Sudden Loss, Sudden Grief

This post is part of the November 2020 Epilepsy Blog Relay™. Follow along all month!

People with epilepsy confront fear daily. We are brutally aware of Sudden Unexpected Death from Epilepsy (SUDEP) that takes lives every year. The pain of losing an individual can be exacerbated when a rare condition is not diagnosed quick. Comedian and actor, Bob Dibuono, witnessed this pain first hand with the death of his father to another seizure-related condition. He talked with me about his experience caring for his Dad until the end and his thoughts on his Father’s condition of New-Onset Refractory Status Epilepticus (NORSE).

Bob’s Dad was a healthy individual who played golf for exercise and leisure, sticking to his diet. In fact, he had been playing golf the day he became ill. His Dad came home from the golf course feeling disoriented. The seizures started by the time they reached the hospital that evening. The next eight weeks were spent running multiple lab tests, x-rays, and scans. Communication was poor between hospital staff and the family; however, they did work together trying to come up with a possible reason his Dad was presenting with multiple seizures. All tests came back negative which left doctors perplexed about the situation. They used heavy steroid dosages to control swelling which helped his Dad recover enough to be awake. During this time, he was also on seizure medications to control the status epilepticus. Soon, the steroids were scaled back per protocol and the seizures returned in full force. Bob saw his Dad lose his adaptive daily skills. Bob remained hopeful for an answer, driving to the hospital each day. He made his Dad smile, even in the end. His Dad was admitted to the hospital on October 3rd, 2019. He passed away on December 24, 2019.

It is hard to cope with the death of a family member, then throw in a cause that is not defined but is simply an explanation. New-Onset Refractory Status Epilepticus (NORSE) is that rare condition presenting in approximately 3,000 people per year in the United States. The prolonged seizures that occur with NORSE stem from a variety of issues including infections, strokes, metabolic, or idiopathic. The symptoms can be seen within 24-72 hours of presentation with many individuals making a recovery. Those who recover sometimes need lifelong needed supports (National Organization for Rare Disorders, 2020). Others do not get their second chance, leaving the mortality rate of NORSE at about 30%. This means around a thousand people will die this year with no firm diagnosis, but a set of symptoms and small explanation. This leaves the family left behind wondering if there was something that could have been done differently? Could medical treatment have been different? Were there signs they missed?

The “diagnosis” of NORSE for his Dad did not come until postmortem. Bob realized that communication between family and healthcare professionals is crucial. Seizures are scary and that first 24 hours seem to be pivotal for a neurology unit to get in for the evaluation. That is the one regret he has is not getting his Dad to the neurology clinic sooner (B. Dibuono, personal communication, November 2020).

Our epilepsy shows us the fragility of human life. We do not know when our time will come when our souls will be released from the physical body. It is our job to live life being happy, doing what is right by us. Take the time to express love in all forms of communication to each other. It is our responsibility to educate on seizure safety but not dwell on the “what ifs” in life. Bob has been my friend for thirteen years. I have seen him grow as a comedian, supporting him all the way. His father is with him, proud of the man he has become on this Earth. Keep making us laugh Bob. We need it.

Momma Employee (Autistic Audra) ❤

References:

National Organization of Rare Disorders (NORD). (2020). NORSE (New Onset Refractory Status Epilepticus) and FIRES (Febrile Infection-Related Epilepsy Syndrome). Retrieved from https://rarediseases.org/rare-diseases/new-onset-refractory-status-epilepticus-norse/

NEXT UP: Be sure to check out the next post at livingwellwithepilepsy.com for more on epilepsy awareness. You can check out any of the Epilepsy Blog Relay posts you may have missed at livingwellwithepilepsy.com

Snappy Title- It’s Just Self-Care Again

The mind filled with thoughts, racing from social scripts, past encounters, to theoretical situations that might happen in daily life. The hunger as it pulls my focus in multiple directions. Is it anxiety, epilepsy, insomnia, depression… or a mentally unhealthy combination? So, here we meet again 2:30am with tea and a cookie. The relationship with time has become almost meaningless these days. Seeking advice from family and friends was an option but has been met with the trendy new advice of self-care. When your brain processes information different than the average neurotypical, it leaves some of us wondering what the term truly means in the real world. How do I find this self-care and where do I get some?

Researching the definition of self-care leads to an endless trove of descriptors. It is an action, an adverb, an adjective! It is all of these with highly individualized strategies for each person. I wanted to make my own plan for self-care but needed a place to start. The definition was a dead end. It’s time to be redefined self-care! GO VEGAN. Don’t panic! It is not what you think it means since self-care does not necessarily mean changing your entire eating lifestyle.

