Behavior Intervention Training at Douglas College

I’ve been neglecting this site for most of this year, but I think I have a reasonably good excuse. I’ve been busy working towards a Behavior Intervention Certificate from Douglas College.

Pursing a BI Certificate wasn’t my original plan. My original plan was to take the Online Autism Outreach Training program though Douglas College to learn the basics of Applied Behavior Analysis (ABA). The program consisted of two credit courses:

  • CCD 1150: Teaching and Learning: Foundations: In this course I learned the principles of applied behavior analysis, such as reinforcement, punishment, prompting and fading, shaping and chaining, extinction and differential reinforcement, maintenance and generalization.
  • BHIN 1340: Behavior Intervention Lab: In this course, I recorded videos of myself working with Kiddo on various intervention goals and wrote reflections on them. I also participated in bi-weekly video seminars with my classmates, watching and reflecting on each others’ videos.

I loved the program. Before I enrolled, I had only a vague idea of what ABA was, pieced together from bits and pieces of information, much of it disparaging. The program gave a thorough grounding in the basics of ABA and showed me what a powerful teaching tool it can be when done well.

If only ABA training had been part of my degree in education, I might still be a teacher today. I think every teacher, parent, and manager — almost everybody, actually — would benefit from learning these principles and their application.

Douglas College offers the option to roll those two credit courses into its Behavior Intervention Certificate program, which is what I decided to do.

This summer I took BHIN 1256: Supporting Positive Behavior and Communication. In this course, I learned about augmentative and alternative communication (AAC), functional behavior assessment (FBA) for people with autism, and FBA-based interventions. I found the FBA component of the course particularly interested, and I realized that it is one component that has been missing from Kiddo’s autism intervention. I hope to remedy that this fall when we hire a behavior consultant to help us with some of his challenging behaviors.

This semester I’m taking CCSD 1140: Introduction to Practice, which is supposed to be the first course in the BI Certificate, but order-schmorder, and next semester I’ll take two half courses:

And then I’ll be finished. Ta-da! I’m not planning to become a behavior interventionist, although I would like to do some BI work with families in our area if I can somehow find the time while being self-employed as a freelance writer, homeschooling Kiddo, and being a student.

What’s Next?

My main motivation for doing the full BI Certificate is that I’ve decided to pursue a master’s degree in ABA and become a Board Certified Behavior Analyst (BCBA). I love being a freelance writer, and I want to continue freelance writing during and after earning my master’s. But I’m not sure about the viability of freelance writing as my sole source of income in the long term. Also, I would like to be able to write about autism from the perspective of a professional, as well as that of a parent.

Currently there are no BCBAs in my community, and I would like to be able to offer this valuable service to the families here. In addition to writing about autism and ABA, and working with families as a behavior consultant, I envision other opportunities to consult for the local school division and possibly the distributed learning school Kiddo is now attending (more on that in another post). Who knows, maybe I could even teach intro to ABA courses at the local community college, either as continuing education courses for parents or professional development courses for teachers.

It’s going to be a long haul to get there. I can only take one course because I’ll continue working as a freelance writer and homeschooling Kiddo while pursing my master’s. But I think the hard work, sacrifice, and cost will be worth it, though, for my long-term happiness and financial security. Yay!

Book Review: Uniquely Human by Barry Prizant

Uniquely HumanOne of my favorite autism books of last year was Uniquely Human: A Different Way of Seeing Autism by Barry M. Prizant, Ph.D. I eagerly pre-ordered this book before it was released in August because I was already a fan of Dr. Prizant’s work on the SCERTS Model, which is the primary tool we use to assess and plan Kiddo’s autism intervention.

Uniquely Human embraces the view of autism as a neurological difference rather than a disease or disorder. Dr. Prizant encourages his readers to see autistic behaviors as coping strategies for people who have social, communication, and sensory challenges and repetitive behavior patterns. Rather than working to eradicate these behaviors, he suggests working to understand the reason for the behaviors, provide support, and build on strengths.

I think the core message of the book can be summed up in this passage:

Autism isn’t an illness. It’s a different way of being human. Children with autism aren’t sick; they are progressing through developmental stages as we all do. To help them, we don’t need to change them or fix them. We need to work to understand them, and then change what we do.

