Jackson Stormes:A Difficult and Amazing Journey
Living with Dravet Syndrome and all the complications
Introducing Jackson Stormes
JACKSON: Jackson is an amazing little boy with so many smiles and no
complaints. He suffers daily from Dravet Syndrome. He is currently being treated at Hackensack' northeast regional Epilepsy Group.
SIDNEE: Is Jackson's an amazing big sister. She is a beautiful teenage girl with
normal teenage drama and amazing friends who love both her and her family regardless of the disability, disorder or seizures.
KIPPER: Jackson has a service dog Kipper. He is a G-Noodle or a Golden Doodle
Kipper is amazing and loves Jackson. He carries all of Jackson's medications for emergency and daily needs. He has other medical supplies as well. During a seizure, Kipper will aid the nurses in keeping Jackson safe and on his side. Kipper also aids in the safety of Jackson by being tethered to him and avoiding running off. Kipper is learning so fast and is very sensitive to both Jackson and his family.
MOM: Jennie is Registered Nurse in New Jersey and Pennsylvania. She works with other families and advocates for ongoing needs of the child and their families. Additionally, she employed with multiple employers as a RN in home care settings and subbing at local school districts for school nursing needs.
Following is a long article written a few years back for the self-employed business for mom. Over the years, many students and strangers have been interested and inspired by the situation and my desire to want the best for both of my children. It is a story of love, understanding and not willing to accept the unknown without even trying.
Jennie Stormes, NP, Instructor, Owner of Academy for Notaries
Academy for Notaries by Jennie Stormes is founded and created by Jennie Stormes. There is a long story as to how and why this blessing came to be. This story is not here for pity or sympathy. The truth is, I am just like everyone else. I have a life, college education and degree, family, children, husband and house and car. I also had credit cards, household bills and car payments. This is the golden life after all. Work, borrow, charge and payoff for the rest of our lives until we arrive at our death bed penniless? All was going well, until a chain of circumstances changed the somewhat American way of life.
How I became a Notary Public in California:
I became a notary public in 1996 at the request of my employer. I was the staff accountant at the time and they needed a notary. I drove to Sacramento and attended a seminar with 300 other students, completed my fingerprinting on the day of the course at lunch time and took the exam at the end of the day. I did not understand a thing. I did not understand when and where I would be notarizing, let alone, what would require a notarization. I was not even sure that I would pass that exam that was given at the end of the day. Two weeks later, I received my test results and surprisingly I passed. I knew nothing and understood even less, but I was a notary. Funny thing is that once I became a notary, my employer purchased all of my essential notary supplies, $10,000 surety bond and a $1,000,000 E&O policy. I was ready to stamp. I then proceeded to complete NO notarizations for my employer.
I kept my notary manual with my supplies in my desk for reference in case I was asked to complete a notarization. Six months later, still having completed NO Notarizations, I quit with my employer and was blessed with another job as the Office Manager at a medical facility in a nearby town. I loved my new responsibilities. I felt like I had worked hard after college and was in a position where my skills would be used well. I learned medical terminology and was set. I was recently married and had my beautiful daughter who was the light of our life. At the doctors office my notary skills were used occasionally by the other staff members and the doctors on staff. Nothing professional or complicated. No real taxing situations that would require any real in-depth knowledge or understanding as a notary. Just basics. At least I was using my notary commission now.
Marriage, Children and Blessings:
Soon my husband and I were expecting our second child, a son. I gave birth in June 1999 and like most twenty-something's', I knew it all and I did not need any help or guidance, especially with the second child. I was prepared on what to expect and was ready to be a working mom of two beautiful children. My employer loved me and the quality of work I dedicated myself to everyday. Maternity leave was wonderful and I enjoyed both of my children. Sidnee now age 3.5 and Jaxs, just born. I returned to work part-time to ease back into things and I had a nagging feeling that I was not suppose to return back to work. I had a nagging feeling that I was suppose to be a stay at home mom. Questioning myself and my intentions and family needs, I was confused and scared. My husband and I discussed the options and possibilities. After much consideration, a decision was made that I would quit my full-time job and be a stay-at-home mom. I did not know why I had this feeling, I just knew that my kids needed me.
Decisions and Actions:
With my decision, I went into my employer's office and had a private meeting with the doctor who had hired me two years earlier. I explained that I needed to be home with my kids. I did not quite understand the feeling, but that I was giving my 3 month notice and my last day would be December 31. He was grateful for the long notice and tried to talk me out of resigning. This new transition was met with mixed emotions by all: myself and my employer. Many changes were to come since I was the primary wage earner in the family at the time. We would manage and as a family we would make ends meet.
