IF IT WALKS LIKE A DUCK AND QUACKS LIKE A DUCK, I'LL PRETEND THIS ISN'T HAPPENING

I was no stranger to Autism Spectrum Disorder. As a matter of fact, I had just finished recovering from my close brush with this very scary monster.

As mentioned earlier, Dovi's older brother Chaim was a preemie, and had OT and PT until he was discharged at age 2, having fully caught up with his milestones. I thought we were home free forevermore.

When Chaim turned 2.3, I started the arduous task  of toilet training him. Yes, I know it's a bit on the early side, but I was anxious to get started so he could go to preschool before Pesach so I could clean uninterrupted. My friends and siblings toilet trained their 2+ year olds in about two weeks; they said that on occasion with a really stubborn child it could take six weeks.

After six weeks, I threw in the towel. More accurately, I threw the towel on the floor to wipe up accident #999, screamed, and pulled my hair out.

I simply could not toilet train this child!

I tried everything: charts, bribes, three different potties, ignoring accidents, petch, calling Bubby, talking nicely, stickers - you name it. It just didn't work. It was as if everything went in one ear and out the other. He went in the potty, got praised, cheered and was proud of himself, and five minutes later, he had an accident on the floor. It just wasn't working.

EVALUATION, EVALUATION, EVALUATION

I had been down the Early Intervention road with Chaim. As a preemie with clear and obvious delays, he was awarded two Occupational Therapy slots a week. They were very helpful to his development, but scheduling his naps around them were annoying and difficult. At 16 months, Physical Therapy was added twice a week, and now I had to schedule his naps and my shopping around four therapy sessions. Super annoying.

It had been so liberating when Dovi was born to have my schedule, which didn't revolve around therapy sessions. But just too bad; if Dovi needed speech therapy - which he obviously did - I would have to rearrange my schedule for him. I did want his speech issues fixed, didn't I?

I had no idea just how rearranged my life was about to become; so distorted, in fact, that it was not my life anymore.

But I'm getting ahead of myself.

LET'S START FROM THE VERY BEGINNING...

While I don't keep Dovi's situation a state secret, I don't particularly relish telling the whole story to people who don't know anything about ASD (autism spectrum disorder). Inevitably their eyes open wide in horror and they make inane comments and ask really uncomfortable questions. Top honors go to: "Will he be able to get married?"  "What caused it?" and "How did you notice that something was wrong?"

I'll address the first two questions later. For now I want to focus on the last question - because truth be told, when I meet a parent of a child with ASD that is often my first question too. (After "Where does he go to school? Is he verbal? Toilet trained?" Notice that I wrote "he"; the vast, vast majority of children with ASD, especially in the frum community, seem to be boys.)

Usually when those types of questioners start with their litany of queries, I sense an edge of panic in their voice. They are terrified that this dreaded 'thing' will hit their precious toddler. Most mothers of children with ASD (I shall heretofore shorten this as MOCHWA, Mothers of Children With Autism, so that it takes me less time to type up this long megillah), especially in my community, do not really talk about it, certainly not as openly as I do. So the symptoms are a rather murky topic, and every mother suddenly starts panicking that maybe their little tzaddik or tzadekes is not yet forming a full sentence at 18 months, and maybe she shouldn't have given those pesky immunizations, and what if.... and so forth.

Aside from curious noseybodies asking me 'how I noticed', I get a shocking amount of legitimate queries all the time. Two-and-a-half years ago when I started out, I had nobody to ask, nobody to turn to for support. I seemed to be the only mother in the community dealing with this situation. (More on that in a future post.) In the past year or so, the amount of toddlers getting diagnosed with ASD is skyrocketing. Nary a week goes by without someone or other contacting me with concerns about their toddler. It's a surreal feeling to be on this side of the fence - the one with experience, resources, and helpful advice. Just a short time ago, I was the one floundering in the stormy ocean without a life preserver.

So let me answer that burning question, just how I noticed that something was off with Dovi. I'll detail the evaluation process in a later post, but for now, I'll just describe the events leading up to the "AHA, MY CHILD NEEDS HELP" moment. If you're one of those worrywarts, hopefully this will either allay your fears, or start you on the early evaluation path, which may be a good thing for you.

WELCOME TO HOLLAND? FEH! WELCOME TO HELL!

Many of you are familiar with what is probably the most famous essay ever written about special needs parenting: Welcome to Holland. I read it faithfully as a child, and as a young mother, and nodded sagely. Sure, I thought, so your child is different, but it's still Holland. There are windmills! And tulips!

Tulips, my foot.

Trust, me this bizarro-land is nothing like Holland. NOTHING AT ALL.

Here is how the true, untold story of the so-called "Trip To Holland" really goes.

WELCOME TO MY WORLD

The psychologist looked at me squarely from across the table.

"You know about the Autism Spectrum, right?"

My heart pounded and I nodded mutely.

"Well, your son definitely has PDD-NOS. I recommend many hours of ABA therapy, starting as soon as possible."

I was numb as the psychologist left. I stared mutely at my beautiful blond toddler, who was curled up in a corner, grunting and stimming, off in a world of his own.

Where have you disappeared to, my child? Where have your beautiful smile, your engaging eye contact, your babbling gone? Just 3 months ago you were counting from one to ten, bopping along to the abc's, making developmental strides beyond your age. And now you're somewhere far away, in a universe where I'm denied entry. Will I ever get your back? Will our lives be the same again?

As I sank into the couch, tears slowly rolling down my cheek, my unasked question was, "What now?"

I did not know the answer.

*****

It's been several years since the day my life turned upside down, and no, life will never be the same. There have been ups and downs, happy times and awful times. I have learned a lot on this journey so far. And I want to share some of it with you. Whether they are powerful lessons, funny moments, or just personal musings, they are all bottles up inside me and written down hastily on scrap paper. But most important of all, I want this blog to serve as a point of support to other parents of children with autism. Back then, I had nowhere to turn to for support. It was a massive struggle. At this point, I'm the one doling out the advice. And I would love to help you.

Along the way, I will also post about the things that have helped me, Products, resources, ideas. I am only just scratching the surface. There is so much to write about. I hope my ongoing story will at least be able to benefit others who are struggling with the same situation.

I don't know how you found this blog; whether through a web search, a link, or an invitation from me. If you know who I am, I ask you to keep my identity confidential, especially when posting a comment. I am purposely using pseudonyms for everyone involved, including the organizations I am afilliated with. Please do not blow anyone's identities.

Being an Orthodox Jewish woman, my posts will obviously reflect my lifestyle and religion. I'll gladly explain any terms that are not understood by some readers, and I ask that all comments are kept respectful and non-judgmental.

I look forward to this new, exciting venture and I hope you will too. Check back often, follow me, put me in your RSS reader - whatever you'd like. Leave feedback. Let's hope this is the start of something great!