GO VEGAN is an acronym and phrase I devised as a self-care plan. It stands for Values, Ethics, Goals, Actions, and Necessities, which are all based upon the person’s lifestyle. This theory of GO VEGAN has roots in Acceptance and Commitment Therapy (ACT) which was co-founded by Dr. Steven Hayes. The nature of ACT is to have a person define their values, accept feelings/emotions, live in the present moment with mindfulness techniques, and follow through with actions (Hayes, n.d.). Essentially, a person cannot attain true self-care when they do not have a clear set of goals, values, or coping strategies in place.

The next question on your mind might be “then what is the next step?” This will be varied for each person as self-care is individualized. Start by setting s schedule for yourself which will be blocked out only for self-care time. The self-care should be used for connecting with you again. Discover the inner soul that runs inside your mind. Many suggest using Yoga or stretching for mindfulness but that is not always helpful for neurodivergents. My brain works best when it is hyperfocused, blasting music, and running six different tabs on my computer. That may or may not be a metaphor for my brain. So find that time and environment just for you.

Writing is a great way to remember those thoughts during these times as well. Journaling is a tip therapists recommend everyday and it works. Pen and paper are great friends who like to be together. The journal can contain your personal values which have effect on your personal ethics. These combined result in actions from you! See where I am going with this now? One day you might suddenly realize you value authenticity more versus masking. If that happens, one might be inclined to reveal their true selves in public without caring about the consequences. These values result in an action that could lead to long term goals. A great example is the founder of Everybody Deserves Loves (EBDL), Alexa, who prides herself on being unapologetic about her body. She is a gorgeous person who decided that she didn’t care what the world thought anymore because she deserved love. It led her to create a non-profit located in California, which was also featured on Undercover Boss with Ashley Graham. Yes, Alexa is super cool, sweet, and answers her emails.

My last two tips about finding your definition of self-care are the most important. Set doable goals in the beginning or short-term goals. Achieving goals helps to build confidence and to keep you motivated for new goals in the future. These goals are meant for walking, and that’s just what they’ll do, one of these day those goals will need to be flexible. Life is not planned which bothers the heck out of me since I need structure and routine to function. My solution to flexibility as an autistic person is to have back up plans to the goals if life tells you to be flexible. It is a lot of social scripting but saves me the meltdown in the long run. Along with this is the need for boundaries. Limits are a hard one to set since most of us want to over step them on others or have others step on ours without saying anything. The fear of confrontation or hurting someone’s feelings takes over, only to crush your progress. There is a kind way to communicate boundary needs by being honest, using friendly tone, and kinder language. People who love you will respect those needs while the fake friends will continue to walk over your limits.

Self-care is important for overall good mental health. It is not defined in general terms such as an action or an adjective, but by individual people. Self-care can look many ways from getting a manicure at a nail salon to racing motorcycles across country. The effects from good mental health with self-care are increased energy, increased self-esteem, increased learning opportunities, and increased production at work or personal life. Go out and find your self-care. GO VEGAN.

Reference:

Hayes. S. (n.d.). About ACT. Retrieved from https://contextualscience.org/about_act#

 

Momma Employee/Audra Sisak 8/8/2020

Three Reasons a PT is Essential

*This article was written for Practically Perfect Physical Therapy at the request of Dr. Mora Pluchino. Please follow Practically Perfect PT for further resources. Contact her for your next appointment! https://www.facebook.com/practicallyperfectPT *

Three Reasons Why the Physical Therapist is an Essential Part of a Team for Those with Autism or Epilepsy

Autistics and people with epilepsy faces challenges every day of their lives. Sometimes those struggles require the need for therapists to come into the home or clinic to help work through those issues. The usual therapy that most people associate with autism is applied behavior analysis (ABA). This type of therapy is intrusive, strict, and sometimes traumatizing for the client. This leaves a parent or adult questioning where they should go next for help. Physical therapy (PT) is an overlooked area of expertise that is an integral part of any team. Their abilities reach far and beyond into the autism and epilepsy world. Here are three reasons why a having a PT is important for your success.

