I originally wrote this article about 3 years ago, hoping to get it published in a magazine. It has since been rejected by at least a dozen autism and general parenting periodicals. Maybe it will do the most good posted here. Anyway, the intended audience is the parent who has just recently learned that their child has autism.
Like all new mothers, I was sure that my perfect baby boy was adorable, sweet, and certainly very smart! But by the time he was 18 months old, my husband and I were getting very worried about him and his development. He had not yet spoken a word, and he neglected most of his toys, choosing to pass his time by repeatedly opening and closing the bathroom door. When he was diagnosed with autism in November of 2006, I felt an enormous range of emotions – sad, angry, frustrated, worried, scared, confused, jealous, and nauseous, just to name a few. I was also pregnant with my second child at the time, so I am certain that my raging hormones were only making me feel worse. But the word that best describes how I felt was overwhelmed. Of course, I wanted to do everything possible to help my child, but there are so many different treatment options for autism out there. If you simply do an internet search for “autism,” the volume of information you will find is enough to make any well-intentioned Mommy or Daddy feel dizzy trying to sort it all out. There is so much to do. What do you do first?
Looking back on where my journey has taken me so far, I can now identify the three things that helped my son the most in those initial months. Because I wanted to help him as quickly as possible, I remember wanting to try everything that I read about in that early stage. Thankfully, I had some smart people working with my son from the start who encouraged me to slow down and be realistic. It is very important to only try one new thing at a time. It can take weeks or even months to determine if a treatment is working, and if you introduce a dozen new things into your child’s life at once, you will probably make his or her little head explode! I am no expert on autism or child development – I am just a Mom. But here are the first three things that I recommend you do when you learn your child has autism:
1 – Read about autism.
The more you learn about autism, the more confident you will feel about the decisions you make for your child. But even this one suggestion can seem overwhelming. There are more books, journals, and websites on autism than you can shake your proverbial stick at. You cannot possibly read them all. There is a lot of great information out there, but a lot of misinformation as well. Be wary of the internet in the early months, because it is often difficult to determine if the information on an unfamiliar website is accurate. For your first read, I recommend one of the following books: Let Me Hear Your Voice: A Family’s Triumph Over Autism by Catherine Maurice (Ballantine Books) or Overcoming Autism: Finding the Answers, Strategies, and Hope That Can Transform a Child’s Life by Lynn Kern Koegel, Ph. D. and Claire LaZebnik (Penguin Books). Both of these books contain positive and uplifting stories of children who learn to shed the symptoms of autism through hard work and persistence. Both books also champion the benefits of ABA Therapy, which leads me to suggestion Number 2:
2 – Get ABA Therapy for your child.
Once you get immersed in the world of special education, you will learn all sorts of new acronyms! ABA stands for Applied Behavioral Analysis, and is a widely-used, scientifically-proven treatment option for autism. The fundamental principle of ABA is to shape behavior by breaking down each new skill into the most basic of steps, and then teaching each step to the child, using a system of frequent rewards for motivation. The process is tedious – but it works. ABA Therapy can be done in a school setting, in the home, or in a therapist’s office. My son is lucky enough to have received a combination of all three.
Unfortunately, you cannot just walk into a therapist’s office and say, “My child needs ABA. Can you start tomorrow?” Setting up services takes time, and can be incredibly frustrating. But do not give up – it is definitely worth it. Four months passed between my son’s diagnosis and his first ABA session, and they felt like the longest four months of my life. First, I had to go through the complicated process of figuring out exactly what my insurance covered. Then, I had to find a therapist with availability. I got put on a number of waiting lists before I found someone who I liked and had space for my son. Next, the therapist had to do a number of assessments on my son before he could develop a program that was appropriately tailored for him. Because my little boy was non-verbal, very non-compliant, and had lots of tantrums at this stage in his life, I remember having to return to the office on three separate occasions before the assessments were completed. Let me remind you that I was pregnant throughout all of this! I remember the therapist joking that he was going to make me my own copy of the office restroom key since I was constantly borrowing his. Just thinking about it now makes me tired, because it was such a difficult time. But once therapy got started, we began to see positive results very quickly.
As I stated earlier, there are an endless number of treatment options available for children with autism. Some may seem normal, and some may seem downright wacky or even dangerous. Some may promise you a “miracle cure,” and I am sorry to say there are not any miracle cures out there – at least not yet. However, do not be discouraged from trying different treatments, as long as you are sure they are safe for your child. I once read that autistic people are like snowflakes – no two are alike, and therefore the same treatment will probably not have the same effect on each individual. By all means, try new things! And if you find something that helps your child, then good for you. But try new things in addition to ABA Therapy, not instead of ABA Therapy. ABA should be the cornerstone of your child’s treatment plan, because it really does work. And lastly, only implement one new treatment or therapy at a time, because that is the only way you will be able to tell how well it is really working.
Step Number 3 is the easiest of all:
3 – Show your child Baby BumbleBee DVDs.
I promise that I am not getting paid by the Baby BumbleBee Company to endorse their product. I am just a huge fan. Watching these shows not only got my son talking, but it got him excited about talking! I will never forget the day that my little boy was watching a DVD in the den, and in the middle of the show, he ran to me in the kitchen as fast as his little legs could carry him. He looked me right in the eye and shouted “Hippo!” with more enthusiasm than I had ever seen in his face before. After sharing his new word with me, he immediately ran back to the den to catch the next word. Since I had wondered for many, many months if my son would ever learn to speak, “Hippo” became my new favorite word. Start with the Bee Smart Baby Vocabulary Builder. There are 5 volumes, so that should be enough to get you going.
If the cost of the DVDs is more than you want to invest at first, check to see if your local library has them, or try to pick up used copies online or at consignment sales. I do not think you will be disappointed.
My son’s treatment has not stopped with these three steps. I am still reading, still trying to find new methods and ideas to help him, and am still working with him daily on a variety of skills. We have faced many challenges together, and I’m sure there are still many more challenges ahead. Learning that you have a special needs child is hard. But if you find yourself starting out on this journey, I hope that focusing on these three things will help you feel less overwhelmed than I did when I started. Then you can feel a bit calmer, more focused and more informed while you figure out what to do next.