Forging New Pathways

Autism and Seizures: Part 1 - Our Story

2010-02-18T15:40:00Z

Guest Author: Laurel Joss, M.A, ECED, RDI® Program Certified Consultant.

I have been an RDI® Consultant for three years and an RDI® parent for seven. I started RDI® back when it was done in an empty room full of beanbag chairs. My son was four years old at the time. He’d been diagnosed with autism a year earlier, and like many mothers of newly-diagnosed children I spent a lot of time on the internet searching for help. Mainstream medicine offered little to children like my son, so I spent a lot of time on autism parent groups networking with other parents. I started hearing about a book called Solving the Relationship Puzzle, by Dr. Steven Gutstein.

I ordered the book and was intrigued. Here was a program that offered more than “social skills”. This program could actually help my son to learn the “why bother” of social interactions, to help him to become intrinsically motivated to form strong relationships with his family and eventually with peers. I was excited when I heard that Dr. Gutstien was coming to my town for a two-day seminar and I registered. His presentation made sense to me and the video clips he played were nothing short of amazing. If I hadn’t seen the “before” clips I never would have believed that some of these children were on the autism spectrum at all. I wanted that for my son.

Luckily, there was a certified consultant in my area so I signed up for her waiting list and began reading more of Dr. Gustein’s books. At that time, there were no parent objectives. There was no online operating system. I cleared a space in my house and filled it with beanbag chairs. I started doing some of the activities in Dr. Gutstein’s book. Eventually our name came up, and we started to work with a consultant.

The program has evolved over the years to its current form, which starts with parent training, then leads into specific child objectives. The early child objectives in Stage One guide parents through re-establishing a co-regulatory relationship with their child. Co-regulation is the dance of social interaction, in which your actions are influenced by, but not controlled by, your partner’s actions and vice-versa. When you are engaged in conversation, you are involved in a co-regulatory exchange. Once simple co-regulation is mastered, parents work on guiding their child in coordinating their actions together. Once this is mastered, you move on to Stage Two, where the foundations of collaboration start.

My son had mastered Stage One, but some of the Stage Two objectives continued to elude us. In Stage Two, there are several objectives on nonverbal communication, specifically, parent and child learn to have simple, back and forth conversations using only facial expressions, gestures, or prosody. My son was able to do so with gestures, but facial expressions were always a challenge for him. It was frustrating to me that he was able to master objectives in higher stages, yet his difficulties with facial communication was always an obstacle. Finally, my consultant suggested that we have him checked for focal seizures.

Focal seizures are abnormal electronic disturbances that remain in a limited area of the brain. They sometimes turn into general seizures, which affect the entire brain. Symptoms vary depending on which part of the brain is affected. They may include abnormal muscle contractions, complex repetitive movements, lip-smacking or chewing and swallowing without cause, forced turning of the eyes, numbness or tingling, and mood changes.

My son had one obvious seizure at school three years ago. He had an EEG, an MRI, he was on Trileptal for a year and he did not have any other obvious seizures during this time. He also remained “stuck” in the same RDI zone. After a year on the meds, his neurologist did a follow-up EEG, which showed up clear, so we took him off the meds. He seemed ok at first, but after a month or two we noticed some disturbing trends:

His ability to read and use facial expressions, which was never great to begin with, completely went away.
He started occasionally eating until he vomited. The first time this happened it was 4th of July, and I thought he’d just eaten too many s’mores. After the third time it happened, I knew there was more to the problem.
His sleep patterns were disturbed. It took him hours to fall asleep, and it was really difficult to wake him up in the morning.

These were just a few of the more obvious things we noticed at this time. My consultant had been working with some other families whose children were suffering from seizures and she suggested that he might still be having problems there. They were seeing a doctor in the northern suburbs of Chicago who specialized in autism and seizures. He did a test called a brain SPECT, where they inject your child with dye and take a full color picture of the brain so they can see what is really going on.

My son’s brain SPECT showed mild seizures in the center part of his brain. They were so mild that they did not show up on an EEG, but they were enough to affect his ability to read and use facial expressions, among other things. We started him on a low dose of Depakote which we gradually increased under our doctor’s supervision. It was not an easy time – we had lots of ups and downs. He would get more impulsive, more obsessive for a few days after each dosage increase but then he would suddenly improve.

At this point, he has improved so much. Last week we were making French toast. As he was cracking the eggs, some of the egg goo got on his fingers. He looked up at me, laughing, and said “Ewww!” It was the “engages in back and forth dialogues using only facial expressions” objective that had all but disappeared! I made a face back and said “Ewww!” He laughed, cracked the second egg, and purposely stuck his fingers in the goo so we could do it again.

