Sunday, February 12, 2012


In the past few weeks I have been reliving a time in our life that was traumatic and beautiful at the same time. I have been talking to a mom with a newly diagnosed little man. I hope what we have already lived through helps her and her family...if for nothing more than to see that you can get through it and it will be okay. What most people don't understand is that I love this mom, because I was her...once upon a time.

Talking to her has taken me back to a family vacation in Yellowstone in 2002. First, it was scary...taking a toddler to Yellowstone,  The Land of Boiling Pits...a toddler who was completely obsessed with water...ANY type of water. And a toddler who would bolt away from you at any point and time. A toddler who knew no fear, pain or danger. You see when we got back from that family vacation, everything was going to change. We had an appointment with a developmental pediatrician to see what was "wrong" with our little man. But I already knew what was wrong...He had autism. And I was scared.

We always knew something was wrong with our little man, even while we were pregnant. He never moved in utero...never. So little that when he did move, it literally startled me when he did move. We had numerous tests, sonograms, etc...but nothing ever showed up. The night before we were scheduled to go in to be induced,  I had a horrible headache and I was already almost 2 weeks over due (FYI...I ALWAYS go 2 weeks overdue! UGH!), so we called the doctor and she had us go in to the ER. We got there, they hooked me up to the monitor and he was showing minor signs of fetal distress. I laid there for what seemed like hours and a doctor finally came in and told me I was free to go, even though we had one particular doctor that wanted to take him right them. I kept asking if they were sure, but they shooed us home. The next morning we went in, got all hooked up and started the induction....a few hours later after pushing for less than an hour, our first son was born...born blue and not breathing. I laid there staring at the doctor that had been my childhood doctor, a woman whose children I had babysat and  later worked for her at her doctors office...and she was begging my son to breathe. All that I remember from his birth are the words "Breathe, little buddy, please BREATHE!" He had been born with the cord around his neck. He should have been taken the night before. But he wasn't.

Well, obviously he did breathe eventually and seemed to be a very healthy, happy baby. He never cried, didn't really need to be held, absolutely loved staring at lights and slept ALL night. He also had the most ginormous head I had ever seen...earning him the nick name Charlie Brown. Sorry, we have a wicked sense of humor.  All of this was a  huge difference from his big sister who was the complete, polar opposite! We thought we had hit the lottery! He was such a good baby! His sister was super high maintenance and still is and we were honestly worn out! But there was stuff... like he never startled. Ever. Not even when we would bang pots or drop books on the floor. He also would not turn towards your voice or make baby noises. We were sure he was deaf. He showed no signs of realizing we were even there. So tests, tests and more tests and he was fine. NOTHING was wrong. He is just a really good baby.

12 months...NO speech, NO recognition of a familiar face, NO needing to be held or comforted, NO babble-y baby noises, NO reaching for mommy, NO happy smile when daddy got home from work. More doctor visits...he's fine. You have a very happy baby with a big sister (who was talking full sentences at 9 months!) that  talks for him.

18 months...NO speech and acting honestly, like a little cave man...grunting, biting, screaming, rolling around on the floor, freaking out over textures and sounds and smells and things we had no clue about why they were  setting him off. MORE doctor visits  (and lots of Internet research that was clearly pointing to autism, although no one would listen) and again, NOTHING. Sure he's a little behind, but he'll catch up. Stop reading the Internet and over-reacting. Children with autism aren't loving at all...haven't you seen Rain Man? 

Fast forward to  his 3 year check up...Full on meltdown in the doctor's office. Hand flapping, spinning in circles, rocking, chewing on his hands, banging his head. In. Front. Of. The. Doctor.   FINALLY!   Tune changed...yes, he needs to see a specialist right away! There is something going on there. I'm sorry, I guess you knew what you were talking about all these years.  YEARS. We lost YEARS! Years that we could have spent teaching him how to be a little boy. Years that he spent suffering in silence, locked away in his little brain. Years of tears and what did we do's. YEARS. It was horrible and I felt like a failure.

Back from Yellowstone that August of 2002 and off to see the developmental pediatrician (amazing, amazing woman and the SAME doctor that my friend has seen for her little boy...que creepy coincidence music). After talking to her for less that 20 minutes she said, "Your son has a classic case of severe autism.  I can't tell you if he will ever talk or ever be able to live on his own. But I do know that he can learn.  He is not dumb like some will be quick to tell you. And he can love. He is your son and you love him and that is all that truly matters.". And you know what? The diagnosis didn't matter...what did matter was that we had a name for what we had been struggling with for years. We had validation. We weren't crazy or bad parents.  We could work with this!  We were honestly relieved. After spending hours with her and setting up appointments for speech, occupational and physical therapy as well as an appointment with a behavioral physiologist (LOVE that man...he saved our lives and our marriage!) our lives changed. We started  therapy 4 times a week, several hours a day, an hour drive in rush hour traffic, one way.

This is totally the abridged version of our story. It was long and hard and there are lots of things that I just don't remember or care to remember. But our son is 12 now. And he is AMAZING! Literally...amazing! Ask anyone who knows him.  He has a huge fan club! Most people don't' realize just how much work this child has done to do something as simple as write his name or put on his shoes. I am not going to take that struggle away from him. He's earned it. He's a rockstar and any time I have gotten down on myself and thought "oh, this is too hard" and wanted to give up, I look at him. He never quit. He never stopped...granted he didn't like it, but he kept working. He's still working. Ordinary, every day things are so much  more....well, more for him. But he keeps going. He keeps fighting. He keeps amazing us every day.

Almost  4 years ago, while I was pregnant with #4...we got more news. All of our children were diagnosed with a genetic brain disorder called Pediatric Neurotransmitter Disease....Google it, it's complicated and rare and still confusing to me. But it answers a LOT of questions...why our girls have ADHD and then were diagnosed with OCD, dyslexia, dystonia, memory and sleep issues, sensory processing name it. My children have more initials behind their names than most career college students!  (Remember...laugh or you'll cry!) We truly are blessed, even though it may not be your version of blessed!

We have been asked several times if we could make our son's autism go away with a magic pill, would we give it to him? Our answer is a resounding NO. We have only ever known our son this way...if you took the autism away...we wouldn't know that child. I don't want to know that child. There are other questions...hurtful questions. Questions that should never be asked a parent of their children. Questions that I hope he never heard people ask me. Here's a friendly tip...If it would offend you if someone asked you that question...don't ask it.

Bottom line...Our son doesn't need a cure. He doesn't need another therapy or diet or unwanted advice. He doesn't need your pity. Or stares. Or scorn.

  He  does need your kindness. He does  need your understanding. He does need your belief that he CAN. Because he can...and he will!


  1. How did you find out they had PND? I have been searching for years for an answer for our dd and no one has helped so far! I am wondering if this may be worth looking into. We already have a neurologist and neurosurgeon...what joy, maybe they will listen this time? Feel free to contact me @ thank you for sharing your story!


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