• Accept and Embrace The Challenge. By acceptance, I do NOT mean loving it. I hate autism for stealing my son’s childhood. But I am not in denial, because denial kept me from walking a path I ultimately needed to walk. Without the challenges that life gives us, how do we find out what we are made of?
• Educate Yourself. We are so lucky today. Think University of Google. Can you imagine pre-internet days? Can you imagine getting all of your information from your pediatrician who went to med school 40 years ago and still believes in Refrigerator Mother Syndrome? Learn everything you can get your hands on – only then can you make choices. Learn the good, the bad, and the ugly. Pulling your head out of the sand empowers you.
• Get Support. One person alone can be tenacious and hardworking, 2 people with the same intention will create power. We all need inspiration and encouragement. You never know what will come out of your support group. One of my favorite quotes is by Margaret Mead: Never doubt that a small group of committed citizens can change the world. In fact it is the only thing that ever has.
• Don’t Compare: Run Your Own Race. The other day I was hearing about how well a friend’s child, who had recovered, was doing. I started throwing myself a pity party. There will always be someone who has a child doing better than yours – and always someone with one who is worse off.  There’s another part to this run your own race thing. Recovering your child is a marathon, not a sprint – pace yourself accordingly. You may need more water stops than your friend who is running with you.  Sometimes we get burned out.  It’s ok. You can always get back on the track.
• Shore Up Spiritually. One sustaining force that can give us comfort and courage is our spirituality. It doesn’t have to be found in a church or a synagogue, it can be whatever belief system, ritual, or philosophy that speaks to your soul. If I had not had my church, Prince of Peace, in the early days of my struggle, I don’t know how I could have survived it. It’s watching Bill pick up his 13-year -old daughter, Theodora, who has CP, out of the wheelchair and take her to receive communion where I find God more often than in the sermon.
• Recognize Your Gifts and Abilities. Don’t tell me you don’t have a talent. Everyone does. Learn to use it and be proud of it. If you don’t know what yours is, ask the people who love you – they will tell you. Mark Twain said “We are always more anxious to be distinguished for a talent which we do not possess than to be praised for the fifteen we do possess.”
• Live in Gratitude/Give Back. The more I have given, the more I receive. And the more grateful I am about the gifts I have, the more generous my spirit becomes. Giving to others is the most powerful thing we can do for ourselves.
• State Your Intention. Live in a state of KNOWING your child will get better. Live in a state of KNOWING that you will accomplish whatever it is you want to accomplish. Put it out there! I keep a post-it on my desk with my intentions. Helping my child was number 1. Guiding and inspiring other families is number 2.
• Trust Your Intuition. No One, and I mean No One, knows what is better for your child than you. And intuition works in so many ways. Learn to listen to that inner voice. It will never steer you wrong.
• Live in the Moment/Laugh/Love Thyself. Don’t miss your child’s childhood or your own life. Laugh as much as you can. And love yourself, and others will love you. Passion goes a long way.

Our home life is in shatters. My husband and I desperately search for answers to help our 3-year-old autistic son. One day I open the newspaper and see a conference advertised in the area called DAN – Defeat Autism Now. One of the first presenters is a beautiful woman named Dr. Doreen Granpeesheh, lecturing on Applied Behavior Analysis, or ABA, the behavior therapy that was improving the lives of children with autism and sometimes even recovering them. Another brilliant doctor, Andrew Levinson, spoke about biomedical treatments.  I call my husband from the conference – so excited – and tell him I have met people who can genuinely help our son.  And I understand that autism is an illness with environmental triggers and that any child can be dramatically improved.

And my life is changed. Because even though we have a late start, we now have hope.  And within several weeks of starting the Gluten-free, Casein-free (GF/CF) diet, our son’s language begins to improve dramatically. It will be almost a year before we can get him into an ABA program of 30 hours a week, but once we start that, we see more improvements.

So I got the answer to the first part of the question in my prayer, where I asked God “Tell me what has happened to my child and HOW I CAN HELP HIM?”

