Our journey with Neurofeedback has come to an end. Our son "M" did his last session and the system was put in the mail yesterday. I feel so defeated. I feel so letdown. I feel so emotional. Part of me wants to wait a few weeks to write a post. On the other hand, the memories are fresh and I feel like getting them out. If you are reading this and don't normally read my blog, I am not a fancy writer. I am a trauma mama times two who loves her kids and longs to see them live to their full potential. For those of you who always read my blog, I realize this more formal that most posts. Don't worry, I have lots of fun photo blog posts scheduled. I really just wanted to write a post that tells our journey and hopefully gives a couple of insights for others considering Neurofeedback or those struggling while doing it.
There is so much I want to say about our experience as I process it. It is hard to know where to start. I feel like I need to give some glimpses into the back story and then explain the whole process and the outcomes. I will try to divide my sections well so you can skip down to what is relevant to you.
The WAY Back Story:
Parenting kids from hard places isn't easy. About this time two years ago we were just beginning to discover the definition of developmental trauma. I wrote THIS POST back then assuming that we were just experiencing a "traumaversary." I was wrong. All the neglect and other baggage that were a part of my little man began to surface and they sure didn't go away at the end of the traumaversary.
Then I wrote THIS POST about our discovery of trauma. The second half of the post is more relevant to trauma. We didn't know where to go to for help. We ultimately found help in the resources of Dr. Purvis, Heather Forbes and others. We also sought our a parent coach to Skype with.
After several months on this track we decided to explore EMDR. We wanted to go to the "best" so we drove half way across the country to do an EMDR intensive with Dr. Tinker. It ultimately was unsuccessful, but if you would like to learn more about it you can click HERE and HERE to read about our time before and after EMDR.
After EMDR we decided to seek help from the local public school early childhood/early intervention program. This was a HUGE blessing for us and you can read more about that HERE if you want to.
As a bright spot on the healing journey we discovered L-theanine and it has been an amazing help to us. THIS POST is one of my top blog hits and describes our journey with L-theanine. While talking about supplements I want to add that our son eats gluten and dairy free, eats very little processed foods, takes fish oil and a great probiotic (with anti-fungal) each day. He also takes LOTS of Vitamin D.
Once we settled into a routine we sought a talk therapist who we felt like really understood us. We went to her for six months and not only did we see no improvement, I feel like we saw regression and more problems surface. This summer we decided to end our relationship with that therapist.
This spring we applied to get into the top International Adoption therapist in our state. It took us four or five months to get the initial appointment in late August. We loved her! She gets us and she can quote the books that we have read as we discuss options for our kids. Sadly, she is so popular that our son's twice a month sessions won't start until December. Even though it has been a slow process with her, I do believe she will be helpful for our family. She uses many different modes in her therapy. Our son and daughter will both receive therapy from Dr. W.
This fall M started Kindergarten at a local neighborhood school. Our experience there has been incredible. The teachers are so supportive and his team is great! You read THIS POST to learn about his schooling this year.
We even hired an Occupational Therapist to come into our home while our children were at school and show us ways to incorporate therapy into routines we already have. She did this when the kids were not home so that they would have no idea about the added therapy. The theory was good, but I don't think we are applying too much of what she presented.
M and hubby also started a parent/child swim class this fall. We found a local pool that would allow a 6 year old to do parent/child classes. Before the class started M had very little love/kindness/gentleness to direct to his dad. He also had an intense fear of the water. The class bonded them together in such a beautiful way. I can't even describe how healing it has been for both of them, but if you have the chance to get your attachment challenged child into a parent/child swim class, DO IT!
The Neurofeedback Back Story:
For several years we have heard of Neurofeedback. I remember hearing about it at the Heather Forbes Live conference we attended and thinking we needed to look into it. At that point we were so focused on trying EMDR that we didn't consider it. It has been mentioned in several books I have read through the years. It always seemed expensive and would require extended traveling for training and an early intensive. Those were two things we said we wouldn't do after EMDR. It just became one of those things that we would research and then put on the back burner.
This summer we realized we were at a crossroads as we were no longer with our primary therapist and were not sure that our current one would be able to take us on long term. Then a dear friend and adoptive mom and I started chatting about her son. Her son is like mine in many ways. She was starting Neurofeedback and I began to consider it again. I will never forget the night she send me a little email update on her P and said that she was beginning to enjoy being a mom again. I just sat and wept. I longed for the progress that she was experiencing.
