Infinity

There is no question of the greater amount of stress experienced by parents of these unique children. My son is now 16 years old and it has not been an easy road in raising him.

Recently he refused to leave his room to go with us to see a movie. He was tempted by the candy he could get there but he said it was not worth the three hours “wasted” outside of his room. I don’t always force issues because his grades are good, he is actively engaged with football and CrossFit and does help around the house occasionally. He covets his alone time and this seems to charge him up for the next week.

A friend of mine invited me to a college lecture on Pluto and she brought her 9 year old neurotypical child. He listened to the presentation, played around with another kid he had just met and then allowed the adults to chat and play with telescopes for another 2 hours. I was so shocked and felt a little sorry for myself. She had no behavior plan in place. There was no set reinforcement schedule, no prompting, no planning, no data collection and no stress. She just did what she wanted and he was fine left to his own accord. I was sort of jealous.

I was not sure what to do because I kept checking on him and was on edge waiting for some issue to happen. What melt down was about to happen that I needed to fend off? When did we need to change the focus? How long could this child endure compliance and social integration? I realized that even now, I am on edge when around children. For so long my agenda was secondary to meeting the needs of my son that it is difficult to gear down and relax!

Unless you are the care taker, you really have no idea what the short term and long term impact is. The few studies that have been conducted show a bleak picture of the high levels of stress and even rage parents experience. The health issues are real. We know this but what choice do we have? Even if you have the money to hire full time help, this does not guarantee a happy outcome and dependency never feels good.

Maybe you can relate to some of these common issues?

  • blaming self for chid’s behavior
  • blaming spouse for not being supportive or helpful
  • blaming the school system for inappropriate programming
  • blaming medicines and doctors that are irresponsible
  • lack of social group for child
  • lack of social connection with adult friends for self
  • loss of career or lack of ability to dedicate self to personal interest due to child rearing demands
  • incorrect diagnosis
  • difficulty in transportation and time to shuttle child to therapies, schools, doctors, etc
  • difficulties in scheduling with other family member needs
  • lack of positive immediate family activities-peaceful shared meals, outings, vacations
  • lack of positive extended family activities due to chid’s anxiety or behavior problems
  • feelings of being blamed and judged by schools, family, and peers for child’s behavior
  • anxiety overload and melt downs by child
  • embarrassment when child is rude to others
  • lack of time or energy for self interests
  • physical exhaustion
  • loneliness
  • frustration when “experts” know less than you do about medicine, behavior plans, academic issues, etc
  • stress of constant problem solving and energy depletion in management of child and family
  • fear of the unknown future each day- dressing, eating, behavior at school, homework, lack of compliance, social issues, sibling issues, grades, disconnection, college, career, independency in the future?

I am not trying not add fuel to the fire but I just want you to know that I know what you are going through. I have been there, done that, but didn’t buy the t-shirt because I don’t like any of them I have seen so far. I don’t like “Autism Awareness”, blue light bulbs, and groups that “speak” for me. I am living it and I am struggling to keep my head above water and keep my family afloat at the same time. I am also tired. Very tired of worry, work, and anxiety. I thought life was supposed to be fun and beautiful. I still think it is but I have had some detours on the path.

My passion lies in helping other parents because you are the most important piece of this “puzzle” of autism. You are the key to true therapy. We can hire all the professionals we want but when it comes down to it, you are still the responsible one. You are being pulled into a black hole at times with too many demands, not enough answers and not enough support to get out!

I have been through some scary places– facing cancer and near death was not pleasant and the anger I felt is nothing to be proud of. I tried to negotiate with God that if I could try again, I would dedicate my life to help others and to not waste my life with so much negativity. So here I am. I want to follow through on my end by extending myself to people in the same dark places by offering some light to navigate better and move towards a more positive spot. I don’t have all the answers but I know the territory and want you to know that you are not alone. I also know that things can change without much warning.

We need the social network of schools. Our children need social reinforcement and connection to prepare them for the world. We aren’t doing them favors by enabling them to stay in their rooms forever.

We need special professionals that can help us see our children with different lenses. There are many gifted specialists that we need along the way. We must learn how to manage and delegate these services to maximize our window of opportunity of learning.

Most importantly we need to protect our very souls from being battered, bruised, wounded and beaten down. The problems don’t stop. You keep fixing the leaks that never end. We must find a way to dedicate ourselves but not totally depend on our children’s success as our own. Chaos never ends. I believe there is more to our lives than chasing the wind and hanging on. We have to breathe right now. Our spirits can be lost in the confusion.

We have to learn how to train our minds into accepting higher guidance. The answers may feel uncomfortable. We have to allow a new system in. Change is not easy. In fact the ego hates it. That is why we have to reboot and use a new system. Others have done it. They have taught it. Jesus, Buddha, and others have shown us how to see differently.

There is a reason that we can not see.  We can get through this and fulfill this calling to find answers where there appears to be darkness. We can help each other. We are the heroes in our own lives. We have to save ourselves in order to save our kids and save the world. You are flawless. The real you deep inside knows what to do. We just need to remove the blocks that have gotten in the way of seeing the deeper truth.

I am creating an online class that may be helpful. “Parent Survival to Thrival”will offer support, structures, and activities to help you find your own path with more positive outcomes. Please send me an email if you are interested. (The first 4 people will get the program free.)

Why Wolves?

As a mother of an Asperger child, I have experienced a different path than I ever expected in childing rearing. I was a teacher for many years and had two children before our third came along. I was even a bit proud of my ability to work with difficult students and extended my certifications to include special ed, gifted, ESOL, elementary ed and early childhood. When Ridge came along, even with all my experience and knowledge, I fell short. He struggled in school with true dyslexia and the social skills were always lacking. He was in 2nd grade before we finally got a diagnosis that fit of Aspergers. The school he attended did nothing but make his life worse and finally his behavior had escalated out of control. Luckily, my niece told me about Applied Behavior Analysis and we hired a very gifted therapist that helped us. I went back to school and became a BCBA and started a new paradigm in the way I learned to parent.