Within two weeks of the meeting with the doctor, the scariest and most life changing events began to occur. On October 21 (my mother's birthday) my husband and I were getting ready for work and I was dressing little Sidnee for daycare in a local neighborhood. I looked over at the bed where Jaxs was securely and safely seated in his bouncy chair and playing with his own arms and legs. But this time, things looked different. He was not playing. He was shaking awkwardly! Very rhythmically! What is going on? Sidnee never did this as a newborn. Jaxs was gagging and his eyes were rolling into the back of the eye sockets. Then the jerking stopped and started again, this time only on one side. Funny?! What was happening? As my husband called his mother who was a pediatric nurse at a local hospital. I began to notice that the jerking was stopping on the one side and moving to the other side. He was starting to turn blue! Jaxs was not breathing! Maybe he was chocking on something? We could not figure out what was happening to Jaxs. My mother-in-law did not say what she suspected was happening, she only told him to hang up and call 911. Within 3 minutes, our home was filled with emergency people that we would soon see very often. Most of these emergency professional came to our home often responding to seizures and offered many times to pray for our family and specifically Jaxs.
At the emergency room we were asked many questions by nurses and doctors. Fever and illness were ruled out immediately. Immunizations were suspected and considered since Jaxs had received his four-month immunizations just ten days prior to this event. We did not understand much and there was so much chaos trying to stop the seizure. The doctor we were blessed with was patient, understanding and through. The seizure lasted approximately an hour. With some Valium based medications, the seizure was stopped. Typically, seizures will end on their own and they are not life threatening. The doctor ran every test to rule out all possibilities. We had a CT-Scan for a hemorrhage or brain deformity, a spinal puncture to check for meningitis, blood work for a virus or other infection, and many other tests on the body and other secretions possible. Some preliminary neurological tests were completed. The wonderful doctor explained a lot to us and gave me many things to research and look into. This was a very emotionally exhausting time. We were sent home with a watch and see IF another seizure. No medical treatment was prescribed, only watching for another event.
Things were tense in our home. Every movement was scrutinized and observed, documented and dissected. Many nervous phone calls to the pediatrician and the local neurologists were exchanged. We were told to calm down and stop worrying. Easy for the doctors to say! They were not the ones having to watch for another seizure event. I began researching seizures, epilepsy and other neurological disorders. I read many books about children and epilepsy. I was thankful that I had a job that required me to know and understand medical terminology. I could communicate with and understand the doctors. I followed along and asked many questions. I took my baby boy to the neurologist for tests and they showed nothing. Things were looking good. No more events, nothing to be concerned about, nothing more to stress over! We began to relax and then I looked backed and considered my decision to give my resignation at the medical facility. I knew something when we made this decision. At the time we did not know the "why". So, this must be the "why", our son will need some intensive parenting. Some how the mother instinct in me knew that I needed to be home with my son to watch and help him grow. This second child would be different. I would need to be with both of my children to help them both grow.
Life would be different from now on. I had a deeper understanding of my purpose and claimed my decision to be a stay-at-home mom. I knew my purpose now. All I had to do was work through the next 2.5 months without another seizure and make it to December 31.
On November 3 (my dad's birthday) another seizure occurred in the same time of the morning, as we were preparing to go to work. The jerking was the same. I was just as scared and petrified. This was what we were to be looking for. I was beginning to relax and think that Jaxs was safe. I remember being told that 95% of the children who have one seizure will never have another one again. I was beginning to relax and now another seizure.
What did this mean now? What am I suppose to do with another seizure? Our world was turning upside down and we were lost in a medical nightmare? As my head was racing with thoughts and what will come next, the 911 emergency people arrived and they whisked both Jaxs and I away in the ambulance. The sirens had woken the whole neighborhood again. All of the neighbors were outside watching the drama and many were crying. Once again, this newborn was in crises and we did not understand and there seem to be no answers. If we the parents could not understand the situation, how could others understand the situation.
I can remember many offered us their prayers and I accepted them all. I knew that there was nothing else anyone could do since I did not know what to do to help myself. At the hospital we began with medications for epilepsy. We had many options and more research to come. Many medications to consider. Many treatment options to consider. Many choices and decision would lead to much research, friendships and doctors. I heard many hopeful stories of encouragement and too many horror stories. There was no longer a "normal" family life. We were in crisis. We still had many blessings and were trying to find a new normalcy that would be hard to find and rely on for very long. I continued to work through December 31 as I promised for the doctor and they finally found a replacement for my position. I had many days where my cell phone was in pocket for any emergency. One of the blessings that I received during this time was an amazing babysitter who loved Jaxs with all her heart and made a personal decision to dedicate herself to Jaxs and his intensive care by not accepting any more children even though she was not full. Her family needed the money too, but she was so concerned about Jaxs and understood the gravity of our nightmare.