In this book, Dr. Prizant isn’t arguing that autism intervention is unnecessary; he’s arguing that we need to shift the focus of autism intervention from eradicating autistic behaviors to understanding the function of the behavior, and then working to “enhance abilities, teach skills, build coping strategies, and offer supports that will help to prevent behavioral patterns of concern and naturally lead to more desirable behavior.”

This is the approach to autism intervention that resonates with me as a parent of an autistic child. The SCERTS Model is based on this philosophy, and that’s why I embraced it when Kiddo’s speech language pathologist (SLP) introduced us to it. (I’ll write more about SCERTS in another post.)

The first chapter of the book is called “Ask Why?” because that really has to be the basis for any autism intervention. How can we possibly figure out what to do about a behavior, or whether to do anything at all, without understanding the reason why the child is exhibiting that behavior. The thing I love about this approach is that some behaviors that seem bizarre can suddenly make so much sense once you know why somebody is doing them. (My next post will be about some of Kiddo’s perplexing behaviors and how learning his reason for doing them completely changed our reaction to those behaviors.)

The book then goes on to discuss typically autistic behaviors and challenges such as echolalia, obsessions (or as Dr. Prizant reframes them, “enthusiasms”), strict adherence to routines and rules, and difficulty understanding social situations. In part two of the book, he offers suggestions for parents and professionals working with individuals with autism. Many of the ideas in part two relate to the SCERTS Model, although he suggests other resources as well and provides extensive examples to illustrate his points.

Most of the information in Uniquely Human wasn’t new to me, but it was an easy and enjoyable book to read. Sometimes it’s nice to read a book or attend a course even if I already know the material because it can provide reinforcement of those concepts. Besides, there’s usually at least once tidbit of new and useful information. I highly recommend this book to parents and professionals alike, as well as people on the autism spectrum.

“Autistic” or “Individual with Autism”?

Kiddo behind a snow-brick wall

When I tell people about my son’s neurological difference, I say he’s “autistic,” not that he “has autism.” I’ve never questioned my choice of language, and until recently I didn’t even realize it was controversial.

It was only when I read the book, Uniquely Human: A Different Way of Seeing Autism by Barry M. Prizant, Ph.D. last year that I fully realized the implications of both terms. From Dr. Prizant’s “Author’s Note” at the beginning of his book:

I am also aware that others, in particular some adults with autism, prefer the label “autistic,” feeling that autism is indeed a defining characteristic and is essential to their identity and that person-first language implies that autism is inherently bad. (In the same way , you wouldn’t call someone “a person with maleness” but rather “male” or “a male.”) While I fully understand and respect that opinion, I have chosen otherwise for this book.

Until I read that passage, I hadn’t ever put serious thought into the words I used to describe Kiddo’s autism, and at first I wasn’t even consistent about it. I would say he “is autistic,” “has ASD,” “is on the spectrum,” or any number of other terms, but saying he “is autistic” always felt most comfortable to me.

I think there are a couple of reasons for that. One is that my first real introduction into autism — other than Rain Man — was Dr. Temple Grandin, and she describes herself as “autistic.” I love Temple Grandin and her attitude toward autism as being “different, not less.” Saying that kiddo “had autism” made me feel like he was somehow less. And “autism spectrum disorder” felt even worse.

I understand why the terms are controversial, but I say to each his own. I choose to say Kiddo “is autistic.” When he’s old enough to make the decision for himself, I will respect whichever language he prefers, just as I respect others’ right to choose the language with which they frame themselves.

ADEPT Training from the UC Davis MIND Institute

ADEPT Training Module 1The UC Davis MIND Institute is an amazing resource for parents of children with autism spectrum disorders and other neurodevelopmental disorders. They’re the organization behind the free autism course I took through Coursera, which I wrote about last week. They also offer two free online training modules through their Autism Distance Education Parent Training (ADEPT) program. This weekend I finished Module 1: Strategies for Teaching Functional Skills.

The module consists of 10 lessons, each of which can be completed in 15-30 minutes, depending on whether you watch all of the embedded videos and complete the quizzes.

