On a lighter note...

I was just looking through the stats to see what google searches brought people to this blog. The results were pretty interesting.

autismparentinghelp.blogspot.
navigating the stormy seas
"his shoes and socks"
ano ang autistic
autism dovi blog
autismparentinghelp.blogspot.com
dealing with autistic children
life with an autistic child
www.autism-parenting.com

autism autism symptoms checklist aitistic
	I hope everyone who came here via searches has found what they were looking for. Thank you for looking for me and keep looking!

AUTISM PARENTING IS A FULL TIME JOB

This is ridiculous. I started this blog filled with idealism and motivation, brimming with incredible material to write and discuss. I tinkered with the blog setup and different affiliate programs and links and whatnot. I spent tons of time - time I don't have - networking across the blogosphere with other Autism Mom blogs, with very disappointing returns. The project I was so excited about, which started off with a bang, feels like it fizzled out too soon. I'm not thrilled.

Because on top of my inability to spread the good word about this fantastic new blog, I found myself suddenly with no time to write new posts. And if there's no new content, a blog is worth about as much as last year's snow.

Being an autism parent is a full time job. Aside from dealing with the usual stuff - the mess, the stress, and the distress - there is just so much work to do. Here's just a partial list of what I've been busy with all week:

WHAT DO VETERAN'S DAY, HALLOWEEN, AND THANKSGIVING DAY HAVE IN COMMON? They're all mentioned in this post.

I haven’t updated in a while and I apologize. I’ve been extremely busy. Monday was Veteran’s Day, which meant Dovi was home, and although I was fortunate to have volunteers take him out, it was a shorter day than usual. In addition, it was my turn to cook dinner for  a relative who is not well, which meant the kitchen was a disaster zone. Yesterday both boys missed their buses, and for some reason I was plum exhausted all day and could barely function. My netbook has been frustratingly slow and freezing up way too often. All together it’s a recipe for disaster. Errr, I mean, for not updating the blog. My brain is percolating with ideas and bursting at the seams with articles waiting to be written; but life hasn’t stopped and I’m still racing on the treadmill.

When I finally sit down in front of the screen to write, I feel a little lost. The sheer amount of things left to say is overwhelming. I originally planned to keep this blog in chronological narrative form, but I realized that it will take me months – nay, years! to catch up to the present. So much happened every single day in the past 2+ years, that by the time I’m done writing about all that, another year will have passed and I’ll have more to catch up on!

Additionally, I think it’s a bit unfair to just keep harping on the past – a past where I was bitter and resentful and depressed and thought I would never reach the precious point of Acceptance – without talking a little bit about the present and focusing a bit on the positive.

SUMMERTIME, AND THE LIVIN' AIN'T EASY.... or: WHAT THEY DON'T TELL YOU ABOUT ABA THERAPY

Do you remember a time when your really, really wanted something really badly, pinning all your hopes and dreams on it, awaiting that incredible something with massive anticipation, and when you finally got it, it was a major disappointment? Or worse yet, it was horrible, awful, terrible, and you just wished you could give it back but couldn't?

That is exactly what happened when Dovi finally started therapy.

The first therapist to show up was a Speech Therapist, named Vivian. She was gentle and kind and loving, but Dovi just cried and cried throughout the sessions. He refused to sit in one spot and felt overwhelmed by the simplest task, the slightest touch. He did not know what the therapist wanted from him and did not respond to any of her commands. He cried and cried.

And so did I.

It's really difficult to listen to your child cry and be unable to -- or not permitted to -- intervene and make it all go away. My brain knew that this was for Dovi's good and the crying did not mean he was in distress. But my heart was aching and I couldn't take it.

EIOD. IFSP. EEC VS TABAC. PDD-NOS. ABA. CAN I HAVE ANOTHER HELPING OF ALPHABET SOUP PLEASE?

Enough with the philosophical musings. Time to pick up the thread of the narrative. I left you all hanging, waiting for the meeting with the E.I. Officer.

Once Naomi decided that Dovi was a good fit for the ABA program, the next question became: How soon would they be able to start, once I got my IFSP (individualized Family Service Plan). It turned out to be way more complicated than I had expected.

Because it was so late in the school year, Naomi was extremely occupied with end-of-the-year paperwork and meetings and setting up the kids for the summer. She didnt have any therapists available for me until the start of summer sessions, which was July 1st. When she heard we were going up to the Catskills for the summer, she was dismayed. We would be away from June 16 - August 15; summer sessions were from July 2 until August 10. This meant that Dovi would only begin his ABA program in mid-September. This was way too long to wait!