First Medication (Phenobarbital) and Side Effects:
Jaxs received the loading dose at that second emergency room visit. The same remarkable doctor who was present at the first trip was on duty for this second scary trip. I was so pleased to see a friendly and understand face that seemed to have compassion and a good bed-side manner. The doctor remembered Jaxs and he did not repeat anything unnecessary. I came to really trust this doctor. He really was honest, yet positive about the options. With guidance and support, we began this journey in the world of a medical unknown: Childhood Epilepsy and all the options.
Medication Switch and More Side Effects:
The Phenobarbital was on board and the medication was at a therapeutic level. Jaxs did not thrive like a baby should. He slept all day and was always cranky. Basically, Jaxs was stoned. He did not have more seizures, but he was not living either. I would take him to the local neurologist and seek medical advice and guidance. After all, this is a new world of medical and we are all in shock and tried to discover the why is this happening to my baby question. The neurologist quickly decided to switch from the Phenobarbital to another medication: Tegretol. There would be a wean from one being slowly decreased as the other medication was slowly increased. This will be the safest and best method.
Life was great for a very short time. Jaxs was more awake and was less cranky. I felt like there was hope. This drug was much better and we could manage. There were a few side-effects and blood draws for levels, but we were willing to work within the medical professionals to find the best treatment for the epilepsy. About half way thru the drug change my husband and I began seeing some jerking. Not sure what we were seeing, we just took notes and called the neurologists office. Like most doctor's offices, we were dismissed by the front office with messages to the doctor and were told not to worry or concern ourselves. Young children jerk and we needed to relax! The frequency was intensifying. More calls and no answers. We began calling everyday and asking for help and guidance. I remember calling and being told by the office staff person that had been taking all of the messages "Just get used to the fact that Jaxs will have seizures for the rest of his life and you can not call us every time since there is nothing we can do. If the seizure is prolonged and lasts more than 5 minutes call 911 and proceed to the emergency room. They would wait for the report." Honestly, there was not much they could or were willing to do. This was such a helpless feeling. My son was having a "Grand mal" type seizure every day as opposed to once a week. This was an increase. Why was our family the only one concerned.
As the Tegretol medication was increased and the Phenobarbital decreased more, the seizures were daily and then three times per day. Still, the neurologist was not concerned. She did not return our calls. I had the doctor that I worked for call her and she admitted that she was at a loss. My son's condition appeared to be more complicated than she suspected. He should be seen at a bigger medical facility with more resources.
At the same time, I was calling our pediatrician's office and they were working on admitting him to UC Davis Medical facility for further observation and care. Our insurance declined to send Jaxs to UC Davis and redirected his care within the medical network to another medical facility in Sacramento: Sutter Memorial Children's Hospital. We were given a primary neurologist who did a great deal of work and investigation to discover what was happening to our precious baby. Days were slipping by and he was just not getting better.
Our hope was that this doctor knew more and could help Jaxs better. This is a crucial fact that my husband and I would soon discover: The brain is very complex and there is not much known about the brain, especially seizures. Medical science has come a long way, but this was still a vast unknown, especially when it came to children or newborn children. This was our new reality and root of a lot of frustration. I kept studying everything I could find and looked into all possibilities. I read about anything, good or bad and asked the neurologists many questions. Jaxs was an inpatient at the Sutter Memorial hospital for approximately 5 days. During this stay, it was determined that the increase in seizure activity was caused by the Tegretol. Yes, the medication that was suppose to stop the seizure activity was causing more seizures. I was just flabbergasted! Why? How come? Why didn't anyone share this with me before?
I talked with our absolutely wonderful pharmacist at our local pharmacy and began asking more questions and digging more. She explained to me that any drug that has the potential to decrease seizures also has the same opportunity to increase seizures. The smaller the child, the less they know and the less they can predict what one drug or another will accomplish. The only way to find out is by trial and error. Now my son is a huge medical guinea pig for science and the medical community. Prior to being dismissed from Sutter Memorial Hospital, the new neurologist abruptly stopped the Tegretol upon admission and increased the Phenobarbital again with another loading dose and daily maintenance doses.
Once home I thought about my new not so normal life and had to consider what I was going to do. I was still working for the medical facility. Could I continue and make it to December 31. This date seemed so far in the future! how was I going to help make money and support the family too. I began thinking and looking at all my options, resume, skills that I possessed and talking with my many friends, neighbors and family members. What I remember the most are the condolences and comments that they are so glad that they are not me. I wish I had that choice too. I did not want to be me. I wanted their happy, perfect and normal life. It sure seemed better than this complete uncertainty I was living 24/7.
