I just finished reading Step Ahead of Autism by Anne Moore Burnett. I have to say this is one of the most inspiring and practical Autism books I have ever had the pleasure of diving into.
As a researcher by nature, most of the books in my library discuss the biology involved in sensory integration dysfunction, the nutritional and behavioral repercussions of certain food sensitivities, and the implied neuroscience behind certain brain function as it relates to Autism. Anne’s story is a refreshing and honest tale of her journey with her son Joey, who was diagnosed at the severe end of the Autism Spectrum at age two and went on to become a successful college student.
Most of my books require hours of focus, references, and frequent sanity breaks. Step Ahead of Autism was such a flowing and effortless read; parts of the author’s journey and emotional roller coaster mimicked my exact experiences and I relived some of those feelings. But the real magic in the book is the way it is broken down into ten practical steps with exercises, techniques and tips that can instantly be put into practice. Many of the ideas are of course pertaining to making the best choices for your child, but the real inspiration is the transformation we make within ourselves – shifting our intentions, beliefs, attitudes and reactions to the diagnosis and the choices we face each day.
That being said, there is so much amazing information in this book that I will be only discussing the highlights of the first five steps in this post – Part II will be posted next week.
I really resonated with the discussion in the beginning of the book of what happens to us as parents once our child receives an official diagnosis of Autism or a developmental disorder in general. Denial, anger, and confusion are expected, but the choice is ultimately ours to wallow in a pity party of “why me” or become an advocate. I love how she says, “You can turn the denial into determination, the anger into energy, and the ‘why me’ into ‘watch me’. I know. I did, and I will show you how to do the same.”
She further states it is time to leave the “Why does autism occur” to the researchers and to move forward. YES!
This book is more about the changes we must make in ourselves and the skills we need to develop rather than trying to change the behaviors in our child. Quite a fresh perspective!
In each step Anne shares a part of her story and then turns her experience into practical tips and exercises for us to practice immediately.
Step one is TRUST. We must learn to quiet the noise of our daily lives and really reflect and pay attention – we know our child best and we must trust and explore creative solutions and limitless possibilities. She says it best that we tend to “fall into a trap of reacting to life and coping with what happens instead of actively creating a life that’s right for us.” I know this in my heart but I need daily reminders! Especially with a To-Do list that on some days seems longer than Santa’s “nice” list!
Step two is OBSERVE. The author suggests creating a timeline of your child’s behaviors with dates that you can then take to doctor visits and eventually evaluations. This will serve as the framework and ease the intake process when specialists, therapists, and other providers are to be seen.
As she shares her experience of receiving her son’s diagnosis in this chapter, I relived the road that led me to my child’s, which was much later than age two. I remember distinctly the signs and red flags; yet everyone had a strong opinion about what was going on. Half of my family and friends said things like, “He’s just being a boy! He’s got a lot of energy! Oh, my brother was the same way – he just needed to bounce on the trampoline before dinner – no biggie!” The other half came right out and said, “I think something’s wrong with your kid.”
Neither reaction sat right with me: the first lot telling me there is nothing wrong while I was clearly struggling with day-to-day routines and public outings, and of course no parent wants to hear that there is “something wrong”. Yet receiving the diagnosis had such a finality to it, and it definitely hit me like a Mack truck just like the author shares in her experience.
One of the exercises in this section is to simply unplug from the electronic world and be in the now with your child. Focus and concentrate on everything they are saying and doing with you. I recommend that for everyone, not just your child!
Also included is a thorough prescreening checklist. I really wish I had this before my son was five!
Step three is ACCEPT. Grieving is necessary – it is natural to mourn your child’s diagnosis and eventually let it arm you with a sense of new confidence. Unfortunately, many parents are stuck in permanent grief, as if an Autism diagnosis is a life sentence. We must accept the challenge as an opportunity to realize and grow our capabilities as parents. By focusing on what’s right more than what’s wrong we can empower ourselves and inspire others, as the author has done with this book.
Step four is ASCERTAIN. I did not have the gift of early intervention, but that’s ok. My son experienced several misdiagnoses before we arrived at the true picture. My journey and desire to learn more about my child rather than go with the first explanation and suggested treatment made me who I am today.
This chapter does provide a strong argument for making early diagnosis and intervention the primary goals of every parent, pediatrician, educator, and caregiver. She also offers clarity on what you should look for in the assessments you may schedule for your child, and also some classroom concerns to gather when starting to develop a needs assessment.
Step five is ADAPT. This is a biggie. We may be called upon to make big changes for the sake of our child, as the author did when it came to relocating. I love how she discussed her resistance to change, but said, “Joey needed us to move him forward as quickly and as responsibly as we could, to take full ownership of his welfare.”
This is not a job for weenies, I KNOW we all know this! In my experience we, the parents of special needs children, are a lot stronger than we thought we were. The key is to adapt, which the dictionary defines as, “to put oneself in harmony with changed circumstances.” ‘Nuff said
I hope Part I of this review has sparked your interest about things you can do to ensure the best possible outcome for your child. Even though I live Law of Attraction and carry a positive attitude in my pocket (which I sometimes forget to take out when I’m overwhelmed!), Anne’s story has helped me go easier on myself and take a step back. I have a lot more power than I thought and I hope you know that you do, too!
Tune in next week for Part II…