  1. Hypotonia, Dyspraxia, and those co-occurring conditions: Those physical therapists are here to help build muscle tone when hypotonia is part of everyday life. Someone who has hypotonia lacks the ability to gain strength at the same rate as a typical person. They also fatigue easily causing them to seem lazy or tired all the time (Boston’s Children’s Hospital, 2020). Regular sessions with the PT can maintain tone along with help build it. Dyspraxia is a developmental disorder which can show up in many ways but a few signs are poor posture, clumsiness, poor eye-hand coordination, lack of midline crossing, and many others (Dyspraxia Foundation, 2020). The PT working on a team with other specialists can interact during activities to assist in a multifaceted situation. An example of this includes having the PT schedule sessions in physical education class (PE) so the therapist can complete goals like midline crossing, jumping, or gait during a game of tag. In one thirty-minute session, a PT can take data on many goals at once. A PT can work with others that have disabilities such as Ehrler’s Danlos Syndrome (EDS), Hypermobility, Lupus, and more.
  2. Sensory Processing Disorder (SPD): Physical therapists are trained to help those with sensory issues! They want to provide care that is comfortable. Any session with a PT should not be painful; if you are experiencing pain during a session, tell the therapist. They want to know! Sensory issues can cause discomfort in people and I know this from experience since I am autistic, me the writer. There is technology today available for light-touch massages, different oils/smells, hydrotherapy, etc. These machines or products help us relax enough to allow the provider to come near us or even touch our skin.
  3. Improvement of Cognitive Skills: Our brains are full of neurons that transmit information. These neurons build over time as we learn more information, develop with time, and have a certain amount of plasticity. Plasticity allows the neurons to rebuild new connections over time because of damage, trauma, or disease in the brain. Dr. John Ratey showed that movement or exercise activated parts of the brain associated with learning (2008). It makes sense that if students warm up their muscles by stretching for big activities, then stretching the brain and activating the learning areas would improve memory.

The physical therapist is a great addition to any team working in the disability field. They are a much-needed area for autistic students, children, and adults. Regular sessions should be allowed by insurance companies and the educational system for appropriate care.

 

References

Boston’s Children’s Hospital. (2020). Muscle Weakness (Hypotonia). Retrieved from http://www.childrenshospital.org/conditions-and-treatments/conditions/m/muscle-weakness-hypotonia

Dyspraxia Foundation. (2020). Dyspraxia in Adults. Retrieved from https://dyspraxiafoundation.org.uk/dyspraxia-adults/

Ratey, J. (2008). Spark! The Revolutionary New Science of Exercise and the Brain. Little, Brown, and Company: New York, NY

 

Love, Momma Employee (Audra) 7/15/2020

Weight Loss Surgery for the Epileptic

This post is part of the November 2019 Epilepsy Blog Relay™. Follow along all month!

I am Autistic Audra! I am 38 years old with a son who is also autistic with mental health issues and other disabilities like me. The other thing we have in common? We both have epilepsy. Our journey comes with ups and downs, but we are committed together as a family supported with love.

The diagnosis for my epilepsy came in my thirties just after my autism one. I had spent my whole life suffering from symptoms of repeated seizures. It exhausted my body along with my mind and spirit. The bittersweet relief of the diagnosis meant treatment, a lifelong disability, and knowing I wasn’t crazy. Complex partial focal seizures with secondary generalized seizures was the mouthful describing the types of seizures I experience daily. The medications were helping to decrease the number of seizures, but I was still experiencing at least 50+ seizures a year. This is not an acceptable standard anymore since the number of seizures increases damage to the brain or sudden unexpected death (SUDEP). We needed a different plan for me to get healthy.

The VNS implant was the first option discussed with the neurologist, but I wanted to go a different route. I knew some of my triggers were from hormones and other existing conditions such as diabetes and polycystic ovarian syndrome (PCOS). My mom works for a bariatric surgeon who had mentioned that reducing body weight via surgery would eliminate my diabetes and balance the hormones in my body. The theory was that my seizures would decrease from having weight loss surgery, which was the second option.

The VNS implant surgery could guarantee a better quality of life in my case, but the weight loss surgery could guarantee weight loss, regulation of hormones, elimination of diabetes, and possible decrease in seizures. My team, consisting of my primary care provider (PCP), neurologist, and bariatric surgeon, reviewed my medical background showing that a gastric sleeve would benefit me in the long run with possible VNS implant surgery after weight loss. This was decided since loosing the weight before brain surgery would make me stronger to survive the surgery and have a healthy recovery. The gastric sleeve being the best option since this would allow for more absorption of medications post-surgery.

Everyone was in agreement and a treatment plan was set. It was time to prep for a long requirement period for insurance along with the mental preparation to satisfy my autistic brain. The insurance requirements were two dietician visits a month, one PCP visit per month, continued weight loss of 5% of my body weight, and lab work. This took multiple lists a day with visual schedules to keep me on time with all the appointments. If I missed one in any of the months, I had to start over with the insurance portion. Autistic individuals are not always known for their awesome executive functioning skills and I am not an exception! It was exhausting trying to balance my appointments, home life, food diary, and mental health. My energy ran low being sucked into an abyss seeming as if it will not return. A light at the end of a seizure-free tunnel kept the spark inside me.