It wasn’t long after that day that I received a postcard in the mail asking people to host a backyard fundraiser or a small barbeque to raise money for children with autism who could not afford or access treatment. And that was when I got the second answer to the second question of my prayer “Just tell me what is wrong with my son and how to help him and I will do anything you need me to do.” “ I knew I needed to help other kids less fortunate than mine.  I saw that I could be the answer to someone else’s prayer.

So I did what I knew how to do, I rolled up my sleeves and started producing.  This time it was a fundraiser instead of a TV show. I threw a party in my backyard, with a silent auction and entertainment, called it Denim and Diamonds for Autism and it raised about $30,000 for ACT Today!. A short time later I joined the board, and 4 years ago, I became executive director. Today, we have given just under one million dollars in grants to families challenged by autism.

My Disability became an Opportunity to do something greater and more rewarding than I could ever imagine.  And now I get to share that journey with other families.

Next: The Steps to Empowerment

Wyatt’s pre-school suggests private speech lessons, which he begins 2 times a week, and I am grateful they don’t mention autism. When my next-door neighbor tells me she sees signs of autism in him a few weeks before he turns 3, I am furious. My call to the pediatrician allays my fears again, as he calls autism “latest trendy disorder of soccer moms’ kids.”  But when he examines him a week later, he pronounces Wyatt “at least a year delayed.” Finally, we receive an evaluation from the school district and a diagnosis of PDD-NOS (pervasive developmental disorder, or “autism light”). A few months later, the California State Regional Center diagnoses him with moderate autism. By now Wyatt is 4 and is placed in a pre-school where they blend typical children with children on the spectrum. I think my problems are over but Wyatt continues to get worse. I have no idea that the ratio of teachers to children provides a fraction of the behavior therapy he needs. I turn my home office into Autism Central, learning all I can, staggering into bed at night, telling my husband “If it’s this hard for us, what’s it like for the single mother with several kids, maybe 2 on the spectrum?”

During Wyatt’s third year, I kept an occasional diary, and found this entry:

Wyatt’s tantrums are getting worse.  Violent tantrums leaving me sick with fear and confusion. I feel like a battered wife, I don’t want to admit that there’s a monster in the house. Not a grown man, but my two and half year old son. Like a domestic violence victim, I hide the telltale signs. I’ve been covering up the scratches and bite marks with make-up. He keeps breaking things but I sweep them away and throw them in the trash. My friend Dana told me that her son Michael behaved so badly between two and three that they nicknamed him “Damien”. One solution that snapped him out of his tantrums was squirting him in the face with a water bottle. It sounded cruel, but I was desperate.

I don’t remember what set Wyatt off the other day when I decided to use the water bottle. I squirted him in the face. He just became more enraged. He runs through the house, grabbing objects off tables, smashing them to the floor. Then he runs for the front door. He almost ran straight into a car a few weeks ago, so I was petrified and I grab him before he can open it and drag him across the room. He starts flailing his arms, pulling my hair and scratching my chest. His strength was astounding for such a small child. I pull him into my lap, get his hands under control then he head butts me and bites my shoulders. “Stop it! Stop it! Stop it!” I scream, burning my lungs. Wyatt wails like a hurt animal. I wonder if the neighbors hear us. I’m hyperventilating, but I hold on to him. When he finally calms down, we’re soaked with water, tears, and blood. Scratch marks and bites cover my arms and chest, my shirt is torn. Wyatt had bitten his own arms till they bled. Why has my dream of having a baby to love, turned into such a nightmare? After he calmed down, I sat on the floor of the living room, crying, rocking Wyatt in my arms, and prayed.  God, if you help me find out what this thing is that has taken my child and help him, I swear I will do anything you need me to do. Just give me the answers. The answer was autism.

Next: Answered Prayers

But denial does not ultimately serve us well. It may keep the pain of truth away for a period of time, but it only serves to make the truth harder to bear once we face it. The most dangerous aspect of denial is that it keeps us from moving forward on a journey that we must ultimately take. I knew something was wrong with my son. But having nothing to compare the experience of raising a toddler, being a first time mother at 46, I did not fully grasp the extent of the problem.  And no one – the pre-school teachers and administrators, his pediatrician, other mothers of toddlers around me – ever mentioned the A word. Autism was a topic I had covered once on daytime talk shows that I had produced. I remember the panel was made up of mothers who believed that vaccines had triggered autism in their children. Little did I know that one day I would be one of those mothers, struggling to raise a child with autism.