Left Alone With All My Thoughts and Options:
I often thought about what others thought about our family, my decision to resign and be a stay at home mom and other random thoughts. I periodically would go back to my resume and consider what I could do, how I could do what and when I would be able to do whatever that idea was for the moment.
I kept remembering one time when Jaxs was admitted to Sutter Memorial hospital after the hour long seizure and neurologist change. On this one occasion the doctor from the medical facility where I was employed called me and asked me where I was at? I remember telling him that we were in the ICU at the hospital with Jaxs. The docs were trying to stabilize him, find a "Magical" medication cocktail to stop the seizures and discover how to help him best. I was basically caring for my newborn the best way I knew how to at the time. His next question was not intended to be cold and cruel, but it felt like an arrow thru my heart. I knew I had obligations and responsibilities. I had trained my staff well to work together in my absence and to run the office, fill the schedule with patients, complete the billing and receive payments, and many other tasks. I was not prepared for his question: "When are you returning to work? You have been gone for a long time!" Ouch..... I remember being very numb and answering with "As soon as I can sir." I can not remember all of the details, but I do remember asking him if it would be better if I resigned immediately? I did not know what else to do. My son needed me. This conversation made my reality clear. I could not go to work for anyone else. I needed to find work for myself, with myself and be myself. If the doctor I was working for did not understand the situation and medical emergency, how would an average person in the work force understand and accommodate my situation. I did a lot of thinking and a lot of soul searching. Many friends suggested many opportunities: Avon, Amway, Tupperware, Pampered Chef, Kids Toys, Sex Parties (not for the sex, but for the clothing, toys and accessories) not for me, and many other reputable companies. I could sell these products and host parties. I could find something that did not require parties, only sales. My mind was thinking and researching.
All the Opportunities and My Choices:
I talked with many people and considered many different sales products. I kept remembering that I was still a notary public. I was not a good notary. I did not remember much from that class three years earlier with 300 plus people in one room. I still had the handbook with all of my supplies. The $1,000,000 E&O policy had expired. Every time a staff member needed a notarization, I consulted the handbook. I read first and then asked them to return after I could finish my research. I was repeatedly reminded by others that I was a notary and that notaries are in demand. I heard stories from my mother that companies are hiring notaries all the time to complete notarizations at the convenience of the borrower in their home and for a good fee. I doubted myself and dismissed this opportunity. I have to admit that it kept coming back into my brain often and I would dismiss it again as preposterous and out of my league. This would be something that I could not accomplish.
I decided to work with an existing company and to sell Pampered Chef. I could arrange my schedule and work around my husband's schedule and the medical emergencies. I began selling Pampered Chef in November 1999. I trained with Janet who was understanding and supportive of my situation. She had just moved to California from Texas and she needed sales reps. I needed to earn money. I had a few parties and had bookings from the parties for more parties. My family was great in hosting parties in their homes and subjecting their friends to my sales pitch for kitchen wares. I loved the products, but never felt comfortable selling the wares. I was told that I was great, but I did not feel great. I had high sales for being my first sales job, but did not like the maintenance and follow up that was necessary with the party hostesses whose house I had just prepared an edible treat in. I was uncomfortable in my own life. I was still trying to find a new norm.
I remember my worst Pampered Chef party. It was at my mother's condo. No one showed up. No sales. We still displayed the gadgets and prepared the treat. We ended up eating it ourselves over the next few days. During this alone time without any kids or distractions we talked about our failed party and other options. I remembering coming back to the "I am a notary!" Again. This keeps coming up. I begin to ask more questions. I have never really worked for myself, but it could not be much harder than selling kitchen wares. I was still planning and preparing a lot. I made decent money, but most was going to the Pampered Chef office and I would then get a slice the next month.
I began considering this notary option more and more. In between my searching the web and researching doctors and other medical treatments, I also looked at working as a mobile notary signing agent. I searched a lot when I was at home with just Jaxs. He was still having lots seizures and slept a lot as a result of the medications. He was still on the Phenobarbital at some pretty high doses and the neurologist had added another drug, Topomax. This combination was not working. I could not watch TV and I had a real hard time staring at my newborn and seeing a future for him considering the current situation. I reached out to other mothers of children with "Medically Refractory Idiopathic Epilepsy". (Translation: The source of the epilepsy was unknown and he was not responding to the medications that were prescribed.) The seizure types were now varied and increased without reason or cause.
The Beginning as a Mobile Notary Signing Agent:
I soon decided that Pampered Chef parties were not my thing. I could continue, but I was not happy or comfortable doing this type of sales. I decided I would be my own boss. I had many skills. I had a BS degree in accounting. I have learned a lot with my various employers in the past years. I was knowledgeable. I could complete tasks that I started. I did the research and could see the opportunities. I made a decision after consulting with my husband to stop selling Pampered Chef only 4 months after beginning.
