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.
I was left disappointed and confused. The book was singing the praises of a different educational method for autistic children, called Floor Time. I had never heard of it, and it sounded exciting and fascinating. But it left me with more questions than answers!!! ABA we could get through TABAC. But no one in my neighborhood - or for that matter, any neighborhood within my city - provided Floor Time therapy. Even the Early Education Center didn't provide it; they had plain old special ed classes. So what was I supposed to do with all this information?
I sat down at my computer and started doing research. It was crazy. The amount of information out there was overwhelming and confusing. In addition, the camps seemed to be sharply divided; Pro-ABA therapists claimed that Floor Time did not teach autistic children skills, and that ABA is the only proven method that really works. Anti-ABA people insisted that ABA was robotic and didn't help the child socialize, but turned them even more robotic than they already were. Then I read about Son-Rise, which seemed to be THE program that pulled autistic children out of their worlds and 'normalized' them. Gevald! The options were confusing and overwhelming! I desperately needed someone to turn to!
But who would be that someone?
How shocked was I that there simply was no one!
How could that be? Where were all the amazing organizations we hear about all the time? Where were the support groups? Where was the one person I could consult who knew the ins and outs of all the educational modalities and could guide parents into making the right decision? Where was the hotline that could provide a confused parent of a newly diagnosed child with a list of resources, options and advice?
I couldn't find one.
Today I have found everything I needed. I learned of the existence of a support group in my neighborhood. At that time, however, I didn't know about it. And there still isn't an educational consultant nor a resources hotline. I have become the default consultant/hotline; and I am more than glad to help anyone who needs it.
But 2 1/2 years ago, I was up a creek without a paddle. I had no one to turn to for advice.
It was mind boggling and disconcerting. During my nearly decade-long battle with infertility, there was oodles of support available. There were web sites to turn to, advisors to request medical input from, plenty of 'been there's to tell their stories. And although there is a plethora of special needs magazines and large organizations out there, there didn't seem to be any specific subgroup especially for parents of autistic children, especially in my neighborhood. Large national organizations didn't cut it; I really needed a peer to reach out to.
And try I did. I posted online anonymously. I wrote letters to magazines. I asked around. But I came u p empty.
I begged Madame Service Coordinator and Naomi Whyne to find one mother in their respective programs, who had a child diagnosed at such a young age to talk to. Both of them replied that they couldn't think of anyone! Madame Service Coordinator had never had a client diagnosed with PDD-NOS under 2 years old. Naomi admitted she had never had an Early Intervention client before. All of the kids in her program were over 3 years old.
I was baffled. How was it possible that NEVER in the history of my neighborhood was a child diagnosed with autism under age two? It didn't make sense.
But there simply was no one!
I know why, and the answers are simple. Very few mothers are so hyper aware of their child's development. Where I live, people typically have large families, and are busy coping wit repeat pregnancies and childbirth and lively families. So if a child's speech isn't developing, they finally decide to apply for Early Intervention when the child is over 2 years old. And whatever the diagnosis, they usually stick the kid in to EEC; they don't want to be bothered with a rotating home team of a zillion therapists. Such a schedule stops the family's life - as I would unfortunately find out myself. Most mothers can't be bothered with such a rigorous upheaval.
Which is why TABAC had never serviced such a young child before. Sure, as I would later find out, they had a few children on Dovi's level who had either regressed or had never developed in the first place and were diagnosed young. But they were all either closer to 3 than 2, or had opted to go to EEC before going to TABAC.
So I really had no one to turn to guide me into making the right choice for Dovi's education. Was Floor Time the right thing for him? ABA? Son Rise? None of the above? I agonized and called around and researched and went crazy. In the end, I decided to settle for TABAC since I had no easy access to anyone who had done Floor Time or Son-Rise and it wasn't easily available in my area anyway.
Ironically, a year ago ECC started a Floor Time class for children over age 3. But by then I was happily settled with TABAC and seeing progress and wasn't ready to uproot Dovi all over again. Additionally, I later heard about various families who had done the Son-Rise program and their kids really improved drastically. But when I heard what was involved in instituting the program I realized that it wasn't for me. Both Floor Time and Son-Rise demand constant involvement from the parents, while ABA is primarily done by trained therapists, with the parents carrying over at home if they so choose. Giving up my entire life to educate Dovi at home - or paying out of my pocket for someone to do it for me, in my house - was not something I was prepared to do.
So ABA it was, and TABAC it was.
