Neurofeedback Testimonial

I recently submitted this testimonial to Neurofeedback Centers for Success.

My husband and I brought our 2-year old autistic son to Centers for Success with both intrigue and skepticism. When we first began, John had been through only 2 months of traditional early intervention therapies, such as Speech, Occupational Sensory, some in-home play, and an Early Start Preschool. He had been significantly developmentally delayed in all areas. His speech (at 30 months old), was tested like that of a 6-9 month old. His cognitive skills tested at a 10-17 month level. 6 months ago (at two-and-a half years old), John had no attention span, could not sit still, jumped form one activity to another, was in constant motion, grinded his teeth, chewed on his shirt collars, did not sleep through the night, had eating issues, had little-to-none imaginary play skills, could not ride a tricycle, and did not socialize with other children. When he was tested, they couldn’t complete many sections because he wouldn’t focus for them, wouldn’t respond to his name, wouldn’t point to a single object when asked, and was constantly running around the room, flipping on and off the light.

To date, John has had 50 sessions of Neurofeedback over 4 months time, and we are still planning on more. He rapidly progressed in his developmental skills, including bringing his speech to a 31-month level and his cognitive to 33 months (he is currently 36 months old). Among his skills, include riding a tricycle, which has become a favorite outside activity now. His imaginary play has grown by incredible strides, moving from cause-and-effect toys to playing with cars and blocks, as well as playing kitchen, grocery store, and even ‘brain school’(neurofeedback). He uses Play Dough as the “sticky stuff”, grabs headphones, and tells me he needs a movie! His retention has increased, which he can show us through the speech skills he has gained. He can now sit still through the reading of a book, which was something that he had never done before. We used to try just looking at pictures and ignoring the words, but he still couldn’t do that. Now, he’s interested in listening to someone read and can sit in a ‘big’ chair, without having to strap him in a high chair or booster. He has enough attention to sit and complete tasks, such as puzzles or stringing beads in patterns.

Socially, John has grown in his interaction with his 4-year-old sister, engaging in play and laughing at jokes between the two of them. He initiates hugs for bedtime, holds her hand, and plays prince and princess with her. He can play on his own, entertaining himself with age appropriate toys. With other children, John will say hello and goodbye, but his play is still more parallel in nature and not too much of engagement.

Behaviorally, we have watched John grow through different developmental stages. Prior to any early intervention, John was often frustrated due to his lack of communication and ability to do things for himself. He would often act out by throwing things or cry inconsolably. He’d cry until he fell asleep, often 30-45 minutes. As he became calmer and his skill levels increased, we watched the behavior change. He had more control. We then entered a stage of transitional tantrums, which only lasted about 1-2 weeks, but he’d cry as activities would end. Centers for Success changed some protocols and the calmness then took over, and the tantrums ended. We went on a vacation that included a 5-hour plane flight. John had no problems sitting in his airplane seat, happy and calm, for the entire trip (both on the way there and on the way home). We are currently in a new behavioral phase, which includes tantrums because John doesn’t get his way. This is different from the transition tantrums. These are in direct result of not getting what he wants and are in complete protest. He’s learning that he can communicate his wants to us, and protesting when we don’t oblige.

John’s diagnosis has changed from an “autistic disorder” to “PDD-NOS”, (Pervasive Developmental Delay, “not otherwise specified”) meaning there are signs of autism, but not enough for a Classic Autism or Asperger’s diagnosis. John has made HUGE progress since his first examination 6 months ago and beginning Neurofeedback 4 months ago. John still has a way to go, but life today is so different than it was back then. It’s more manageable from a parental standpoint and less frustrating from John’s standpoint. We are continuing with all of the therapy because it’s all working together. Neurofeedack has made it possible for John to be calm and attentive to learn the skills to catch up to his peers. He’s also learning to efficiently use his brain, increasing his maximum potential, during this time of early intervention. The rate at which he’s developing is incredible. Socially, John has grown in his relationship with his sister and I am hoping to report that this carries over into his relationship with other children. SO, until next time, this is “to be continued”….

John's New Results

John was assessed on Sept. 8, 2008 for entry into the START program. I recently received his results. At the time of the assessment, John was 34 months old. There have been 3 assessments where I can compare his progress. You'll see the May 2008 scores, which were the Regional Center's. Second, you will see his Casa Colina July 2008 update scores. Finally, you'll see his latest Sept. 2008 scores.