She couldn't understand why I was contemplating going away for the summer when so much time was at stake. But I had already given a deposit on our bungalow, and I wasn't going to turn everyone's lives upside down more than it already was. This wasn't fair to Chaim, to my husband, to myself, and even to Dovi. Every year I looked forward all year to spending the summer upstate, away from the hot, concrete city. The kids thrived in nature, played with sand, and spent time in the swimming pool. Staying in the city was too depressing to consider. But here I was being made to feel guilty by the very people who were supposed to help me!

AUTISM IS NOT AS 'FASCINATING' AS YOU MIGHT THINK

Some people have a natural affinity towards special needs individuals. They seem to gravitate towards them, and spend many of their waking hours doing chesed (good deeds) for special needs families, interacting with the disabled naturally, and are well-known within the special needs circles. Over the past year or two I've gotten to know several such families and I am constantly overawed by the sacrifices they make and the unconditional devotion and acceptance they portray.

I was never that type. I was not a starer or a curious questioner of disabled individuals; I treated them with respect and interest. I never felt uncomfortable around people with special needs, but I wasn't particularly involved with them.

Growing up, I knew of two types of congenital disabilities: Cerebral Palsy and Down Syndrome. Of course, there was mental retardation too, but when I was a kid, 'retarded' was a term often used as a slang word for 'crazy', 'unbelievable', 'ridiculous', kind of similar to the slang word 'sick' that is used today. "Retardo" was a derogatory name that kids would called each other. Autism wasn't on my radar.

BOOKS NOT TO READ ON AUTISM; (Alternate Title: IS ANYONE OUT THERE???)

There we go, with dual titles. I don't really like it. But this will be my very first post testing my Amazon Affiliate program, and hey, I do want someone googling "Books on autism" to maybe find me on page 20 of their search results. Ha.

So where were we? Oh yeah. After my initial interview with Naomi Whyne, I came home elated, excited, and raring to go. She had warned me that ABA was brutal at the beginning and there is a lot of crying and resistance from the child, but they have seen so many incredible success stories with children as locked-in-their-world as Dovi, and she felt he would do well in the program. All we had to do was wait for the meeting with Early Intervention.

Madame Service Coordinator, too, was impressed with what she had seen and thought it would be a good fit for Dovi. Before I made a decision, though, she had a book she wanted me to read. The title of the book was The Boy Who Loved Windows. Eager to get some clarity to shed light on what was happening to Dovi, I bought a copy on Amazon.

MY CHILD WAS DIAGNOSED WITH AUTISM. WHAT DO I DO NEXT???

Note, dear reader, that the title of this post is purely for the benefit of the google-searcher. My real title would more likely be, "THE BOTTOM HAS DROPPED OUT FROM UNDER MY FEET AND THE WORLD AS I KNOW IT HAS ENDED AND MY LIFE IS OVER AND WHAT DO I DO NOW????" But of course, no one will put that into Google Search.

Hey, you never know.

So back to that terrible, horrible, awful, unspeakable, horrific, you get the point, Sunday morning in late April when Some Lady Ph.D. told me to my face, "Your child has PDD-NOS. I recommend hours of ABA therapy," and breezed out of my life, leaving me alone to nurse my wounds, glare at little hapless Dovi with daggers of red hot resentment for ruining my life, and the first four stages of mourning to get past.

What did I do next?

Time for some honest reader feedback.

I've been working on this blog for almost two weeks now. It's so therapeutic, and such fun. I haven't made much $$$ though yet.... less than ten dollars. Ha. But it's been fun.

Some of my fellow successful blogger friends have been providing me with helpful feedback. The two biggest issues seem to be that the cutesy titles don't help with search results. But what should I do - it's my literary style, I love it, and I would HATE to title my posts with boring titles such as "Dealing with denial when your chid is autistic", "The evaluation process". BORING. Can't life be a little fun?

Secondly - and more concerning to me - is the fact that I literally do not receive any comments on my entries. I have had 2000+ hits so far - which is massive - but no one comments. I'm baring my soul to you, folks, and while I do get private comments on Facebook and email complimenting me on the content - which I appreciate - that doesn't help the blog look like an 'involved' blog with a community of readers. The casual reader who chances here through  google search (and believe me, I got quite a few hits from genuine autism searches) won't want to stay if it seems like an abandoned blog where I'm talking to the wall. Or myself. Her advice was to end my posts with open ended questions to get my readers involved.

The trouble is, I don't have any questions. Most of you readers are not Autism Moms, just friends of mine from Facebook and the Jewish Mom's forum. And I hate ending posts with questions. I love ending with a punch, with suspense, drawing my readers in to want more and to come back for more.

