I have first-hand knowledge and experience with Autism. I’m not sad about it. Happy isn’t right. I’m indifferent. What kind of person states an indifference to Autism?
My relaxed attitude isn’t about Autism (and the entire spectrum) as a whole, but as parent. As a mother, I can’t relate quality of life to anything other than the fact that my kids have a life. I’ll let the rest of the world foolishly debate the qualityof it. If I were to take that approach, I’d be focusing on everything can’t instead
of everything can. Three of my children (triplets) were an unexpected surprise pregnancy, born at only 29 weeks. I’m grateful for the advances and efforts to prevent prematurity and keep babies alive.
My daughter (Kaitlyn) was diagnosed last week with Autistic Disorder (classic Autism). Other people who love her will probably need time to digest it. Not me. I just knew. I believed her diagnosis was inevitable.
Throughout social media I am well known as 24/7 Modern Mom. The why is something I’ve never discussed. People probably see my branding as an
indication that I’m a super busy mom, like most. They might think I’m just trying to make it through the day, 24/7. I am. That’s not why I chose the name.
My husband and I began our lives together as two. Over time, we had two children. We became four. We thought we were done expanding our crew. In a never-even-imagined instant, we became a family of seven. So I became 24/7 Modern Mom, both literally and figuratively.
Not only is my life blessed in quality, but also in quantity.
Autism didn’t change that.
As of yet, there is not a cure for Autism. There is no concrete answer to where it comes from. There is no blueprint or map that allows us to predict the journey from onset to end. It is a fingerprint. Each case is unique, just like each child. That, we already knew.
Kaitlyn is still Kaitlyn. She is amazing. An evil little “life is over” fairy didn’t swoop down on us when the doctor confirmed my suspicions. That day was a Thursday. On the Wednesday before, undiagnosed, she was the same little girl she was on Tuesday, and the week before that, and the month before that. She’ll never be that poor little girl. She’s just a girl. She’s my girl.
The symptoms within the spectrum can be subtle or terrifyingly obvious. A child might suffer from severe language delay. On the other hand, many of the children diagnosed with Asperger’s syndrome and other spectrum disorders, may not show any delay in language. They might even be advanced. There is said to be an autistic stare, which was obvious in Kaitlyn, along with a severe lack of language and extremely OCD-like behaviors. She has intense sensory integration issues.
I should make it clear that even the things I might call obvious now were not always so. For example, Kaitlyn likes the safety gates to be closed. In fact, she wants everything that should be closed to be closed. She wants everything in order. She is clever and outsmarts me all too often. She likes to fix things. Her body language is bossy. She commands her brothers without the use of words when she decides they are doing something “wrong”. There is no mistaking when she is in charge. She is organized and notices the smallest details. She cleans. She also hugs and smiles and laughs and cries.
She covers her eyes and ears frequently. A flashy visual might not bother her. A loud noise might not phase her. A simple glance in her direction when she’s not feeling it might send her into isolation, and she’s left the building. Although I have always found her and her behaviors to be charming and entertaining, they eventually became alarming. If a parent suspects their child’s behavior to exhibit symptoms of autism, here is what I suggest. Trust your instincts.
However, don’t look for things that aren’t there. Don’t drive yourself crazy thinking something isn’t normal just because it’s different. There is a good chance that the behavior is normal and a necessary part of their development. Don’t panic.
Understand your child’s motivations. This is the most important advice I can give you. Understanding will help you recognize what they are doing out of free-will and what they do instinctively because they have no other defensive skills or reactive techniques. Video tape your child’s concerning play, interactions, and episodes.
If you are still concerned, complete an M-Chat (Modified Checklist for Autism in Toddlers) and score it. Take the completed M-Chat to your pediatrician for a referral to a pediatric developmental specialist and/or pediatric psychology department. Learn about the diagnosis criteria. If your child is diagnosed anywhere within the spectrum, there is a good 100 Day Kit to help you with what’s next.
Kaitlyn and her triplet siblings (Enrique and Andres) are twenty-six-months old now. Her older brothers (Antonio and Pedro) are thirteen and nine. Shortly after Kaitlyn’s diagnosis, both of her triplet brothers were also diagnosed with Autism.
This is life. This is our life. This is our story.
By: Alicia Gonzalez
Editor’s Note: This story was originally published on April 5, 2012.
As a mom of two boys with autism (plus a teenager and an 8 month old), this post really hits home for me. My two with autism are 8 and 13, so at this point I don’t even think of our lives as “weird” until someone comes over and is confused by the alarms on the door, or notices that we don’t have any pictures or artwork hanging up in our living room (my 8 year old HATES stuff hanging on the walls, so we just keep them bare for his comfort).