A Mother's Story (3): My Son is Not a "Disorder"

This is the Third in a series of articles written by Kari, a mother of two boys, including a 10 year old son who was diagnosed with Autism (read Part 1 and Part 2).  When Kari approached me with her compelling story, I asked if she would be willing to disclose it so that other parents could potentially learn from the path that she has taken.  I thank Kari for her willingness to let us into her life, and take us through her journey from discovery to what has helped her son thrive.

~elisabeth veltman

AFTER DIAGNOSIS, A HELPLESS BLUR

The weeks and months following Caden’s autism diagnosis are a blur to me.  Any time I stop to think about that time in our lives, tears fill my eyes.  It still happens now, six years later.  Without a doubt, I am an emotional person, but I have encountered other obstacles in my life and have adjusted emotionally.  There’s just something about feeling helpless, unguided, and vulnerable as a mother that I cannot erase from my memory.  Even though Caden has pulled through most, if not all, of his symptoms, the memories are still so strong.  I still find it difficult to speak the words, “when my son was diagnosed with autism”.  

Although it was a trying time for us, it was during those first weeks and months that so many pieces fell into place.  When I think about everything that worked in our favor and all the decisions that were made, I can’t help but think we had a little luck on our side.  It is because of this that I want to share our story.  

TWO BOOKS QUENCHED MY THIRST FOR KNOWLEDGE

One of my first outings after returning home from Caden’s diagnostic appointment in Pittsburgh was to the bookstore.  I had questions and I was going to find some answers.  I didn’t know what I was looking for, but I made myself comfortable in the parenting section of the bookstore and looked through every book they had on the topic of autism.  I came home with two, "Facing Autism" by Lynn Hamilton and "Overcoming Autism" by Lynn Kern Koegel and Claire LaZebnik.

"Facing Autism" provided me with an introduction to the many treatment options that were available.  Hamilton’s story of her son’s treatment was clearly presented and included their experiences with nutritional and biomedical therapies as well as speech, occupational and behavioral therapies.  After reading her book, and discussing it with my husband, we decided to try everything that made sense for our son and his symptoms, as long as we saw no possibility of causing him harm.  This book introduced me to the gluten free/casein free diet, probiotics, and supplements that showed promise. With a degree in dietetics, I felt I had an advantage over most when it came to adjusting Caden’s diet.  Her book pointed me in the direction of Bernard Rimland, who founded the Autism Research Institute (ARI) in San Diego in 1967.  I quickly contacted ARI and requested information from them.  It was this information that set the stage for what would become the focus of my own research for a number of years.  

"Overcoming Autism" was co-written by a therapist along with a mother of a child with autism.  This book was an excellent tool for me because I learned a great deal from each author.  Claire LaZebnik, the mother, provided me with justification that my emotions were typical for someone in my situation.  Lynn Koegel, who oversees The Koegel Autism & Training Center at the University of California, Santa Barbara, provided me with an excellent foundation for the type of therapy we came to rely upon.  The title itself led me to believe that overcoming autism was possible, and that quickly came to be what I expected.

FINDING THE RIGHT EDUCATIONAL FIT

It was the late spring of 2006 and Caden had been diagnosed with autism for just a few weeks as his preschool year came to an end and we had to start thinking about what the correct placement would be for the following year.  Caden’s special education case manager from the public school system suggested that we place Caden in their Preschool Initiative Program (PIP) at a local elementary school.  This program was targeted at getting a solid start for kids with special needs or English as the Second Language (ESL).  They told me that their speech and occupational therapies, with which I had been so disappointed during Caden’s first year of preschool, would be better in the elementary school setting because those therapists were school system employees as opposed to their contracted workers we had been dealing with previously.  

I went to meet the teacher of this PIP class and I wasn’t impressed.  I had only just begun to learn my way in this new world, but from my reading, one thing was clear.  According to the authors of Overcoming Autism, it was in our best interest to keep Caden surrounded by “typical peer models”, kids who weren’t struggling, who spoke English and could serve as language models and positive playmates.  When I toured the classroom, the students were gone for the day, but their pictures were on their cubbies.  I noticed that eleven of the eighteen students in that year’s class were Asian, which meant they probably didn’t speak English.  Because we live in a large university town, there is a lot of diversity.   I love this about my town, and would have loved to have Caden surrounded by children of different cultures, but not in our unique situation.  Differences in language could have been very confusing for Caden.  I proceeded to ask the teacher if there was a large ESL enrollment and she said that there was.  I had to wonder what good it would do to have Caden surrounded by a large majority of children who couldn’t speak his language, therefore couldn’t serve as good language models for him.  I wanted to do what was right, but I had our local school professionals telling me something completely different than what the leading experts in the field were saying.  I left feeling stuck.