---------- May (30 mths ) / July (32 mths ) / Sept. (34 months)
Gross Motor --- 26 months / 26 months / 16 months (??)
Fine Motor --- 21 months / 23 months / 31 months
Cognitive ---- 21 months / 24 months / 28 months
Language Receptive ---- 6 months / 17 months / 33 months
Language Expressive ---- 9 months / 17 months / 31 months
Socialization ---- 10-17 months / 10-17 months / 29 months
Self Help ---- 23 months / 23 months / 24 months

Other than Gross Motor, John improved since July and dramatically since May.

During the time from June-Sept., he attended Early Start Preschool at Casa Colina, had Speech Therapy two times a week, 5 hours a week of in-home, and 40 sessions of Neurofeedback. He began OT/SI the first week of September.

It is worth noting here: Neurofeedback claims training can make a child with autism attentive, calm, and sociable. We have seen certain behaviors disappear and have watched John become calm. John is a different person today than he was 6 months ago when all of this started. It is hard to say what specifically helped John because we've been doing so much. However, the Neurofeedback seems to show us some patterns that are worth looking into. First, when we changed his protocals (the location of the EEG monitor, training a specific part of the brain), he began to have accidents in the seat and aggressive behavior seemed to manifest. We removed those protocals and went back to the old ones and there were no more accidents in the seat during the sessions and his aggressive behvaior seemed to go away.
Secondly, for the last 4 weeks, John has not attended Neurofeedback (he went 3 times over the last 4 weeks, as opposed to 5 days a week that we were doing before)--- first, due a family vacation and then, due to a death in the family. Over the last week-to-week-and-a-half, Bill and I have noticed that typical Autistic behavior (and some sensory issues) that had seemed to disappear has returned.

Things like:
Biting & chewing on shirt
Biting own skin
Chewing on objects
Frustration level is awful
Cries inconsolable again
Angry - bangs hands on table or objects when upset
Has been hard to take out in public - clingy, whiney, cranky, tantrums
Cries when I leave him in class

Tomorrow, John will begin a normal schedule of Neurofeedback training of 5 days a week. I'll report back to see if these disappear once we resume it. The goal of Neurofeedback is to train the brain to self regulate. After a repeated number of sessions, the brain will "remember" its training and be able to self regulate on its own.

He also has developed a cold. I notice that everything seems to be magnified when he's sick.

This week is a big week. Tomorrow, we go back to Neurofeedback. Tuesday, we see Dr. Baumen, an autistic specialist. Wednesday is John's assessment with the public school system and Friday is Halloween!

Neurofeedback Study

Through Neurofeedback Centers for Success, we have arranged a barter system. My family trains for free and I create promotional videos for them. Besides John, my Granny, husband, daughter, and myself will begin brain training (and possibly my dad). Each person will be dealing with different areas, but for the most part, the goal is to become more calm, alert, and focused. Granny has restless legs syndrome and is hoping that she can go off medication once her brain learns to 'self regulate'. Every 10 sessions for people over the age of 6, they administer a test, which monitors how your brain performs under low and high demand, how it reacts/recovers when a mistake is made, and tracks progress throughout brain training. So, we are doing our own little research study for anyone interested. Every once in awhile I will report back on this site on how each person reacts and feels about "brain training".

So far, John's in home teachers have noticed better posture, the psychitrist mentioned to my mom that John seems calm while in class, he seems to fall asleep better, he is socializing with Katie better, rarely bites his shirt anymore, no self stimulating behavior, and his vocabulary has increased dramatically. Things that haven't changed: clumsiness while walking, sustaining sleep thorughout the night (off/on), still in constant motion, still has limited eye contact, resists socializing with peers, and attention span is still pretty short. John has had 35 sessions. There were about 10-15 sessions in the middle that were unproductive, due to a switch in "protocals", causing agitation and pulling off the wires. The last week of sessions have been amazing and probably John's best sessions. He has remained calm, fairly still, and rarely pulls the wires off. They were able to move him into the 'big room', as opposed to the private room since he doesn't make as much noise as he used to (he'd sing, talk, babble, etc) I would say that since John is sooo young and doesn't understand what he's doing, as well as having "busy hands", pulling off his wires, many sessions were unproductive. I would say, he's more likely at 20 good sessions, than 35.

Tonight Bill had his first session and felt that it did make him feel more relaxed, less tense, and more attentive. He was skeptical going into it (and still is), but admitted it did make him feel better. My dad went once and felt like he experienced no change in how he felt, nor did it make him sleep better that night. He also admits he's not that self aware, but didn't feel like it did anything.