I did some research on places that would do on site trainings and then allow you do to Neurofeedback (NFB) from home. We knew that we would need to do NFB at home because there were no facilities any where close to us. There were several options, but they were all so far to travel and the travel and lodging and food alone were going to be expensive.
I finally decided to contact my friend's provider and see if she had any leads or if she herself did training for in home NFB. She responded to me that she had never had a client do in home NFB, but that she would look into the possibility.
A week later she called me back and shared news with me that gave me such hope and joy. She said that she could do in home NFB. Her rates were similar to the others, but my friend had already offered that we could stay with her during our travels so we knew that would lessen the financial blow. Then she informed me that she has a child attending a University only a couple hours from our home, even though she is located a few states away from me. She was planning a trip to see this child and she could come TO OUR HOME to do all the QEEG's and the training for NFB. She also said that since it would be in our home and we could do unlimited sessions, she would do QEEG's for our whole family and then we would each be given protocols so we could all do NFB. This was great news. Our daughter has been getting progressively worse and we were eager for her to try too. We also knew that parenting two kids with trauma had taken a toll on us as parents so an opportunity for us to do NFB was exciting as well. We said yes and eagerly waited for the last month before she would be making the trip to our area.
Before I tell you about our process I want to answer two questions you might be wondering about.
What exactly is Neurofeedback?
Neurofeedback is training for the brain. During the NBF sessions your brain creates new and healthy neuro-pathways. As you create more healthy pathways, the unhealthy pathways become used less and less and essentially leave. Remarkable. PLEASE do more research than the two sentences above before considering NFB! I will have some links in another section that will be helpful if you want to learn more about NFB.
How do you do Neurofeedback?
This is one of the most appealing parts of NFB. It is a totally passive therapy. This means it is a very promising therapy option for a client (like my son) who is very oppositional at therapy sessions and refuses to engage. He also smells therapy a mile away. In NFB the client sits and watches a DVD that they enjoy (or does a puzzle). The client has little transmitters on his or her ears and a spot or spots on his or her skull. During a session the client "controls" the movie by his or her brain. The movie sort of stutters like a DVD with lots of scratches would. The brain wants to hear and see the movie and in the process is creating new pathways. Amazing, huh?
*** Now we are finally getting to our NFB process. Great job for everyone who is tracking so far***
The Big Day! Our QEEG's and Training:
Our provider arrived at our home in the mid-morning and quickly got things set up. I drove to M's school and picked him up so he could do his QEEG. The QEEG is a brain map. The brain map tells the provider what parts of the brain are not working properly and a protocol of how to help them. We were very anxious to see the results from each person in our family. We learned a lot more about NFB based on QEEG's later, but I don't want to get ahead of myself. The photo at the top of the post is my son getting ready for his QEEG. You essentially wear this swim cap type thing during the QEEG. The provider does 12 tests to complete the Q. She first has you close your eyes for 60 seconds at a time six times and then has you sit with your eyes open and focused on an object for 60 seconds at a time for six times. It might sound easy, but for my children it was a big challenge. I had to talk them through every second of their Q's. For my daughter I had to start each minute with, "Once upon a time there was a little girl named T who sat very still with her eyes closed and her hands on her lap and her feet on the floor. While she sat very still she liked to think about princesses..." I then would go on to describe them. I did this over and over again until we were done. It was so exhausting.
The Q's and the training were a success in huge part because of a wonderful friend who was willing to care for our kids while all this was going on. I am so thankful for great friends.
After all the QEEG's were done we were able to sit down and talk about the results. They were sobering, but nothing we hadn't heard from other therapists before. In fact the results just seemed to confirm all that we already knew. They also showed that our daughter was in a very hard spot in her brain too. My hubby's brain was in a better spot than mine, but we both had areas that needed help. Indeed, we all qualified for NFB.
Once we agreed to move forward we signed a lease and were both trained in how to do NFB. The initial hour was so very overwhelming. The magnitude of what we were about to do was very overwhelming for me. I was so weary and it just sounded so hard, to put on the sensors, set everything up, and properly clean every thing. I think this is funny now, because it has became quite easy for me to, but the training was daunting.
At the end of the day we hugged the provider and watched her drive away hoping that we could make this work.