It was not an easy road and I battled schools, depression, and cancer along the way but at this point all of our lives are more settled. Ridge is now happily navigating in a public high school, playing football and making good grades. I have started writing to share ideas to other parents that may be on the same journey. My hope is to offer information that could make lives better and to create a supportive community of hope.

I am not a fan of many of the organizations for autism. I don’t want theory, walks to raise money, or blue light bulbs. I want to share information that can be related to and hands on activities that can be used right now. I am keenly aware of the statistics that show a bleak future for people on the spectrum to ever live independently. It is my goal to “raise wolves” that will be successful in the world.

Imagine if you got a new puppy thinking it was an Akita. It looks like all the other pups but you start noticing differences as it grows. This could be scary and frustrating until you find out that the domestic pup is a wild wolf! Suddenly the behaviors make sense because you understand that your pup is different.

I chose the wolf as a symbol because like our children, wolves don’t like eye contact. They have sharp intelligence and highly advanced senses. Wolves won’t be trained with force or coercion but can learn with positive reinforcement and respect. They are ritualistic in nature and friendly. They are wild with a spirit of freedom to live in their own way without caring what the rest of the world thinks. Wolves don’t trust easily. They run in clans that all share in upbringing of the young. The pups are highly valued and catered to. They greatly depend on the pack for their food and teachings in order to survive.

The wolf path requires freedom, toughness, endurance, and strategy. As parents we want to prepare our children for what lies ahead. It is an unknown world with many challenges and crisis. We must raise our children to have the strength and audacity to brave it all. We may howl along the way- sometimes in pain, sometimes in celebration.Our cries can be primal and penetrating.

We all must learn to hear and follow the voice within ourselves and use our intuition to find answers that we won’t get anywhere else. Discovering our inner power is demanded in order to walk this path and much will be given in return. We aren’t looking for fights but will not be overrun. We can be loyal to the pack but not give up our own identity. We must take risks and face our deepest fears as we walk at times a lonely path , undeterred by the beliefs, judgements, and views of others. Let us go forward as we learn new ideas and then teach them to others. Our pack can become strong and cunning as we follow our passions to help our pups thrive.

Ahhhwoooooo!

Texas

We moved to Texas in July of 2012 after another trip to Hawaii. Ridge started 6th grade and this school had 6th in the elementary school. I was so very thankful because as much improvement as we had seen, Ridge was still very immature and I was not sure he was ready for middle school. Maddie started 10th grade and Colt was still at UF.

We signed him up for YMCA football that summer and because he had played before, it was an easier task. He was still nervous but the coaches were kind and supportive and this helped him to connect to the new town.

The team of teachers was excellent. He had a male science teacher that told me later that his file had scared all of them at his new school !  They were afraid of all the issues that documented who he was. Very quickly they ignored the file and for a change, Ridge was accepted 100%. Those teachers were more angels on the path.

I met with them with a power point to share his background. The very intelligent special ed teacher met with Ridge and asked him how she could support him and he asked her to leave him alone. He told her that he wanted to appear normal and that as long as he could manage, he would like to try to make it without any other help. She respected his opinion and he held up his end and was successful.

He was even knighted for his honesty in a school ceremony. It was sort of the fairy tale ending that he never believed could happen. It was such a beautiful moment when life is better than your dreams!

Middle school was easier than I could have imagined. Football provided structure and the exercise that would leave him in an elevated mood. Ridge was strong and good at blocking. He was put on the A team and the other boys liked him. They even gave him the ball in one game in a secret “Jumbo” play.

It is a good thing because I was diagnosed with triple negative breast cancer on Thanksgiving of 2013 when Ridge was in 7th grade. My oldest son had just graduated from college at UF and was without a job. I asked him to move home to help me and to drive the kids around. He accepted and it was another godsend.

I have never been so angry before. I knew that my many years of anger and struggle had probably reduced my resistance and caused my disease but I had tried so hard to prevent this. I exercised, didn’t drink or smoke, attended spiritual retreats, studied self help books, etc. I had taken the role of mom and therapist and worked really hard to keep the family together. This just seemed so unfair. I had known something was wrong for about 6 months and went through a family doctor , a gynocologist and even an oncologist that told me nothing was wrong. It was sort of like what I went through with Ridge all over again but this time on myself. Hearing the news was not good and only got worse when I went to MD Anderson.

Chemo was really hard for me and I could not help anyone. I could not walk for a while. I had diverticulitis. The pain was like labor all day for weeks. Tim was gone off to a military exercise that was important to him. It was the worst time in my life. People would send cards and my mom sent little packages. Maddie’s dance team parents even brought food over. The pain and anxiety sent me to a very dark and paranoid place.  I had never been in a place that I lost all faith but here I was.

People can’t help you much when you are so sick. I realized that I had been giving way too much for a long time and that I had to depend on others. The kids had never thought about me not being there. It was a time of survival for everyone. Ridge didn’t ask me for help or scream at me to fix things very often. I remember him peeping in the bedroom and then throwing me a piece of candy one afternoon. He had no idea how he could help. I didn’t either but at least he tried.

He wrote me a very beautiful birthday card that year that said:( as written with errors)

Mom, you have always been the best parent a kid could ask for. You have always helped me in any way you could never asking for any thang in return. I know that without you I could never be where I am now. What you are facing must be scary but I want you to know that I will be there for you. I hope you have a grate B-day and I love you mom always have and always will.

, Your son Ridge

It was the best birthday ever. I completed the chemo, had a modified mastectomy(my sister flew out to be my personal nurse) and spent the summer having radiation. Thank God Ridge was so stable. Maddie had been overly stressed at school and college acceptance pressure was intense. 

Radiation was completed in Houston and I started feeling better and better. The kind radiology therapist made me feel like I was on vacation. Being able to eat and not having pain was heavenly. As soon as I was able,  Maddie and I boarded a plane to visit my mother in Florida. She was dying and we got to spend some quality time with her. We knew it may be our last time together and it was a hard goodbye.

In the fall, Colt started a CrossFit gym here in Boerne and my mom got to see the photos we shared. It was an exciting time.