Soon after, we attended Caden’s year-end performance at his current preschool.   As he stood on stage, I couldn’t help but notice the progress he was making there.  He was focused for the first time ever at one of these performances.   I couldn’t hold back the tears, right there in front of everyone.  I didn’t want him to leave.  I knew in my heart that the public school preschool wasn’t right for him at all.  He needed to stay where he was.  When the crowds cleared out, I still sat there crying.  My husband, who had been standing in the back of the church, along with the director of the preschool approached me.  I completely lost it when I made my first attempt at explaining what was wrong.  They quickly had a teacher take Caden and my other son, Nolan, to a classroom so we could talk.  That talk was another turning point for us.  

Sitting there that day, the three of us decided that Caden shouldn’t leave.  The director said that she would do whatever we needed her to do to make this right for our little boy. His current teacher had done a fabulous job with him and we decided to keep him in her class.  He would be repeating the three-year-old class, but that was fine.  He wouldn’t turn four until July, so he wouldn’t be much older than his new classmates.  The director assured us that it would be fine to let an outside aide or therapist come in to work with Caden, as long as that person went through all the background checks required by the other teachers at the school.  We didn’t know how we were going to afford this kind of set up, but it felt better than the alternative and you can’t put a price tag on peace of mind.  I admired her confidence.  I appreciated her willingness to take on the challenges that our son presented.  It would have been so easy for her to let us leave, but she didn’t.  What a big heart that woman has.  I was so thankful and I felt at peace with the decision.

CADEN’S ABILITIES

These decisions were being made as we approached Caden’s fourth birthday.  At this point, he had some language, but his development wasn’t following typical patterns.  He couldn’t answer a simple yes/no question.  If we asked him if he wanted a drink of water, he couldn’t respond with “yes” or “no”.  Instead, if he needed a drink, he would say “Do you want a drink of water?”  I knew him and I knew what he meant.  It worked for him, but it was far from being right.  If Caden wanted to play with a ball, he would look at the ball and simply say, “Ball”.  Once again, I knew what he meant, gave him the ball, and it worked for him.  He couldn’t ask the most basic questions.  “What’s that?” was the first question I taught him to say, following a technique presented in the Overcoming Autism book.  He was one month shy of turning four and I was so incredibly excited to hear it!  Caden had gotten good at labeling objects, but if I happened to tell him something incorrectly, it was very difficult for him to accept a correction.  One time, I remember looking out our family room window and pointing out a crane putting a roof on a new house.  From then on, every crane was a “crane roof”.   And I was “Mommy”.   He could label me, but he hadn’t yet figured out how to get my attention by saying, “MOMMY!”   Every night at bedtime as my husband was leaving the room, Caden would say “Gotta get a good night sleep, school tomorrow”.  As great as it sounded to hear a full sentence come out of him, we later learned that this was “echolalic speech”.  He was simply repeating something my husband said once.  
Caden’s sensory issues were still very difficult at this age also.  Crowds caused him great discomfort.  We couldn’t take him to football games, amusement parks, or even preschool performances without potential for an enormous meltdown.  We tried these things anyway and always respected his wishes to leave if he made them known.  

OUR BIOMEDICAL BEGINNINGS

Even before going to Pittsburgh for Caden’s diagnostic appointment, a seed was planted in my head.  A neighbor handed me a slip of paper that simply said “Gluten/Casein Free Diet”.  I knew that casein was a protein in dairy, but I wasn’t sure what gluten was at that point, even with a degree in dietetics!  The neighbor had an acquaintance whose autistic son had allegedly been helped by this diet.  So, after we heard the diagnosis, I somehow pulled my thoughts together enough to ask the doctor about her thoughts on this diet.  She explained that she couldn’t officially prescribe or even recommend it because there hadn’t been any scientific studies supporting it.  Off the record, however, she did say that there was a local, well-known therapy provider who had been reporting some tremendous success with the gluten/casein free diet (GF/CF).  We decided that it wouldn’t hurt to try!  

