Susan's Blog

Wednesday, December 30, 2009

Just Dance

I’ve been using a new dance DVD given to me twice this holiday season — by Ned and by his father — and it is the best yet. Blanca is a wonderful teacher because she is very human, very real. There is a sweetness and warmth about her, an unrehearsed quality to the way she instructs on the DVD, that makes you feel relaxed and open to learning.

Dancing with this new DVD made me understand something about the way I learn. Sometimes Blanca breaks down a dance step or move, and other times she practically mumbles what to do, very quickly, and then right away moves into it. This forces me to do the same, in order to keep up with her and the music. Yet I feel no anxiety when doing so. Sometimes it is just right, and I can do it without having anything broken down into smaller steps. I just dance, and then, there I am, dancing!

While falling asleep last night, noting with satisfaction the sharp benign pull of my leg muscles, I thought about the breaking-down of things done in many forms of education, in particular, Nat’s education. Many of us learn that — ABA (Applied Behavioral Analysis) style — if you break things down for autistic people like Nat (as if they are just some big, uniform group), they will be able to learn many new skills. Especially if you reward each small step gained.

I am not trying to belittle this popular educational approach; I believe that ABA-style education works for many people in general. It is positive reinforcement. It is breaking down complicated new concepts into more familiar, manageable ones. I have seen Nat respond well to this very sensible, structured method and I feel that it has a definite place of respect in education.

However, my heart and soul have always revolted at this style of education, particularly as a parenting style. When Nat was little, like 4 or 5, and we were being trained in ABA along with him, I remember feeling such a loss — the loss of my own intuitive, holistic, maternal approach to teaching him. The warm exciting flying-by-the-seat-of-my-pants approach that comes naturally to me. I was told time and again that this more consistent, structured, mathematical-logical approach went along with Nat’s mind better. That he is different from me. But what it felt like to me sometimes was I was being asked to “civilize” him, to squeeze out his natural tendencies towards stimming and other things autistic, and make him into something he was not.

Of course this has been my own lifelong struggle as Nat’s mother: to figure out how to separate what is me, from what is him. So, not only to figure out what is Nat and what is the autism, (and therefore what can/should be changed/refined), but also: what is about me and my needs — and what is about my child. From the moment I was told to put him in a full-day, full-week school program at the tiny tender age of 3, my wispy little toddler who seemed much much younger than that. To the moment I was taught how to teach Nat to play with cars like the rest of the kids his age (“Put man in car. Push car. Make ‘vroom’ noise. Good job!” Check off plays appropriately.). To the time I was advised to let him try living with others in the school’s group home, at the tiny tender age of 18. I feel like I’ve always basically been doing it wrong, according to the experts. Because I have been told to approach him from this logical standpoint, this step-by-step, dry, neutral point of view.

The reality is far more organic. For the truth is, the best teachers Nat has ever had are the ones who connect with him first, and operate by feel. Sure, they follow their training and their researched curricula; but what makes them effective with Nat is that they are getting to know him as he is and loving what they learn about him. Nat’s current teacher is a great example. Even when she reports an outburst — the required language of the ABA teacher, the signal that there is an aberration in the smooth, flowing data — she will see in it something positive. She tells me that this outburst actually means he was trying to advocate for himself; he was using his words, but the other person simply could not understand. That kind of thing. She sees him the way I do, in other words: with compassion, love, admiration, and yet also with discernment. The best teachers do that. The best teachers are not technicians. They do not follow their training solely with their minds; they also involve their hearts and their intuition.

Over time, I have learned that it is okay for me to teach Nat the way I do. How often could someone like me really use ABA-style techniques anyway? Where the hell is that chart with the velcro rewards? Where’s the pen when I need to mark down the data? So often I have had to grow very still and find my way to Nat, and hook into what’s going on with him. I have to feel what to do. I have had to connect with him and go from there. I think that what I do is just dance with him.


Can totally relate. Never been more depressed than when trying to make ABA work for me/her/us.
"It" that connection, that ephemeral something that makes it click is exactly like music and dance…it just has to flow, speak to your soul.

— added by JoJo on Wednesday, December 30, 2009 at 9:37 am

We had the intensive ABA in our house from Sept to July (1st week) when the little one was 4. It was UGLY. They were inflexible, and of course I was a crappy parent. They mentally abused both the child and I by belittling both of us. The little one in May clawed his Male T – 5 actions against others – and he was never back.

After they left in July, we had a meeting in early Aug at Community Living's offices since I would not let them back in my house. A meeting I am certain that without my FSW from Community Living, they would have called Children's Services. Rumour has it… they had before. My son was learning… they weren't happy. I agreed to the transition to school program and it took them 6 weeks of a few hours/wk for the teacher to remove them permanently. I still shake when I think about it and he's now 8.