A strenuous workout always brings about a better mood in most people . I especially see it in Ridge. He was always naturally strong and by training he has gotten even more aware of his body. The culture of CrossFit is very supportive and social. We all cheer for one another no matter what level you are at.

Maddie was a senior and Ridge in 8th grade. It was a fast year of football, college visits and lots of stress around that life decision. My hair grew back partially anyway and I started working out at Crossfit. Ridge went too although he was anxious at first as usual.(He thought I was paying people to cheer for him secretly.)

My mother passed away but shared a beautiful thought with me right before she died. She told me that her life had been like a novel with many chapters. Each chapter was important– even the last one that she had not wanted to do. She had been almost bedridden and had to depend on others. My brother and sisters and their children and grandchildren would go by and visit or call her and it gave her another perspective on the world. Because of their love and kindness , she enjoyed her last days and felt tremendous love. I felt that I had received a priceless gift of this and it has given me hope for my own new chapters.

 Maddie graduated with honors from high school and Ridge did too from the middle school.Maddie moved to Austin to attend UT and Ridge started high school with pre AP classes and a more competitive football team. Texas football is famous. Our team is one of the best and the coach is an amazing man. As God would have it, his daughter was in Ridge’s 6th grade class and I met the family through PTO before he was the coach.

I remember the first time Coach Kaiser met Ridge and he made deep eye contact and shook his hand. I told him a little about Ridge and I could tell that there was no need to further explain. This was one of those rare people that see beyond outward appearances. He was a strong football coach but an even stronger leader of men. He cared about these boys and I knew that I had another angel to help along the way.

Football went smoothly until the team made it into the payoffs and Ridge was extremely anxious about traveling to new areas and the change in his schedule. He made it but I was afraid that he was starting to regress.

Ridge had started melting metals by creating a forge he saw on a You Tube video. He saved his money to buy a professional set up and has mastered aluminum, brass, and copper. He has shown extreme caution and respect for the dangerous pouring and has had no accidents this far.

After one slight incident with a school personnel, we got things straightened out for smooth sailing so far in high school. Ridge has even become the defender of certain teachers that he thinks are consistent and effective but the kids are lazy. He can barely tolerate the blaming they do instead of studying. It is interesting to watch him go from outcast, to fly under the radar, to becoming a good student and even leader.

Yesterday, my friend and I picked Ridge up after spring football practice and we were talking in the car. He mentioned that we had finally lived in one place log enough for him to feel connected. It has been almost 4 years here in Texas. Ridge has a group of friends that invite him to parties and sleep overs. He has adapted to public school. He is playing football and learning how to get better. None of this would be possible were it not for the many teachers, volunteers and unseen angels working behind the scenes.

It was my 50th birthday yesterday too. I went to bed thinking of the many blessings I have this year with my health, my friends and family and the huge relief I feel with Ridge being successful without my constant help. I can’t predict the future but right now it is feeling pretty good.

I have made friends here too. First with myself-I started a consistent meditation practice that has helped me to sleep better, reduces anxiety and provides a safe place for me to release and forgive. I joined a local Course in Miracles Group and the CrossFit members have been amazing support. My parents are gone but I still hear and feel their love through my brother and sisters even though they are a long way away.

I bought myself another horse and I am committed to carrying out my dream of riding and camping all over the united states. When the demands are less, it makes it easier to follow your personal interests. Maddie is about to complete her first year at UT and Colt has plans to expand the CrossFit gym and even to get married.

Life is moving very fast and I am very fortunate to even still be here. It is my goal to live every day with as much laughter as possible and to reframe this story until it gets closer to the way God would see it. Maybe it all makes sense in the bigger picture. 

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Video

Awakening

Before I share the events of March 9, 2010, I think I should tell about a couple of other events that had happened.

In the midst of this, I felt myself so lost and confused that I often fantasized about not breathing anymore. I stopped feeling much of anything and packed up my jewelry. It was if my body could do nothing else and wanted to escape at all cost. I was so depleted and progress was so slow. I felt that there was no way I could do this any longer. At the darkest moment,  I had another experience.

There was another profound dream like message I got. There are not many words I can find to really describe this but I felt in my bones a message that said, “ Fantasy will bridge that gap to spirituality.” I was inside a brain that was not my own and I sensed it was a brain that was different or what we call autistic. The dendrites of the brain were lit up on the left side but there was no connection to the right or in the middle. As the voice came through , I could see lightening bolts as the synapses were connecting and webbing together to make this union. Suddenly I understood how to create a circuit but there had to be some activation first.

This was not like a silly little dream. It was a command. I felt my core filling with this message and I had no choice but to give myself over to this thought that was much more powerful than my entire existence.

I took Ridge to the bus stop and rushed into the local book store. I was almost in a daze as I felt something was moving me. I walked along the aisles and a book display jumped out at me. It was called “Fablehaven” by Brandon Mull. The cover was a scary looking witch with bright colors. I knew Ridge would not be interested because he couldn’t read at that level and the topic would be “stupid” to him. He liked books on science and factual information only. It didn’t matter though. I grabbed it and a few others and bought them.

I showed him the book after school and he reacted as I had feared. He was not only disinterested but became aggressive when I tried to read it to him. I didn’t give up and made a contract with him to just listen to the first chapter for a reward the next night.

Finally he agreed and as I read the story, I knew I had been divinely led to this particular book. The characters were a young boy and his older sister just like Ridge and Maddie. They were going to stay at there grandparent’s home and were not happy about the trip. Instantly, Ridge ripped the page and threw the book across the room! He said it was so unfair to force the children to do this and I learned that Ridge DID have empathy. He actually had too much and was overly sensitive! I also learned that he had no coping skills to problem solve. He had no faith that a problem could be solved. Now I understood why the book was so important. I described math problems and patterns in science that he understood and I told him that there was a pattern here too. If he could just accept the parts that felt uncomfortable long enough, he could see how the story would change and solutions would come. This story represented our lives! He had been choosing to avoid life by staying with what he was comfortable with. His fear and over sensitivities had sent him over the edge so many times that he was terrified of anything he could not predict. It was still all about fear and his behaviors kept him in a cycle that would not allow growth.