I completed the parties on my schedule and began looking at my newest venture. I had no plan for success or failure. I had a notary journal and a notary stamp. I did not remember much and I was not aware of the current laws surrounding California notaries. I decided that this is where I would start. I enrolled at the local college and took the notary public education course. I did not take the state required test since I was not within the six month period prior to expiring. I just needed to better understand my duties and responsibilities. With this better understanding and knowledge of notary laws, I can plan and work at this new profession: Mobile Notary Signing Agent. I have always been one to do a job correct the first time.
After the class I was still scared. The knowledge did not help the butterflies and did not explain the mortgage side of things. But, I needed to be ready and I needed to work. I began advertising myself on the internet at different websites. I looked for companies that were hiring notaries to work for them. I completed every contract I could find. I listed myself on NNA's (National Notary Association) findanotary.com website. At the time, there was no cost and any notary was welcome. I soon did daily searches and completed anything new and signed up for anything that was free. I had no money that I could invest. I soon received a phone call to complete the first of many signings. I had created my own business. Now I had to keep it going. The Pampered Chef parties were done and I was officially a mobile notary signing agent. This is what I decided I wanted to do with my life.
On the morning of the signing I remember the FedEx man delivering the documents early in the morning. I was so pleased and happy that I had an opportunity to work and learn this new profession. I called my mother who has years (almost two decades) of experience within the banking, lending and mortgage industries. I asked as many questions as I could as fast as I could. My mother did her best to answer my questions and to explain all of the different documents. She outlined the most important documents and made sure that I understood these documents. I was sure that I could answer all the questions.
I arrived at the borrower's home 15 minutes early and reviewed the documents again. I looked at the journal and planned out what I was expecting. Finally, it was time to walk up to the door and ring the bell. I think that I wanted to run in the other direction. What was I doing? Who was I fooling? I took a deep breath and I rang the bell. The nice couple greeted me and showed me the kitchen table. The house was clean and they were nice. I could not answer many of their questions because they did not ask questions that I prepared for or I just forgot the answers. I could not even explain what the APR was for them when they asked. I left feeling really stupid and un-knowledgeable. I needed more education. I needed more assistance and guidance.
After the signing was completed, I returned the documents are instructed and billed for my services. I called my mother and told her about all of the questions and non-answers that I had. She supported me and told me that I would get it and grow to understand. I needed more experience. I needed more exposure to loan documents and she vowed to help me.
I did not sign up with any more companies. I did do more research during the wee hours of the morning or late at night when I could not sleep. At times when Jaxs was post-ictal (a sleeping period often following a seizure) I would also do research or clean my house. I read everything I could about epilepsy, medications and being a mobile notary signing agent.
Within a month my phone rang again. I was asked to complete another signing. I was pleased to hear that the loan documents were delivered early enough and I would be prepared this time. On the day of the signing I sat down on the couch and read every document. I read the title and I read the document to understand what I was presenting. I looked for the required details for the appointment. These details were: who were the signers, where did they need to sign and did I need to collect any monies from them to close the loan. I was now determined to understand and know these documents. I was not necessarily going to share this information with the borrower, but I was not going to leave this house feeling stupid. Not again. I read the entire loan package like I had a final that evening. I was prepared. I arrived early again but had more confidence this time. I rang the doorbell and once again was invited to the kitchen table. I observed another clean house and experience very nice people. I did leave the borrower's home feeling better this time. This was such a different experience, but I still felt like I needed more education.
On the suggestion of family and friends, I looked in the local phone book and I found the notary public listing in the yellow pages. I got the nerve to call the first person listed. When she answered the phone I politely introduced myself and asked if this was a good time to talk. I was growled at and asked what I wanted. I explained that I was a new notary and I would like to mentor with her and was wondering if she was interested. Before I could continue and ask her what her fee would be, she hung up on me. Okay, set back.
Maybe this is not such a friendly market after all. I jumped down another couple of names and made the same presentation. I chose to call a male name instead. I received the same answer, but at least this guy was nicer. He said "Good-Bye" before hanging up on me and telling me that he did not have time to waste on me.
I wished at that time there was some organized way to receive the education and experience that I was searching for. Apparently I would have to get experience and an education all on my own. This is exactly what I planned for next. More education with loan documents and within the mortgage industry. I would read articles and follow trends. I looked up terminology and read what I could. I asked questions. I enrolled for a Real Estate Principals courses at the local college and another very small seminar on just loan documents offered in the Bay Area of California at another community college. I felt better prepared and understood a whole lot more.
