Anger & Ignorance Two Parts of the Inclusion Solution

Today when I picked Nicky up from school and I asked his therapeutic aide my daily question. "How did it go today?" His aide took a deep breath, sighed and said, "Not so good. We had an incident." Following a long silence that seemed to last forever, he went on to explain how he had left the class room to take a break, while Nicky stayed behind with another aide. While on his break he heard a commotion coming from the classroom. He rushed into the room to see the girl Nicky sits next to huddled with her friends and yelling, "He Spit On Me, He Spit On Me!" The aide who had been watching Nicky had been called out of the classroom so Nicky was by himself when whatever happened took place. I was pleased to hear that the teacher in the room remained calm, despite the upset to both the aides and kids.

When I heard this I was puzzled because I know that Nicky's behaviors do not include spitting on people. Nonetheless, whatever did happen resulted in a young girl having saliva on her sweater - it was not that Nicky had intentionally spit on her. That said, I was relieved when his aide told me that some of the kids still joined him for lunch and they did not think Nicky had spit on her. At the same time I was sad to hear that any of Nicky's classmates were upset, frightened, angry, repelled or disgusted by his actions. I also worried that this incident might give them a reason to stay away from him or make him more of an outsider than he already is.

This is not the first time that an action of Nicky's - which other kids were not familiar with - had gotten him into trouble. In elementary school Nicky ran into the boy’s restroom right as the bell rang for recess instead of making his usual trip on his own before or after recess. The restroom was quickly filled with loud screaming boys running all around. Nicky went into sensory overload and began jumping and hand-flapping. He hand-flapped right into another little boy who thought Nicky had intentionally hit him. The boy turned around and punched Nicky dead in the mouth! That was a hard day.

In both of these situations I knew what Nicky was doing and I knew he never meant to harm anyone. He just doesn't have the same controls over his body that most of us have and take for granted. Nonetheless, I know he behaves in ways that people are not used to and it can be both disconcerting and frightening.

Today, I could see his aide was shaken. He was worried that Nicky had been unfairly targeted and would be ostracized. He was angry that kids were making fun of Nicky and that this moment might define him for the rest of the year, or longer. It hurt him because he wanted to protect Nicky and he wanted to protect himself. I know, because I have been there. I used to be the one who got upset and defensive when people stared at us, didn't include him, or treated him in any way that was unkind. I know, intellectually, that most people are not intentionally being hurtful or mean. But in the moment, when their words or actions hurt, their ignorance wasn't a good enough excuse. I was unforgiving and angry.

Over the years concern for Nicky's well being has grown larger than my need to control outcomes, larger than my embarrassment, larger than my disappointment, pain and fear. Slowly I've moved away from being so angry and judgmental about the things people say or do. Like a bonk on the head, one day I realized that my feelings were keeping me from being a larger part of making it better for Nicky and me. It was I who wanted Nicky fully included in his schools and community, not necessarily the other way around. It was I who was unable to see that these challenging situations were opportunities to teach people about Nicky so that he could be included in our community. This awareness made it helped me to accept that people don't understand Nicky or Autism. It has made it possible for me to respond to people objectively. Now I work to see questions/situations as opportunities for every person who talks to me to learn something about Autism.


I see questions like "Can he read?" or "Can he understand me?" or “Can I talk to him?” as opportunities to teach. Instead of stupid questions that used to hurt my feelings and make me angry. I now smile, take a breath, get in touch with my gratitude and I say things like "Wow, good question, thanks for asking. Yes, you can talk to him and, yes, he can read. He's a great reader and he writes too, as a matter of fact he spells better than most people I know. He memorizes almost everything so don't hesitate to ask him how to spell a word if you ever get stuck. He's a great kid who's got a great 'thinker' but his processor is messed up." So different from how I responded when I was angry and defensive.

Today I was able to hear the aide, I was able to put myself in his protective defensive shoes and talk about the lessons I'd learned. Specifically, I have come to believe that our role is not to judge, but to be the calm ship in the storms created by fear, a steady force that calms people who don't understand and use these tough situations to help others learn. It’s the only way I have found to really be part of the "inclusion solution", one situation at a time.

ABA Treatment at a Younger Age Leads to Faster Learning

I believe Nicky would not of come this far without intensive ABA intervention.
Nicky is in the category of kids who have "Regressive Autism". In other words,Nicky was developing typically. He was talking, playing, walking and then he suffered a loss of those acquired skills. He had stomach problems, allergies and ear infections since birth, and then he got pneumonia at 20 months. When he was completely recovered from his pneumonia the Nicky we had known was gone. He was replaced by a child who was absent, uninterested in his family and clearly fading away into a world of his own.