I am sharing our story in the hopes that it might help some other families out there who are stuck. I don’t claim to be an expert on seizures and autism yet, though I am certainly on the front lines learning all about it. Today I found out that my younger son, who is not on the spectrum, is almost certainly also having seizures. It hurts a bit, but at least I know where to go for help.

The thing is, we knew that he was having seizures, but our HMO neurologist just did the bare necessary tests and stuck him on a drug that really did not help him. It was only after my consultant referred me to this other doctor, who is of course out of network and therefore out of pocket, but who actually understands the link between autism and seizures, that we finally had some results. So if anybody out there is working with a child who sounds like mine, who is bright and able to do higher stage things, yet can’t seem to get some of the stage 2 basics, this might be a route to check into. However, it is really important to find the right neurologist. My son’s doctor has read EEGs that clearly showed seizure activity, but the doctor dismissed it as “part of autism”. It is so important to find someone who truly understands how the brain works, and who is able to do the brain SPECT, and who will find the right medicine.

Laurel Joss is an RDI® Program Certified Consultant in Chicago Ridge, Illinois. She has a master’s degree in early childhood education. She has two children, one of whom is on the autism spectrum and has been using RDI® strategies for the past seven years. Visit her blog at remediatingautism.blogspot.com. Watch for the Part 2 to this post coming soon!

Love Isn't Always Enough

2010-02-01T14:51:00Z

Guest Author: Diane Morris

We like to think love has power, that it forges a connection stronger than space, time and the many obstacles life can throw between two people. Countless stories and songs attest to humanity's unwavering belief that love is more than an emotion.

So you can imagine my feelings of utter failure as a mother and a human being on one of the many days when my son Theo, then age six, used every ounce of his considerable strength to try to beat the daylights out of me. I pinned him to the floor to protect myself, softly told him how much I loved him and begged him to calm down. When he seemed to relax, I leaned in to kiss him and he tried to head-butt me.

It was early 2008, and my husband Greg and I had officially pulled Theo out of school, where he was in a classroom for children with autism. I decided to home school him after one of his tantrums ended with his teacher's arm in a sling.

When Theo and I began spending our days together, his meltdowns were hard to predict, and once they started neither tenderness nor toughness could stop them. Often, his rage subsided only when we were both exhausted and in tears. Not that he was always such a hellion. He could be playful and sweet. But unexpectedly, something would set him off. Greg and I were afraid to take him anywhere, and our lives revolved around trying to avoid the next eruption. His older brother, Kenny, a gentle and passive kid, was terrified of him.

For months, I struggled to improve my relationship with Theo. Things got a little better, but mostly my earnest expressions of motherly love were rebuffed by raging hands and feet. I grieved over my failure. Could he not feel my love? Could he not understand it? Why was my love for him, which I felt so deeply, so hopelessly inadequate?

Never did I think I would give a six-year-old antidepressants, but in desperation Greg and I gave it a try. The medication slowed his aggression, so instead of going from 0 to 60 in 0.5 seconds he went from 0 to 20, giving me a chance to understand what was going on. Theo wasn't angry, he was anxious. The poor boy had a million routines in his head, and whenever things didn't go exactly how he expected he was overcome with anxiety. Perhaps the predictability of a tantrum was easier for him to handle than the unpredictability of day-to-day life.

With the help of Amy Cameron, a Relationship Development Intervention Consultant in Apex, I learned how to build Theo's trust in me. He discovered I was there to help him and guide him, not to suppress his natural energy or force him to behave. He learned that I respected his feelings and that I would work with him so we both got what we needed. I read Ross Greene's book, The Explosive Child, and came to understand his inflexibility as a learning disability, not a behavior issue, that could be addressed with kindness, not punishment.

Today, Theo is a different person. He is happy and helpful, and he loves his family. He still has his moments, which is understandable since, at age eight, he's developmentally two or three years old, and his communication skills are severely limited. But his occasional meltdowns are now minor incidents instead of tear-the-house-down events.

Love, no matter how strong, is just an emotion. But knowledge, understanding and respect have the power to change a child and save a family.

Reprinted with permission from newsobserver.com.

The Mechanics of Attention

2009-09-16T19:13:00Z

Have you ever walked into a crowded room and been unable to see a friend standing right in front of you?

New research from MIT suggests “when we look for something in our environment, our attention scans one thing at a time, using a serial as opposed to a parallel process.”(Buschman, Miller) This means that in a crowded room or atmosphere, we are not always going to be the initial center of attention for our spouses and friends, instead we have to wait our turns as their brains process familiarity and finally settle on the face with features that are recognizable. And, in turn they have to wait for us to recognize them as we simultaneously scan the room, pausing briefly on one face at a time. But, what controls this rate of recognition? By studying monkey brains, scientists Miller and Buschman at MIT found that visually our brain waves “act like a built-in clock that times the shifts of attention from one position to the next”(Buschman, Miller) making sure that our visual attention moves at a rate of 25 times a second and does not go to waste before we reach an important discovery.