Lessons:

  • Lesson 1: The ABCs of Skills Teaching
  • Lesson 2: Understanding Reinforcement
  • Lesson 3: Using Reinforcement Effectively
  • Lesson 4: Planning and Preparation
  • Lesson 5: Creating a Task Analysis
  • Lesson 6: Prerequisite Skills
  • Lesson 7: Prompting and Chaining (Part 1)
  • Lesson 8: Prompting and Chaining (Part 2)
  • Lesson 9: Setting the Stage for Learning
  • Lesson 10: Dealing with Errors

The lessons I found most useful were the ones on reinforcement, prompting, and chaining. After completing the lessons on reinforcement, Hubby and I implemented a token-based reinforcement system for Kiddo. (I’ll write a separate post about that soon.) The system has helped make transitions smoother and has helped motivate Kiddo to work on some of his social goals, such as staying out of other kids’ personal space and handling toys with care. I think the token reinforcement system has some side benefits of teaching delayed gratification and saving versus spending.

I also found the lessons on prompting and chaining informative. We use various methods of prompting quite a bit with Kiddo, and the lessons gave me a good reminder about the various nonverbal prompting options that are available, other than visual prompts, which we use extensively. It also gave me a good reminder that we have to avoid prompt-dependency and work on gradually fading prompts. I also learned about the concepts of forward and backward chaining, which were new to me. I now understand why backward chaining is more effective, and I plan to use it when teaching Kiddo new skills.

Hubby hasn’t gone through any of the lessons yet, and I doubt he will ever go through all of them so I just suggested a couple that were most useful for me. As a parent team, it’s important that we’re both using the same teaching methods with Kiddo so we’re not undermining each others’ efforts.

I’m so thankful for the UC Davis MIND Institute for developing such useful, free resources for parents of children with autism. I plan to work through Module 2: Positive Behavior Strategies for Your Child with Autism next. I’ll post about that one after I’m finished.

Autism course from UC Davis on Coursera

Yesterday I completed the Autism Spectrum Disorder course from University of California, Davis on Coursera. I earned a verified certificate with a final grade of 100 percent.
Yay, me! Autism Spectrum Disorder course from UC Davis on Coursera

The course wasn’t difficult and a fair bit of it was review for me, but I’m glad I did it, anyway. I always learn something useful from any course, and this one was no exception.

It provides a great introduction to autism and evidence-based practices in autism intervention. I wish I could have take this course back when I first suspected Kiddo might be autistic or when he was first diagnosed. It probably would have saved me some trouble deciding what to look for in a good support team.

The instructor is Patricia Schetter, M.A., BCBA, project coordinator for the Center for Excellence in Developmental Disabilities at the MIND Institute at UC Davis. The course runs for five weeks and covers these topics:

  • Overview of ASD;
  • Developmental differences in autism across the lifespan;
  • Patterns of strength and weaknesses;
  • Understanding sensory regulation differences; and
  • Using evidence-based practices.

The last two modules were of most interest to me. In week four, I gained a little bit more insight into my son’s proprioception difficulties (problems with feedback from muscles and joints). And in the final week, I learned which autism interventions are considered established, emerging, and unestablished.

Since this was just an introductory course, it didn’t go into depth on any of the topics, but it gave enough information for people to use as a jumping-off point. I’m now reading up on proprioceptive difficulties and plan to read two reports about evidence-based practices that were referenced in the course:

If UC Davis offers the course again, I would recommend it to anybody who has a child with autism or works with individuals with autism. It’s online and it’s free.

Visual support for petting cats

We have three cats, and Kiddo adores them. Sometimes he demonstrates his love by petting them gently on the head, and sometimes he does it by tackling them or grabbing their tails. No matter how many times we tell him to be gentle, it’s hard for him to remember in the moment, especially since he’s a very visual thinker and words don’t always stick. We use a ton of visual supports with him because you can tell him something a dozen times or you can show him a picture once. The difference between communicating with him verbally and visually still amazes me.

Anyway, when I was surfing Facebook a few days ago, a friend shared a diagram of where cats and dogs liked to be touched and where they don’t. It was hilarious and a tad inappropriate for a 5-year-old, but it gave me an idea to create a modified version for Kiddo. Visual support for petting catsI saved the Facebook image, printed it, traced it, colored it in, and laminated it. (My laminator was a great investment as a parent of a visual thinker.) I hummed and hawed a bit about what color to use for some areas, but eventually settled on the color scheme in this picture.

I explained to Kiddo that the green zones are places the kitties like to be petted, the red zones are places they don’t, and the yellow zones are sometimes okay and sometimes not, depending on the cat and its mood. (We also use The Zones of Regulation, so he’s familiar with green zone, yellow zone, and red zone language.)