I was happy with the six signings per month I was receiving, but I was ready for more. Jaxs' epilepsy seemed to be controlled by the drugs and I was able to work around the family schedule and my husband's job. Sidnee was a happy 4 year old and loved pre-school. During this period I kept remembering my need for education as a notary public or mobile notary signing agent. My closest friends and family all told me to remember the need for notary education because that may be what I will be doing in the future. I remember laughing at these suggestions and saying "No Way! I already have my hands full."
Education, Preparation Experience and Marketing:
Once I had conquered the notary education and expanded to preparing for loan signings with continuing education and taking many hours to read many sets of loan documents, I was starting to get more experience. No one was calling and complaining about my work and I was error free. I was now educated, trained and experienced. I was ready to kick it all up a notch. I had seen a website that had a small membership fee. This organization no longer exists, but was called NASA (National Association of Signing Agents). They also had the ability to certify that the notary listed had a certain level of experience. I decided that I had an extra $25 and I could afford the investment into this organization.
I joined and listed my services. This was the best investment I had made during this whole period. With this membership, I was able to access the list of companies looking for Mobile Notary Signing Agents. I registered with all of the companies and I waited by my phone. Within a few days, I was receiving phone calls. That first month I had completed 20+ signings. The following month I completed 30+ signings. The next month I had completed 40+ signings. The following month I completed 50+ signings. For a couple of months I would have 30-50 signings completed. By now, my new business was great and I was happy. We had the extra money, but my husband was not happy with my work load. We had some scheduling conflicts and hired some sitters. This situation lead to some arguments and I finally decided to only work 20-30 signings per month. This was an amount necessary to live comfortably and have extra money. Stormes Mobile Notary Services was doing well. I was networking with other notaries and we were sharing ideas and helping each other with signings. This network was priceless for me. If there was a medical emergency for Jaxs, I would call anther notary and the other notary would take the signing for me. There were occasions where the favor was returned. I have meet many great friends and now, fellow notaries, who were once one of my borrowers.
I reached a point where the market was great and I was happy. I enjoyed my job, but knew that there was more. I had done zero planning. All good business' must plan for the future. I began some planning. The first try was okay, but with more experience, I have attained new levels of planning and strategizing. I was also having many friends and friends-of-friends asking me to train them to do what I was doing. I took many notaries under my wing and trained. I trained and planned and trained until I could train no longer. There were only so many days in the week.
I began training in small groups of 5-6 people. I was encouraged by these students to have bigger classes and do this for a living. The seed that was planted so long ago was sprouting. I did begin to plan for seminars in Stockton, CA at a local hotel. I planned and marketed and began sharing with strangers my experiences and knowledge. To this day, I love what I do and have enjoyed the journey.
Newspaper Articles about Our Medical Situation with Jaxs:
I have been blessed along this road to share our family's struggle with epilepsy and learning disabilities with our local newspaper. The first article "Riding out the Stormes" written by Alejandro Lazo and published on January 24, 2004 won the Epilepsy Foundation Newspaper Journalism Award for the year. During the years of the growth of Stormes Mobile Notary Services and Academy for Notaries by Jennie Stormes, we had some tough medical times. From reading the first newspaper article published in the Lodi News Sentinel, you can see that we were receiving neurological care for Jaxs at Stanford University in the Bay Area of California. For insurance reasons, the doctors in Sacramento were no longer able to care for Jackson or receive prior authorizations for his care. We did receive great services and care through many tough times. Many med-flights, hospitalizations and emergencies later, 35 failed drug therapy combinations and one successful but failed attempt at the Ketogenic diet, we were still having uncontrolled seizures. I still demanded answers from the doctors even though we all knew that they did not have any answers for me.
I did not want to give up on my son. I asked many times for an implant for the brain that helps control epilepsy. I was finally told by the neurologist and other staff members to take Jaxs home and love him as much as I can. Some day he would no longer be with us and that the odds of a prolonged seizure taking his life were increasing with each and every seizure that were now occurring daily. I was devastated. I remember firing the neurologist at Stanford and being very anger that I was basically told to go home and wait for my beloved son to die some day soon. No one knew when and no one knew why. I had always had the same pediatrician and had made a friend at the Northern California Epilepsy Foundation who is also a notary public. I asked more questions and had Jaxs referred to UC Davis.
