Thursday, April 30, 2009

What if she is Autistic?

Wow! I can't believe how many views I've had on this blog in such a short time. Clearly people are interested in what life is like parenting an Autistic child and I have to say, I'm thrilled to tell you about it! Autism has reached epidemic proportions and yet the research to find a cause and a cure is the most underfunded of the most common childhood diseases. Awareness needs to be raised and I'm happy to do my part, even if it just writing a little ol' blog about my sweet girl.

I wrote a paper earlier this year titled, "The Autism Controversy: Genetics, Vaccinations, or the Environment?" You could read it in my Facebook notes if you'd like. I discovered that Leukemia, which affects 1 in 25,000 children was the most funded of all the childhood diseases with $310 million dollars invested privately for its research, while Autism research received a mere $15 million, despite the fact that it affects 1 in 150 children. 1 in 150! Now please understand that I by no means feel that other childhood diseases like Leukemia are less important or don't deserve every dollar that goes into research for a cure. On the contrary. I hope the funding remains... or grows and a cure is found. I only hope to raise awareness about how underfunded Autism research is, despite its high rate of occurrence.

Quite a few people, all of whom are young mothers, have asked me in the last couple of days how I "knew" or "suspected" that Abby was Autistic. For sake of not rambling on and on today, I'll start with the beginning and save the rest of the story for future posts.

Like all new parents, I'm assuming, I hoped and prayed that my child would be healthy and "normal". I did let myself think, in an attempt to prepare for the worst, "What if she's not? What if something is wrong? What if she is Autistic?" That last question resonated in me and it didn't go away. I asked it of myself often, despite the fact that I didn't say it out loud to anyone else and had very little reason to think it. I asked myself this question throughout the first months of Abby's life, but I was afraid of "speaking it into existence", so I remained quiet.

Abby was a colicky baby. She never took to breast feeding very well. We struggled for the entire 3 months that we breastfed. Eventually, we started to supplement with formula, because with all of the crying she did, I thought, maybe I'm eating something that is upsetting her, despite my efforts to swear off of dairy and broccoli and anything else I could think of that might be giving her gas or upsetting her digestive system. But nothing seemed to help. After a bit over 3 months of breastfeeding we switched entirely to formula. It broke my heart to do this. I had always pictured myself as the breastfeeding super mama, but something had to give, for both of us.

Well once we switched to formula it was like we traded in our baby for a new model. She was soooo mellow. No more nonstop screaming sessions. She was such an easy baby. But there was always that nagging question in the back of my mind. "What if she's Autistic?" She never was a very snuggly baby. I believe it was when she was about 5 months old that she developed the muscle control to convey through body language that she wanted to be put down. I had always rocked her to sleep, but one night in particular, she was very fussy and wiggly. Feeling frustrated, I said, "Fine! I'll just put you to bed then!" And when I put her in her crib, she relaxed immediately, turned her head away from me and went to sleep. After that day, I paid attention to what she was telling me with her body language and 9 out of 10 times, she wanted to be put down and left alone.

Abby was always content to play alone, from pretty early on. By 6 months old, she could occupy herself for hours on the floor with toys and books. She was more receptive to her dad's company, but often if I tried to join her on the floor she would get frustrated and fuss until I left her alone. It was hard for me. I wanted to be this great, fun and engaging mom, but unless I was feeding her, changing her or bathing her, she didn't want much to do with me.

She was about 9 months old, when the nagging question, "What if she's Autistic?" got louder and louder. I was sitting at the computer one day and Abby was playing in the same room on the floor. I asked her a question and she didn't seem to hear me at all. "What if she's Autistic?" the question asked.

I called her name. No response.
I called her name again. Nothing.
"Abby?" Nothing.
"Abby?" She didn't flinch.
"Abby?" Still no response.

"What if she's Autistic?" the question seemed to be screaming in my head now. I thought, "I'm going to say her name until she looks at me."

"Abby?" Nothing.
I must have said her name 50 times that day.
She didn't look at me once.

Not until I got down on the floor with her did she look at me briefly as if to say, "What?!" before she crawled away to be alone. I went back to the computer and logged on to with eyes full of tears and trembling hands.

"What if she is Autistic?!"


Trojan Gayle said...

what a sad story. this experience must of been terrible and soul destroying. I have one question to ask you. How did your husband/partner feel about what was happening and how did he support you during this time?

Sally's World said...

i feel you, i am so glad you are writing about this, it will help make people realise how it really is...these pictures are amazing, the one with the book is totally adorable

you are a strong woman...i honour you for talking about this so honestly!

My name is Erin. said...

Thanks, Trojan and Sally.

To answer your question, Trojan, I am extremely blessed with a very supportive husband. I didn't talk much about my fears with him in the beginning. I really thought that if I talked about it, it would come true. But when I did start talking about it and facing my suspicions, he trusted my instincts and listened intently to anything I was studying or reading about the subject. Like I said, I am extremely blessed. He is wonderful.

Trojan Gayle said...

Thanks for your answer. I think that its great that you have that support within your relationship especially when you have to tackle those difficult questions. This blog of yours will help others who are on a similar journey like you and educate people like me who know very little of people who live with autism. Thanks again