. I was a twenty-one year old single mom who was confined and restricted to the house. The only time I really got to spend outside of the house was in our backyard either pushing Ethyn in the swing or letting him play with the water hose.
Even though I didn’t have the desire to, I couldn’t join any “mom’s clubs” because Ethyn didn’t like leaving the house unless it was for a car-ride. At about 10 months old his pediatrician uttered a word to me that I thought I would never hear in the same sentence with my son’s name. Autism.
He told me that he thought that Ethyn had Autism. It’s strange because where most parents would have burst into tears, I just sat there in the freezing cold office…numb…It was like he didn’t even say anything to me at all. I basically told the doctor that I wanted a second opinion and wanted to be referred to a doctor who specialized in autism.
We were referred to a place in Scottsdale that was the "go-to" place for diagnosing children with autism. Unfortunately it took us eight-months to get an appointment at this particular facility. But I had a feeling in my gut during these eight months of waiting that the doctor’s were going to tell me something devastating. After all…Ethyn was almost a year-and-a-half old and said no words at all.
Every day had to be the same as the day before otherwise it was a “bad” day, full of crying tantrums and ear-covering. If he watched a cartoon on TV…it had to be the same cartoon over and over again. There could be no variety or change to his day. The same with food. He wouldn’t eat foods with certain textures, such as noodles, and would only drink water and apple juice from one particular cup.
Finally, the day came for our appointment. After talking with the doctor for about an hour-and-a-half, discussing Ethyn’s mannerisms and medical history and observing him, she finally looked me in the eyes and confirmed our pediatrician’s diagnosis. Ethyn had Autism.
It wasn’t until I got in the car that I burst into tears. All the dreams that I had had for my son diminished and I was left alone with a beautiful 18-month old boy in the back-seat of my car, who didn’t understand or realize that I was crying…who couldn’t even say Mom. I was crushed.
As crazy as this might sound, I almost felt like someone really close to me died. A piece of me died that day and I think I was scared that I would never recover from it. A few weeks went by and I wondered what to do and where to turn. So…I went to my local Barnes and Nobel and went on the hunt for books about Autism.
I think that’s when it really hit me…when I was crouched down browsing through books in the “Special Needs” collection that I finally realized that I had an extremely rough road ahead of me. But at the same time…that’s when I decided that I wasn’t going to give-up. Eventually we received a referral from the Arizona Department of Developmental Disabilities (DDD) and as time went by we were assigned a support coordinator and I was given a list of therapists and people to call for evaluations for speech and occupational therapy.
I have found that speech therapists that are specialized in autism are extremely hard to come by so Ethyn now almost two-and-a-half is still on a waiting list for speech therapy. Though I am grateful for the limited amount of services that can be provided by the state…to me it’s still not good enough.
Ethyn is still very temperamental and either likes you or he doesn’t…so we are now on our second developmental therapist because Ethyn hated and wouldn’t go near the first one. I have had to educate myself and have come to find that I’m going to be Ethyn’s biggest teacher. Even though he is still incredibly behind in his speech, everyday he babbles and says new sounds more and more. He actually has even said his first word... “down”…which he learned from doing ring-a-round-the-rosy with his developmental therapist who comes in once-a-week.
Though I’ve know it all along, his therapists and I have discovered that even though Ethyn is very picky compared to the average person about certain things…he’s also incredibly coordinated, smart and stubborn. He is the only two-year old that I know can jump-up and down fairly high without falling, dance like you wouldn’t believe and do perfect summersaults.
He may not be “normal” by many people’s standards but by mine he’s almost to advanced for many. The doctor’s and I are hopeful that with a few years of intensive therapy, that will challenge and be tough on his little mind, that Ethyn will recover from this awful and mysterious disease.
Many people think that autistic children are “lost” souls and will never recover but I know that one day Ethyn will come out of “his world” and join us in “ours”. It’s going to be hard to pull him out of it but throughout the day he stops and looks at me in the face and I know that I’ve just gotten a glimpse of the “real” Ethyn that’s inside. And even though I’m still pretty much confined to my house, haven’t slept in two years, and am still going to countless specialists trying to figure things out, I know that one day he’s going to be just fine.
He’s come so far already and I’m not going to give-up on him. One day I know I’ll be able to hear and understand what’s going on in his little brain. I won’t ever stop loving, pushing and cheering for him. Even though I’ve gone through and experienced a lot more in the last two-years than most parents experience in their whole lives, Ethyn having Autism is one of the hardest but one of the best things that has ever happened to me.
He has made me a more compassionate, loving and understanding person. He was given to me and to this world for a reason. He was made to show people that there is life and hope for those with autism and that we should never give up on them.