Doing Neurofeedback at home:
The next day we began our sessions. We did the initial sessions with both parents there to make sure we followed each direction correctly. We quickly learned that the set up isn't as hard as we thought it would be. Whew!
The kids enjoyed watching the DVD's so that was a plus too. They wanted to do NFB. They were annoyed by the jerkiness at first, but they quickly learned to get past it and looked forward to the sessions.
This is where the positives end. We found there were many more negative side effects to this form of Neurofeedback than positive ones. Both of our children were extremely dysregulated and hyper after sessions. Our daughter could not take a nap. Our son's behavior became progressively worse after each session. The negatives didn't stop with our children. I personally found that I was more irritable than before NFB. I was also VERY TIRED all the time. We had heard that some people are extremely sleeping during NFB and compare it to the first trimester of pregnancy. I have never been pregnant, but I have been very jet lagged and that is how I felt, and honestly still feel. I used to stay up late and now I am falling asleep often before 9:00. My husband also noticed disruptions in his sleep and headaches.
After just one session on our protocols we were moved to a week of CZ training. This is the center point in the brain and we were supposed to feel calmed by this training. None of us got the calm we were looking for.
Instead of things staying the same (which can happen) or getting better, we saw our son's behavior take a HUGE turn for the worse. We saw his violence spike to levels we had never seen before. He added some new behaviors which were very scary for us. Our daughter was previously doing well at school, but we got reports from her teacher and her bus driver that things were not going well. We were concerned. We were heart broken. We felt like we were messing with our children's brains and creating monsters in our office. We were baffled as we hadn't read anything about this in our research before starting NFB.
We talked to our provider and she asked us to stop NFB immediately. She presented our case to her peers and superiors to seek further counsel. While she was doing this, I was up as late as I could force myself to stay up researching negative effects of NFB and researching how developmental trauma effects how NFB needs to work.
I learned SO MUCH! I kicked myself 100's of times as I realized how naive I was when we started NFB. I read many scholarly articles as well as every free excerpt of Dr. Sebern Fisher's book I could find.
I am so excited to read THIS BOOK that she wrote about NFB. As I researched I remembered a yahoo group I joined years ago. I asked some NFB questions in this group and the answers were very interesting to me. The more I learned about NFB the more I was convinced of three things.
1. Neurofeedback is very powerful and can truly be helpful IF you "go low, go slow, and train on the right side only."
2. We were doing it wrong.
3. We needed some major prayer support.
We were seeing the power of NFB displayed negatively in our family. We knew it worked (negatively)! I also learned that for hard place kiddos like ours, dual site NFB doesn't seem to work. People with a lot of developmental trauma need to have training only on their right side and at very low frequencies. We were at error on both counts! The more I dug into the topic the more I learned about these places we could go to do intensives. At the intensive time they try many many protocols seeing what will work for your brain. Many of them don't work (like we had experienced) so they just move on. They train based on symptoms and responses to treatment, not just on QEEG's. Our provider used the QEEG alone to determine the protocol. This is one way of doing NFB. It has great success for many people, but doesn't seem to be helpful for patients with complex developmental trauma. The type of trainer machine we had wasn't able to manually adjust frequency either. These discoveries were intriguing, but not hopeful at all for us. We felt stuck in our lease with a system that was creating negative neuropathways. If you are considering doing NFB please make sure your provider can do low frequency right side protocols and that your provider can manually manipulate the protocol based on client symptoms and not just on the QEEG results!
I sent out an email to a large handful of friends asking for prayer support in this process. Sometimes I was very general and other times specific. The prayer warriors were incredible. I got notes from them letting me know they were praying. It was very special. We saw God answer prayers as He aligned our hearts on direction for NFB and as He led our provider to the same conclusions we had come to. I will always keep and treasure all the notes of encouragement we have gotten on this journey. The prayer support is truly the bright spot in the journey!
As it turns out, while we were praying our provider was doing some research of her own. She presented us with the new protocols her team had suggested and we rejected them. My research told me that they would not help, but harm and we were not interested in doing more harm. Our provider came to see our point of view and she decided to try to figure out protocols for us working just the right side at lower frequencies. Wonderful! By the time all was said and done we ended up taking a whole week off of treatment. When we started with the new protocols, but only the children continued. My husband and I both decided our brains were OK enough and we didn't want to risk more damage. For the children, we just longed for the dysregulated children from before NFB to return.
