A Personal Autism Journey - Part 2
Have you read How my Son was Stolen Part 1?
How my Son was Stolen Part 2
Before you read this, make sure you read my first article on my son: How My Son Was Stolen: Part 1. It's the first half to this hub, and it will help you better understand the continued struggle outlined in this hub. If you don't know what Autism is, I suggest reading up on it here : Autism Explained. This hub covers from Ayden's first birthday until his second birthday, and all that came in between. Enjoy!
Ba-Ba, Ma-ma, and the New Baby
After Ayden's first birthday he started to progress little by little. At 13 months he started saying, "Ba-Ba" and associated that with his bottle he was still drinking from. A week after he discovered "ba-ba" he started saying, "ma-ma". Though he did associate me with "ma-ma", everything became "ma-ma" as well,it was his babbling word. When Ayden turned one years old I decided to change his doctor, I was six months pregnant, and I was mortified for the new baby. It was a baby girl, but that didn't protect her from the disease. Autism affects 1 of every 100 kids, 4 out of 5 kids with Autism are boys, but that still left a possibility for my new baby girl to contract it; however it's contracted.
My belief is that it's a combination of allergic reaction to vaccinations, the environment, chemicals in food, and possible Mercury in the vaccinations as well. Ayden was receiving speech and physical therapy at that time, but it mainly consisted of playing with toys with Ayden for an hour. I changed Ayden's doctor in hopes of finding someone, anyone, to believe me. Someone who wouldn't just tell me that he was, "a boy, and boys develop slower than girls". I needed someone to believe me, someone that could help me. Ayden's first visit to the new doctor was a success. He believed Ayden wasn't developing correctly, and gave me referrals and contacts that could possibly help Ayden.
Ayden's new doctor gave me a referral for a developmental pediatrician, a neurologist,an ENT (Ear, nose, and throat doctor), and an Urologist (because they hadn't circumcised Ayden correctly). I called all the doctors and set up appointments. The Developmental Pediatrician had such a long waiting list that they had to make an appointment 6 months later. Ayden was 14 months old when his first appointment, the ENT, came up. I was7 months pregnant, Ayden still wasn't trying to walk, and I had a 2 1/2 year old that was jealous that her baby brother still got to be carried in a carrier.
The ENT told me that they were going to perform a Myringotomy on Ayden, Myringotomyis the process of putting tube in your ear to relieve pressure that may have built up. The first year of Ayden's life he contracted one ear infection after the other, I thought he could have possibly been deaf. We set the appointment up in June of 2008 because my due date was in April, and only a few weeks away. The next appointment was for the urologist, he checked Ayden, and set up surgery for another June appointment. The last appointment was for the Neurologist, they looked him over and set another June appointment to see if he was having seizures while he slept.
I had my youngest daughter in April, and my oldest daughter was so engulfed in the new baby. Ayden, however, showed a mean jealous streak I had never seen before. I held his baby sister to him and he looked at her, then me, back to her, and hit her in the tummy. Ayden was 15 months now, and had began to pull himself up into a standing position, he was also cruising, as they call it. Ayden loved holding onto the wall and jumping on the bed. I tried many times to get him to walk, but he'd just plop on the floor, stretch his arms up, and cry. June was approaching, fast, and all 4 of his appointments were set.
Ayden's first appointment was the Myringotomy surgery. It was only about an hour long, but I was nervous for him. The day Ayden came home he fell off the bed repeatedly, we shut the door to the rooms. Ayden was crawling down the hall and banging his head on the closed doors in frustration. I continued to sit Ayden with me on the couch, but because Ayden never messed with anything in the house, I made no protest when he'd climb down off the couch and crawl to the bedroom doors. When it was time for bedtime I tucked Ayden and the girls in, and I watched some t.v. I heard Ayden fussing and screaming like he did every night when I put him tobed, and then I heard a thud and an even more distressed cry. Ayden was falling off the bed again, and I blamed it on the surgery, something must have went wrong. Ayden had never ever fallen off the bed before, even when he learned to crawl. He got on and off the bed with ease, and now he kept falling out of bed. I decided to call the doctor in the morning as I was rocking Ayden to sleep that night.
When I took Ayden to the doctor, they found nothing wrong. Ayden seemed healthy and normal, and there was no stumbling of any sort, so clumsiness wasn't suggested. When I took Ayden home I started to prepare dinner. I let Ayden wander to the bedroom, as he so often did, and yet again a loud thump and Ayden's whimper.
I ran in the room to find Ayden climbing on the bed again, but this time he didn't hold on to the walls to walk on the bed, determined he was going to get back on and jump on the bed again. Ayden had been falling off the bed because he was walking and running on it. I placed Ayden on the floor and tried to get him to walk to me, but he was more interested in jumping, running, and walking on the bed. Ayden could walk!
