Thursday, April 3, 2008

World Autism Day

April 2nd was World Autism Day. I know, I'm posting on April 3rd. That's because I live in a home with an autistic child. I can "chat" when my kids are playing or making crafts (which is almost constantly with the autistic one), but when I want to have a good alone time to think, it happens sometime after midnight.

Actually, the whole month of April is Autism Awareness Month. No doubt, if you've watched any news at all in the past few years, you've heard the reports of rising numbers of children being diagnosed with autism. Autism is considered a neurological "syndrome." The term "syndrome" is used for a diagnosis of symptoms that can't be measured physically. That's the simple way to put it. Autism is not a medically definable illness. It is a label given to a person who meets the criteria in the DSM IV....the "Diagnostic and Statistical Manual of Mental Disorders" for autism or Asperger Syndrome. For a good idea of what symptoms an autistic person has this site has some great info: For info on Asperger Syndrome, this site has the list of criteria used to determine this diagnosis:

While each child (or adult) has to "meet" the criteria to receive this diagnosis (or "dx"), it doesn't mean all people with autism or Asperger Syndrome will have the same symptoms. Autism is considered a spectrum ranging from profoundly autistic (this would be the person who rocks constantly, never talks, might need to be fed, and more) to Asperger Syndrome (very "high functioning" autism, and the time range and type of symptoms can be quite different, but end with a similar result). Basically, autism is a neurological disorder affecting the way a person responds to others and develops. In classic autism, a child will develop normally until about the age of 12-18 months, perhaps even saying words, then will start to regress to the point that the child is withdrawn, does not respond to other people, and stops talking. In Asperger Syndrome, often you have a child who speaks early and continues speaking, but much of it is echolalia, a repeating of phrases. Some children with AS will begin reading extremely early.

In our case, our daughter has Asperger Syndrome. I was just looking over the milestones for babies & remembering who I clung to my "What to Expect the First Year" book with her. The only thing she seemed to do on time was get teeth. She was either VERY early or VERY late in her development. I just read that by 1 year a baby should be making sounds like "da, ba, na." Bethany was doing that before she was 5 months old. She was speaking in sentences by 18 months, if not before. It wasn't until later that I realized what was missing: she was speaking, but she wasn't always communicating. She never pointed to something she wanted. I just thought she didn't need to because she could speak. She could not answer simple "yes" or "no" questions by age 4. She certainly could not answer "where" or "who" questions, never mind trying to get "why" out of her. She STILL can't answer many of the "why" questions about her feelings or actions. She NEVER held out her arms to be held. NEVER. When she was 2 years old she got sick with an upper respiratory infection. I asked her, "Do you want Mama to hold you?" and she said for the first time, "Mama hold you," which meant Mama hold me. At 2 she knew all of her letters and numbers. She was reading license plates to me! At less than 3 I remember her speaking in such big sentences for one so small. I was convinced she was a genius.

It was cute at 2 and 3. But as she approached 4, then 5, and still was not potty trained, still could not answer questions, still could not connect the letter she read with any type of sound it made, plus a long list of other problems, I knew this was not normal. Okay, I knew it wasn't normal from Day 1. I knew she didn't do what the book said. Babies were supposed to be groggy at birth. Babies weren't supposed to be able to focus at birth. Babies were supposed to SLEEP and only cry when they were hungry or wet. She stared at us when she was born. She didn't sleep. She never slept unless she was nursing. She would NOT take a pacifier. She would NOT take a bottle. And did I mention she didn't sleep? While she was busy not sleeping, she screamed. The doctor said it was colic and gave us some medicine to give her. I spent nearly 2 months eating bland food and she still screamed, so I started eating Mexican food again!

I'd never had a baby. She didn't do what the books said, but when I asked the doctor, he'd say, "Oh, she'll grow out of it." Then we moved to San Antonio when she was 2 1/2. We went to a pediatrician for the first time. Surely THIS doctor would help me understand what was happening. "She'll grow out of it. By the time she's grown, ADHD will be called something different." She was not potty trained. She screamed when I left her at Sunday School. She was doing naughty things that she would be disciplined for, yet she would do it again and again. Nothing seemed to sink in. I finally had enough of doctors telling me this was normal, when I knew good & well by 5, this was not NORMAL.

I did my research and by the grace of God stumbled onto a homeschool online community where I "met" a lady who directed me to this new (to me) type of autism called Asperger Syndrome. Let me back up to when Bethany was 4 mos. old. We were at my parents' house and Bethany was watching everything that happened so intently. She was watching TV when it was on, too. Thankfully, she was finally getting some sleep because I went through with the cry-it-out plan at 3 months. She still woke up throughout the night to nurse, but at least she was sleeping in between! My mom said, "She's like a little savant." Savant is the term that really fits the character from Rainman. That stuck with me. When she was about 3 a friend said, "She's artistic." I asked, "did you say autistic?" NO, ARTISTIC. Obviously, the thoughts of autism had been in my head. She didn't fit the classic autism mold, though. So, when I stumbled onto Asperger Syndrome, I couldn't read enough. I had Phil read this info, too. We knew we'd found a description or our child. We found a doctor to officially diagnose her (though reluctantly, as she thought it could be childhood schizophrenia), and began looking for anything we could do to help her.

That was 6 1/2 years ago. We still see the same behavioral specialist doctor, who, after seeing Bethany 2 years after that original diagnosis said, "She definitely has Asperger Syndrome." She has changed so much, as I posted recently. Some days I stand amazed at how different she is than she used to be. Then we have days like yesterday and today. Days when she is acting like a 6 or 7 year old when relating to other kids. Days when she is misperceiving the intents of others' actions, and responding in anger to them. Days when I have to explain in detail how each action affects another person. Days when I look at her and wonder if she will ever be able to live on her own, have a job, marry, have children, and so much more. She desires to be married and have children when she is an adult. Though, she really doesn't desire to grow up at all! She was quite content being 8, then being 9, then 10, now 11.

She can be a very sweet little girl. She is quite funny! She has us laughing all the time, sometimes intentionally, but often not, and she is happy to be the source of humor, even if non-intentional. When I remember to compare her growth to how SHE used to be, life is good. She has come so far.

But on days like today, when I see other kids her age so far beyond her socially/emotionally (in a good way, mature, not acting older than they should), and when I see how they can't possibly understand her (it's hard enough for adults to understand her), and when I see that the friends she's made and enjoyed playing with don't want to play with her because of many different reasons, and when I see parents able to communicate with their kids her age on such a different playing field, and when I see adults not understanding her, and so much more, on days like this, it is hard. When I see her getting along better with a 6 year old than she does with the 8-11 year olds, it makes me sad. I'm happy she is playing, but I'm sad because I know they think of her as so different. She doesn't understand why they don't want to play the same things she does. Then she gets mad, and alienates herself from them, but doesn't understand she has done this.

On days like this I just have to say, autism stinks.

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