The inclusion of information regarding the GF/CF diet was probably the reason I selected Facing Autism from the bookstore.  Lynn Hamilton provided more than enough information to get my research started.  I spent the next few months busily preparing myself for implementing this dietary therapy with Caden.  I found sources for food online and at our natural health food stores.  Six years ago, gluten free foods were hard to find and it took me about three months to feel confident enough to make the leap.  This diet, along with a multivitamin recommended by the Autism Research Institute, were my first steps on what would become a very long path to restoring my little boy’s health, which I hadn’t yet realized was compromised.

CREATIVE SOLUTIONS TO LACK OF COVERAGE

When it comes to coverage, creativity and persistence were the keys.  At Caden’s diagnostic appointment, when we met with the developmental psychologist at Children’s Hospital of Pittsburgh, we briefly discussed a plan for moving forward with Caden’s therapies.  She suggested continuing with his speech and occupational therapies, but also wanted us to add behavioral therapy for Caden.  Once settled at home, I called our insurance company and inquired about how much of each specific therapy would be covered each week.  Maybe I was naïve, but I was shocked to hear that our insurance wouldn’t cover any of these therapies that had just been recommended by a doctor.  I was told that because Caden was “born with” this affliction, nothing would be covered.  What?!  I was disgusted.  If my son were addicted to heroin, rehab would have been covered, but therapies for autism were not.  I will never understand the logic behind that.  

In Pennsylvania, where Caden was diagnosed, children with an autism diagnosis qualified for Medicaid and received all of the necessary therapies, including behavioral therapy, but it wasn’t that simple in our state.  Children with an autism diagnosis did not automatically qualify for Medicaid.  They could apply for a number of waivers.  I don’t pretend to completely understand the system (which is different now than it was then), but I was told that Caden could apply for the Developmentally Disabled waiver.  The only problem was that there was a years-long waiting list for the waiver.  By the time his name got to the top of the list, the most crucial developmental years would have been gone.  The other possibility for some children on the spectrum was the waiver for the mentally retarded, but that wouldn’t apply to Caden.  We called the Medicaid office anyway.  And we waited a few days, maybe a week, for a return phone call.  We never received one.  Fed up with the inefficiency, my husband drove to the Medicaid office one morning and was determined to stay there until he had a solution.  The first woman he spoke to told him that he needed to speak to someone else.  That person was on her lunch break.  He waited.  He spoke with that woman who said she couldn’t help him, but another woman might be able to.  She was in a meeting.  He waited.  He finally met with a young, new employee. She put thought into our situation and came up with an idea.  It was possible that Caden could qualify for the Elderly/Disabled Consumer Directed waiver.   It wasn’t a sure thing, but it was the only chance we had.  About seven hours later, my husband came home with an appointment scheduled for a home visit and observation to determine eligibility.  

The Elderly/Disabled Consumer Directed waiver was designed to provide alternative care to people whose conditions are so severe that they should be placed in a nursing home.  Only the disabled person’s finances were considered and because Caden was a child and not gainfully employed, that wasn’t a factor. People receiving this waiver are able to hire their own home health aides to assist them with tasks of daily living; showering, grocery shopping, cooking, etc.  There were a few things that helped Caden qualify.  As strange as it sounds the fact that he still wet the bed helped.  Also, we had to say that if my husband and I were no longer able to care for Caden, there was a possibility that he would need to be placed in a nursing home.  Realistically, this likely wouldn’t have happened, but with my husband’s parents living out of the country and my parents caring for my paralyzed older brother, there was enough of a chance.  We were lucky enough to qualify.  

With the waiver approved, Caden received Medicaid as his secondary insurance carrier.  Therefore, speech and occupational therapies were now covered for multiple visits per week.  We quickly got started at a local clinic. I now had to drag two little kids to therapy visits, but that turned out to be the easy part!  Behavioral therapy, which was to be the foundation of our program, was not covered by Medicaid.  Not only that, I couldn’t find any qualified therapists in our area!  I was learning the basics from the Overcoming Autism book, and was incorporating what I could.  You can imagine how excited we were to learn that one of the therapists from The Koegel Autism & Training Center at the University of California, Santa Barbara was going to be offering an instructional clinic for professionals and caregivers at our local university…Like I mentioned earlier, luck was on our side!