My eldest is getting ABA under PPM 140 at school. This is not that inflexible disaster we had. This is token systems, extra help, social and behavioural lessons. This system – each child's is different – has been in use for all of Gr 4 and now Gr 5 – and he's thriving.

When the ABA people argue how wonderful ABA is they have to remember that ABA programs are all different. When they claim it's "evidence based", they lie b/c every program is different. There is no conclusive evidence at all that it works and that it doesn't harm. We have the Lovaas inflexible, follow the program only one… those that follow the child and add playtime are much different.

ABA IMO is simply breaking down the steps and teaching them… That is how we learn.

— added by farmwifetwo on Wednesday, December 30, 2009 at 12:20 pm

Farmwife. The ABA you had sounds exactly like the horrible New England Center that is forced upon parents in Mass. Inflexible, rote, no consideration for generalization and they love the restraints. Really turns a parent off of ABA which is a shame.

— added by Anonymous on Wednesday, December 30, 2009 at 1:58 pm

I count on you, Farmwife, for your conviction and strong opinions! 🙂

Anon: you sound like me, the way I feel about a certain (unnamed) school. I suppose I could tell you about the parents I know who are so happy at NECC, but it doesn't matter because everyone has a different experience and yours did not sound good.

— added by Susan Senator on Wednesday, December 30, 2009 at 3:30 pm

"I count on you, Farmwife, for your conviction and strong opinions! :-)"

Me… opinionated… Me??? 🙂 🙂 🙂

The girls on a bb I play on… we met years ago on an authors bb… would all agree 🙂 I have a goodreads pg as well

I have found over the years that if you don't stand up for yourself you get walked on. It was one of the HARDEST lesson's I've ever learned. I have also learned when to toss up my hands – and have when it comes to the school – and simply do it myself (I homeschool afterschool). I have also learned that "there's more in heaven and earth" when it comes to autism, to treatments, to causation. I have learned that everyone has to create their own way… Doesn't mean I agree with it… Doesn't mean I won't say exactly that… But I do appreciate the process.

I dislike those that try and claim that their way is the only way. That it has to be this or that. Whether it be care, treatment, school etc. That by choosing your own path automatically makes you a crappy parent. I happily voice my opinion on those blog posts 🙂

I follow no "camp" b/c I have learned that my agenda, my world, is not the same as someone elses. And I simply wish others would do the same. Autism-land would be a much better place if people (especially the ND crowd, b/c the demand it of everyone else) actually practiced what they preached "Acceptance".

— added by farmwifetwo on Wednesday, December 30, 2009 at 4:03 pm

I know plenty who have had a bad experience with NECC. The ones who like it typically have no clue. Here's a mom who says it better than anyone:

I have to pipe in about NECC as well.

From what I've seen over the past four years as a resident of Massachusetts with two effected children, NECC seems to be the enemy. It seems to be the kind of place where some families can feel they're having a benign, even helpful experience while horror is going on just down the hall. The use of drugs, restraint and food reinforcements known to be toxic to our kids is part of it, but it's also the fact that NECC emits a distinctly malevolent "political" and ideological influence on autism services in the state. Here's a sample of NECC's research newsletter entries:

Note the number of anti-biomed/vaccines-really-really-don't-cause-autism articles, and the one I particularly like for it's "sophisticated ironic play" on David Kirby's book, an entry entitled "Evidence of Harm"– to describe the child who died from chelation. This is not the publication of an open minded, non-politicized organization that will ever change its mind or its tact on cause and treatment of autism. Stick a fork in NECC, they're cooked and the world would be better off without it.

We've had to fire more than one private ABA therapist because the anti-biomed brainwashing they received at NECC made them literally dangerous to our kids. In one situation, the BCBA deliberately wore clothes soaked in fabric softener to follow up her written protest against our request that therapists not wear strong perfume because of our kids' serious reactions to synthetics. One therapist received such a scary brow beating from the NECC-trained director of the service over our children's biomedical issues (the director was yelling that our kids "have no medical issues") that she had to quit and decided to return to school so she could get out of ABA altogether.

Though I've met parents who have their children at the school who opt out of drug treatment, NECC pushes and prescribes antipsychotics and other drugs routinely. And when the children don't improve from the Skittles reinforcements and Risperdal regimen, the center has referred the failures to the Judge Rotenberg "shock" Center (page 3 of JRC's own "executive summary" on some of NECC's referrals: ; then go to page 7 for details of NECC students being drugged and restrained up to 70 times per week ).

JRC is the repository for children so drug damaged that they'd die if they took another pill but who's behavior has become so problematic that no other institution will take them. I view places like NECC as a kind of "feeding tube" for places like JRC, both because NECC exerts its considerable influence in preventing further research on environmental cause and because of its practices. So much for NECC's "positives only" philosophy if they drug and restrain to this degree and if the end result is landing at JRC. Positives only is a mischaracterization.

