My Journey with Joseph (transcript of my speech)

I am the mommy of a bright and beautiful 5 year old boy.

Conjures up images of making peanut butter sandwiches and putting band aids over injured knees, doesn't it?

Well, that is the kind of mommy I am. But in the last few years, motherhood for me has taken a turn that is very different from what most mommies face.

You see, for the last few years, I have been battling – furiously! -- to save my child's life.

Joseph arrived the way most children arrive. He said his first word, "duck," about the same age most children say their first word. He took his first steps, at the home of a friend, at about the age that most children take their first steps.

But as Joseph neared the age of 2, something started to change for him. He began to lose interest in his toys and his books. His communication diminished to the very basics. When we took him out, particularly to "fun" gatherings with lots of other kids, he would scream and scream at the top of his lungs. The only way to calm him down was to bring him home.

Blue Eyes and I were scared. Joseph was our only kid. We didn't know what was normal and what wasn't, but we felt that something was wrong. We didn't know who to turn to or what to do.

Shortly after Joseph turned 2, a psychiatrist at the prestigious MIND Institute gave us a diagnosis: mild autism. It felt like a death sentence.

Indeed, they say that getting this diagnosis is second, in pain and grief, only to hearing that one's child has a terminal illness. In many ways, it felt like a death. The child we knew was leaving us, slipping behind a veil that we couldn't reach through. Our hopes, desires and expectations were all murdered with that single word: autism.

Many children on the autistic spectrum have what are called co-occurring disorders. Joseph's was that he didn't sleep well. He'd wake up 2, 3, 4 times a night and be awake sometimes for hours at a time. This meant that, pre-diagnosis, I was already a walking zombie. After the diagnosis I would wake when Joseph did but would wake myself up as well – this time with a huge gasp, as I realized yet again that my son had autism, and I didn't know what to do.

We live in a wonderful community. There is a department here called Infant Program which works with children from the ages of 0-3. They rallied around us, and every weekday someone came to play with Joseph, to work with him. Together, slowly, we managed to reel him back from the dangerous precipice he was sliding down. We got a little more eye contact, a little more engagement. Whereas before we'd been feeling only despair, we now started to feel a little bit of hope.

We began to research, to explore, to ask questions. We tried several behavioral therapies and chose one, Relationship Development Intervention, that we love and still use on a daily basis.

As we continued to investigate, we learned something that has made a huge impact in our journey with Joseph.

We discovered that, whereas most doctors know nothing about autism and will tell you it can't be treated physiologically, a small percentage is now stepping forward to say something completely different.

These doctors are saying that, almost across the board, children with ASD have similar physiological symptoms: severe gut disorders, significant levels of heavy metals in their systems, and major food allergies.

If you look at only the food allergies, you see that these kids crave what they are allergic to: the gluten in wheat and other grains, and the casein in dairy products. These foods create an opiate-like reaction in their brains – it zones them out. Isn't that one of the major components of autism?

By the time Joseph was 3, he was completely off all gluten and casein, and he remains so to this day. We found one of these specialist doctors. She was 3.5 hours away. We made the trek to see her often. She charges $350 an hour, and on top of that there are the lab tests, the supplements, the medicines, and all the other treatments she wanted us to try. We took out a second mortgage in order to afford this.

We are not alone in this. All families with autism face the pain of the diagnosis, the grief of their child slipping away, the horror of the co-occurring disorders and, should they choose to go this route, the incredible financial stress of affording these doctors and the leading-edge treatments…which, by the way, insurance virtually does not cover.

Joseph is now 5½. He has made great strides. For one thing, he generally sleeps through the night. It's amazing how well you can sleep when your stomach doesn't hurt.

He goes to a typical preschool, where he is the only child with autism. Visiting teachers come and can't pick him out. In many ways, he is indistinguishable from his peers. He plays tag, hide and seek, and imaginary games with his friends. When I come to pick him up, he runs to me with a happy "I love you, Mommy!" smile that no parent of an autistic child will ever take for granted.

I would like you to know that autism will affect your life. It is an epidemic. 1 in every 150 children is now diagnosed with ASD – 1 in every 95 boys.

Many families with autism are just trying to survive on a daily basis: It's that hard. Because Joseph has come so far, I have been able to step forward to be a mentor for parents with newly-diagnosed children.I am not the only one. There is a growing movement of parents who have significantly recovered their children, and they are reaching out to other parents.

So when your friend or relative confides in you that they are dealing with an autistic child, please give them hope. Tell them to find these parents and these doctors, to explore what they've done and to see what might work for their child. Tell them to start right away, and tell them that there is much that can be done. There are many reasons to hope.

I'd like to close with these words from Emily Dickinson. They are about hope. They have been on my office wall for 3 ½ years, and they have helped me through some very dark times.

I dedicate them to my son, Joseph, who has been such a trooper through all of this.

Hope is the thing with feathers
That perches in the soul
And sings the tune
Without the words
And never stops – at all.