“PIVOTAL RESPONSE TECHNIQUE” VS “APPLIED BEHAVIOR ANALYSIS”

The recommended behavioral therapy for Caden was Applied Behavior Analysis (ABA).  When I think of ABA, I think of a rigid therapy program where the child is sitting at a table, working on skills for multiple hours each day with a trained therapist providing rewards for accomplishments.  This proved to be impossible for us to acquire.  But that didn’t matter to me, because I was already finding some success implementing a few of the techniques set forth in Overcoming Autism.  This type of behavioral therapy was called Pivotal Response Technique (PRT).  The main difference between ABA and PRT is that the latter focuses more on incorporating therapy into the child’s normal routine.  It can be done at the park, while baking cookies, and while playing with toys of the child’s choosing.  Most importantly, I could be the one doing the therapy and we didn’t have to rely on, or pay, someone else to come into our home and work with Caden.  It seemed like we were heading in the right direction, but we were still unsure on how to proceed.  

My parents were able to come and stay with Caden and Nolan while we attended the day-long PRT clinic on campus.  We absorbed so much of what the speaker presented.  It made sense and I understood the underlying ideas.  To put it in the most simple terms, you had to make your kid perform a desired task to get rewarded.  When playing catch, we would have to make Caden look us in the eye and ask us for the ball before we tossed it to him.  If he sat down to play with a puzzle, we were supposed to hoard the pieces and prompt him to ask for each individually.  If he wanted a push on the swing, he had to ask.  Asking didn’t have to be an elaborate, polite question.  We were starting with just a few words and we would build from there.  

What we learned from the speaker at the clinic was probably not the most important accomplishment of that day. While taking a break in the lobby, I ran into a friend who had been involved in a playgroup that Caden and I attended when he was an infant.  Dr. Chris had moved away after earning her PhD and I had forgotten that the focus of her graduate work was autism.  She was sad to hear the reason we were there, but without hesitation she offered to help.   She was then serving as the director of an autism center about 75 miles away and she assured me that this was the route we needed to take.  All the pieces were falling into place.  

MY SON CAN IMPROVE

Soon after the clinic, Dr. Chris came to our house for her first observation of our life with Caden.  My husband and I were quickly impressed with her ability to get Caden to do what she was asking of him.  She seemed in control of the situation and we liked that she had high expectations for our little boy’s progress.  This was the first time I heard a professional suggest that Caden could be “indistinguishable from his peers”.  To us, that sounded like an excellent goal and we were relieved to hear that someone had intentions of helping our son improve as opposed to the goal of accommodating his shortcomings that the school district had seemed to adopt.  

Armed with a plan, Dr. Chris returned to our home on Caden’s fourth birthday.  The focus of this visit was to offer further training in the methods of PRT, as well as introduce a behavior protocol.  In my previous articles, I described the tantrums that Caden often displayed.  These behaviors occurred multiple times each day and they made life incredibly difficult.  They needed to end!  I had tried everything I was supposed to.  Caden would not simply stay in time out as other preschoolers often do. With such restricted language skills, we could not reason with him at all.  We needed to up our game and Dr. Chris knew what needed to be done.  She taught me about using a “least to most” prompting protocol.  The first step was to give Caden an instruction with little else.  If he complied, we would reward or praise him.  If he didn’t comply, we would put a little more into it.  For example, if we had asked him to put a ball away and he didn’t follow the verbal prompt, we would walk him to the ball, take ahold of his hand, and use our hand over his to put the ball away.  Once successful, we were to follow up with a reward or praise.  If at any point, Caden became aggressive, he went to time out.  Because Caden wouldn’t stay in a time out chair or spot, and holding him down wasn’t an option because he would often turn his aggression toward me, this was not an ordinary time out.  The plan was to put Caden in his room for time out and only let him out once he calmed himself down.  In an effort to demonstrate the procedure, Dr. Chris asked Caden to do many things, hoping to provoke a behavior and she eventually did.  We put Caden in his room for time out and closed the door, which he promptly tried to open.  We held it shut, with him screaming and crying on the other side.  It was heart wrenching.  I cried, but Dr. Chris stood her ground and assured me that this was the right thing to do.  I trusted her.  It seemed like an eternity and as soon as he calmed himself, we allowed him to come out.  His room was a disaster.  My four year old had flipped the twin mattress off of his bed.  The closet had been trashed and one of the doors had been pulled off its track.  Caden was a sweaty mess.  I took him to the couch and he fell asleep within minutes.  We were all emotionally exhausted.  