So tell me, readers. What do you think of all this? Do you prefer clever, deep titles, or is it easier for you to open a topic when it's clear and simple? And do let me hear from you: what brings you to this blog? Are you dealing with special needs yourself or just a casual reader? How did you arrive here - from FB/forums or via a search?

Also - if you're an autism mom or are part of an autism community, spread the word about the blog. Again, my chief objective in running this blog is not the money - although of course it's nice :) - but to reach out to other moms floundering in the sea. I have so much to share and so many products to review. But I'm hesitating, as I don't seem to be reaching the target audience yet.

If any of you are experienced bloggers and can throw me a bone on getting more audience participation and reaching out to the target audience, please let me know.

See, I didn't end the post with a question. It's not my style. But there's  paragraph of questions higher up the page!

DENIAL IS A RIVER IN EGYPT

Of the five stages of grief, I spent the least amount of time in denial. By nature, I'm very much a realist, which is a good thing; when faced with a challenge, I scream and kick and insist that it isn't happening. But then I dust myself off and spring into action. I'm also an overthinker, overanalyzer, and researcher; all good traits unto themselves, but unfortunately I also tend to obsess and engage in fatalistic thinking. In plain English, I jump to the worst case scenario immediately. Positivity is not my strong suit and I'm a pessimist by nature. It's a defense mechanism my mind employs so that I don't have false hopes and make false promises. It's an inborn trait, embellished by my upbringing and made worse by my long journey through infertility. Because I couldn't bear disappointment, I consistently conditioned myself to expect the worst so I wouldn't be let down. This continued when I became a mother and when this whole business started. It has taken several years of hard work to stop jumping to negative conclusions all the time; but 2 1/2 years ago it was my instant go-to place.

HURRICANE DOVI STILL IN FULL FORCE

Thank G-d for a return to normalcy,
That is, for everyone but me!
Sandy may have come and gone like a dream,
But thanks to the B.o.E., Hurricane Dovi still reigns supreme!

It's been a trying time here at Chez Blogowitz due to the Board of Ed closures due to Hurricane Sandy. Yesterday was kind of manageable; my husband came home early from work and kept him busy. Today, private schools in my neighborhood are all back to normal, but the Board of Ed is still closed, so Dovi is still home. Now I hear that it's closed tomorrow too. It is getting difficult.

Yesterday, while I was drinking my morning coffee and Dovi was safely ensconced in bed, he did what he usually does when he has a dirty diaper and is bored; he stripped down to his birthday suit and painted a masterpiece I refer to as Poopie Picasso. Unfortunately the most unpleasant part of autism is a phenomenon known as fecal smearing. I leave the rest up to your imagination, if you haven't lost your lunch yet. I spent half the morning cleaning him up - it was indescribably disgusting - and the other half of the morning keeping him away from his reeking room and trying not to gag. After I finally dropped him off at a lovely volunteer family (more on them later), I spent the entire afternoon taking apart his bed, disinfecting it, soaking and washing his bedclothes and linens, and putting it all back together.

Thank goodness, due to a bunch of precautions we took last night - which I'll elaborate on as the story on this site builds - we didn't have a repeat incident this morning. We do, however, have a raided and ransacked kitchen which will take me hours to clean up.

Due to the MTA closures, neither my cleaning help nor Dovi's Home Health aide have been able to come so far and probably won't for the time being. And now I hear that the Board of Ed is still closed tomorrow. I am worrying for my mental health.

Those of you who have not personally dealt with an autistic, hyperactive child cannot begin to comprehend what I'm talking about. So please don't judge.

Suffice it to say, I'm grateful to HaShem that my family and community got through the actual storm with no damage, power outages or loss of life.

But the collateral damage might just be my mental health.

Here's to hoping his school reopens tomorrow. Time to start praying!!!!

ETA: Looks like my prayers were accepted. School WILL be open tomorrow BH. Whewwwww.

SO WHERE YOU WHEN YOU HEARD THE NEWS? ME, I WAS IN... SHOCK

Most - if not all - autism moms can pinpoint the exact moment they knew that life the way they knew it was essentially over. They can clearly remember where they were sitting, perhaps what they were wearing, and what the atmosphere was like in the room when they heard the news.  And they would do anything - ANYTHING - to freeze that moment, to grab it by the horns, pull out a magic Time Turner and turn back the time so that they never, ever, ever experience that moment again. That horrible freefall, that moment when the floor underneath them simply pulverized into nothingness and they found themselves falling, falling through the air into an endless chasm below, flailing and gasping and scrabbling in the emptiness, hoping to find something - anything - any remote sliver of hope to hold on to.

Unfortunately, that moment is immortalized forever in a report sitting neatly in a yellow folder in my dining room bureau drawer.

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!