I’ve been meaning to write our story for a very long time but just haven’t gotten around to it. So, finally, I give you part one of Silas’ story. My purpose is to write down all of him symptoms from day one, hopefully to help you with your own child. Silas didn’t have the symptoms we all hear about like no eye contact and no snuggling. He didn’t regress at 18 months, he didn’t have major sleep issues. It’s a totally different story and it needs to be heard.
Silas’ entry in to this world wasn’t easy. He had an incredibly traumatic birth experience that ended with him being ripped from my loins with forceps. He cried the whole night through.
The word “autism” first came to my head at a very very early time. I remember my sister Jill chasing his eyes with her face when he was only a few days old. “SILAS!! Make eye contact with me” she said. I was already a bit worried.
Silas was seemingly a normal baby. A few things were funny though, like the moment he could focus on things that were farther away than two feet he’d stare at fans. All fans and any fans…stare stare stare. He was also really hard to get calm and to get asleep. He liked to be swaddled REEEAAALLLLYYYY tightly and liked rough rough rough pats and rocks to get to sleep. I think people thought we were abusing the poor fellow.
The biggest thing to help Silas calm down was singing. I sang to that boy all….day…..LONG.
His smile came at the right time but it was soooooo hard to get him to smile. We’d chase his eyes around with our faces. Finally he’d focus on us and a little smile would appear. It was no easy task. Laughing was even more a strange event. It would come out as forced air. His whole body would tighten and it was mostly a cough more than a laugh. Gosh, looking back it was all so obvious.
Silas’ first motor skill came right on time. He sat in his exersaucer and spun this barrel thing that was full of beads. he’d spin it and spin it and spin it and spit in. Over and over and over, round and round and round it would go. I’d laugh and jokingly say “that’s my little autistic boy”. Silly me.
Silas thrived on snuggles and he still does. We’d snuggle and snuggle and snuggle and snuggle. He just loved it with all his heart and so did I!
Before Silas was even crawling he began to look at books. He’d roll around the house to get where he wanted to go and he would end up at is basket of books and proceed to lay there for HOURS and look at books. He knew how to hold them right side up and turn all the pages properly. He didn’t just lay there for a bit and get distracted, he was consumed with it. It was all he wanted to do, aside from rolling around, spinning things and snuggling. This was Silas before he was mobile. More to come.
Silas took to solids just fine. He’d eat a variety of foods. They always had to be pureed though, always. When other kids his age were eating more solid things Silas was still eating very simple baby foods. Of course he knew his way around a cheerio and mushy things. He couldn’t chew an apple up until he was about two and a half. He also never spit food back out, once you got it in his mouth he would have to swallow it. He’d stuff his mouth REALLY full of food and he would never be able to chew something fully. He’d chew it partially and then swallow it…it looked like it really hurt. Even if it was just a little bit of food.
Feeding was a weird thing with Silas though. I used to give people proper instructions to feed him, I forget what they were now, or Silas would have a fit. My mom would look at me like I’m nuts and just go feed him how she would feed any child, it often ended in a fit. I remember Jill attempting to feed him one Christmas. He was over a year old and still on pureed food. I was calling to her from across the room telling her she was doing it wrong and that’s why he just wasn’t eating it. He was screaming and crying. We were walking on eggshells for him without even knowing it. I was insulted when people thought I was weird for telling them exactly how he needs to eat. Wasn’t every baby like this? I had no clue.
Silas crawled right on time, if not early. He was a super duper power crawler boy. People would say how fast he would crawl. He would look straight down at the floor and watch it go by. Even past the time he was walking he’d still drop to his knees on a new floor, put his nose down close to it and watch it go by as he crawled REALLY fast. He would crawl right in to things because all he’d watch is the floor go by. “Quirky” I thought.
Silas wouldn’t notice things like other kids would. I began walking in the mornings with my friend Ashleigh. Her daughter, only 3 days older than Silas, would point at the birds and look up when an airplane flew by. Silas seemed oblivious, completely unaware. He had never taken note of a bird or an airplane. I decided then and there that some kids were interested in certain things and some kids interested in others. Silas could sing like no tomorrow, singing full songs that no baby should be able to sing. He was interested in Singing, not talking and airplanes and birdies.
At about 10 months Silas began to bash his head on the floor when he was mad. It was an awful sight to see. It broke my heart to see my son so mad that he would hurt himself. Person after person told me it was a normal thing to do so I just let him, hoping that he would hurt himself enough to not want to do it again.
At times I would be with my sis in law Leanne. Silas would do something odd and we’d look at him and just wonder what on Earth was going on with him. The word Autism came up many many many times. But then we’d say “but he snuggles” “but he makes eye contact”. Then we’d leave it at that.
Leanne even once said “I bet if Silas was an abused child he would have autism”. I found that to be an interesting statement. I know for sure his autism would be a million times more apparent.