My Son is More Than a "Disorder"

With Caden asleep, Dr. Chris gave me instructions and then left.  I was to record every instance when Caden didn’t comply with our instructions.  I had to make sure to record the Antecedent (what happened just prior to the tantrum), the Behavior (what the actual bad behavior was) and the Consequence (what I did about it).  We referred to these as the ABC’s and in order to understand more about Caden, we needed to be aware of any patterns that might develop.   We removed nearly everything from Caden’s room so he couldn’t hurt himself and reversed the lock so he couldn’t escape.  I also needed to take care of Nolan so I couldn’t stand there and hold the door during these awful tantrums.  For the next few weeks, I focused on implementing this new behavior protocol with consistency and started recorded pages of data.  

I knew that downtime was not beneficial for Caden.  Any time he spent in “his world” stimming was wasted time.  For Caden, “stimming”, short for “self-stimulatory behavior”, involved spinning wheels, rolling trucks in front of his eyes, and watching TV close up, out of the corner of his eye.  For others on the autism spectrum, stimming can be more obvious with rocking, arm flapping and repetitive vocalizations.  I made it my goal to keep Caden actively engaged as much as I could throughout the day.  This, combined with keeping up with a toddler, was exhausting.  I knew I needed some extra help, and this is where we got creative.  With Medicaid, Caden qualified for respite care.  Respite care generally involves having someone assist with daily self-care tasks like bathing, dressing, shopping, etc.  I didn’t need help with those tasks, but I sure did need help with everything else!  Someone suggested that I contact the psychology department of our local university to inquire about posting an ad in that building.  The secretary had a much better idea and e-mailed our ad to every student enrolled in the program.  We had more than 60 applicants to work with Caden.  Because they were college students, they were willing to work for the $8.18 per hour that Medicaid was paying.  They were so interested in having the learning experience that they probably would have worked for free!  It took some time to weed through the applicants, but we ended up with three students who were simply amazing.  

Our Team UNCOVERs BASIC DEFICITS BENEATH ADVANCED SKILLS

With the initial program started, it was time to figure out exactly what was going on with Caden.  Dr. Chris suggested that we do some more detailed testing of Caden’s skills so we knew what we needed to work on.  The test that was recommended was called The Assessment of Basic Language and Learning Skills (ABLLS).  It provided a comprehensive review of skills from 25 areas including language, social interaction, self-help, and academic and motor skills that most typically developing children acquire prior to entering kindergarten.  Because kids on the autism spectrum have a tendency to develop some advanced skills, unlearned basic skills can be difficult to detect.  Caden could do many advanced intellectual tasks, but couldn’t ask for a drink of water.  This testing helped identify his deficits.  

When the ABLLS results were complete, we set up a training session at our home.  Kate, a Board Certified Behavior Analyst (BCBA) from the autism clinic served as our program manager and provided this training to the college students and my husband and me.  This was our “team”.  And our team was amazing.  One of the students, Erin, was specifically hired to attend preschool with Caden daily and had a classroom-appropriate set of goals to work through with him.  Stephanie and Amanda each came to the house once each week for a few hours and worked with Caden on his home ABLLS goals or hosted playdates with him so we could focus on improving his peer interactions and social skills.  We were assigned about four goals at a time to work through from the ABLLS testing.  When those were met, Kate moved us on to the next goals.  We strived for consistency in following the behavior protocol.  It wasn’t easy for anyone.  There were tantrums (from Caden).  There were tears (definitely from me and Caden, possibly from Amanda).  We all had a slightly different style, but we all found a way to have some success with Caden.  We talked at our team meeting about what was working and what wasn’t and we all learned together.  

By the time school started that September, our plan was set.  We were on our way.  We just didn’t know exactly where we were going.  

The author, Kari, will be returning this summer with Part lV in this series.  She will begin to discuss the powerful change in diet and how it helped launch her son into a new phase of healing.

READ THE FULL STORY IN 3 PARTS

A Mother's Story (1): The Subtle Signs of Autism and the Long Road Ahead

A Mother's Story (2): So This is Autism.

A Mother's Story (3):  My Son is Not a "Disorder"