I knew that we had to get through that book. I prayed and asked God to help me say the right things. After the first chapter, Ridge started to interact with the story. He was seeing the little boy as himself.  He suddenly got excited one day after I read part of the story that explained how a character was feeling and thinking. Most books that Ridge could read (1st grade level) did not go into such details and relied on pictures for meaning. Ridge had never understood the pictures or the facial expressions most of us understand!

 No wonder why he had hated stories! With the structure of language that described the character’s internal thoughts and feelings, he was able to understand. He was so happy and so was I! We completed that novel and then it was like he was starving for knowledge. He would beg for me to read to him before school, after school until he fell asleep and literally ALL weekends.

I was so hoarse but I knew this was something he needed and the stories were totally addictive. Thank goodness we had a Kindle because we got snowed in for a few weeks and all we did was read- we would go through series after series and my brain was getting fried. He remembered it all and I could not keep up. ( The next year he had over 500 AR points from remembering these books and taking tests on them.)

I was also doing repeated readings with him at home to strengthen his own reading ability. He was truly dyslexic and could guess words by context but sounding out was impossible for him. However, the repetition of reading the same paragraph over and over seemed to be helping his brain see patterns that no instruction ever could. It was also a good way for me to practice using a celeration chart and he could see his time and fluency improvements.

I started reading A Course In Miracles again on March 9, 2010. The first lesson is “Nothing I see in this room means anything.” I called my friend and we discussed how the course teaches that what we see is only what we have been taught to see and how spirit sees Truth. It retrains you to move out of projections and into accepting the Holy Spirit to lead you to a greater reality. It is about changing our perceptions. Maybe this was the pre-show to sort of prepare me for the afternoon. I had no idea what was coming.

On March 9, 2010 Ridge was reborn. He went to school as usual but when I picked him up there had been a miracle. He was not only chatting away in the car but he was making eye contact and when we picked up his older sister, he asked her how her day was. She looked at me as if it was a joke. Not knowing how to respond she sort of half heartedly complied and so Ridge started asking more questions.

“If you could be a super hero, what special powers would you have?”  “What is it like to be in middle school?”

He listened to her answers and asked for clarification. He was tuned in and we all had no idea what to do because this was not the same Ridge we known for 10 years!!!

I was trying to sort out what was happening. He had had a seizure several months before and I was wondering if this was a prelude to another one.

I called my sister and without prepping her and I asked her to speak to Ridge on the phone. She laughed because she expected his usual growl and refusal to speak. Instead he said, “Hi, Aunt Marsha! How are you? What do you do all day now that you are retired? What is your favorite hobby?…” This went on for about 20 minutes and he very politely said, “Well, I guess you may want to talk to mom. It was nice speaking with you today.”

I got back on the phone and my sister said, “Oh my God! What has happened? Get a video camera and record this! Is he on a new drug? “

I assured her that nothing had changed and this was how he got off the bus. Unbelievable is an understatement. He told me that he was thinking about his arm and that it automatically moves but he can think about moving it and control it so maybe he could do the same with other thoughts. He decided to stop his negative thoughts and it worked. He said that he could control it and that he noticed other people were not aggravated at his growling.

I grabbed the camera and treaded lightly because he had been in this nonstop chatter mode for several hours. I asked him to share what happened at school and he willingly complied.

Here is part of the transcript of one of the videos:

Ridge says:

“I have discovered that all you really have to do is don’t focus on what you don’t want to do. And by complaining you are focusing on it. If I am complaining and focusing on what I don’t want so I am not really doing anything. So when I am not focusing on what I don’t want and I am just doing it, it goes so fast.

Today I tried it and I wasn’t complaining and I wasn’t aggravating anybody.

I have a theory that you can do anything if you want to.

A few weeks ago I discovered it but I never really fully embraced it. So, I embraced it today and it worked out great. I wasn’t complaining about anything and I focused on the good things and I really didn’t focus on the bad things  so I couldn’t find anything that was bad today.

Just do it! “ 

Me- Today you have had such nice manners, helped Maddie fold clothes, bought her gum, asked our opinions, what has changed?

I was focusing on the good things in life.”

Me-Did you like talking to us?

“Yes!

Me- What were you saying about books?

“The best one- is it tells what everybody thinks about. Like if you were a stinkbug or something it would tell what the stinkbug was thinking about.

Let’s focus on what I have learned. That mainly, if you want to do it, you can do it.”

Me-What would you say to someone that is struggling with this?

Have  you , you probably focused on the negative. Just don’t even think about it.”

Mom-Do you have to retrain your brain?

Yes.Train it to not think about the negatives. Never!”

Go to :

I called my teacher and mentor Alan Cohen and shared the story because I could hardly believe it was true. He asked me to join him on a spiritual group telephone call  to share this experience with others. When I tucked Ridge into bed, I went to my computer and cried into my keyboard. I was not sure if he would still be like this in the morning or if he would be the other Ridge again. It was so hard to believe. I thought of that movie, Lorenzo’s Oil and wracked my brain to try to figure out what was the new variable. Nothing came to mind.

This started a new era in all of our lives. He still had a few moments of “negativity” and melt downs but this discovery of his brought a new level of self control.

Suddenly, his reading ability jumped from barely a 1st grade level to a 3rd grade level. Then it got better. He even started reading the higher level books.

One of my professors (Andrew Houvouras)shared some research with me on Video Self Monitoring and this became my favorite technique.He encouraged me to challenge Ridge and to set higher goals. My mom wanted me to take her to Hawaii but I didn’t want to go without my family and assumed that it would be impossible. He said, “Why not?” So, I changed my mind on my expectations.

I reinforced Ridge’s new awareness with all I could and started to challenge him to do more things like go out to eat in a restaurant or to go on short day trips. I would video him and edit out any parts of noncompliance and he would watch himself having a good time. I started planning and preparing him for a family adventure to fly to Hawaii, stay in various hotels, take a cruise and fly back. This took a lot of prepping but he proved to be the most happy person on the trip!

It was magical and everyone was happy.

