AUTISM: AN ALTERNATIVE LIFESTYLE

Guest post By Victoria Ferrante

Part I: The Early Years

My daughter was born after the stroke of midnight during a violent snowstorm. We almost did not make it to the hospital. A woman driving in the opposite direction lost control of her van on the ice and snow covered road. She skidded into our lane. Our cars came so close, I could see the color of her eyes and the teeth in her gaping mouth. She regained control of her vehicle and swerved back into her own lane milliseconds before we would have had a head-on collision. So, I suppose it would be more appropriate to say we – my husband, my unborn child, and myself – almost did not make it, period. My labor was four weeks early and my daughter was born with a true knot in her umbilical cord, which could have ended her life before it started. Her successful birth was a true miracle. Adrianna’s Apgar was 9. She was beautiful. She was perfectly healthy, or so it appeared.

Adrianna was colicky and did not sleep well, but she met all of her milestones on time through her seventh month. That is when the first ear infection started. Her doctor prescribed amoxicillin. The infection cleared but she came down with another one within the same month. Chronic ear infections and increasingly potent antibiotic treatment spanned the next six months. At age 13 months, a doctor placed tubes in both her ears, “curing” the problem temporarily. During those six months of chronic infections, her development slowed. She stopped smiling. She stopped babbling. Language never came. I attributed it to the ear infections and assumed she would catch up with her peers after her surgery.

She started to walk around the age of 18 months. The average age for walking is between 10-15 months. I was not worried because our pediatrician expressed no concerns and Adrianna became skillful on her feet very quickly. She learned to spin in place with great agility, and would spin frequently and for long periods of time without becoming dizzy.

She did not turn her head when I called her name, but I knew she was not deaf. She loved the music of the rock group, Nirvana. Yes, my toddler preferred rock-n-roll to children’s songs – a fact that amused me and made me proud. Whenever MTV played a Nirvana video, Adrianna would stand in front of the TV and flap her arms. When their song “Heart-shaped Box premiered,” Adrianna ran from another room to hear it. Her ability to recognize Nirvana’s sound amazed me. I thought she was a musical genius.

One day, my brother was watching her spin and he asked me if she was autistic. Autism was still rare back in 1994. I had only a vague notion of what it was from the movie Rain Man. I thought my brother was joking. I laughed and he let the subject drop.

A week later, my sister-in-law came to visit. Adrianna was spinning again and Tammi commented on it. I said, “Yeah, my brother asked me if she was autistic.” The laughter I expected from Tammi never came. Instead, she said, “I have a friend whose four-year-old son was just diagnosed with autism. Adrianna reminds me a lot of him.” Tammi’s words turned my world upside down. Things I never worried about – my daughter’s ability to spin endlessly without becoming dizzy, her obsessive attention to one thing, her lack of language – became frightening concerns.

Our pediatrician believed she was fine. It took four months to convince him to grudgingly make a referral to a specialist. After only twenty minutes of observation, the specialist diagnosed my daughter with classic autism. She counseled us to enroll her in a full-time early intervention program immediately and prescribed speech and occupational therapy five days a week.

Our daughter was just over the age of two at the time, and I believe that if a full-time program existed in our area and if insurance covered the therapies (or we could have afforded to pay for them), she would be more functional today. The earlier you catch and treat autism, the better the outcome for the child. If you believe your child has autism, push for an evaluation. 

Part II: Living with Autism

There are two bad words we avoid using in my household: spontaneity and different. Our life is rigidly scheduled. The slightest change in the schedule can cause my daughter to meltdown. An autistic meltdown is terrifying. For my daughter, it includes screaming, beating her head – sometimes until it bleeds, biting her arms, and lashing out at anyone who gets within an arm’s length of her.

Contrary to popular belief, a meltdown is not a temper tantrum. It is a reaction to stress and being overwhelmed. The child is not trying to control the parents. The autistic meltdown is probably closer in nature to a panic attack. So, we cannot stop it by bribing her or punishing her. Both would aggravate the situation. We have to stand aside and let the panic wind its way down, praying she doesn’t do serious damage to herself. We are thankful that the antipsychotic medication she takes has practically eliminated these meltdowns. There was a time when she was having up to ten of them a day.

Each day of the week has its agenda and we rarely deviate from it. For example, on every Friday after school, I take Adrianna to the library. She has a routine she uncompromisingly follows there. She will drop off her returns and then pick out three new DVDs – never more and never less. She will sit on the floor and page through a children’s foreign language picture dictionary and then children’s cookbook. Then she walk circles around the image of the sun on the throw rug in the toddler play area until I feel dizzy just watching her. When she is done with that, she runs without a hint of a wobble to search a trucking company’s website on one of the computers. Finally, she picks out a music CD for the car and a computer game for home, then we are allowed to check out. We have been doing this for 11 years.

If we have to make a change in the weekly schedule, she needs advance warning. I update the five-week calendar in her bedroom to show any adjustments. If we have a last-minute change – even if it is something she likes to do, such as visiting Aunt Tammi – she will most likely melt down. If someone drops by unexpectedly and it causes an interruption in our daily routine, she will melt down. If we go to one of our usual destinations and something at the location has changed (for example, if the library moved the children’s section to another location in the building or if none of the computers were available at the moment in her routine when she expects to do an Internet search), chances are good she will melt down.

I explained her need for routine to a friend in this way:

“A neurotypical person’s brain is like Silly Putty. If the picture imprinted upon it needs to be altered, you just squish it and copy a different picture onto it to match the changing situation. An autistic person’s brain is like cement. Once an idea wedges its foot down in it, the area hardens into a permanent imprint. Changing it means breaking it with a jackhammer.” 

When my sister-in-law’s mother died a few years ago, I could not attend the funeral. It was held on a Saturday. On Saturdays, we go shopping and to a restaurant. We only had a few days warning of the schedule change. We asked Adrianna if she would attend the funeral with us. The question caused a series of meltdowns and panicked requests for us to repeatedly recite her normal Saturday routine for the next several days. So, my husband went alone, even though I’d known my sister-in-law’s mother for most of my life. She was like an aunt to me. The reason for this choice was that Adrianna’s routine at the restaurant included a visit to the ladies’ room. Tim could not take her in there or bring her to the men’s room, because Adrianna was an older teen. Despite her obvious disability, it would not have been proper.

Her autism has set our lives on a monotonous, unchanging path. It is hard to explain, even to family, why we cannot attend a gathering put together at the last minute or why Adrianna and I often miss these events while my husband and son go. We have asked our family and friends to give us ample warning of any visit and worry that someone who does not know better might just show-up. We wonder if people think we are just making excuses and take our absences personally, or if they think we are trying to hide Adrianna from them due to embarrassment over her autism.

Neither is the case, and particularly not the latter. I could not be prouder of my daughter. She is a beautiful person who has worked hard for everything she has attained. She has a gorgeous smile and an infectious laugh. She is forever a young child inside; one who still believes in Santa Claus, dances and sings with a complete lack of self-consiousness and total abandon, who still wants mommy to tuck her in at night, and sees the world – when she looks - through eyes of wonder. Her childlike nature perpetuates the joy of having a young child and, I believe, a youthfulness in my husband and myself.   

Tim and I love our daughter very much. We are making the best of the hand life has dealt us. We just wish other people understood us and her.

Victoria Ferrante is the mother of two children with autism. Hope is her debut novel. You can find out more about the author and how to purchase her book at http://hopethenovel.com/