Ayden and Anaya
Ayden's next appointment was for the Urologist because they hadn't circumcised him right when he was in the hospital. That morning I woke up and got Ayden ready to go for surgery. While waiting for Ayden's doctor to come and sedate him, Ayden started making a huge fuss, a nurse came over to Ayden and led him to a treasure chest full of toys and told him to pick one. Little did she know that Ayden doesn't play with toys. Ayden picked up a Rooster Beanie Baby, and I just thought that it was hilarious. A while later, they had strapped him on a gurney, him screaming for me, with a gas mask over his face. They brought Ayden back about an hour or so later and released him with some pamphlets about how to take care of a circumcision, and he was really cranky. Ayden has had no Urology problems since.
L to R: Anaya, Layla, Ayden
Ayden's First Words
It's funny how moms tend to take their kids for granted until they don't have them, they have a child with a disability, or they (God forbid) have their child kidnapped. When was the last time you told your kids to be quiet because they've asked you a billion questions in three minutes? I have to admit, I was guilty of it with my first child, but having Ayden changed all that. All I wanted was Ayden to say something, just a word would do. "Baby", "happy", "hiccup", anything! Alas, Ayden was 21 months now, and he still only said, "ma-ma" and "ba-ba". I had rescheduled an appointment with the Developmental Pediatrician for the next year, right before Ayden's second birthday in January, and I was patiently waiting for it.
The Developmental Pediatrician could diagnose Ayden and I could get the help he needed with a confirmed diagnosis instead of "just my speculations", but until then I had decided to take matters into my own hands. The beginning of October I had seen Jenny McCarthy on television talking about how dieting had helped her son, so I decided to try it. What Jenny doesn't tell you is that buying special stuff for your child is expensive, and I didn't have the money, there were a few things that I could do though. Jenny said to cut your child off regular milk. Check. She said he can't have certain bread. Check. I could do those both, though it wasn't big, it was a start.
About a week after I had cut Ayden off of milk, and pretty much all bread, Ayden and the family was in my husband and my room watching some television. Ayden, the silly boy he is, decided to bounce on the bed, right in front of the television. Ayden wasn't listening to my husband about sitting down, so I decided to take matters into my own hands. I gave him a soft, playful push on the forehead to try to get him to sit down. He giggled all the while still jumping on the bed. After about three or four tries, Ayden finally sat down, and gave me the most serious look I had ever seen on him.
"STOP IT!" he said. My husband and I looked at each other in astonishment.
"I think he told you to stop it!" My husband exclaimed.
"I know!" I retorted.
"BAD BABY" Ayden added.
I scooped Ayden up and ran him around the house screaming, "My baby can talk!" repeatedly. That was one of the happiest days of my life, and it was also one of the most memorable times that I have of Ayden being a baby.
Time went on, without another word from Ayden, but I continued to try my best to get him to talk. Ayden's therapists had grown from just a physical therapist to an occupational therapist, a speech therapist, and a nutrition therapist. The day I took Ayden to the Developmental Pediatrician, my husband came too, and we waited in the waiting room for the doctor to come out and check out Ayden. Ayden was being his normal rambunctious self, messing around with everything, when the doctor came out maybe thirty minutes after we arrived.
The Developmental Pediatrician looked Ayden over and asked my husband and I some questions about Ayden. Why we thought Ayden was Autistic, when'd we discover his "abnormal" behavior, what his diet was, how he interacts with people, and basic questions to figure out who Ayden was as a person. Due to lawful reasons, I won't announce the doctor's name here, but the next two answers to the questions the doctor asked me, and his retort, made me question his professional credentials.
"So what does Ayden like to do?" the doctor asked me.
"Well, he really doesn't do anything. Watch television and play with his hands mostly,"
"Well, what good quality does Ayden have?"
"Well," I paused, thinking of the right answer "he has a very determined personality."
"Well, if he doesn't do anything, then how do you explain him being determined." the doctor said snidely, laughing hysterically.
The lioness in me wanted to reach across the table and rip him apart, but I kept my composure and just added, "When he wants something, he'll stop at nothing until he gets it. He loves to get his way."
To this day, I don't know what exactly was his problem, but he took Ayden and myself into another room and tried to get Ayden to do puzzles and see what kind of verbal communication he had. Before my husband, Ayden, and I left the doctor's office, he advised me to put Ayden in a pre-school and come back in a year. I felt such overwhelming depression and hurt that he couldn't diagnose Ayden right then and there because that meant I couldn't get Ayden the help he needed without a confirmed diagnosis from a doctor.
When we arrived home, my father-in-law, that was staying with us, was furious as well. Any blind man could see that Ayden was Autistic, if you knew what Autism was. Ayden's second birthday came soon after, and I made the decision to add some other things to his diet, and see how that worked out for him. I decided I was going to create a gluten and casein free diet for Ayden to follow,