But I was absolutely flummoxed at this unbelievable inability to find one Autism Mom I could talk to. It took a wonderful Facebook friend several months later to hook me up with her niece, who ran an autism support group in my neighborhood, and when I felt ready to come 'out of the closet' so to speak, I finally connected with other moms - and I was actually glad I hadn't done it any earlier. I will write about that at a later date.
The only resource I had available at the beginning was books. I read, and read, and read. And I didn't get any smarter, nor did I find solace in any of them. None of them were tailored specifically to my need, and none of them seemed to mirror my story at all. Most books ended up upsetting me and I couldn't even finish reading most of them.
The Boy Who Loved Windows is a good read, especially for someone looking for more information on Floor Time. But books like this one anger me. I really don't want to read about kids who were dramatically cured. I couldn't stand to read how devoted this mother was how she spent hours traveling to Dr Greenspan to have him evaluated and how this magical method magically cured her son in a magical way. Okay, enough overuse of the word magical. I knew there was no way I could stop my life in its tracks and do nothing but play with Dovi - who would not even make eye contact and cried a lot because of his severe sensory issues. Plus, Dr. Greenspan had just passed away two months earlier, and he was no longer available to guide me. This book, and Floor Time, was certainly not for me.
The next book I tried - which I took out of the library - was A Real Boy. This book spoke a little more to me, because the child got ABA therapy at home. But it was still not my story; that boy was basically verbal and in playgroup and almost three years old when the 'fun' started. And it was terribly frightening to me to read what lengths this family went to in order to get help for their child. Would I really be fighting with the Board of Ed for hours of therapy? Did I have to take Dovi off gluten and dairy? All he ever ate was pizza, and yogurt, and cereal with milk! There was too much information for me to process and I was getting dizzy.
One other book that came highly recommended is The Out-of-Sync Child, which really shed light on what children with Sensory Processing Disorder go through, as well as its sister book The Out-of-Sync Child Has Fun, which is chock full of excellent activities for every age, stage, and type of sensory dysfunction. I haven't gotten through either book yet in their entirety, but I still plan to.
In general, there are tons of books on Autism Spectrum Disorder at Amazon or your local library. It's really hard to sort through which ones are helpful and informative and which ones are confusing.
If there are any books that helped you, feel free to share in the comments!
BOOKS REFERENCED IN THIS ENTRY:
Just curious, did you ever try dietary changes with Dovi, and if so, did they help at all? I hear so much conflicting information on diets and their effect on kids (in general, not only in relation to autism.)ReplyDelete
He wasnt gluten or dairy free for long enough for me to see a change, except for him being hungry and having, ironically, diarrhea from all the soy and almond milk. The only amazing dietary change we see is that when he's off sugar and flavoring he's the calmest child on the planet. When he eats a decent meal that excludes junk food he is the happiest kid on the planet.Delete
My three favorite toilet training books (I took bits and pieces from all 3) are Maria Wheeler's Toilet Training for individuals with autism and developmental disabilities, Judith Coucouvanis's Potty Journey, and Deb Bialer's Teach Toileting.ReplyDelete
My fave books in general are The Thinking Person's Guide to Autism and Wit and Wisdom from the Parents of Special Needs kids. Mostly because I have friends published in those books, but I like different stories and different points of view.
It's fiction but FASCINATING--- a teen with HFA going to court to be tried for a crime: Jodi Picoult's House Rules.
Thanks! I was hesitant about the Jodi Picoult book, esp bc it's HFA whih I'm not dealing with.Delete
I think the most interesting book I read about autism was Unstrange Minds, by Roy Richard Grinker, but that talks about the debate over whether ASD is an epidemic, about the perception of autism in a handful of foreign countries and about the author's experience with his own daughter. If you are looking for tips and tricks, you won't find them in Unstrange Minds. (I recommend the book anyway.)ReplyDelete
The Floortime books were interesting and thought-provoking, sufficiently so that they led me to attend (and pay for) Floortime's parent training course. I saw some results, but the technique/approach/whatever was not magic (and had some serious disconnects with my son's personality). It also asks too much of parents, IMHO, in that it calls for them to make their day revolve around Floortime sessions. How's that supposed to work if you a) have other children, b) have a full-time job or c) don't have the space or the money to turn your home into a play area? I did get some valuable insights from my Floortime experience, but it also led me to decide that I would not allow any therapy provider or technique to make me feel guilty.
Thanks for the info!Delete
I would recommend "Demystifying the Autistic Experience" by William Stillman.ReplyDelete
His "Autism and the God Connection" was very thought-provoking too.