Granny had her first test after completing 10 sessions and her scores went up dramatically. It showed her alertness and reaction time have improved. Retless legs still bothering her...

I will continue to post updates on this site regarding our personal testimonials.

Here is the 60 second promo I edited for them. You can see a higher quality video, by going directly to You Tube, clicking on the video, and clicking "play in high quality". My portfolio on YouTube is HERE.

A little this...a little that

Catching up from the weekend....
Katie has developed into a wonderful swimmer over the last 4 days! Once she felt in control under the water, she has excelled rapidly. She glides both on her stomach and her back across the pool. She swims underwater and comes up for breaths. She is learning how to use her arms to stroke. She jumps in without someone catching her and actually loves it now.

John's last day of Early Start is tomorrow! He will move into the START program next week.

On Friday, John has an evaluation with Foothill Presbyterian Hospital for Occupational Therapy/Sensory Integration (finally!!!)

Now for today...

John had speech today, but instead, they began his START evaluation. Step One is to evaluate his play to see at what level he is "playing' at. The idea here is that autistic children tend to take everyday objects and use them in different ways, instead of the intended use.

So, Tonyia gave John a baby doll, hair brush, bar of soap, bottle, and toothbrush. He started by brushing her teeth. Although, at first, he picked up the bottle and the toothbrush, which looked odd, but then he used the bottle as the toothpaste and then proceeded to brush her teeth. He then grabbed the brush and brushed her hair. Tonyia asked John to give her a bath and he used the soap on her legs. She then took off the babies clothes and put foam soap on the baby's tummy and John grabbed a tissue and cleaned the baby. Tonyia then assisted John in dressing the baby and John brushed her hair again, pretty hard. Tonyia told John the baby was crying and gave him the tissue to wipe her eyes. John wiped away the tears and picked up a cup out of Tonyia's bin. He grabbed the bottle and "poured" something in the cup and took a drink himself and then gave some to the baby.

Tonyia set up a house with a bed, sofa, TV with DVD player, table, chairs, and a slide with a ladder. She then gave John a boy, girl, and later, a mom. He laid the mom on the ground. He had the girl sit on the couch. He then took the TV into his hands and played with it for a long time... there was a "pretend" DVD that went in and out of a hole in the TV and he kept putting it in. Tonyia eventually took it away from him. He then took the boy and had him climb the stairs and slide down the slide. Then he asked for bubbles.

He played with cars, play dough, and bubbles and it was time to go home.

John had another session of Neurofeedback today. We are on session number 20. The first 20 minutes is spent on the part of the brain that controls sleep and impulse control. John was so quiet and calm. The next 20 minutes made John a little agitated, as it has the last few sessions. They added an element that helps with motivation. Today, we decided that it may be too much for John. We are going to eliminate that protocol from the training and add 10 minutes to each of the other protocols. The last protocol is training the part of the brain that deals with social/emotional responses.

Things I've noticed since beginning Neurofeedback:

• biting of skin stopped
  
• chewing of shirt stopped
• doesn't drag his toes anymore while walking
• Achieving goals rapidly at Casa Colina
• Speech improving
  
• Falls asleep easier
  

Now, I'm not saying Neurofeedback alone has contributed to these things. John is working hard and there are a lot of PEOPLE helping John, but I am beginning to believe that Neurofeedback is enabling him to be present for learning and helping with behavior. The goal of Neurofeedback is to calm the brain down enough to teach it how to self-regulate itself. Through brain self regulation, the nervous system no longer feels under threat. The body is able to think beyond itself and begin to "take the blinders off", seeing the world around them. When we feel under threat, we naturally get "tunnel vision". When our brains cannot self regulate, we will operate as if we are "under attack", manifesting itself in ADD, ADHD, migraine headaches, some Autistic behavior, sensory issues, pain in the body, etc. Through self-regulation, the brain is able to calm itself and the outward symptoms disappear.

Show & Tell: Neurofeedback

Commercial for Neurofeedback at EEG Institute. (John is going to Centers For Success for the same thing)



Click HERE for an article in Science Today from Feb. 2008 regarding the link between Autism and Neurofeedback.

Although John does not use the video game controllers seen in this news story, the process is very similar. The technique was first developed for ADD/ADHD symptoms and recent studies show that brain self-regulation helps in all areas. This story is here is a little bit different than John's experience, but it is worth the watch to help understand the technology.