Because we were able to get a relatively swift diagnosis Nicky began a form of ABA called Discrete Trial Training at age 2 ( DTT or the Lovas Method), then moved on to the generalization of his skills using ABA techniques and some Pivotal Response. Nicky still needs ABA support today. I am CERTAIN that his intensive ABA program kept his from drifting totally away from us by providing him with a teaching method that made it possible for him to acquire skills and progress. Below, is the latest report on ABA for those of you who think it might be the right intervention for your family.

Higher Intensity of ABA Treatment at a Younger Age Leads to Faster Learning

Researchers at the Center for Autism and Related Disorders, Inc. (CARD) found that increasing treatment hours within an early intensive behavioral intervention program resulted in greater efficiency in new skill acquisition. This effect was the strongest in younger children within their study.
In Effects of Age and Treatment Intensity on Behavioral Intervention Outcomes for Children with Autism Spectrum Disorders, published in the September 2009 edition of Research in Autism Spectrum Disorders, CARD researchers Dr. Doreen Granpeesheh, Dr. Dennis R. Dixon, Dr. Jonathan Tarbox, Andrew M. Kaplan, and Arthur E. Wilke found that an increase in treatment hours and a decrease in child age predicted an increase in the number of skills learned per hour of treatment. For example, a child between two to five years old, receiving 150 therapy hours per month would master an average of 54 skills per month. If this same child received only 40 therapy hours per month they would on average master 21 skills per month. This is contrasted to a child between five to seven years, who would master 57 skills per month if given 150 monthly therapy hours. And an average of 15 skills per month if given 40 therapy hours per month.
The 245 participants were selected from a pool of clients receiving behavioral intervention services at a CARD, a nation-wide provider of Applied Behavior Analysis-based treatment programs for children and young adults with ASDs. The participants were between 16 months and 12 years old, received an average of 20 or more hours of intervention per month, and had mastered at least one skill per month. Participants were from California, Arizona, Illinois, Texas, Virginia, and New York.
“While several studies have addressed the association between age and treatment intensity or hours of therapy received, this study is one of only two that used such a large sample of children,” Tarbox said. “Plus, since CARD serves a large number of children across the United States, we were able to investigate questions at a scale that isn’t normally possible. The size and geographic diversity of the study population decreases the likelihood that there are regional biases and increases the likelihood that these outcomes can be generalized across a larger region.
Only one other autism treatment study, based in Canada, included a larger number of participants. It included over 300 children residing in Ontario, Canada.
The study outcomes showed that younger children learned faster than the older children, all other things being equal. It also showed that increases in therapy hours resulted in increases in new learned skills.
“This is what we have suspected all along, but it wasn’t until now that we had data across such a large group of children that really showed it clearly,” Dixon said. “It’s important to keep in mind, though, that this does not mean older kids on the spectrum can’t learn – they certainly can and do – it just means you get a larger effect out of the same dose of behavioral treatment when the treatment is implemented early."
The study also showed no point of diminishing returns as hours were increased. Meaning that 20 hours per week was better than 10, 30 hours per week was better than 20, and 40 was better than 30. The degree of improvement did not decrease as treatment intensity approached 40 hours per week.
“It’s common for therapy programs to max out at 40 hours per week, however, based on our findings the magic number of 40 hours per week may not really be the upper limit at all,” Tarbox said. “We may actually be able to get even better outcomes with a larger intensity of treatment – but of course, more research would be needed before we could make conclusions such as those."

Buzz Buzz Jolt Jolt, Balance the Journey Continues

It’s back, that “buzzing feeling” (like caffeine jitters except I don’t drink coffee). I have the sense of vibrating all the time and I notice that I unconsciously clench my jaw and I’m bouncing my leg. I get knots in my stomach. I’m like the man in the “Operation Game” who lays in wait anticipating the next electric shock. My electric shocks are just the realities of all there is to do, all that has to be done, all that has gone undone and all that is unknown in any given day. Buzz, Buzz, Jolt, Buzz, Buzz…..all day Buzz Jolt Buzz. Yikes!

This morning I decided I need to take a deep breath, calm the buzzing, and identify the source of my anxiety. I began by looking at how I spent my last 24 hours.