My personality is logical, analytical, and sarcastic! My surgeon understood autism; he told the truth about wanting to accommodate and help me with my needs. I won the lotto meeting Dr. James Sebesta of Multicare in Tacoma, WA. He treated me with kindness and honesty that allowed my body to relax around him and the staff. On the day of my surgery, I was being wheeled into the operating room (OR) and broke down having an anxiety attack on the table. It started to go into a meltdown, but I knew I didn’t want that for fear I would start to self-harm. Dr. Sebesta rushed into the OR speaking softly to me with one hand on my arm gently. He was reminding me that he was there, and it was going to be ok since he was not going anywhere. As I fell asleep on the table listening to his soothing voice, I knew I had made the best choice choosing him as my surgeon. Knowing your surgeon and having a relationship with the staff is important when prepping for this surgery since you will see them for a couple of years.

I suffer from depression, anxiety, obsessive-compulsive disorder (OCD), and sensory issues, which all poked their heads out before and after surgery. My executive functioning had diminished, which left me feeling depressed, giving me inertia, but unable to sleep from the worry or anxiety of my medical conditions. Does this vicious cycle sound familiar? My autistic brain needed some coping skills to get through the surgery. I made myself lists to help with organization along with visual schedules. I started to practice my own advice to clients with acceptance and commitment therapy (ACT) advice. The process of self-compassion had to be put in place again or my psychological health would fail. I spoke to the team and we decided on a larger amount of pain medications due to sensory issues. Plus, at least four weeks of healing (instead of the usual 2-3), along with a longer time on liquids for a smoother transition to solid foods. The process of meeting insurance requirements and finding the surgeon was not an easy task. It is to the many thanks of the team effort that I got to this point in the “game.” The people collaborating to help you are a dietician, insurance coordinator, bariatric nurse, medical assistant, physician assistant, primary care provider, neurologist, psychologist, and patient coordinator. Each professional has a specific job with a coordinated effort to get you to the finish line for better health.

The questions I receive today are mainly those regarding my post-surgery life. My feelings towards food have changed since I feel hunger sensation again. I get excited about eating since I feel hungry! I can only eat a few ounces of food before I fill up my stomach, so the excited I feel for food is short lived. My energy has returned with full force! It is the strength of high school all over again. This comes at a cost since I must drink small amounts consistently throughout the day. If I fail to drink or eat per the schedule of my dietician, I get sick with dehydration. This came at a terrible time when I was a conference recently lasting two days. I did not eat or drink enough the first day and I ended up having a seizure that night. It took me all the next day to recover.

My diabetes is in remission or diet-controlled per the medical code. The hormones from diabetes and my PCOS have balanced out quick resulting in no seizures. My surgery was August 26, 2019, it has been two months since that day, I have had two absence seizures and one myoclonic seizure. Two months has resulted in a mere three seizures total with my medication intake cut in half! At this point before surgery, I would have experienced at least fifteen seizures. Of course, the weight loss of almost 45 pounds currently is a huge bonus as well. This will grow to a larger number as more weight comes off in the future.

I can honestly say I am happy with the decision to move forward with the gastric sleeve instead of the VNS first. I am getting relief from my other co-occurring conditions along with relief from my seizures. The process is long and difficult, but if this autistic girl can get through it, then anyone else can do it. The next step in the plan is to see how much weight I will lose over the next year. The VNS implant surgery is postponed until we see how much we can control the seizures now that we have more “wiggle room” for dosage on the medications. Any day I can wake up and say “I don’t need brain surgery today” is a good day for me. Enjoying my newfound lifestyle, stomach, and feelings. Wondering if this will be the thing that gets me to my complete freedom.

❤ Momma Employee, 11/4/2019

NEXT UP: Be sure to check out the next post by Rachel at livingwellwithepilepsy.com for more on epilepsy awareness. You can check out any of the Epilepsy Blog Relay posts you may have missed at livingwellwithepilepsy.com

Autistics with Epilepsy Traveling

This post is part of the June 2019 Epilepsy Blog Relay™. Follow along all month!

Dedicated to my friend Chris. “No, Dude.”

Epilepsy can change many parts of the lives of those who live with it every day. We lose our independence from driving a vehicle, taking a bath, and traveling. Planning a trip locally takes less energy and effort but traveling distances can be a daunting task. So, what happens when someone wants to travel farther lengths or internationally? Let’s take a look at a few areas to think about when an epileptic need to travel for a long length of time or distance. Also, an interview with the parent of an autistic teenager with epilepsy who is planning a trip to Italy, desperately seeking answers.