Jill and I were talking on the phone yesterday, about this stage of Silas’ life. About how it was so stinking obvious but we just didn’t put the puzzle together yet. We both concluded, though, that Silas is far more high functioning than he was when he was a baby. “Less autistic”. He was SO within himself as a baby that he wouldn’t let me play with him. I tried and he would just cry. From the day he was born, Silas has slowly been emerging from within himself. How lucky am I for that?
Sometimes I wonder if it was that delivery. There is a test we can do to find out. It will break my heart if that’s what caused this. But the fact that he’s slowly emerging, perhaps his brain is slowly healing itself from damage done due to lack of oxygen, the trauma and the force of the forceps. We’ll find out soon.
It’s been a long time since writing about our story. You can find part I and II up top under “Silas’ Story”.
Time went on and Silas’ few words that he had started speaking never turned in to more words. I kept waiting for him to talk to me but it just wasn’t happening.
When his little brother, Isaac, came along, I was astonished at how different he was. Isaac was talking to me, cooing and wiggling and looking at me in the eye. What a different child I thought.
Silas started showing signs of being someone incredibly smart. He first learned all the animal sounds, then he quickly learned his colours, then shapes, then it snowballed from there. He picked up things so quickly, it was so easy to teach him anything.
My mind is really quite blank about the next year. Silas was just going along, not talking, not really doing anything kids his age were. We had found out that he had a peanut allergy and our world was rocked. I was in absolute despair about it. I cried and cried and asked God why. It was awful. My little boy could die from something as simple as a peanut!
I remember being quite the hermit. We had moved in to our first home that we could call our own. Silas had his second birthday in this house and we are still here. Looking back at the blogs I wrote at that time, it’s so obvious he had autism. He just wasn’t talking well. He was echoing everything I said. He was telling strangers that he loved them, spinning things constantly…still.
He would sit in front of our front loading washing machine (he called it a water fan) and have his breakfast while it spinned. I got a lot of laundry done.
I was in the fog of being a mom of two children…two babies practically. I noticed things about Silas that were so off but he would SNUGGLE!! I had my facts wrong. He snuggled me and I thought kids with autism never ever did that.
I was also scared that if I went online and looked it up, I would freak myself out about nothing. Jenny McCarthy had just come out with her story on Oprah about how she “cured” her son’s autism. I understood some of what she was saying but it all didn’t fit. Autism just remained at the back of my mind. My son was definitely delayed, we had definitely different but so was I when I grew up.
Finally, as I was on the phone with my sister Jill, telling her about how many tantrums Silas was having all the time she told me I should go to the doctor to just see if anything is up. She meant something physical but I know there was something else in her voice. It was finally someone I trusted, telling me that they also noticed something different about my son.
On to the computer I went. I typed in “autism symptoms” and as I was reading I burst in to tears. It was time to call the doctor.
I took Silas to my GP very shortly after. Thinking ahead, I brought along his very favourite toy. Something he called his “spinny toy”. I guess it just had a good spin to it and he loved it to pieces.
After examining him and saying nothing seems to be physically wrong, he maintained that he didn’t think Silas had autism. Then I passed Silas his spinny toy and the doctor changed his mind. He didn’t like the way Silas looked at it, something was “off”. Time to go to the pediatrician.
Silas performed great for the pediatrician. Upon going in he dumped out a bunch of lego and started lining them up.
It was a hard conversation with that man. I didn’t want the power of suggestion to have him misdiagnose my son with autism. I told him I saw red flags and I just wasn’t sure what to think. He finally just made me say it “what do you think is going on with your child?”.
“I think he has autism.”
I was right. The man went on to say that he was sure Silas had autism. He handed me a box of tissue and began telling me all of the things he saw in my son after 5 minutes of being around him. Symptoms I didn’t even know about. I didn’t cry, I didn’t need those tissues. I told him I was expecting it. No problem, lets just deal with this.
After filling out NUMEROUS forms I was sent on my way with almost a new person in tow. It didn’t feel like Silas anymore. I kept seeing this new disorder, noticing all the things I didn’t see before.
An old friend of mine works in that building. I’m the kind of person who needs people. I need to talk, I need to share, I need people around me with anything. I went to her office and walked in the door. She looked up to me to say hi and I burst in to tears.
“Silas has autism.”
I don’t know how long I was in that room with her for, or how I managed to get home. I do remember picking up Isaac from Leanne’s house. Her mom was there watching Lucas and was nice enough to watch Isaac too. I cried to her as well. I cried and I cried and I cried. When I got home I laid down on my kitchen floor, face first in to the cold wood and I screamed my face off. I screamed until my throat hurt. I screamed until my tears were dry. Until my head pounded.
I remember my mom telling me about a friend of her’s who lost her daughter in a car accident. She told my mom she would wake up feeling peaceful for a short short moment and then the rush of the pain and reality would come back and stab her. I knew what that felt like now. That was the hardest time of my life.
More to come….