John is currently watching a movie on the top part of the screen to hold his attention (since he is so young) and on the bottom of the screen is the "visual" rewards represented in color patterns. As he hits the target brain activity determined, the visual colors get larger and as his brain strays away from the target, the color almost disappears. As he hits the target, he also hears an auditory beep. Together, the auditory beep and the visual feedback 'reward' the brain for hitting the brain activity target, training the brain to self-regulate. The tech told me that 70% of patients even fall asleep during the training because it is such a "workout" for the brain.

A 2006/2007 research study (Coben/Padolsky) of 37 autistic children concluded that there is an 89% success rate to improve Autistic Spectrum Disorder symptoms. In only 20 sessions, there was a 40% reduction in core ASD symptoms. (the study only followed children through 20 sessions)

Click HERE for an article in OC Register for an article on Neurofeedback and how it works.

Good Days and Bad Days

With any child, there are good days and bad days. Everything on Monday seemed to lead to what I am now calling a bad day. It started with John's refusal to eat his eggs. Katie came with us to Early Start Pre-School on Monday morning. All John wanted to do was "check his schedule" and skip all the activities that the schedule told him to do.

I think John is getting bored with all of the "un"scheduled activities in this class. Mom sure is getting bored with it! Sometimes it feels like we are trying to "pass the time" until John gets his one-on-one work time with the teacher. Some of the other activities, which include Imaginary Play, Outside Time, and Gross Motor skills are led by the parent or caretaker of each child.

Imaginary Play involves a play kitchen, which doesn't always have the food, pots, pans, and plates. There are only so many things you can do---open the microwave, put the corn in the refrigerator, wash the dishes, etc. The girls play the kitchen well. John will attend for a few minutes, but usually is ready to move on to other things. I don't blame him. He did really well last week, washing dishes in the sink, putting them in a bin that he called the dishwasher, putting them away, putting food on the plates, and starting the process over. But, this Monday, he didn't want to play with the Kitchen. SO, I let him go outside.

Outside time includes riding bikes, wagon rides, playground equipment, a play house, etc. John usually will fit everything in to his scheduled 20 minutes. About 2 weeks ago, John discovered the swing. Well, on Monday, the swing wasn't set up. So, he busied himself with running back and forth between the playground side and the bike side. Katie couldn't keep up. She just wanted to sit and play. At first, I kept making her join us. Finally, I gave up and let her have fun on the playground equipment without my immediate supervision. She's old enough now for me to just check back and forth. It's hard having them both at class. John doesn't like it when I give Katie any attention at "Ja's Skool".

Circle Time, Fine Motor skills, and Table Time are led by the therapists. Circle time went fine and Katie got to participate, which made her happy. Fine Motor Skills was an activity where the kids got to put their hands in the glue to stick fish, crabs, and sharks in the sea (a big poster hanging on the wall) and then finger painting their sea creatures. Although John wanted his hands in the glue and the paint, he was more interested in going to the "ba-oom to wah ans" (bathroom to wash hands).

Washing his hands has become a big thing these days because John is close to being completely potty trained!!!! He decided that Katie wore underwear and so should he, so he refused to wear pullups and diapers. Two potty accidents taught him to tell us he needed to use the bathroom and from there, we've progressed quite nicely. Even now if he starts to have an accident, he can stop it and tell me he's going to have an "acdent", while grabbing his crouch! He has 4 stickers this week for pooping on the potty seat. Now, this is very rare for a child with John's issues to be potty trained. It was something I wasn't ready for, but John made sure this was something he learned. Again, an example of his 'scattered level of skills'.

I digress, back to Monday and the "bad day". Work time was especially hard. He didn't want to look at the teacher and she was having to constantly remind him to "check his eyes". With his eye contact issues, they have him make sure that he tells the person what he wants by looking at them. So, if he wants the school bus to "go", he has to say "go" by looking at the person that will push it to him. Some days this is easy and some days this is hard. Monday was hard.

After school, we went home for lunch and a nap so we could go to speech class. Our next door neighbor came over to babysit Katie and she brought movies. John didn't want to go to speech class anymore. Leaving was a battle. Once we got to class with Tonyia, we started the eye contact battle again. He did everything he could not to look at her ---turned around, closed his eyes, put his head down, yawned a lot, kept pointing out the clock, etc. She worked him hard for the first 25 minutes, but she told me we were going to stop because she thought he needed to move around. We went into the START gym and he played in the ball pit and swung on the swing. He didn't want to do much in the gym either. He kept pointing out the clock.