The insurance company finally approved the referral and I was ready to get another opinion. I was once again devastated by the refusal of UC Davis to see Jaxs. At UC Davis, they are so overwhelmed with referrals that they have to refuse services to many children. The reason for the service denial was that Jaxs had access to appropriate neurological care at Stanford with an accomplished pediatric neurologist. I was not ready to give up. I called the nurse practitioner and pleaded our situation and advised that we did not have medical care at Stanford. I explained that at Stanford they had given up on him. This was easy to do. There are so many children needing care. My son was not responding to the treatment and with each failed treatment the odds of anything working diminish significantly. I explained that I had obtained the insurance approval and that we were without a pediatric neurologist. I explained that I want to try the VNS (the pacemaker for the brain) that has worked in many children and adults to stop seizures. It was experimental but we had nothing to lose. I cried through the scenario of no implant from Stanford and no hope. The harsh words and the stolen hope. The nurse practitioner listened and I was told that she would see what she could do. No promises, but she would call me back.
A few days later I did receive a phone call and the pediatric neurologist had agreed to reverse the denial and Jaxs had a new pediatric neurologist at UC Davis. With that first appointment were all agreed to try a few more drug combinations and the Ketogenic diet once again. Jaxs spent almost that whole year in and out of the emergency room and in-patient stays in local hospitals. At the end of the year, the new neurologist decided with Jaxs dad and myself that the next step would be the VNS. In January 2005, the neuro surgeon completed the out-patient surgery and Jaxs has had relatively seizure free days on many occasions. Once again, the Lodi News Sentinel published an article about Jaxs and his surgery: "Hope for Jackson" on January 29, 2005 by Sara Cardine. They accompanied me through the whole morning and left just hours prior to me being allowed to take Jaxs home to recover. Two weeks after the implant, the VNS was turned on and he has been a different little boy ever since. Jaxs is still challenged and busy. He now has more medical diagnosis' and is receiving special education services from the local regional center and the school district.
Some days are better than others and Jaxs seizure control comes and goes. I am forever grateful to all the doctors who have cared for Jaxs over the years, but especially to UC Davis and Dr. Barry Tharp for giving my son a new life. Dr Tharp and his team provided our family with another option to going home and watching my son die from yet another prolonged seizure as the professionals and specialist at Stanford Medical Center had. The last article in the Lodi News Sentinel "Severely Epileptic Child Finds Some Relief" published on July 2, 2005 was also written by Sara Cardine six months after the surgery was completed.
Educating Sidnee and Jaxs:
If you read the articles above from the Lodi News Sentinel, you know that I struggled for years with Lodi Unified School District (LUSD) in educating Jaxs. Sid was doing well at her school, but not excelling. I listened to other parents who fought LUSD for years and their advice was to move to another district or state. I felt that LUSD had to have learned their lessons over the years. I surely would not have a difficult time with them. Was I wrong. Every year we battled over the same services and he had relatively few. VMRC was no longer i the picture, nor were they offering any services, since Jaxs was over the age of 3, the financial responsibility lies with the school district.
February 2004 I had attended a Son-Rise startup training session in Sheffield, MA with my husband. I learned a lot about myself and my son. Much of the information was about the filters we use to filter our world and use daily to survive. They showed me that my son was not hopeless or helpless. He just communicates differently and needs more assistance, not less. With much hard work, he will and can learn. Son Rise is amazing and saved me from despair. Son-Rise is a relationship based program used to treat and teach Autistic children and is effective in teaching and reaching all sorts of special needs children. I received a book the previous Christmas from my mother-in-law titled, Son-Rise, The Miracle Continues, by Barry Neil Kaufman.
In March 2004 Jaxs was at school and he had a 14 minute seizure at on the playground. The school nurse was at the site for the seizure and called me to inform me of the seizure about 5 minutes into the seizure. She had the Diastat (rectal Valium gel used to stop seizures) in her desk, but she refused to give it to Jaxs. When I arrived at the school the seizure had just stopped and Jaxs had not been given the Diastat, 911 had not been called and I was upset. After I was with Jaxs for about 3 minutes, the 911 emergency people arrived and wanted to take Jaxs to the hospital. I was so angry. Why call them after I was at the school? Why refuse to give the Diastat which was in the school nurse's office desk? I immediately pulled Jaxs from school and began home schooling him daily using the Son-Rise Program and techniques. He began learning in this one-on-one environment and doing well. I filed complaints with LUSD. I was dismissed and given some many stories and excuses. I home-schooled Jaxs for the rest of this school year and through the following school year. At the end of this year, school officials came into my home and assessed Jaxs. He had progressed more at home than in the school room. They were surprised and happy for him. I was proud of myself and ready to put him back into public school with supportive services. Maybe now the district would listen and educate Jaxs! In April 2005, I attended yet another IEP meeting for Jaxs. He was to be entering 1st grade in the Fall. I was not ready to give up on him and I wanted services and assistance. The team pulled almost all direct services and wanted to place him at another site with a new teacher. He was supposedly not eligible for speech handicapped, only severely handicapped classes. I observed the classes and they were all so sad and depressing. Understaffed and chaotic to say the least. With all of the reports noting all the things Jaxs could not do and the sad future they were seeing, I was devastated. The worst was when the Program Specialist, (school district administrative leader) checked the box and told me to accept the fact that Jaxs will never graduate from high school and he is not eligible to receive the high school diploma. Especially since that would require him to actually learn and be teachable. Now I was really crushed and lost. The same person also stated in a jokingly manner, "Maybe someday he will be gainfully employed at Taco Bell serving drinks!" That was it. That is your goal for my son: TACO BELL. I was not laughing and did not appreciate the comment. at all. I am aiming higher, but not starting at Taco Bell. If this is where he ends up, great, but not before trying everything I can to provide him with as many opportunities possible. Just like every other child in the USA. I wanted choices and opportunity, not more glorified babysitting service with no hope.