After I explained it, he practically grabbed the visual support out of my hands and went to find the nearest kitty, which happened to be Rupert, our youngest cat and the one who is most tolerant of Kiddo. Kiddo followed him around, holding his visual support in one hand for reference, and petting Rupert in his various green and yellow zones with his other hand. He was particularly interested in the little green zone in front of the cat’s tail because he didn’t know about that before. He was absolutely delighted and even seemed a little bit relieved to finally have a cat-body map.

He doesn’t carry the visual around with him anymore, but he still looks at it frequently. And when he forgets and starts handling the cats roughly, I can bring it out as a reminder, which is so much more effective than my nagging voice.

Behavior tracking app to monitor autism goals

When we meet with Kiddo’s therapists, they inevitably ask me how things are going, and I almost always struggle to give them an accurate report. Life is hectic. Between working from home, keeping up with household demands, homeschooling Kiddo, and managing his autism, it’s hard to keep track of his day-to-day progress on various goals. I try to take notes, but in the midst of an autistic meltdown or other behavior problem, note-taking takes a back seat to restoring peace.

Behavior tracking appSo I downloaded a behavior tracking app for my smartphone, aptly named Behavior Tracker. I looked at some others, including Catalyst and ABPathfinder, but they’re expensive and seem more appropriate for service providers with multiple clients. Behavior Tracker Pro also sounded good, but it’s only available for iOS. That’s okay. I’ve been using Behavior Tracker, and so far it seems to suit my needs.

I entered all of Kiddo’s behaviors we’re trying to track into the app, and then each time one of them happens, I just tap the screen, select the behavior, and tap the checkmark to enter it. It also has options for including notes and pictures with each entry. So far I’ve been adding notes to document antecedents and consequences, but I haven’t tried including pictures yet. The app runs reports and has an export function, so I can save the reports on my Google Drive or somewhere else if I want.

Since I installed the app a couple of days ago, I’ve been documenting more behaviors than ever before, which should help us more accurately track Kiddo’s progress on our goals for him.

Assembling Our Autism Support Team

(Warning: This is another very long post.)

Despite all the reading I did during the year leading up to Kiddo’s diagnosis, I was surprisingly ignorant about autism intervention. In my head, once we cleared the hurdle of getting a diagnosis, we would just sign up for therapy. Easy, peasy.

Or not, as it turned out.

Confusion

We already had an occupational therapist, and Kiddo’s early childhood music teacher was also a certified music therapist, so we planned to start music therapy because Kiddo is so musically inclined. But we knew we also needed a speech language pathologist (SLP) and possibly a behavior consultant and behavior interventionist. We loved the SLP who had conducted Kiddo’s speech assessment, but her caseload was already full for the year.

As we began our search for professionals to support Kiddo’s development, we discovered that there are many different approaches to autism therapy, from Applied Behavior Analysis (ABA) to Relationship Development Intervention (RDI) to Social Thinking and many others. Trying to decide which one would be the best fit for us felt like an impossible task, and the plethora of conflicting information available on the Internet only compounded the problem.

ABA was the only method with a large body of research to validate its effectiveness, but a lot of anecdotal information on the Internet seemed to condemn ABA for teaching children robotic, rote behaviors.

I found a lot of stories about people’s positive experiences with RDI, and the information I read about it made sense to me on an intuitive level because it seemed like a much more natural approach, but I also worried about the lack of independent research into its effectiveness.

The SLP who conducted Kiddo’s speech assessment used an eclectic approach, including SCERTS, Social Thinking, and other programs. That approach appealed to me because we could apply the aspects of each one that made the most sense to us. But we still needed to more professionals to help us learn and implement the programs.

A couple of people I knew gave glowing recommendations of a particular SLP in our area. She offered a parent-led style of autism intervention, meaning she would train Hubby and me in the therapy methods so we could apply them at home 24/7 rather than dragging our son to therapy appointments. We met with her and immediately felt very comfortable, so we decided to try her approach.

Breakdown

Our SLP was warm and caring, and we enjoyed our sessions with her, chatting and learning about her approach to autism therapy. For several months, we met with her weekly so she could teach us how to communicate and interact with our son in a way that would support his development. Some of the things she taught us made a lot of sense: speak slowly, use fewer words, wait longer for his responses, reduce stressors, remain calm in the face of meltdowns, provide deep pressure to help him calm down, and so on.

