A few days ago, I told you about a new book by Anne Moore Burnett, ‘Step Ahead of Autism’ . I was so intrigued by Anne’s writing that I asked her if she would be willing to answer a few questions that I had…and thought all of you might have as well. I do hope you take the time to read this interview. Anne’s answers are very thoughtful and enlightening and I’m certain you’ll be able to take something away from this interview, just as you will her book.
1) One of the biggest things that stuck out with me was your record-keeping. Some parents (myself included) find themselves in the constant whirlwinds before such accurate record-keeping is a thought. What would you say to that parent?
Yes, my mind was in a constant state of chaos as well. I initially wrote things on the back of napkins and on lunch bags but wouldn’t be able to locate my writings at the end of the day. Then one day I was purchasing a pretty floral journal for my niece and decided to buy one for myself, though I didn’t see how I would find the time to ever write in it.
Two days later, Joey had a meltdown after a series of mishaps. When I finally got him to sleep that night, I went into my bedroom, but I was to wound to fall asleep. I began to write down the day’s events in my new journal. When I finished, I felt completely relaxed. It was as if purging on paper took the weight off of my shoulders and put it to rest. After that, it became a nightly ritual for me—one that helped Joey, and calmed me.
Today, I know they offer hand-held observation tools. One I’ve heard of is called AutismTrack™. I haven’t personally tried it out yet but I know it comes highly recommended by groups such as Autism Speaks. It is a powerful, portable data tracking tool for parents of kids with autism. You can easily track any behavior, therapy, medication, diet or supplement. Review the patterns and trends occurring in your home. Here is the link http://www.handholdadaptive.com/order.html.
2) Can you tell us a little about your journey…when was Joey’s diagnosis, where is he now, etc….Joey’s final diagnosis.
Joey received his diagnosis at the age of 2.3 years old. In May, 2012, he will graduate from Brown. He is planning to go on and obtain his PhD in Clinical Research in the field of Neuropsychology.
His diagnosis was severe pervasive development disorder (PDD). When I was doing my research for my book, Step Ahead of Autism, I met with Dr. Karen Levine, Joey’s diagnostic doctor. I asked her if people can “grow-out” of a diagnosis, referring specifically to Joey as he had accomplished so much. Dr. Levine explained to me that autistic children learn (some more efficiently than others), to use strategies in order to “work-around” situations that bring them unease. Joey talks openly about how he has become desensitized to things that use to bring him unease and actual pain. It pained him to walk on sand—today he lifeguards part-time at the local beach.
There are many things that still cause Joey discomfort. He doesn’t like the feel of the hole on either end of elbow macaroni—so he never eats it (and I never serve it!)—and so on.
3) How important do you think keeping the initial journal was?
Every day I read about the benefits of early diagnosis. In 2009 the CDC stated that 2/3, about 70% of autistic children requiring residential care would not have needed such care had they been diagnosed early and been provided with ample early intervention. Studies by the CDC also showed that about one third of parents of children with an autism spectrum disorder (ASD) noticed a problem before their child’s first birthday, and 80% saw problems by 24 months. The median age of earliest ASD diagnosis is between 4.5 and 5.5 years. Yet, for 51–91 percent of children with an ASD, developmental concerns had been recorded before three years of age. Research has shown that a diagnosis of autism at age two can be reliable, valid, and stable. The initial journal provided the substance I needed to solidify my observations and concerns to Joey’s pediatrician. The journals provided Joey with a timely diagnosis and the benefits of early intervention.
4) Do you still have the notebooks? Do you revisit them often (other than for book reference)?
I still have the notebooks and I revisit them now when trying to help other parents and caregivers. My son Mattie, 15, also has challenges, and I ‘compare” notes from time to time when I am trying to get additional services for him.
5) What do you consider to have been your biggest challenge in the past? Now?
My focus with my children is and has always been making them feeling good about themselves and others. I truly believe nurturing positive self-esteem and self-worth within our youth, developmentally challenged or not, should be at the top of every parent’s and caregiver’s list. Healthy self-esteem is essential for success in every area of life. It is one of the most dynamic variables that will influence the outcome of a person’s perceptions and opinions of themselves and of others, as well as feelings, thoughts, interests, and abilities.
For Joey, as he grew more aware of his differences, his self-esteem plummeted. I quickly learned by giving Joey small responsibilities around the house, his self-esteem began to rebuild. Tasks like putting his toys away—though very challenging for me—when finally accomplished, made him feel good that he contributed.
Today, as a single mom and sole custody of my son Mattie, 15, I am constantly looking for ways to build Mattie’s confidence and for him to feel good about himself as a person and young man. It can be very challenging at times as I can’t ‘fill’ the shoes a dad could—but I have learned ways that I can still make a positive difference in his life.
6) What do you consider to be your biggest joy or blessing?
My two sons, Joey and Mattie
7) What is the best resource you have found for staying sane, or coping?
When Joey was 7 years old, I started running. I had never run in high school or college, but I needed a healthy release. It turned out to be my savior and in 2000 I ran the Boston Marathon for Judge Baker’s Children Center in Boston, MA. It felt good to give back. Since then I have run 2 more marathons and 13 half-marathons, all for various causes relating to children.
8 ) What do you want parents and caregivers to come away with from “Step Ahead of Autism”?
I want parents and caregivers to learn to trust themselves and their instincts more. I want them to ‘step-back’ and observe their child when they need to and ‘step-forward’ and advocate for their child when their child needs them.
Parents and caregivers play an enormous role in their child’s outcome. I want them to embrace the power and strength they have within and step into the driver’s seat with a positive attitude and aspiring outlook.
9) Where can readers purchase your book?
10) Will you be working on additional books for the future?
Yes. I am already working on a book about divorce among specials needs families and the steps parents need to take to boost their child’s self-esteem while trying to regain their own.
11) What is the best way for parents / caregivers to contact you?
They can email me at firstname.lastname@example.org. The can also get my latest schedule at www.alleviateautism.com and sign-up for my free newsletter.