NECC is funded in part by Dunkin' Donuts, so I seriously doubt they'll ever change their credo on GF/CF and biomed. I would run steer clear of anything that NECC was intrinsically involved in. I don't particularly care how "great" they are at providing ABA (and I question this because of little things like the fact the school would rely on antipsychotics and would *RESTRAIN A CHILD UP TO 70 TIMES A WEEK BEFORE IT WOULD EVER TRY GF/CF*– sheesh)considering the other drawbacks in their philosopy and approach.

— added by Anonymous on Wednesday, December 30, 2009 at 4:22 pm

Hmmmm… well, we never wanted NECC anyway…
@Farm Wife: it's just that you seem to have your priorities really together. Happy New Year!
@ all of you: Happy New Year!

— added by Susan Senator on Wednesday, December 30, 2009 at 5:10 pm

Anon – our program (Prov gov't pd, local children's hospital) was suppose to consult with the SLP and OT (Prov preschool pd program) and refused. They refused to continue his "brushing" although the OT at the school put the protocol back in and the school does it. So, I can't say I'm surprised.

Susan – it takes 8hrs to mow the farm with a ride-on mower. It's one of my "chores", and one I actually enjoy. I can't hear anyone, nobody bothers me, I can just think. It's like walking, time to just let things simmer… But there's a story…

In May (2009), 3 days before my birthday, my Dh thought he'd show me how to mow closer to the bldg's.. as you know men tend to do… I was standing across the barnyard, a sprayer btwn us and the mower picked up a piece of steel. I have a 2" scar on my right shin, and my Mother was here for 12days before I could master the stairs… Needless to say… He'll never tell me how I'm doing it wrong… again 🙂 BUT… it could also have been MUCH worse. My husband has just left to go to a funeral for a past school friend who choked to death over Xmas. How horrible.

May was a crappy mth.. the week before the accident my FIL died too at 67yrs of age from a heart attack… He never woke up the morning of Mother's Day.

These kinds of things put life into perspective as well. So, although I have opinions, we live with, not for, autism. I lobby for myself at home, maybe one day my book will be longer than it's current 120pgs… But not today… Today we went sledding in the back yard.

— added by farmwifetwo on Wednesday, December 30, 2009 at 7:15 pm

We do things here whatever way works best for Jarrett, if I have to fight for it, so be it. His teacher in 2nd grade did not seem to understand that not everything works for him and when she asked, basically for a fool-proof way to get him to do something, she was flabbergasted when I had to tell her we just try different things until something clicks. Sometimes, like when he was getting migraines alot and his assistant asked how could we get him to tell someone when his head starts hurting instead of waiting until he starts vomiting to ask for help, it was as simple as telling him he needed to do so. Other times it's alot of trial and error before we find what works. The 2nd grade teacher in question also wanted us to medicate him and I still believe it was so she didn't have to deal with him. That was the year we had many outbursts, lots of behavior issues and I think it was because Jarrett could tell, she didn't like him, didn't want to deal with him. She was a very strict, stern woman and it made her less than happy to be told we just wing it. It is worth noting we did not have behavior issues like this before he had this teacher and we have not had them since.

— added by cameramom on Thursday, December 31, 2009 at 6:26 am

We lost an entire school year worth of learning because the teachers just did not "get" Nick. Instead of asking for a toy back, she would just go up to him and grab it from him…then wonder why he is screaming? Hubby went over to Nick, asked him to give the toy to him and that it was "all done" and voila, Nick happily handed it over. We had more calls from this school in regards to his behavior than in the two YEARS he spent at his first school. He even BIT one of the teachers-something he had never done. Everytime hubby or I went to the class, poor Nick was just left to his own-staring out the window. The boiling point came when hubby went to the class one day. The other kids (all on the spectrum) were sitting at a table enjoying a small party. Nick was left out-staring out the window again. Hubby conronted his teachers about this and they said it was just easier that way. He was furious! They offered for Nick to go to summer school, and we flat out refused. If they cannot teach him during the school year, why continue this during his summer?
This year, he is back in his first school and doing great. His teacher loves him and sees so much potential for him. We have not heard of any behavioral issues-and even his bus drivers adore him. We have found two wonderful ABA home therapists to work with him. From the very start we talked in length about how Nick learns. He was getting bored with the same programs over and over, and would stare out the window. We told them to change it up a bit-keep him on his toes and try all different things. They listened-and he learned more this summer from them than he did in 9 months of "school". We each have our own styles that speak to us.

Reading about some of these schools from the comments is absolutely horrifying. I sometimes feel like such a "newbie" to all of this. You all have dealt with this for so much longer and have so much more experience. I admire you all so much and wish you a wonderful 2010! Happy New Year!

— added by Amy on Friday, January 1, 2010 at 5:51 am

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