But some other aspects of her approach bothered me. One major concern was that the parent training sessions didn’t involve Kiddo. We had to find somebody to babysit him so we could attend appointments. Although she did see our son a handful of times, it became clear that she didn’t know our son at all, and her methods increasingly felt to me like a one-size-fits-all approach rather than one that was tailored to his needs.

It also bothered me that she wanted us to restrict our son’s access to objects of fixation. At that time he was obsessed with clocks and had even taught himself to tell time (top and bottom of the hour only) by watching YouTube videos. He loved clocks passionately and for a while he had one he carried everywhere, even to bed. The idea of denying him access to a source of such comfort and passion disturbed me deeply and we chose to ignore that advice.

Despite my concerns, we continued with the parent training. We knew others had had great success with this particular SLP and we didn’t want to give up prematurely. But a couple of months into the parent training sessions, I felt myself slipping into a depression. I had struggled with depression for most of my adult life, but the years since Kiddo’s birth had been blissfully depression-free, even through the stress of waiting for his autism diagnosis. So in the months leading up to his fourth birthday, when I started to feel that familiar dark cloud creeping back into my brain, I was scared.

At first I blamed stress. I was juggling my work as a freelance writer with my responsibilities as a stay-at-home mom to an autistic preschooler, and Hubby was out of town for work one week each month. One day when Hubby was away, I walked into our SLP’s office for an appointment and unexpectedly burst into tears. Usually my son didn’t attend our appointments, but on this occasion he was with me. When I broke down, the SLP quickly abandoned our scheduled plans and instead guided us through a slow, quiet session involving lots of deep breathing and deep pressure. The activity was supposed to help us regulate our emotions, and I did manage to stop crying, but that dark cloud in my head was still growing.

The SLP and I talked about my increasing stress level, and she suggested visiting a couple of daycare providers in the area who had experience with her methods. I had always resisted the idea of putting my son in daycare, but I considered the idea and visited two of them. Logically, it seemed like the right thing to do, but I couldn’t bring myself to commit to the idea. If I was going to put Kiddo in childcare –- something I had never wanted to do –- I thought it made more sense to hire a behavior interventionist trained in autism who could work with him one-on-one rather than putting him in a general daycare with a bunch of other children and staff that didn’t have autism training. While our SLP never said so explicitly, I always felt like she was steering us away from other autism professionals, and her apparent belief that we should follow her approach exclusively was in stark contrast to my desire for an eclectic approach.

Most of all, there was something about the way this SLP approached autism intervention that made me feel like our son was broken. Until that time, I had never felt that way about his diagnosis. In many ways, I had seen his autism as a both a gift and a challenge because it did provide him with some gifts, such as his incredible memory, strong visual-spatial skills, and ability to focus on a task. Our SLP never said anything explicitly that suggested Kiddo was broken, and in fact she was horrified when I told her how this method of intervention made me feel. I think it was because this approach made me second-guess everything I did with or said to Kiddo, and because this approach seemed to focus exclusively on the deficits of autism and the risks to Kiddo’s future well-being, without also celebrating his particular strengths.

The decision to end our professional relationship with that SLP was agonizing. I still wasn’t any closer to knowing which type of autism intervention was best, and I wondered if we were giving up on this SLP too quickly, but as my stress level increased and my depression deepened, I knew we had to make a change. It was hard to do, especially since we liked this SLP so much on a personal level, but we had to do what we felt was right for ourselves and our son.

Assembling Our Team

Almost immediately, my mind cleared and my mood brightened, and I knew we had made the right decision.

By this time, it was April. I called the SLP who had done Kiddo’s speech assessment, and she said she would try to fit him into her caseload when the new school year started. Within a couple of weeks we hired a behavior interventionist (BI) I had met at StrongStart, the play-based early learning program Kiddo attended. She had a degree in early childhood education, many years of experience working with autistic children, and we all felt very comfortable and relaxed with her immediately.

Kiddo responded to his BI right away. Several times a week she would pick him up at home and take him out for a few hours to work on his communication, social interaction, emotional regulation and general life skills, either in a group setting like StrongStart or one their own at the park, library, restaurant, stores, or wherever. We didn’t follow any specific program. Rather, Hubby and I would chat with the BI when she came to pick up Kiddo, and we would let her know about any particular challenges Kiddo was having, and during her time with him she also identified areas where he needed help. As a result, our intervention goals for Kiddo were very dynamic and flexible, and he conquered many of his challenges very quickly with the help of his BI.