After speech, we went to the second session of Neurofeedback. Well, John didn't want them to hook up the EEG monitor. He cried, squirmed, kicked, and got very upset. I told them that I was taking him home. It was a bad day and forcing him to do it would have been torture for him and me. So, we went in the elevator to go down to the first floor.

We got stuck in the elevator for 25 minutes! We were going from the second to the first floor. It got stuck between floors. Before we got in the elevator John was crying. Getting stuck was the best thing that happened to him all day. I had apple juice with us and he drank that, danced around, pushed buttons, and kept squealing in delight, "elvater!" The best part was when the firemen let us out and showed him the fire truck.

The family then went to get dinner at Rubio's, where Katie vomited in the trash can outside before we ate. She continued with the flu all night long.

Monday was a bad day.

Neurofeedback

At a silent auction, my mom bid on a package at Neurofeedback Centers for Success. She gave me the package for John, which consisted of an evaluation and 10 sessions.

From their website:

What is Neurofeedback?

Neurofeedback exercises the mind and strengthens healthy brain function with visual and auditory rewards. At the Neurofeedback Centers for Success a staff of specially trained clinicians administer non-invasive neurofeedback brain training that eases stress and enhances cognitive performance.

Neurofeedback is an exercise for the brain that can be compared to a workout at the gym. It improves the brain’s ability to self-regulate and encourages greater control over functions including concentration and mood. Sometimes our nervous systems interfere with self-regulation with the result being headaches, panic attacks, extreme anger, etc. Strengthening the brain’s self-regulation is a drug free method of overcoming these interferences.

Yesterday, my husband, Bill and I, took John for the evaluation and first session. We were a bit apprehensive before arriving. Once we got there, John sat in front of a computer monitor that had imagery that was similar to a "PacMan" video game. The "pacman" rotated in a square formation, moving into the center, eating a series of small yellow dots and then larger red ones. John would giggle when the "pacman" ate the red bubbles. It made a funny noise and he thought it was great. They soon gave him a stuffed lion that was attached to the computer and would vibrate when the 'pacman' ate the red bubbles. John thought this was cool.

While he was watching the video game, he was hooked up through an EEG, which measured his brain waves. We could see them on the monitor next to the video game. We could see through the visual images of his brain that he was more often than not in the "drowsy" level of brain activity. His constant movement was his brain's way of attempting to keep himself awake. Every movement he made, showed1 that he "overused" his energy, sending him over to the "overaroused" section of brain activity. The technician would set levels that John needed to maintain. When his brain activity went out of these levels, the video game would stop, encouraging his brain to come back within the set levels and then the game would continue.

It was actually very interesting to watch. John sat attentive to the game for 1 hour! He got fidgety, asked to go to the bathroom once (which we proceeded to stop the session and take him), needed food for more energy, and became tired at times. About five minutes before it was to end, he told us he was "all done". Watching him over the last few weeks, I would have told you that "all done" would have come much sooner than it did. It was very interesting watching how he responded.

The technician then told us to monitor him, for the next few days to see how he responds to the feedback and brain exercise. So, I took notes.

Here were our observations for the first day:

• We got in the car and he slept for 15 minutes on the way home
• He got home and ate lunch
• He then went and laid down with Bill and slept deeply for 2 hours!
• He was alert and in a good mood for the rest of the afternoon and evening
• We visited my grandpa at the hospital, where he got fidgeting and Bill needed to take him for a walk
  
• We went out to dinner, where he sat and ate a good meal
• Bedtime routine seemed normal, getting out of bed a few times before falling asleep
• About 2 hours after he fell asleep, he woke up crying for what seemed like no reason
• I couldn't console him in his bedroom, so I rocked him back to sleep
• He then stayed down for the night

The only significant change that I noticed was the two hour nap. He typically naps for about an hour. The nap did make him more alert and happy for the afternoon. Dinner out did seem pleasant and Bill did not need to take him outside at all during the meal. Waking up after going to sleep doesn't happen much anymore, so that stood out too.

The package we received includes 10 sessions. The company states that to make the brain training permanent, they recommend 50 sessions. This week, John will have 3 sessions. I don't know if we will want to continue it past the 10 free ones we get or not. Even if we did, the cost is significant.

At this point, I'm intrigued by it, but I don't know how I feel about it beyond that. My pediatrician says that the medical field doesn't stand by or against the feedback, but said that a lot of people "swear by it". We'll have to see. If John could train his brain to self regulate, I do believe many of his symptoms would disappear. But can this kind of feedback truly train our brains?