Our Mysterious Journey Begins

Two weeks ago, we learned our two-and-a-half-year-old son Jude is on the Autism Spectrum. We had little idea of what autism even was but it sounded scary.

The image that came to my mind, at least, was of a non-verbal child rocking back and forth with a glazed look in their eyes. I think I had seen that in a movie long ago and it stuck with me, for some reason.

But that's not Jude.

Our little red-headed boy is affectionate and loves giving people hugs. Nothing is more fun for him than getting into a pillow fight, playing peek-a-boo, or getting tickled by me. His laugh is as infectious as his big smile. He is obsessed with trains, especially Thomas the Tank Engine. Several times a day we'll play the “I’m going to eat you up” game in which I pretend to eat his ears, fingers, tummy, toes. He’ll giggle like crazy and tell me unconvincingly “stop!”

It's one of his few words.

I remember our pediatrician saying he was an unusually sociable baby – at three months old. But I already knew that. I remember thinking that for a tiny little thing he had a pretty good sense of humor. We made each other laugh and I said to myself: this kid is smart.

My favorite part of the day is our morning snuggle session. I can sense the second he wakes up and I immediately break out into a smile as he toddles over from his room and climbs into our bed. I want him to always know that I am absolutely thrilled to see him in the morning – even if I’m exhausted because he had already woken up just a few hours before in the middle of the night, wide awake and ready to play. He'll be bouncing around at 3 a.m. while in my sleep-induced stupor I try to figure out what is going on and why is this child trying to hug and kiss me. Why can't he just settle down?

So it's not all fun and games.

Looking back, lots of things that we’ve experienced are just now starting to make sense. Jude can only say a handful of words but he understands everything that we say and in two languages, English and Portuguese. My mother speaks to him in Portuguese only.

What we thought was cute and quirky is a characteristic of autism. He likes to line up and stack his toys and trucks. He gets frustrated when they don't line up or stack just right. And speaking of, when he doesn't get his way, watch out! His temper tantrums are beyond what a “normal” two-year old exhibits. I know this. I have two teenagers and they were not even close to being this, er, exuberant.

Early on, daycare teachers would report behavioral issues. He once shoved a pregnant mother in the stomach – hard. He’s injured other children his age. I would worry the daycare he attends would kick him out. Can you imagine your kid getting kicked out of DAYCARE?

He also seems to have a penchant for taking his anger out on daddy if his demands aren’t met right away. It seems like Ed, my boyfriend, gets “attacked” on a daily basis. Jude will fling off his eyeglasses and start slapping and pummeling his face. It's tough to witness but we try to calm him down with patience and lots of love. Yesterday, from the back seat of my car, he threw a small toy train and it struck my arm. Thankfully, I wasn't moving but if I had it might've caused me to suddenly react.

Since he likes to throw ALL things, including food, we have to clear off half the dining room table for him to eat. I have two teenagers, one who lives with us, and it’s tough having any kind of quality conversation with Jude in our midst.

Jude also has had trouble falling asleep since day one. I nursed him for more than two years so we co-slept. When we tried to wean him and help him make the transition into his own bed, it was impossible and we couldn’t bear the hours of crying.

I took some advice I found in a Dr. Sears book. It will sound crazy but it has helped. And we've been doing it for months. Each night, Ed and I take turns lying next to Jude’s bed as the little boy restlessly tosses and turns himself to sleep. By the time he falls asleep, we're usually out too. I’ve been known to actually crash in the middle of tweeting on my iPhone. You've probably guessed. This is my night off.

And because we’re not spring chickens, we wake up with sore backs. You also might've guessed that Ed and I end up spending very little time with one another. On some days, I think it's a small miracle that we are still together after all that we've been through - with Jude and otherwise.

Many times, leaving the house in the mornings is a challenge because of Jude’s tantrums. Heck, most everything, i.e. cooking dinner, cleaning up around the house, taking a walk, going to the mall, giving him a bath, having a conversation with others, is challenging.

We've learned to adapt to many of his behaviors. There is no question that the wonderful and good and sweet in Jude FAR outweighs the challenging. This boy is the light of our lives and at this point we are hoping with all of our heart and soul that he is high on the spectrum and high-functioning.

We are grateful he’s already started therapy and is getting the help he needs. We are simultaneously sad and happy. I've despaired already that Jude may never have relationships, get married or live independently. Concerned that he may never really talk. Already pissed that he might experience bullying in school. Many autistic kids do, from what I’ve read. I’ve been down the bullying path before with my daughter, now 18. Let’s just say I’m not the kind of mother you’d want to tangle with.

In regards to his diagnosis, we’re happy we “caught” this fairly early but it could’ve happened earlier. Why are there no signs about what to look for in pediatrician’s offices? It seems like it's a public awareness campaign waiting to happen.

Either way, we were not prepared to hear the words: Jude shows red flags for autism. Then, two weeks later, Jude is on the autism spectrum.

When I told my older son Richard that his little brother has autism, he instantly made a judgment about the kind of kid that Jude would grow up to be. He was going to be one of those special ed kids. He challenged the notion that his little baby brother would ever be normal and do the things that he likes to do. Without knowing anything, I countered with, “Not true. You’ll see.” I then ran to the computer and began researching "autism and skateboarding, snowboarding and surfing." I learned that, indeed, autistic kids can surf, snowboard and skate.

That gives me lots of hope.

On November 13, 2010, we are going to walk for Jude and all kids who have autism during the Walk Now for Autism Speaks event at Anaheim Stadium. Please consider supporting us by walking with us or donating.

By participating in this event, you are helping to change the future for all who struggle with autism. By walking, you are getting us one step closer to finding what causes autism, how to prevent and treat it, and ultimately a cure so no family ever hears those words again.

Until then, we walk to find answers and raise awareness about the devastating toll that autism has had on families like ours.

I need you to help make tomorrow be about snowboarding lessons, school lunches and first words rather than therapy, doctor appointments and despair. Together, we will find the missing pieces for children like Jude.

My goal for Jude is that he gets off the autism spectrum completely. Maybe I'm still in denial. Who knows? Regardless, I know I will keep telling him that he can still be whatever he wants to be in life.

Go Jude!