I continued reading as many books as I could about autism and attending courses. Hubby and I both attended one taught by the authors of The Incredible Flexible You (TIFY), a Social Thinking curriculum for early childhood. We loved it and couldn’t wait to start implementing it with Kiddo. I felt empowered. Reading and taking courses and learning from a variety of autism professionals was giving us the knowledge and skills to help Kiddo with his challenges in a way that worked for all of us.

By the fall, Kiddo had already made huge progress, and in September he finally began working with the original SLP we had seen for his speech assessment a year earlier. She began by conducting a new assessment of his skills based on the SCERTS model, and then we began seeing her weekly. Not only did Kiddo attend the sessions, but he was the focus of the sessions. Our SLP would work with him one-on-one while including me in the activities so I could learn the methods she was using with him. This approach to parent training made much more sense to me because involved all of us and it was tailored to Kiddo’s individual challenges and incorporated his strengths and areas of interest as support tools.

Still Going Strong

I think almost every family with autism goes through a period of struggling to find the right professionals to work with, and we were no exception, but I love the team we have now. We see Kiddo making progress on an almost daily basis, and Hubby and I feel supported by our team, not stressed out by them. As hard as it can be to let go of those professionals who don’t click, I think it’s essential, for the sake of every member of the family.

I think the key to finding the right team is to educate yourself as a parent, through books, courses, and work with professionals, and to really listen to your gut. If your head tells you a method should be working, but your gut tells you it’s not, listen to your gut and try something different. You can always go back and try something again later. Autism intervention isn’t a road –- and there certainly is no map; it’s a city full of two-way streets, detours, and fabulous destinations.

Our Autism Diagnosis Story

Warning: This post is long.

Autism has been on my radar since Kiddo was born. It’s everywhere in the news these days. Plus, my husband and I are older parents, which increases our likelihood of having an autistic child. And we both have some autistic traits, which also increases the chances of autistic kids. We’ve been on the lookout for signs of autism since Kiddo was born, but nothing raised any red flags in our mind.

January 2013

That changed one day when Kiddo was 2.5 years old. It was a day I’ll never forget. We were at Mother Goose, an early literacy program that’s essentially an extended circle time with parent participation. It was winter, and Kiddo and I were putting our boots on to leave when a little girl we knew ran up to her mom and said, “Mommy! I put my mat away!” It was such a simple little moment of a child sharing her achievement with her mom, but it shook me to the core. I’m sure I must have stood there, staring at her with my mouth agape. She was a few months younger than my son, but my Kiddo had never, ever come up to me to tell me about something he had done. Not once.

That was the exact moment when I began to wonder if he might be autistic.

I started talking to a few people who knew him well for their thoughts on the matter, and I was shocked to discover that some of them had already suspected autism. But nobody seemed sure.

February 2013

At first I resisted the idea of getting him assessed because by labeling Kiddo as autistic, it felt like we would be labeling him as disabled, and I didn’t feel like he was disabled. Different, yes. Disabled, no. To me, he was just the quirky, bright little boy I adored, and labelling him as autistic felt like a stigma. To me, it felt like the world expected everybody to fit into a little box called “normal,” and that anybody who didn’t fit into that little box would get a label slapped on them, identifying them as “not normal.” I resented that feeling. I just wanted the world to accept my boy for who he was.

But at the same time, I had a burning need to know.

I started reading extensively, but the more I read, the more confused I became. I would read one description of autism, and it would fit my son to a T, and then I would read another description that didn’t fit him at all. Of course, part of the reason for my confusion was the fact that autism is a spectrum, and every autistic kid is different. But another part of the reason was because he didn’t seem to have any of the major “red flags” for autism.

What I didn’t understand at the time was that the “red flag” characteristics of autism are differences of degree, not black and white absolutes.

These are a few of the common characteristics on those lists:

  • Absent or delayed speech
  • Lack of communicative gestures (pointing, showing, reaching, waving)
  • Lack of eye contact

I didn’t see those red flags in my son. His speech development seemed to be on track, and his pronunciation was ahead of his peers; he pointed at things and would reach to get picked up; and he would make eye contact. (Only later did I learn that although he spoke, used gestures, and made eye contact, he didn’t do those things as much as a neurotypical kid. He spoke, but he only communicated to get his basic needs met, and the gestures for showing and waving were completely absent.)