Some Triggers: Stress, time changes, anxiety, cabin pressure changes, sleep disturbances.

Medications: Take enough in a travel container for the entire trip plus a couple of days for emergencies.

Time Zone Changes: Gradually adjust to the new time change. During the plane ride, take medications as usual but once at destination, adjust medications to the new time zone as best as possible. (Epilepsy Society, 2019)

Public Transportation: Try to plan as most as possible with any company or public transport. This includes reserving seats, pre-boarding, meal accommodations, and much more! Agony Autie (Sara Harvey) had an issue while she was traveling on the public train system in the UK. She is an autistic with Ehler’s Danlos Syndrome (EDS). She must travel with her cane and electric wheelchair due to the physical disabilities from the EDS. The train has seats reserved for those with disabilities and she had reserved them while traveling with her family (Hockaday, 2019).

Airline Travel: Call ahead of time and speak to someone from the specific airline. Let them know you have a child with epilepsy and other disabilities or that you are the one with disabilities. Ask for accommodations! Traveling with an animal, special seating, boarding first, special foods, etc. Airlines are generally nice about the accommodations if planned ahead of time. I have only run into one airline that treated me with disrespect as an autistic with epilepsy. Always carry a seizure response plan on hand along with wearing medical alert jewelry. Print a second copy of the emergency plan to give airline staff (Schachter and Shafer, 2007).

VNS: Bring info about the type of Vagus Nerve Stimulation (VNS) with the response plan. Also, pack two magnets; one for the carry on and one to give a travel companion in case of emergency. The magnet does not go in purses or anywhere it can ruin credit cards or other electronics. It would be helpful to carry medical tape in case you need to place a piece on the magnet over generator. Check the geographical area you will be traveling to see what hospitals and specialists are in the area (Schachter and Shafer, 2007). International travel can pose an issue with insurance and payment. Again, check the medical community about insurance status (socialist healthcare) or if traveler’s insurance is needed for the trip.

Some autistics with epilepsy are speaking and some are non-speaking. I found a guidebook that can help translate important phrases, such as “Where is the pharmacy,” for who need to travel around the area. These can be programmed into AAC devices, software, learned in sign language, or simply print the pages so you can show a taxi driver what you are looking for in the area. https://www.ibe-epilepsy.org/wp-content/uploads/2017/08/IBE-TravelHandbook-2017.pdf Further accommodations for language might be needing an American Sign Language (ASL) interpreter or carrying a device with text to speech.

I wanted to reach out to a parent who was in the process of trying to plan an international vacation. This mom, Stephanie from Holbrook, NY, is planning a trip to Italy. Her oldest an autistic eighteen-year-old with epilepsy that needs a full-time assistant for daily tasks. I wanted to know what her main concerns were and what we could do to help:

Interview with Chris’s mom, Stephanie from Long Island, NY, via email:

  1. Where are you planning on traveling? Italy
  2. Have you traveled outside of the US before? Yes, off the continental US, the Bahamas, and Hawaii
  3. Have you traveled within the US? Yes
  4. What is your biggest worry when traveling with Chris? (Or two) A medical emergency or a legal issue
  5. Have any governing bodies or agencies been helpful? No but we haven’t reached out to any in regards to travel yet.
  6. Are there any restrictions with passports and disabilities? As of now no. I know the current administration is trying to change the policies and requirements. European countries are looming to require visas for leisure travel.
  7. Do you plan to travel with a service animal? No
  8. What can professionals or the government do to help ease your mind for travel? Anything we can do at Living Well With Epilepsy? Connect us with people that could give advice about Italy.

Stephanie, I am going to do my best leaving some information here regarding travel in general with tips. The guidebook should with phrases and contact information about the country you are traveling to for vacation (or business). Fill out the application now for a passport before the rules change in the future. The cost could go up or other countries might change their requirements as well.

I would also like to see a better navigation system on the government websites for traveling with disabilities. My job is a freelance writer and blogger. I work at researching products and ideas online before posting on my website. If someone who was not savvy in doing research, especially on a government ran issue, it would be very challenging to find a step by step helpful guide about how to gain access to resources. We need a website or link to resources that can help guide someone with a step by step process of traveling with disabilities. It would promote tourism in other countries, open up more government jobs, and increase spending with the increase in travel expenses.