I believe that my “dream” had come true. The fantasy stories had lit up an area of his brain that had not been so active before. Once he was able to connect the feelings and thoughts of the characters by the explicit descriptions used in the text, to his own thoughts and feelings he mastered empathy. The “mind blindness” could now see as his brain was rewiring itself. I still was unsure of the spirituality part as Ridge could never handle being in any churches or listen to any of my spiritual books. However, there was a sweetness that he started to share with people. He always loved and protected babies and dogs but he was starting to extend kindness like never before. I accepted that as the most authentic form of spirituality that there is -love.

I wrote a book to chronicle what had happened because I could hardly believe it. Ridge even helped me to make a video about it.

Go to:

We moved back to Florida and I signed Ridge up for football because this was a “normal” peer activity, he could get some exercise and I hoped the social structure of a team would help him to connect.I had worked with a lady that sponsored the cheerleaders and her husband was a coach so this made me feel safer. (Thank you, Tristan and Danielle Curry.)It was a series of melt downs due to extreme anxiety and daily resistance at home. I used video self modeling to film hours of practice and then I would edit out only the happy spots to “prove” to him that he had had been successful-to replace his “catastrophising” . It was also very important to show him his progress as he learned about his own learning curve. Football was the biggest challenge and the biggest reward. Ridge found the instructions and positive reinforcement helpful as he learned the skills and felt part of the team. ( I have several videos on You Tube because at the time I wanted to share them with Tim since he stayed in Virginia and then moved to Alabama without us) 

He made a friend!!! The coaches encouraged him and he started respond to the positive reinforcement. The video doesn’t show the refusals to get out of the car, the chewed up mouthpieces or any melt downs.He would get dressed around noon for the 4 pm practice and just rock back and forth. It was so hard to push him but I knew that the outcome was worth the pain. The videos proved his progress and need to stick with it to me probably more than to him. It was a path of trials but he was a hero now and he could do it.

I went to every practice and sat there the entire time because he needed the assurance that I was there. There were a few parking lot fits and a couple of close calls when he told me to “sign him out” but he managed well for the most part. By the end of the season he even said it was great.

Patrice Hay sat out on that field with me many times. Thank God for her support. I felt alone but angels appeared and pulled us along.

Go to:

 

Going back to the school that had treated him so poorly was not easy. He was bullied by a boy that said he remembered what Ridge had done and that his dad said if he came near him , that they would get an attorney and sue us. Lovely…

The price of being a social outcast is very high. The challenge to overcome it was daunting even for a 4th grader. K-1 was total frustration and anger.  2nd grade had been all about his anger and rage that was only reinforced by constant triggers and lack of any positive reinforcement for wanted behaviors. 3rd grade was a blessing to start anew and have time to recover and “awaken” to his ability to control his thoughts. 4th grade was a blend of facing the past with a new system. Thank God for the highly skilled and caring teacher that provided the structure and kindness needed to make this work. His awakened self was in charge.

The principal did not even recognize Ridge. He told me that he had never seen anything like it. Ridge’s reading had improved but his writing was still a challenge. We asked for a text to print software and it was not as easy as it sounded but we made it work.

By this time, Ridge really hated having a behavior analyst around. He had learned with me the jargon and ways of ABA and he was self managing most of the time. It is always a good thing to see a person taking off the training wheels and I moved into a more supportive role providing structure and reinforcement in a less intense level.

5th grade was a breeze and Ridge was winning awards for science and behavior! He was now known as a leader and one of the best behaved kids in school. His “graduation” from elementary school was a hard battle won.

Then we moved to Texas.

Help Came

Intro to ABA

After we hired our behavior analyst, things changed.  Patrice Hay observed Ridge at home and interviewed us about his history. By this time, Ridge was showing aggressive and violent behaviors at home , had stopped talking and spent a lot of time hiding under the cabinets and banging his head on the floor. He growled and attacked. It was a terrible thing to see.

When he did talk, he spoke in curse words with anger and hate.

His melt downs were terrifying because he seem possessed in a rage state that he had no control of that left nothing but destruction in his path.

I knew that if we did not get some answers soon, he would have to go to a residential home. He stabbed our furniture with knifes, cut the curtains with scissors and would find ways to destroy things no matter what.

The expelling from school was hard because I got no sympathy as a teacher to stay home with him. I was torn between my work responsibilities and taking care of Ridge. No one wanted to sub for my class and I felt I was failing all the way around.

One of my worst behaved students asked to speak with me after class. He had heard of why I was absent and he wanted me to know that he too had learning difficulties but his mother refused to allow him to be tested many years before. He had terrible grades and said that he went to a gang to find the support he never got at home. He cried and told me that he wished I had been his mother and that I should do everything I could to help Ridge now before it was too late.

All those little problems that we see in elementary school just get bigger and bigger and by the time a child is in high school, the problems and the workload have each grown into a deep crevasse that few can cross. I was horrified when my students would drop out and no one cared. I was told by an administrator to let them go because they were just trouble.

I had already decided to quit as we were moving to Virginia anyway but finishing those last few weeks was very difficult.

Ridge went back to the school where he was suddenly a monster and was treated differently by his teacher as well as the students. He was shunned and shamed. Finally , they were ready to accept his testing results as well as do their own. Their three years of RTI showed no progress and after countless meetings we finally got an IEP in the summer after the school year.

The meetings were hostile and they tried to bully me. Patrice Hay went with me and asked important questions. We challenged stupidity and they did not like it. I recorded them and they got really paranoid. I was getting ready for due process. No matter what, it was a terrible time. I was rejected and scorned and my son was now seen as a threat.

By the summer, we finalized the IEP and I saw several ugly reports in his file. They spent a lot of time back tracking to paint him out as a dangerous person. I guess they were afraid and wanted to project on him and cover up their oversights.

Patrice started fresh by pairing herself with positive reinforcement and we began setting a goal to reduce cursing. Compliance to do almost anything was very low.

We could find no reinforcers that he wanted besides his dog. So, she became his reason to do anything.