Hubby and I both filled out the online Modified Checklist for Autism in Toddlers (M-CHAT), independently so we wouldn’t influence each other’s answers. We both had the same result: “Low risk for autism.”

April 2013

As time went on, I couldn’t stop reading and wondering, and by April I felt like we should seek a professional opinion. Our first stop was our family doctor. Hubby and I went in armed with a copy of Does My Child Have Autism and a list of our concerns. As it turned out, we didn’t need any ammo. Our parental concern was enough to get a referral to a pediatrician who specializes in autism. Bonus points to our family doctor.

June 2013

We had to wait a couple of months to get in to see the pediatrician. In the meantime, Kiddo had turned three.

The pediatrician spent a couple of hours with us, chatting and asking us questions while she observed our son. In the end she said that she didn’t see enough red flags to be convinced he was on the spectrum, but she did see enough to warrant further investigation, so she referred him for an autism assessment.

The wait list was six months long. In preparation for the assessment, we were required to take him for a speech assessment with a speech language pathologist (SLP). I was annoyed. My son’s speech was just fine. A speech assessment was just a waste of time, I thought. It wasn’t.

September 2013

The SLP was wonderful. She evaluated my son over three separate visits, two in a clinical setting and one at StrongStart (a BC early learning program Kiddo attends). What I immediately realized, and kicked myself for not realizing beforehand, was that she wasn’t just evaluating his speech, she was evaluating his communication, including facial expressions, gestures, and eye contact.

She confirmed my assessment that his speech was on track, but she said his communication skills were severely delayed. He was incapable of participating in a conversation, he didn’t use many gestures, and while he did have eye contact and point at objects, he didn’t do those things nearly as much as he should. The SLP, who had considerable experience with autistic kids, said that while she wasn’t qualified to give a diagnosis, she strongly suspected he was on the spectrum and that he would probably get a diagnosis of Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS).

That sent me down the PDD-NOS research rabbit hole. It’s basically a catch-all diagnosis for kids who are on the autism spectrum but don’t meet enough of the diagnostic criteria for autism or Asperger’s.

From that point on I no longer worried whether Kiddo was on the spectrum or not because it seemed fairly certain he was. Instead, I started worrying that he wasn’t on the spectrum enough and wouldn’t get diagnosed as being on the spectrum. In BC, kids with an autism diagnosis get $22,000 a year of funding for intervention until they’re six, and after that they get $6,000 a year. It’s a sweet deal.

October 2013

Although we wouldn’t get our autism funding for intervention until after we had an official diagnosis, our local Children’s Association, which offers services for kids with special needs, was there to help right away. We started seeing an occupational therapist and a support worker. The wait for Kiddo’s autism assessment seemed to be endless, but the team at the Children’s Association helped make it more bearable. I knew how critical early intervention would be, and our occupational therapist at the Children’s Association became the first member of our intervention team. I also started attending the local Autism Support Group for parents.

December 2013

Finally the day came, six months after the pediatrician had given us the referral. It was by far the most anticipated day of my life since my son’s birth.

The assessment took a couple of hours. First my husband and I met with a pediatrician and answered a bazillion questions about our son while he was in another room with a psychologist getting a cognitive evaluation. Then the pediatrician played with him for the better part of an hour while we watched. It seemed like simple playtime to Kiddo, but my husband and I could clearly see the various behaviors she was testing him on with each play scenario. Afterwards the pediatrician and psychologist had a short meeting, and then they called my husband and me into the office for the diagnosis.

The official diagnosis was Autism Spectrum Disorder (ASD).

I was relieved that he had been diagnosed as being on the spectrum because it meant he would get funding for intervention, but I was thoroughly annoyed with the ASD diagnosis. I hadn’t expected them to use the newly revised diagnostic guide (DSM-5) that lumps all forms of autism under a single label rather than differentiating between autism, Asperger’s, PDD-NOS, etc. I thought that change wouldn’t take effect until well into the new year, but I was wrong. I asked the doctors what his diagnosis would have been under the old guide (DSM-IV), and that was when I got a surprise: autism.

Not PDD-NOS as I had expected, but full-blown autism.

Despite the surprise that Kiddo’s autism was more severe than we had suspected, my initial response to the diagnosis was relief. After a full year of wondering, we finally had a definitive answer.