Sincerely,

Momma Employee

References:

Hockaday, J. (2019). Autistic woman ‘barred from Virgin train’ after row about re-heating food. Retrieved from https://metro.co.uk/2019/05/21/autistic-woman-barred-virgin-train-row-re-heating-food-9624484/

Epilepsy Society. (2019). Travel And Holidays. Retrieved from https://www.epilepsysociety.org.uk/travel-and-holidays#.XPlMHYhKjD4

Schachter, S. and Shafer, R. (2007). Types of Travel and Vacations. Retrieved from https://www.epilepsy.com/learn/managing-your-epilepsy/adapting-plans-travel/types-travel-and-vacations

Schachter, S. and Shafer, R. (2007). Travel Tips for VNS and Other Treatments. Retrieved from https://www.epilepsy.com/learn/managing-your-epilepsy/adapting-plans-travel/travel-tips-vns-and-other-treatments

 

NEXT UP: Be sure to check out the next post by Abby at livingwellwithepilepsy.com for more on epilepsy awareness. You can check out any of the Epilepsy Blog Relay posts you may have missed at livingwellwithepilepsy.com

Regulate? SA, ESA, TA!

This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along!

It was a quiet evening when I decided to watch a new show outside of my usual routine. This was unusual for me since my routine is important for me. It helps to maintain the chaos in the environment which could be sights, sounds, deadlines, stress, or medical issues. This night on Netflix a show caught my eye called “Dogs.” Episode featured a family that was receiving a service animal (a dog) to help detect seizures for one of the daughters who had been diagnosed with epilepsy. It hit close to my heart since I have a service dog and rely on her for many parts of my daily life.

The young girl who had epilepsy in the episode also had a sibling and some close friends. The idea was that the dog was going to be a “family pet.” I already knew how this was going to end for her sibling; it was sad and frustrating for both sides. I have written about service animals in the past but I wanted to delve a little further to get a better understanding to educate the public. My need to satisfy that itch again for reading, researching, and knowing all about a subject is coming again!

The acronyms in the field for service training are SA (service animal), ESA (emotional support animal), and TA (therapy animal). Generally, dogs are trained as a service animal but the regulations have recently changed to allow miniature horses. Service animals are trained to perform tasks for an individual with a disability or chronic illness in some way. These tasks can be recognizing low or high blood sugars for diabetics, helping to support a person during a seizure and getting help afterwards, opening doors, physical support for walking, mental support for anxiety, and so much more! Animals are wonderful beings that connect with humans on a different level. We do not speak the same language, yet we understand and love each other more than we love some people!

While service animals are covered under the American Disabilities Act (ADA), Emotional Support Animals and Therapy Animals are not protected under the ADA. However, the Fair Housing Act (FHA) does cover the Emotional Support Animals. Someone cannot be turned away from housing because of an animal that supports that in any way physically or mentally. So, you might be asking what is the difference between the three types? Here is the scoop in a nice visual because it is easier to see:

SA: Covered by ADA, Covered by FHA, Trained to do specific tasks for a person, not ok to pet. These animals will be seen in public anywhere. It is their right to be there since they are working.

ESA: Not covered by ADA, Covered by FHA, Provides emotional support only (specific tasks would be based on training and disability) to person, not ok to pet. These animals are out in public but please refrain from petting. They are also working and providing something for their person.

TA: Not covered by ADA, not covered by FHA, provides comfort to multiple people, ok to pet after asking. These animals are generally seen on farms such as goat therapy, equine therapy, or animals in hospitals/nursing homes to raise moral.

The part I came across in my research was there is no real organizational body that governs the regulations on these animals. I have seen multiple videos about people becoming angry because dogs were in a public space or because they were not allowed to pet the animal. In fact, I have had my fair share of angry looks and snarky comments from people when I told them they could not pet my dog since she was working. She is in a vest and wears a special tag that states she is a service animal. Recently, a dog became aggressive at someone in an airport biting them who was labeled as a service animal.

I decided to reach out to my friend and fellow autistic blogger Christa Holmans. She runs the page Neurodivergent Rebel and used to help train dogs to become service animals. I had always found this intriguing about her since I thought what a fun, cool job! She loves dogs and actually has four of her own who are very cute. But enough about her dogs.. The interview!

Me: What method of training is best for training animals?

Christa: Training methods that are positive and fun work best. You want your dog to be eager and excited to work.

Me: What animals/breeds do you find to be the best for service animals?

Christa: Temperament is everything – you want an animal who has low fear, is very calm, happy, and who enjoys human interaction. Working dogs make great service dogs because they WANT to have a job to do.

Me: Is there one certification process that is the standard for service animals to receive. Example- Doctors are part of the American Medical Association (AMA) and they are responsible for abiding those ethics for patient care. Do we have something like this for service animals?

Christa: In America, there is no requirement for you to register your service animal, in fact there are many organizations out there that “sell fake service dog papers”.

Me: Do service animals need continual training?