That poor dog was the best therapy dog on earth. She rescued him after many melt downs and was always willing to be held by the angry energy until it released into sobs. Occasionally she would hide in her kennel and I knew she had to take a break.

School was out and we spent the summer balancing activities with free time. Patrice was an expert at meeting Ridge where he was and yet gently coaxing him out of his shut down into a little movement forward. I had some trouble at first with the reinforcement for every little thing. It seemed ridiculous to reward him so often because he was still difficult to deal with.

Patrice had a very positive attitude and she became my beacon of hope. Therapy is never just for the child but for the entire family. At this point I realized that my husband actually shared many of the same characteristics of Aspergers that Ridge had. She had many years of experience and she also had a spiritual presence that lifted all of us. She helped me to see how the school situation had been reinforcing his noncompliance and triggering his melt downs. 

At one point he was so angry with me that he started to punch me in the face. I remember just giving up and staring into his cold eyes of hate and I what I saw changed me. It was fear. He was like an irate crazy wounded animal that had no choice when cornered but to fight. I felt so overwhelmed and offered nothing but compassion even if I was about to be attacked. Amazingly, he put his fist down and ran away . Something deep and primal connected and I knew that I was going to have to crawl into that scary dark world with him to ever lead him back out. I really didn’t want to but I knew I had to. Without Patrice’s assurance and calling on the side of sanity, I am not sure if I could have done any of this.

He was taking several medications since his diagnosis. After school was out he said, “Mom, you know this is poison. But I will take it if you want me to.” I couldn’t any more. I threw them all away. He got better within a couple of weeks and most of his ticks (Scratching inside his ears and nose) were gone! So much for that crap as well!

I decided to take the college courses needed to become a behavior analyst myself. The terminology threw me into brain exhaustion but I learned things that every teacher should have been taught .

Just the concept of reinforcement was a new paradigm. As teachers, we are taught that praise, tokens, parties, etc are positive reinforcement. This may or may not be true.

In the field of ABA, reinforcement is something that you add or take away that strengthens or increases the behavior you want. The definition is based on the consequential effects of behavioral change. So, if you give someone praise and they increase that behavior it is positive reinforcement. If you give praise and there is no difference in the behavior then it is not positive reinforcement. Positive means something is added. Negative means something is taken away. This is mathematical not ethical. If you tell students that if they pass their practice test that they get to opt out of their final and they do, this is negative reinforcement.

So many teachers set up their behavior plans however they want and if the student doesn’t follow along, it is the child’s fault and they go to their planned punishments. That too is something I never felt right about in education.

I remember various examples of teachers writing referrals, sending their kids to the office or other rooms for time out, and endless benching at recess. The same kids would be there time and time again. The true definition of punishment is that it is something added or taken away that decreases the behavior. So, these punishments were never punishment! Obviously, many of our techniques were not working but as teachers we blamed the child rather than ourselves when the plan didn’t work.

As a behavior analyst, it is your job to find the reinforcers that the client will work for. This can be anything but it changes often too. There is no one size fits all. Punishment can be used but it harder to implement and rarely shows as much success. These concepts alone take some time to adjust to.

I had to change everything about the way we were interacting with Ridge. Patrice helped me to see this other way and to take data on where we were. I continued with my ABA classes and by the time summer was over, Ridge had started talking again and melt downs were less frequent. He had heard Dr. Jose Martinez Diaz (My ABA instructor at FIT) so often that he could write his own functional analysis plans. I had no idea at the time that his learning these ideas along with me would eventually help him to self manage his behavior.

We moved to Virginia armed with the protection of an IEP and my learning as much as I could about ABA. Unfortunately, I could not find another therapist like Patrice there. So I was the only Patrice…weird.

As soon as we drove up to see the new elementary school, Ridge urinated in his pants. It was PTSD. I felt so sad that he had been so mistreated and hurt for years. I had to help him no matter what. I could never afford to trust the system. I had to put all my efforts into being his therapist and mother.

The next year was a time of rebuilding for Ridge. His 3rd grade teachers were kind but he was very much afraid and anxious. He had stopped most of his aggressive acts and was accepted by the new students. I went to the school to have lunch with his class one day and a little girl with ribbons and bows was sort of in charge at the table. I was very careful not to say too much that might embarrass Ridge but at one point she noticed us and said, “Is this YOUR son? Do you know that he GROWLS?” I said, “Really? That is great. He hasn’t bitten you yet has he?” She looked aghast and gave me a disapproving “hmph.” I was at a new low of being judged unworthy by a third grader.

His speech teacher (that I never met) was a godsend. She worked with him in small groups and taught conversation skills. Ridge would come home and tell me about what he learned.

I had never really understood that Ridge didn’t know how. It became my new understanding that everything had to be explicitly taught to Ridge about social rules. He had no empathy not because of being a monster but because he didn’t see or understand other’s points of view. Some experts call this mind blindness.

This could be taught however and I had a big assignment ahead of me. John Elder Robison’s book Look Me In the Eye was helpful to understand why these skills were so greatly needed.

I read lots and lots of books and talked to many specialists in many treatments. ABA combined with CBA (Cognitive Behavioral Therapy)seemed to be my best bet.Relationship Development Intervention sounded good but was too expensive for us.

Homework was a daily battle for 2-3 hours. I took data and eventually it shifted to a 1-2 hour block. A few months later, it was nonexistence of any fighting and was completed within 10 minutes. The same behavior plan was in place. The difference was that he chose to accept it.

I would listen to my ABA professors online and Ridge learned the concepts along with me. He was more of a behavior analyst than me! He wanted to start taking a counter to school to take data on his teacher of how many times she would say “be quiet” and get no response. I told him that it would be a great thing to study but that she would not like to be evaluated by him. Instead we took data on our dogs and trained them to do tricks. I would chart my data, created token systems and even used celerations charts like crazy!

I was on task with him when he was home from school and the rest of the day I spent watching ABA videos and homework. I was becoming more and more depressed as well. My life seemed to have no meaning except for charts and data and continued focus on saving Ridge.

My oldest son had started college at the University of Florida and stayed in Florida when we had moved. Maddie was at the middle school and our community was not friendly. I had no outside contacts and lost my personal identity completely.