• Sleep - 7 hours
• Drive Kids to and From School - 4 hours
• Work to earn a living - 7 hours
• Cook and Eat 3 meals - 2 hours
• Clean House/Pick up after kids - 1 hour
• Nicky Care -2 Hours
• Evyn Care - 1 Hour
• Brush my teeth, go to the bathroom, dress, bath - ½ an hour
• Work out - ½ an hour
• Pay Family Bills - ½ an hour
• Grocery shop - ¼ hour
• Volunteer Work (including Blog, Boards, Task Force)- 1 hour
• Me Time - 1 hour

Gee I wish I had done this sooner. The problem is obvious, I CAN’T ADD!!!. I am currently going 27 hours and 45 minutes a day!

Now that I know the problem I’ll just review my “allocation of time” budget and figure out where to cut. Surely my little deficit will be easy to close.

• Sleep – This one gets eroded enough with bad “Nicky Nights”. I love sleep and we all know how ugly sleep deprivation can be. I will cut back to 6.5 hours

• Driving Kids to School: I’m working on this. However at this time there is no bus for Nicky. There are definite health and safety issues with Nicky walking 12 miles. So, no cuts here.

• Work: I have to pay for food, clothing, shelter, education, tax’s and health insurance. But I will try to work better in less time. I will cut this back to 6 hours.

• Cook and Eat 3 meals: I’m already sucking down dinner and even when I do sit down I eat like it’s my last meal. I’ve already cut this time down by planning and preparing some meals ahead of time. Eating out is too much for this family on week days and being with Nicky in a restaurant only makes his sister cranky. Delivery food has little that Nicky will eat and it’s overpriced, so I need to cook. That said, this one has been trimmed to the bone.

• Clean House/Pick up after kids – Some cuts have already taken place. I have given up on my teenager’s room and I have learned not to seek perfection. However to reconcile a previous time budget deficit, to make it possible for me to care for the kids and still work. I cut hours by working mostly from a home office – which means area’s that involve my work have to be kept neat. Another dead end.

• Nicky Care – This number has been on annual reduction. It used to be 14 hours. Between building a great team, good intervention, sleep and school it has been reduced to a lean and productive 2 hours where I do only Nicky. Any further reductions could result in harm. Already on days like yesterday when I had to take him unexpectedly to the Dr. he went over budget. We’ll have to work on that.

• Evyn Care - This number has been on annual reduction since Nicky’s diagnosis. She is wonderful and independent in a “teen” kinda way, however any further reductions could result in increased negative behaviors and harm common amongst unhappy teenagers, including but not limited to: drug abuse, depression, poor grades, defiant behavior, video game addictions, and lack of interest in positive activities. Gonna pass, again any further cuts could result in harm.

• Vanity Time - Brush my teeth, go to the bathroom, dress, bath – Yahoo!!! I think I can shave a few minutes if I reduce my liquid intake and eliminate 1 bathroom break a day.

• Family Bills – Gee I could give this up completely! NOT, but it was a fun thought.

• Grocery shop - Let’s see, if I gave this up I could give up cooking and eating and in total cut 2 hours and fifteen minutes. Sounds good, but I’m thinking someone will notice the kids are starving, and I’ll get reported to Child Protective Services and we then will all living in the system driving up CA’s already under funded budget. Guess, I have to pass on this one too.

• Volunteer Work – I hate giving this up. It gives me purpose beyond family and I get great joy helping as many people as I can. I will cut this in ½ and try to find more joy in what I have.

• Work out - I actually looking forward to having this budget increased. I will forgo the increase. But, I can’t give it up entirely. This is how I keep from going “Bonkers” and being the grumpiest mom in the world. It’s how I care for me, so I can be here for them. It’s how I will save on my long term care, it’s how I get my good health insurance rates. No, this one cannot be cut.

• Me Time - This is the first budget tapped with the other’s run over. I have given myself one hour a day to be a daughter, a sister, a friend, go to church, take a walk or just sit in quiet. This is the time that builds my spirit and gives me strength. It’s where I practice talking to adults, and learning that there is a world beyond “my life”. It’s how I stay centered. It’s my survival tool, the key to this caregivers long term health. To cut this would do irreparable harm to me and my family. I refuse to take me off the list.

I’ve cut a total of 2 hours and 5 minutes. I am going to work better and faster while sleeping less, hardly motivating.

Light bulb: Like the old saying “you can’t put a square peg in a round hold” my consistent routines and schedules are what I learned to do when I was single, they have nothing to do with my life now.

Perhaps what I need to do continue to work on accepting “what is”. My life is not tidy, routine, predictable or orderly. It is chaotic, unpredictable and demanding.

So instead of beating myself up, feeling inadequate and getting anxious for not getting it all done, instead I think I will applaud myself for the daily miracle I accomplish. I get 27 hours worth of work done in 24 