In the days after the April IEP meeting, I talked with my Son-Rise friends, family and other friends. Everyone thought I was crazy for questioning the school district. After all, they are the expert and know how to teach children. Well, just like other things in government, there are a lot of politics at play. I would soon learn and hate this game. What I did discover was amazing. There are school all over the county that are educating and curing children with Autism and other learning disabilities. This began the search for my children.
I listened to some of my Son-Rise friends. One parent had reluctantly enrolled her son into another relationship based program in NJ. I jumped on a plane and looked into the special school and regular school. I liked what I saw and began feeling hope again. I visited Celebrate the Children in Byram, NJ. With the assistance of a Son-Rise friend, I looked at houses and found a beautiful one to consider. The school district was great for Sidnee and she would be in a small class with other friends. I returned to CA and prepared to move the kids and I to NJ from CA.
July 2006 we arrived in NJ and began the process of re-establishing all of Jaxs services and enrolling the kids into school. Placement for Jaxs was relatively easy. Some applications, interviews, more IEP Meetings and assessments. There was one spot remaining at Celebrate the Children and he was accepted for the Fall 2006 term. His teacher Lisa is great. She and Jaxs aids have worked amazingly well with him and he can now count to 20, spells his name and many other things. These are all tasks that LUSD said he could not do in 12 years of schooling. Here he has done this in just one year. Jaxs is talking with such clarity that strangers understand him the first time. He uses 5-7 word sentences in multiple looped conversations. Imagine what he can do each year. Do not get me wrong. There is a lot of work to be done still, but there is hope for Jaxs. Especially now that we live in Hope, NJ. Yes, the perfect house I found back in April 2005 is in a little town called Hope, NJ. For the past months we have been here and are permanently moving to NJ in the summer 2007.
During this time, Sidnee had to catch up from the CA standards of education to NJ and is doing well
Notary Education in NJ:
I became a notary soon after arriving and did not have to become educated, prove my notary skills with a state test, or submit to a background check. I did not even have to show anyone my identification to obtain my notary commission. The legislator I wrote to endorsed my application without a personal interview and forwarded my application to the notary office in Trenton. I received my commission package in the mail weeks later.
Even scarier is that as a notary in NJ, I do not have to use a journal or a stamp. Subscribing witnesses are only allowed for real property. We need some real help here in NJ. There is no requirement for documentation and no standards for notarizations.
I have spent this time in NJ expanding the Academy for Notaries to as many of the community colleges within the state as I can. The students here are enjoying the notary education and appreciate the knowledge. I enjoy teaching and will continue to educate notaries in CA and NJ.
There will be more to come and I will continue to update my story as it develops. For now, I am not done yet. I still have a lot to do!!!
If I Can, So Can You:
If any of you are doubting yourself and your skills or looking at your situation and saying no way... That is okay. I said that to myself more than once too. The point is, anything is possible if you dream big enough. I am living proof that anything is possible. To this day, I struggle and I doubt. Then I take a deep breath and I ring the door bell. The only difference now is that the door bell looks different since I am not doing as many signings as I once did. I enjoy training and developing the training materials that you will enjoy and learn from. I am only one example of a success story. I still have a son with medical issues and severe learning difficulties. My beautiful daughter is enjoying her school and friends and is developing into a wonderful young pre-teen.
Thanks to all!
Thank you to everyone who has laughed with me, cried with me and been angry with me. I appreciate all of the support and all of the opportunities. For those of you who do not know me, I hope that you can take from my story that still has not ended, that anything is possible. Life is complicated and really tough at times. Anything is possible and opportunities are always available. I have created Academy for Notaries for anyone and everyone who wants to learn. I enjoy sharing all of my experiences and as I learn and discover my goal is to share with everyone I can as a notary and a person.
If you wish to send a comment to me, please use my email [email protected]