We found that Maddie had a very severe scoliosis curvature and needed surgery, Ridge had a seizure at school and Tim didn’t get the promotion he expected all in one week. I truly felt that God had turned his back on me. I was trying so hard and felt totally forsaken.

I began to have dreams that I believe were divine messages of guidance. I was told that things are not as they appear and this gave me newfound hope to dig deeper. On that day, Ridge came home from school and looked and acted different. He was making eye contact with me and smiled . He said that he had had an awakening at school. He started chatting away like I had never seen before in a pleasant voice asking personal questions to Maddie and me. She wanted to know what was going on and I was terrified that a seizure was about to happen.I almost wrecked the car trying to watch him in the rear view mirror but somehow got home and to focus my complete attention to this.

More about his awakening in the next blog….IMG_0121 (2).jpg

In the Beginning…

Since birth, my son was different than my other kids. In the hospital his sensitive skin flared and burned at the touch of any material. I was sent home with a beautiful baby that within a couple of months had lesions all over his skin that no doctor could explain more than “eczema” and could not control. He nursed , we used no soaps, cleaned the air filters, gave him steroids and kept the various creams on but after 13 doctors recommendations, we took him to a children’s hospital. The pediatric dermatologists took photos of him as they had never seen such extreme eczema and treated him as a burn victim. After a week , we came home and it was back.

This was the introduction to how my life would be raising Ridge.

One night I stayed up searching on the internet and found a slide show intended for doctors. When I saw a child that had similar skin, I was shocked to read that he had died of a staph infection soon after. The training slide was to promote a drug that had been used to prevent organ rejection. This drug was being used topically with great success as an autoimmune suppressor. I went through doctors, pharmacists and finally found a trial study in another state to get the medicine. Sadly, Ridge was too young for the trial. I shamelessly used our daughter who had mild eczema to get the medicine. I did contact a very trusted pediatrician and he could see no harm in it and so out of desperation, I broke lots of rules and the medicine was successful and he had almost normal skin within two weeks. All this happened within the first year of Ridge’s entrance into this world.

Once he was stable, I wanted to get back to work. The demands of a chronically sick baby had left me exhausted and I needed the social connections and ease of a controlled environment. I got a job teaching but the difficulty of managing three children was more than I had expected. Two kids went to a day carer that added an hour of travel time before my job and they hated it. My oldest son was able to come with me as he attended the same school but I would find myself so nervous that I had to stop shaking before walking in my classroom and pretending everything was great.

As time went on I felt more and more chaos at home and more stability at work. I started to believe that I was better at being a teacher than a mother. Ridge seemed to like being alone, he didn’t laugh easily, he fussed and had tantrums and hit people. I thought his hearing may have been damaged because he didn’t talk much. The tests showed he was normal.

By the time he started kindergarten, his testing showed “at risk”in letter recognition and sounds. I had read to him since birth, worked on letters and sounds and given him as many environmentally rich experiences as possible. We talked about everything, we played at the beach, with animals, we had no TV , and yet he was not learning like the other children.

This continued and he only really wanted to go to recess. School was not fun and he met with frustration after frustration in 1st grade. The teacher could not understand how a child with such advanced language could not even write his name. I requested testing and suddenly the teacher started giving him “Fs” to cover herself I guess. I pulled him out and homeschooled for the next year.

Being a teacher with specialized training in dyslexia, I brought out the best I had -Orton Gillingham materials. I bought a program called Fast Forword that was guaranteed to improve his audio processing. I took him to a psychologist and he diagnosed Ridge as ADHD and we started medicines. The first week was amazing as he became more verbal, was able to write better and seemed more tuned in. It didn’t last however.

My husband was deployed to the middle east, my dad was dying of cancer and so I decided to homeschool my daughter too so that we could all travel to stay with my parents three days per week. My oldest son was in high school by then and had to fend for himself. After a couple of months , my dad passed away and I collapsed. I enrolled the kids in another school and things seemed to be coming together. The counselor suggested we put Ridge back in first grade since his reading level was still so low and he had a compassionate teacher that worked with him. They school had their own Fast Forword program and used it as a weekly intervention with Ridge.

By the next year, I had rebounded and decided that it was time to take on a job again. (We were having terrible financial trouble as the real estate market had tanked and we had several investments that turned into catastrophies) I got hired to teach reading at the high school to kids that needed remediation and Ridge was right across the road at the new elementary school with his sister.

No formal testing had yet been done by the school. Here was a student that the mother requested testing since kindergarten, he had terrible grades, a retention and several interventions. They call it “RTI” and it is designed to use as a structure of help before just throwing a child into “special ed”. In this case , it was used as a hurdle to keep my son from getting the services he needed. I finally found a private developmental pediatrician and her testing showed major dyslexia. She also diagnosed him with depression, anxiety and Asperger’s Syndrome. I was sickened as well as relieved with this labelling. I have never given much stock in testing and the labels we put on kids and in this case I was embarrassed that it was my child. I bought several books about Aspergers and I was shocked to see in print many of the exact characteristics of Ridge. I felt lost because I had worked with autistic children but they were nonverbal. I had never even heard of Aspergers and yet suddenly it all made sense.

At home , Ridge frequently had melt downs if I asked him to do things he didn’t want to do. We had some animals and pastures so as long as he was exploring and tearing something up outside he was ok. Taking him grocery shopping or out to eat was a battle and he would often attack his older brother. For some reason, he found an axe in the barn and chopped up his brother’s bedroom furniture. I had to watch out because he was drawn to weapons and seemed on a road of destruction. I smelled fires in our trash cans several times.

I went to the school with the testing results, eager to get the services he needed started. Speech, OT, and reading resources were at least a start. I was told that the school did not have to accept the testing and the school refused to do anything. It was war.

