The saga continues (plus: Uncle Moishy on Amazon!)

Once Dovi began getting ABA at the basement, my life changed for the better. It was incredible. I couldn't believe that I actually had the mornings available to do stuff. Sure, there were some downsides too; suddenly I had to have Dovi dressed, ready, and out the door at 9:30 a.m., and I had to have breakfast, lunch and snacks all packed up too - but I was able to live. There was no more screaming in the house, no more scrambling to get the place spotless for 2 fastidiously tidy therapists.  Best of all, I was able to run errands, take naps, and do housework in the mornings.

And Dovi loved the new setup too. Ellen, the new therapist, was amazing. The combination of her enthusiasm and love, the large empty space, and the lack of hovering mother around meant that for the first time in months, he was finally making progress.

Life was easier, but it was still incredibly hectic. After picking up Dovi from ABA at 12;30, he still had Speech and Occupational Therapy in my house,and I was always rushing, rushing, rushing somewhere. But it was definitely better than the disaster home ABA had been.

Dovi loved going to the basement. He literally ran. I liked to sit and watch Ellen in action sometimes; it was amazing to see the progress. She zeroed in rather quickly on his sensory issues and other quirks. Before long she had taught him to walk independently to the little table, do his work,and she rewarded him with big hugs, social praise, and swinging him in the air, after which time he was allowed to go over to his play corner for a few minutes of free play. It was amazing.

HOME-BASED ABA IS WORSE THAN CHINESE WATER TORTURE

We last left you off in the latest installment of our serial story (which should be aptly titled "Never A Dull Moment") with our arrival back home from what can be loosely termed "summer vacation", although it had been anything but. I immediately fell onto an endless treadmill of stuff. My husband's second-to-youngest sister was getting married a week later and I did not yet have a dress to wear for the occasion.

So off we the very next morning, boxes still unpacked, to register Chaim for day camp for the one remaining week of the summer (we had come home early due to the selfsame wedding) and then to the underthings store and to the fancy dress store. Thankfully I snagged a pretty black suit - that's what the ladies wear nowadays to weddings around here - and the boxes got unpacked,the house got cleaned up,and I braced myself for the crazy schedule to come.

It didn't happen all at once. Within the first week Dovi slowly started 'related services' in the form of two new speech therapists, Malia and Debbie (Vivian would be coming home from the Catskills a week later) and Lynn the occupational therapist. Dovi cried with all of them. Debbie was "ABA trained" and tried to implement ABA-style methods, which Dovi, of course, hated. Malia, a sweet, 'regular' speech therapist, was at a total loss on how to reach Dovi. Fortunately she had some exciting toys with her, such as the gears toy Vivian used, and Dovi cried the least when she came, viewing it as play time. Lynn immediately zeroed in on Dovi's varied sensory issues and we devised techniques together to get him calm and cooperative. We created a swing out of bedsheets and swung him vigorously together before every session. She initiated a "brushing" program to give him deep sensory input on his skin, and she often created a tent out of  bedsheets and dining room chairs, creating a quiet, soothing, enclosed environment for him to work in. The first month he cried straight through his sessions, but gradually he got used to her techniques and found them soothing and began cooperating with her.

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!

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?

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.

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.