The next few weeks were a whirlwind of paperwork, phone calls, and appointments as we lined up Kiddo’s autism funding and intervention team. (I’ll leave the story of assembling our intervention team for another long post.) I rode an emotional roller coaster during those first few weeks, from the relief of diagnosis, to the lows of worrying about his future, to the stress of trying to find therapists in the middle of the (school) year while time ticked by during this precious and critical time window of opportunity early intervention.

April 2015

Fast-forward to today. Kiddo has been getting intervention for a year and a half now, and after some initial false starts, we have found the right-for-us team of professionals, consisting of an occupational therapist, music therapist, behavior interventionist, and speech language pathologist. The difference between Kiddo back then and Kiddo now is astonishing. He has come so far.

We recently went to visit my mom, and while we were there we went to a playground beside the local preschool. It was a Saturday, and the preschool teacher was there doing some work, so she gave us a tour and we spent a little bit of time with her. After I took Kiddo back out to the playground, my mom continued chatting with the her and told her that Kiddo is autistic. The preschool teacher, who has decades of experience, said she can usually identify autistic kids almost immediately, but she hadn’t seen any indication of it from our son.

Now, I’m not saying that Kiddo has overcome all of his challenges. He hasn’t, and there are new challenges yet to come. But he has come such a long way. And for that, I credit his awesome team of therapists, the government of BC for providing the funding to pay for intervention, our family and friends for their support, and my husband and me for our hard work.

But most of all, I credit my son because he has worked the hardest of all of us. He is autistic, and he is awesome.

First Day of School

Yesterday I started officially homeschooling Kiddo. Well, not officially as far as the government is concerned because I’m not going to enroll him in SelfDesign until he’s 6 years old –- right now he’s almost 5 –- but yesterday was the first time we cracked open the books and started lesson 1 in the math and language arts curricula I picked out for him.

After spending many hours researching various homeschool curricula, I settled on RightStart Math Level A for math and Logic of English Foundations A for reading and handwriting. Both programs get rave reviews online, and they seem to have the right logical-literal, hands-on, fun approach for my autistic kiddo.

I bought the programs about a month ago, but I procrastinated on getting started. First of all, there’s no rush, and second of all, I was scared of what his reaction might be. He loves to learn, but he typically resists anything he perceives as work, and I didn’t want to scare him off. That being said, he has been showing increasing interest in learning to read, and although he has known his letters and letter sounds since he was barely two years old, reading the sounds together to decode words was not coming naturally to him. I decided to try a formal approach to learning reading. At his own pace. Without pushing him.

Last night I asked him if he wanted to “do school” with Mommy. He said yes, so we sat down on the couch together and opened the box I had prepared with the materials for Lesson 1 of Logic of English Foundations. We talked about the sounds p, b, f, and v, how they are formed in the mouth, the movement of air when we say them, and the vibration of our voice box when we say voiced sounds, and then we did a worksheet identifying compound words. He was rapt. I had planned to leave it at that for our first day, but he wanted more.

We moved on to the handwriting portion of the lesson. We learned about the baseline, topline, and midline on his writing board, and then he practiced the “swing” stroke. He struggled with this part a bit, but kept at it.

Surely he’s done for the day, I thought, but no. So we moved on to math. Thankfully, I already had a box prepared with the materials for Lesson 1 of RightStart Math.

We sang the Yellow is the Sun song and showed the numbers with the fingers on our left hand. We “subitized” the numbers 1, 2, and 3 on our fingers, with colored tiles, and with tally sticks, and then Kiddo identified quantities of 1, 2, and 3 objects around the room.

All of the lessons were short and simple, and not enough for Kiddo. He wanted MORE! I hadn’t prepared materials for lesson 2 in either program, so we did some more handwriting practice on his whiteboard, and then I let him work in his Telling Time workbook that his Gram bought for him. (Clocks are a passion of his, and he taught himself how to read the o’clocks and half-pasts on an analog clock when he was three years old, although other times still confuse him.)

In the end, I had to console him with a promise that we could “do more school” tomorrow.

Our first day of homeschool blew me away. I was so worried that he would perceive it as “work” and protest, but his reaction was completely the opposite. I think part of it was that he enjoyed the one-on-one time on the couch with Mommy, and I think the other part was that he was genuinely eager to learn and the materials were interesting and not too challenging for him. I know we will have bumps in our homeschooling road ahead, but the first day was fantastic, and I’m thrilled!