The first year of my son Wyatt’s life was blissful. He met all the developmental markers. He walked and talked several months ahead of the other babies. He was literally running so fast at a year that he was moved up in his “Gymboree – Mommy and Me” playgroup. Then between 1 and 2 years of age it all changed. After my son had several vaccines at 13 months, including the MMR vaccine, he had a very high fever. Shortly after that the baby boy that we knew began to disappear. Do I believe that vaccines cause autism? No, I do not. What I do believe, and what I have learned from some of the leading doctors and scientists working in the field of this complex disorder, is that environmental factors, including toxins, pollutants, and drugs, and yes, vaccines, can TRIGGER the neurological condition of autism, often in combination with a genetic pre-disposition or a compromised immune system.

I was to learn all this later, after my son turned three. But first I was to spend two years in hell. Two years of my life and my son’s life that could have been different, if only someone had grabbed me by the shoulders and had the guts or the knowledge to tell me my son had autism. The change that happened was gradual, which makes it harder to grasp. At around 2, I noticed he had completely lost the flow of words that had seemed to come so effortlessly at 1. My call to the pediatrician was met with “Boys often have delayed language, we’ll wait and see.”

So between 2 and 3 years of age, I put him in private speech sessions.  But his language barely improved. And his behaviors got worse. The tantrums started happening. Then he put his head through our kitchen window. Twice.

My call to the pediatrician was met with “Sometimes children bang their heads when they are frustrated by not being able to talk.” Of course, I was relieved with the response. And in fairness to my pediatrician, I always downplayed the severity of the tantrums. Having grown up with a brother with Down syndrome, the last thing I wanted was to have a life like the one my mother had. In my mind, she had sacrificed her own life for the life of a child. And in my mind, it had almost destroyed her.

Things weren’t so bad. Maybe it was the terrible twos after all.

Next: The worse is yet to come…

Autism is my world. I am the mother of a 10-year-old son with autism, and the Executive Director of a national non-profit, ACT Today! (Autism Care and Treatment Today!).  Autism probably affects your world too, because chances are you know someone with autism, or you may be worried that your child may develop autism. The facts are staggering. According to the Center for Disease Control and Prevention (CDP), 1 out of 110 children in America is diagnosed with an Autism spectrum disorder (ASD), making ASD more prevalent than juvenile diabetes, childhood cancer and pediatric AIDS combined. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal/nonverbal communication and repetitive behaviors.

My mission is providing funding and support to families that cannot afford the treatments their children with autism need to reach their full potential, as well as helping my son Wyatt reach his.  My purpose is to empower parents of all children with lessons that I have learned along the way.

Life is mysterious enough when you are first thrown into parenthood, but even more so when you are faced with the neurological disorder of autism. That is because autism is mysterious on so many levels –from what causes it, to the varying degrees on the spectrum it manifests, to the methods used to treat it. When you suspect your child has autism, you feel like you have landed in the middle of a foreign country where the language, customs, and bureaucracy are all strange, with no guidebook to follow. I felt so alone having to navigate that journey with absolutely no experience. I felt downright terrified.

Getting the diagnosis is the first leg of the trip, and of the multitudes of parents with a child with autism I have spoken to, I can count on two hands the ones who received an accurate diagnosis for their child at an early age.  My son was one of those who did not. He had many signs of autism and could have been easily diagnosed at 2, but he was not correctly diagnosed until the age of 4.  Equally discouraging is the fact that once families receive an accurate diagnosis, they are often not told about treatments that can lead to remarkable improvement, even recovery, if given early and intensively enough.  Too often, we have to find out answers the hard way, and lose valuable time that could have been spent improving the lives of our children.  That was what happened in our case — my son did not get these treatments until he was 5.

Important Lesson. Trust Your Intuition. If your child shows signs of developmental delay, research the signs of autism and if your child displays any of them, schedule an assessment.  Then learn about proven treatments, such as ABA (Applied Behavior Analysis) therapy, that can improve the lives of children with autism, and in many cases, recover them. Get as much as possible as soon as possible.

NEXT… more of my personal journey with autism.