Christa: Yes! A dog’s training never ends. As dogs encounter new situations their training must be modified and adapted to compensate. Also, the dog’s handler’s needs may change and additional training may be added or adjusted to compensate.

The most shocking answer from her was organizations are out there making money selling fake papers when you DO NOT NEED them. This is scamming people who do not know about the department of justice enough to work through what is legal. I trained my dog so she is personalized to my seizures and my moves. My background is psychology science and biomedical sciences so I felt comfortable with my knowledge to train my dog, TeeTee. Training an animal to suite your needs of specific tasks is something that is complex and requires time, energy, and finances. Local trainers are available, like Christa before she retired. Remember, these animals want to work but sometimes they do not always graduate. Those who do not graduate make wonderful pets or therapy animals too! Canine Companions do provide free service dogs but the last time I checked the wait list, it was about 2-3 years.

If you are looking for a service animal, emotional support animal, or therapy animal, I suggest you do some research about breeds, laws, and check out the links I have provided below. Let’s start a movement to get more regulations. I would love to see more animals working to help others out there! Thank you TeeTee who recently saved my life… that is a story for later this month.

Momma Employee 3/10/2019

NEXT UP: Be sure to check out the next post by Teo at livingwellwithepilepsy.com for more on epilepsy awareness. You can check out any of the Epilepsy Blog Relay posts you may have missed.

References

American Disabilities Act (ADA). (2010, 2015). Frequently Asked Questions, Service Animals. Retrieved from https://www.ada.gov/regs2010/service_animal_qa.html#cert and https://www.ada.gov/service_animals_2010.htm

American Kennel Club (AKC). (2016). Service Dog Training 101-Everything you Need to Know. Retrieved from https://www.akc.org/expert-advice/training/service-dog-training-101/

Assistance Dogs International (ADI). (2018). ADI Standards. Retrieved from https://assistancedogsinternational.org/standards/adi-standards/

Canine Companions. (2019). Assistance Dogs FAQS. http://www.cci.org/assistance-dogs/assistance-dog-faqs.html

Holmans, Christa. (2019). Email Interview. https://neurodivergentrebel.com/

Representation

I want everyone to know this about me…

I support equal rights.
I support the LGBTQA+ community
I support the mental health community
I support the disability community
I support the neurodivergent community
I support a diverse and cultural society
I support the binary and non-binary community
I support children and FAPE and IDEA

I represent RedInstead, CrimsonAu, Light It Up Gold. I support companies that help neurodivergent and disabled communities with support services, NOT cures for autism. I represent red and purple for my epilepsy. Self advocates need to be actively heard more!

I do not support companies looking just for research on eugenics. I’m not a Light It Up Blue person (I’m more of a rainbow gal 🙂).

In this house, we can go from making fart jokes, to singing Frozen, to playing Jedi Training, to dress up (super hero or princess), to sitting in silence. We are pro stim.

My mask came off awhile ago and I have not looked back. It feels good.

504 and the IEP: Five Steps to Take for Understanding Your Childs Rights

This post is part of the Epilepsy Blog Relay™ which will run from November 1 through November 30. Follow along and add comments to posts that inspire you!

504 and the IEP: Five Steps to Take for Understanding Your Childs Rights

Parenting is a tough job and adding epilepsy to the situation challenges even the fiercest parents. The doctor appointments, the medications, the surgeries, and the constant worry. The last part any parent wants to worry about is the support services for their children within the school system. Children with epilepsy are allowed services but going through the tangled web of educational laws can be confusing. The question is always where do you begin as the parent? Here are my top five rules when looking at 504 plans versus IEPs (Individual Educational Plans) and how to get the services your child needs to be successful at school.

