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?
Call my mother of course. And my husband. And my sister. And my best friend.
And wait patiently for Monday morning to dawn so I could call my service coordinator at the Early Education Center to ask for further guidance.
Before the dreaded diagnosis, when we were discussing getting weekly Speech and Special Ed sessions, Madame Service Coordinator Extraordinaire had floated the suggestion of having Dovi attend the Early Education Center and get all of his therapy hours filled there. Well, I was filled with horror. Dovi was my baby! He was all of 21 months old! He was still nursing, for Heaven's sakes! I could not picture putting him on a yellow mini bus every morning and being separated from him while he cried and cried during his therapy sessions and I was not around to comfort him. My heart broke.
But as it became clear that we were talking about hours of therapy I began coming around to the idea. It was far better than having therapists traipse in and out of my house every day, having my daily schedule revolve around therapy, being a virtual prisoner in my house as Dovi cried and cried in the other room. With the diagnosis, I now knew that he would need Occupational Therapy as well, to work on his myriad sensory issues. The thought of hosting so many different Early Intervention Therapists in my tiny fourth floor, railroad-style walk-up apartment made me dizzy. The SC explained that most likely this meant that Dovi would be out of the house three days a week from 9:30 - 1:30, leaving me time for housekeeping and errands and networking and whatever else I needed to do. It was the least of many different evils.
So bright and early on Monday morning, as soon as Chaim was off to preschool, I picked up the phone and called Madame S.C. She expressed her sadness and empathy and listened to me kvetch, like the wonderful woman she is. Unfortunately that was followed by a series of blows. Or shocks. Which added insult to injury. Yes, cliche after cliche. That's how horrible it was.
The Early Education Center did not believe in ABA therapy for autistic kids. The director of the Center felt it was too robotic and he preferred a different approach. I would have to find a different E.I. agency to provide ABA. The best option available was through the agency that was providing Chaim with SEIT, as they ran a small ABA center in my neighborhood.
My heart sank, all the way down to my shoes and through the floorboards.
I did not want to deal with them again!!!
The irony was not lost on me.
When Chaim had first started SEIT, the ABA center - which from now on I'll refer to as TABAC to simplify things - and I will talk about TABAC a LOT on this blog - badly wanted Chaim to be part of the center. But I stood firm in my refusal. I wanted Chaim to remain mainstreamed. Taking him out of preschool would be a huge hassle; there was no transportation provided between his school and the Center. They were only 2 blocks apart, but I lived half a neighborhood away, and that would mean scheduling my entire day around the pick-up and drop-off times, which would severely impact newborn Dovi's naptimes. I was not about to turn my entire schedule upside down when it didn't seem necessary. Chaim was a normal child, who belonged in a regular preschool, with side asisstance from his Speech, Occupational, and Special Ed therapists. The TABAC staff argued that I was a mother in denial, and they pressured the SEIT to convince me to let Chaim get some of his therapy sessions at the Center. But I wouldn't hear of it. They had never met me, but I already had a reputation as a stubborn woman, a mother who refused to do what was best for her child and bla bla bla.
Truthfully speaking, if Chaim wasn't my oldest child, and if he were a three year old boy now instead of in 2009, it's possible that I would have relented and let him split his time between preschool and the Center. But at that time, the only children who attended TABAC were low functioning to severe - like Dovi. Today, when I drop off or pick up Dovi from the center, he is oddly enough the lowest functioning child in the place. Most of the children are kids who need a push, who are pretty much verbal and toilet trained but need a lot of therapy and the best thereapists are available in the Center rather than within the schools. But when the ABA center first started out, they serviced primarily children like Dovi. Chaim did not belong there.
After a year of constant arguing with Chaim's devoted SEIT, TABAC finally relented and stopped pressuring him. His SEIT showed proof to them that Chaim was steadily improving, and spending most of his preschool hours with low-functioning kids was not conducive to his social development. They had finally stopped bothering me six months earlier.
And now I was going to come to them with my tail between my legs, begging them to take my younger child into their program?
It was really humiliating.
But what choice did I have?
(By the way, this incredible SEIT - whom I haven't heard from in 2 years now - called me just last week to inquire how the boys are doing. Uncanny timing!!!)
Madame Service Coordinator promised to do all the legwork for me. She first showed the principal of the Early Education Center Dovi's reports, to see if there was some way he would fit into the school. Madame Principal did not think they were equipped to help Dovi and also agreed that ABA was the way to go. Of course, this all had to be kept on the down low; the director of the EEC wasn't allowed to know that they were recommending a program he frowned upon...
The next step was to meet with Naomi Whyne, the director of TABAC. I braced myself for an uncomfortable experience, but to my surprise, she was warm and wonderful. She did not remember my name at all and didn't seem to know who Chaim was. Apparently most of the haranguing the SEIT had endured, had come from the Administrative Assistant and not from her. So we started off with a fresh slate.
I was absolutely mesmerized by the magic of ABA. Naomi held up a toy she thought Dovi would love, at his eye level, and made him say "Ma ma" in order to receive the toy. It took several prompts, but he actually did it, and he held eye contact! She was pleased with that reaction and felt he would be a fantastic candidate for the program. They had never actually serviced a child this young before, but she explained that some of the hours of therapy would take place in my house and the rest of the hours at the center. She also absolved me of the guilt I was carrying around for letting Dovi spend so many hours alone in his room and not engaging with him. This regression of speech and skills had nothing to do with that; it was the way his brain was wired and not as a result of anything I had done.
Our next step was getting an OT eval - which went surprisingly well; he reacted positively to the activities the evaluator laid out for him, but he still qualified thoroughly for Occupational Therapy. Once all the reports were in place, a meeting was scheduled with an Early Intervention Official, known for some reason as an EIOD, for May 26. I hoped and prayed that we would get a lot of hours so Dovi could start on a quick path to improvement. I was still convinced at that time that his symptoms were reversible and he would catch up with his peers relatively soon.
Boy was I wrong.
The surprises were not over yet - not by a long shot. I would still suffer from so much anguish, agony and heartache before Dovi would yet begin even one session of therapy of any kind.
So much can happen in a day. Or an hour. Things kept changing at the speed of light, and my brain was atizzy with decisions, headaches and simply the feeling of being overwhelmed. I wished I could just press a button and disappear somewhere far, far away, where I was just a regular, busy mother of 2 regular, normal children, and none of this meshugaas was really taking place.
To be continued...
Oh, wait. I didn't answer the question in the title. What you should do next? Well, that depends on who made the diagnosis and how old your child is. If the diagnosis was made by an EI or Board of Ed evaluator, your next step is to apply for intervention and therapy. If it was made by a doctor, it's time to get the Board of Ed involved.
Your next step after that is to reach out and connect with other local autism moms. Which, as you'll read about in the next entry, proved to be my own personal Mission Impossible. Finding a needle in a haystack would have been easier.
To really be continued. Honest.