The first day we did the one sensor lower frequency right side only protocol I could tell things were a bit calmer. Sadly, the protocol created "emotional whiplash" to the extreme. It was so intense! Our son would rage at us and then hug us and then cry and then rage again. We knew we needed to switch his protocol. We switched to "P4" and we finally had some success! He was calm after his sessions and his moods and behavior started to improve. Our daughter didn't show any positive changes so we decided to just end her sessions.
We found ourselves at another crossroads. We knew that our son would need many many sessions to have healing. These sessions could take years and we knew our provider was not an expert at the type of therapy he needed. We also knew we could not afford to follow through with her system until completion. Our provider allowed us to have one additional week because of our missed week of NFB and then send back the system. We ended our lease early. We were released and no longer "stuck."
While at P4 our son did continue to make improvements. I am very sad to say that we had to send the program back before he improved to the point he was when we got the system. Yes, you read that correctly. He is in a harder spot now than before we started NFB. He is more dysregulated and more violent/aggressive. I type this with a quivering lip because it is so far from what we imagined.
Dropping off the computer and system at the UPS store was sort of painful. It represented another step in our journey to healing that was unsuccessful. I have been crying out my sadness to the Lord and it is amazing how He is turning my heart to joy. (Thanks to those who are praying for that very thing) He is faithful beyond NFB. His mercy remains even when therapy fails. His mercies are new EVERY morning. He fills my heart with a song. This all sounds so cheesy or trite, but folks I am in a pit. It looks hopeless, BUT I am sitting her singing songs of praise in my head. God is deeper than this pit! With Him I can face the hard of tomorrow.
**Update** After initially posting this and processing our journey more I realized that I didn't mention thankfulness and blessings at all. The more I process, the more joy comes in and the more I can see the blessings. I guess this is why I was hesitant to write when I did. I remember how the thankfulness came slowly after EMDR. The Lord is faithfully providing thankfulness much more quickly this time around! I am so thankful for all that we learned about the brain and about Neurofeedback during this process! I am thankful for those who shared wisdom with us and those who prayed for us. I am thankful for a provider who was willing to change protocols to try new things. I am thankful that my husband and I stayed on the same page the entire process. I am thankful that the kids were willing to try this therapy mode. I am thankful that the single site undid much of the dual site damage. I am thankful that we made this journey. Yes, you read that correctly. I am thankful that we tired NFB. Sometimes (often for our family) you have to take risks and follow the Lord even when it seems scary and even when you don't see the bigger picture. I truly trust that we are just living in the "dark before the morning." We really do have so much to be thankful for!
Next Steps:
So what are our next steps? Great question, a question I am not sure I have all the answers to right now. It may sound strange to say this, but our failed attempt at NFB has caused me to be more curious about the potential for more NFB. We didn't research things enough. I am eager to read Sebern Fisher's BOOK and do more research about Othmer Intensives and other NFB systems. I don't think NFB is totally out of the question as we look to the future. Please read this book and the link above if you are considering NFB. The Othmer link has many other links with a lot of very valuable information.
We are going to try to get through Thanksgiving and Christmas and New Years and spend a lot of time praying about what we should do.
We are going to start consistent therapy sessions with our new therapist and see how she can best help us.
We are going to meet with a neurologist to rule out seizure activity. Sometimes M doesn't seem to remember his rages. Sometimes he does strange things while he is sleeping. We are also curious about what an EEG might show us about his brain.
We are going to try to get additional help for our daughter's impulsivity. Her trauma and her aggression are huge triggers for our son. For years we have heard therapist after therapist say that if our son as some healing our daughter will follow. I am starting to wonder if managing her sensory seeking hyper impulsivity and aggression could actually be the first step towards healing for our son.
We are going to ask the Healer to heal our son and daughter and take this cup from our family. We continue to walk through doors that He opens on this journey, but we KNOW that in this very moment He could totally renew both my children's minds and soften each of their hearts. He is able! Join us in claiming His victory in this friends! We move ahead walking by faith and trusting that the God who led us to our children will provide for them and for their parents until He returns or calls us home!
*If you have questions about anything I have written please leave a comment. Comments are never published. If you want me to respond to you, please leave an email address!
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