Ridge’s grades were plummeting with a teacher that could not have been much worse. 2nd grade should be fun but it was a nightmare for Ridge. The teacher was inconsistent. She would not get the kids ready in time to go to recess. Her english was poor. She did not have a good discipline plan in place. Ridge told me how it was and I dismissed it but then I actually saw how the teacher acted one morning of a field trip. Several boys ran around screaming in one another’s ears, there was no assignment whatsoever and the teacher sat at her desk doing something on her computer for over 45 minutes. I was livid! The field trip was a joke as she divided up kids with parents giving me Ridge and a little boy that had serious behavior problems. She gave out her telephone number and took off at Animal Kingdom. By noon, I called her and told that we had to leave so she needed to get the other student. We waited and she showed up with NO kids but her adult friend. We blew out of there and I promised Ridge I would never doubt him again.

My students at the high school were a mix of super kids to trouble like I had never known. I surmised that all the years of pushing problems through creates monsters at the end of the line. It was sad that those kids had not gotten the services they should have had and the attitude of nurturing and care was absent from the high school staff. It was a painful learning experience but one that prepared me to not accept incompetence for my son.

It all escalated one morning when Ridge’s behavior changed his world. He was at the early morning child care program at the school (run by an inexperienced lady with no structure in place at all) sitting on the cafeteria bench trading legos with his friend as he had done all year. Something happened in the deal that went bad and he had a true melt down. He attacked the friend and had him in a choke hold. The lady in charge started screaming and he kicked her and ran away. The assistant principal was just pulling into the parking lot and gave chase. He slammed Ridge to the ground and held him there. Quite a crowd gathered to view the spectacle and when released he tried to run again and was once again physically restrained and drug to the office.I was called to come get the monster that was now expelled from school and kicked out of the early morning care program. The behaviors from home had generalized to the school and suddenly they saw Ridge differently. Sadly they wanted to punish him rather than help him and I could tell that they believed I was the real issue.

I was furious! As I gathered up the prisoner and drove home, Ridge said that he wanted to kill himself and that was the only thing he could think of to do. He said that he would never have chosen to come into this world this way. He couldn’t read, he had constant allergies, and he hated everything. There was nothing left for him.

He started to chew his fingernails, his toenails and then the dog’s nails.

Luckily, I had a niece that suggested I call an ABA therapist. Applied Behavior Analysis is the scientific method of behavioral change and is the only research proven program for autistic people to make successful changes.

I was expecting more of the same ridiculousness we had experienced with his “teachers” but things  when Patrice Hay walked in the door.dirt ridge.jpg

Extremes

There are so many mysteries around autism. In my experience as a mother as well as a therapist, one of the hardest things to deal with is the extreme differences in behaviors that are often hard to predict.

For most of Ridge’s life, I expected resistance and complaining when we went anywhere- school, grocery store, trips, etc. The limited food interest was a constant problem too but then every now and then, my son might try something new and like it! Those moments were great but it would make me think that he COULD act differently more often.(And I would feel manipulated)

As a therapist, I would take data on the time it would take to start and complete homework. I tried positive reinforcement, prompting, and behavioral contracts. My data would show months of noncompliance with very little change and then one day, he decided to stop the fight and did his homework immediately and without any assistance. I wanted to see a progressive line of improvement but this is not how it went. I shared my data with my ABA teacher and he said, “Asperger kids blow our data and don’t follow along the expected course.” You don’t say???

This is confusing to other people as well. Teachers often judge my son as “able” and so they seem to get angry at him when he does not comply. Family members are confused as well. I felt that they often thought I was the cause. How could such variation be possible without clear changes in the environment or the plan? (It must be the mom!)

How many of you have been questioned why you put up with these behaviors? How many times have you heard that a good spanking would stop it? It is so aggravating to hear stuff like that because although maybe they want to help, they don’t understand the situation and are basing their suggestions on the assumption that we are at fault and that corporal punishment is the cure. 

I have come to the conclusion that especially Asperger folks need to feel in control and not coerced. They are so intelligent and quickly respond with counter control measures when they feel pushed. Schools are based on rules and routines that may or may not have legitimate reasoning. In fact, why do most schools require a silent lunch? Shouldn’t we encourage positive social interaction in a natural situation? I know kids get loud but the constant policing of noise levels makes me nervous too. In a way, I don’t blame them for pushing back against stupidity.(But , we all have to learn how to blend in somewhat to navigate the world.)

At home I have seen wild variations in behaviors without any commands whatsoever.

Earlier this week, I picked up Ridge from school and headed to the CrossFit gym as planned. He looked angry and  reasoned that he needed to go home because he had an end of year English test the next day( March is the end of the year?) I was struggling to see how the afternoon class would interfere with the test the next day and took him anyway. Once we got there, three athletes were completing a competitive work out for the CrossFit Open Games. We cheered on the amazing display of strength and endurance. CrossFit is a very close knit group where cheering for others is normal so he was used to this. Suddenly, he was out of his “funk” and when they finished, he decided that he wanted to do the same workout. The coach tried to suggest that he do the scaled version but he said he wanted to do the same workout that they had done with the “prescribed” weights for an adult male. (I did not know at the time that his dad had bet him $20 if he could beat his score.)

The next 25 minutes was grueling to watch as he threw up 95 pounds and hit the ground and up again to perform countless burpees. He was so exhausted but at the last minute he gave it everything and beat my husband’s score by 6 seconds. He stumbled outside, collapsed and threw up.

I was afraid that he would end on a negative note and never want to come back but then one of the men came over and congratulated him. He told him, “Ridge, you gave a tremendous effort and it reminds me that I can do more too. You are raising the bar for all of us. Great job, man!”

Maybe that is tricky part – finding the true motivations that our kids are working for. Thoughts are private events that we can’t observe like outer behaviors.

All I can say, is that I have seen amazing changes in my son. Often times it has to do with a person that he feels comfortable with that has encouraged him.

I have become a role to him that is more than a mom. I am often the cook, organizer, clothes washer, planner, checker, preparer, motivator, problem solver and other executive functions for him. I am more than a personal assistant though.

I have been pushed into roles I did not want. Advocate, fighter, mystic, and survivor. Most of us have become she-wolves in digging deep for answers that are not apparent.

“Ahhwooooo!!!!” to all my sisters in this pac! We are not alone in the wild ride!FullSizeRender.jpg