What does this mean for other areas of the brain? By analyzing the timing of the proverbial visual shifting attention clock (our brain waves) scientists may be able to further our understanding of how we process across other regions of the brain. It is their hope that brain waves act as a general metronome for the brain, ensuring that all of our processes are kept in synch, in step with each other and dancing to the right music. Bringing us closer to improving our understanding of conditions like attention deficit disorder, and perhaps even towards finding ways to increase the rate of cognition in the brain.

"Serial, Covert Shifts of Attention during Visual Search Are Reflected by the Frontal Eye Fields and Correlated with Population Oscillations."
Timothy J. Buschman, Earl K. Miller.
Neuron, 63(3) pp. 386 - 396, 13 August 2009.

The Intellectual Baby

2009-08-25T14:41:00Z

Historically, babies have been thought of as having three functions in life, eating, sleeping and pooping. Instead, what many proud parents of my “baby is an honor student” bumper stickers already know is being scientifically accredited; it is in fact true that infants are world-class explorers, observers and intellectuals. In a study conducted by Laura Schulz and Elizabeth Baraff Bonzwitz at MIT, young children were given a simple experiment involving light and blocks. By the end of the experiment, the children not only had a peripheral understanding of probability but an astonishing capacity for statistical reasoning and experimental discovery.

Now, I know what you may be thinking. These test babies, if you will, were probably the baby geniuses that know hundreds of words in sign language and are soothed to sleep every night with digitally enhanced recordings of Mozart with subliminal baby messaging. Not so, these were normal infants of parents who probably not only didn’t read their parenting books, but perhaps even used them as extra paper towels. These babies were just studied by the right people. Normal babies are actually extraordinary. They just don’t have the same kind of intelligence that you or I do, instead they have a really interesting fun kind.

While we sit in classrooms, ticking off boxes, agonizing about life goals and reconfiguring our mortgages, babies are doing the opposite! Preschoolers are paying attention to everything without focusing on any goals. They love anything new, unexpected and informative, the ultimate 24-hour thrill seekers; babies find possibility and adventure in absolutely everything.

So the question is, what do babies find the most interesting of all? Light shows? Cliff diving? Nascar races? It turns out that as many RDI Parents already know, babies are endlessly fascinated, fixated and infatuated by the people around them, with parents playing the starring roles. Irreplaceable by toys or DVD’s, Parents and caregivers enrich their infants by doing nothing more than paying attention to them and letting them play.

Goal Slackers

2009-08-03T18:33:00Z

In our households there are so many things that seem like more fun than managing our goals. For instance, my husband and I are currently trying to save up for a big trip. But, when I approached him about signing up for an online financial program he was very busy playing video golf. “Can’t I just finish this round?” he asked. “I’m playing better than I have ever played before.”

Although a short term goal like a trip is much different than a life goal, like the RDI Program, we do have one thing in common. Planning and setting goals is usually something we all dread. It means we have to take a hard look at ourselves, and come to terms with the bitter truth. For us we learned some embarrassing and hard realizations such as my husband has an itunes addiction to men that sing in falsetto and I have a pension for dog toys.

Goal slackers like us are what sites like the RDI Learning System was made for. Like our finances, life goals are things that are hard to handle alone and easy to slip into a state of denial about. Which is why the RDI Learning System does not just inform you about your goals, but gives you a structure to change your habits and move in the right direction. A large part of this structure is about not operating in isolation. The RDI Learning system is a community, and what we have found is that people put out a lot of information that usually they would be very private about. There is a culture of presenting a problem and having the community, your friends and family help you solve it. In other words, personal crowd sourcing. People connect personally, send out emails and communicate through forums and reach not only experts, but parents that have answers.

This is the one of the most important aspects of the Learning System. An RDI Program cannot operate on autopilot. A real person has to ask the right questions about what your goal is, help you set your goals and finally support you as you reach your goals.

Welcome!

2009-07-14T15:55:00Z

Welcome to our first father-daughter collaboration blog! Unlike other resources on the RDIconnect website this blog is dedicated to the stories, insight and conversations parents and professionals are having about our programs. Fun, serious, comical and hopefully original we have one goal, to entertain you until you pass out with delight!

As website writer and general jack-of-all trades around the company it is my honor to bring a smattering of perspectives to this blog including the everyday, the scientific, the expert and original. Although not a business professional, publishing professional or any sort of professional really, I hope to bring great voices and content to this little corner of the web I will call home.

Half my contribution and half my Dad’s, you will see us with our shirts on backwards running through content we think is hilarious, informative and touching. It’s not the most productive formula, but hey it works for us. We hope you enjoy it.