  1. Know the definition between the 504 and the IEP. A 504 was part of the Rehabilitation Act of 1973 and states that a child may get a plan at school for one if they have a disability that limits part of a major life activity. The 504 does NOT provide the child any legal protections like the IEP can but is more of a modification. These are for children who do not need special needs education classes (Wright and Wright, 2017). A child who broke their leg needs a 504 since they will need accommodations. This is an over simplification of an example, but it works. The IEP is the larger plan for children who need more services and have a classification (or diagnosis) that allows them to have the IEP. There are thirteen main classifications and the IEP does provide legal protection for the student (Wright and Wright, 2017). Yes, your child can have both!
  2. Epilepsy Training for Staff. Yes! It is true that if your child has an IEP or a 504 plan at school, one of the requirements a parent can request is to have epilepsy and seizure training for all staff at the school. The training is done usually for the all the staff if requested but when I ask for it, I specifically say any teacher, therapist, aide, admin, adult worker or bus driver that encounters my son. This includes lunch personnel or anybody on the playground watching him at recess. He has an IEP so this is covered by the Individuals with Disabilities Act (IDEA).
  3. Please read the Procedural Safeguards booklet. Every time a parent goes to an annual IEP meeting to review their child’s progress, or put a new one in place, the school is required to give you a new procedural safeguards booklet. Take the time to read through this because each state has their own laws that beyond the federal ones. The more knowledge a parent has advocating got their own child, the more power they must make the process a little less stressful.
  4. Communication is important. Keep a notebook or some form of open communication with the staff working with your child. Let them know signs of what your child’s seizures might look like, any medication changes, triggers, etc. I have come across many school districts that are uncomfortable having children with epilepsy in their school. This stems solely on the fact they have had no training (see #2) and are not aware of what epilepsy is or what to do. This is where the 504 can come into play. The 504 can list what to do in the event of a seizure and what medications your child may be taking. It also lists the doctors, the plan for the nurse, and any documents from the child’s doctors for instructions about swimming, driving, or swinging.
  5. Classifications for IEP. I will share these because I am asked this question a lot about what qualifies a student for an IEP over just a 504? A child can get an IEP under these classifications: Autism Spectrum (ASD), Traumatic Brain Injury (TBI), Intellectual Disability (ID), Orthopedic Impairment, Deaf, Deaf-Blindness, Hearing Impairment, Visual Impairment, Language Impairment, Emotional Disturbance, Specific Learning Disability (SLD), and/or Other Health Impairment (OHI) (Lee, n.d). Depending on the classification, depends on the type of services your child might be qualified for, so the class is important. If a child has epilepsy and TBI, as a parent get an IEP with a 504.

Keep fighting the good fight! As a parent, you know your child the best. If you get stuck and do not know where to go next, reach out to local support groups. Ask a special education advocate and hire one! (Momma Employee is in WA so remote consults only or workshops if willing to fly me!)

When the special education advocate can no longer offer services, the last resort is a lawyer, but let’s keep it positive!

Love, Momma Employee

References

Lee, A. (n.d.). The 13 Conditions Covered Under IDEA. Retrieved from https://www.understood.org/en/school-learning/special-services/special-education-basics/conditions-covered-under-idea

Wright, P. and Wright, P. (2017). Special Education Law (2nd Ed.). Hartfield, VA: Harbor House Law Press, Inc.

NEXT UP: Be sure to check out Jim’s post tomorrow at http://www.livingwellwithepilepsy.com for more on epilepsy awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com

And don’t miss your chance to connect with bloggers on the #LivingWellChat on December 6 at Noon ET.

Got Questions? Ask an Autistic and the NT 💜❤️

Momma Employee and The Boss are here enjoying our summer! He is about to start day camp soon and I will be loving that as well (Momma time to herself and social time for him!).

Before he goes back I want to get some writing in… what questions do you have for us?

We are two autistic people with epilepsy living together everyday with his Dad who is an NT.

He goes to school, I am finishing up school, are you curious what life is like with TWO routines in place? How about medicines? Stimming? Disability? Language? Labels?

Be specific is you can do I can answer for you. Now is your chance to ask an autistic!! Use this opportunity because children DO NOT grow out of autism or are cured of autism. They grow up to become adults with autism.

Love, Momma Employee 💜❤️

Side Effects from Drugs

This post is part of the Epilepsy Blog Relay™, which will run from June 1 to June 30, 2018. Follow along! 

As an autistic and living with epilepsy (and other chronic conditions) comes with accepting a life of many intertwining feelings. It is hard to pick out sometimes which is an oncoming seizure, or which might be sensory related and we need to stim. These feelings get jumbled when you start anti-epileptic medications (AEDs) and cannot tell what feelings are “true” and what is “false” since the medications cane sometimes give you reactions to your environment. As an autistic, this is highly confusing and can cause depression and anxiety if not recognized in the beginning. Thankfully, I had the support group to help me through my first three months but my son, The Boss, did not understand why he had to take medication every day when he started it. It was tough watching him go through the emotions, but we kept explaining to him that the feelings were not real. They were caused from the “orange medicine” that he had to take every day. It was a rough two weeks for him but his did not last long since he is young and only needs one medication. 

So, the question is for professionals, caregivers, and parents, what are the top five prescribed drugs and their side effects? How can you help the autistic person?  

Helping us: Assist with multiple sensory needs, be watchful of seizures, keep track of any increase in mood swings, reassurance everything will be ok!! Some of us love hugs and to be touched, and some of us don’t-please ask when you want to help reassure us. We need to stim-please don’t stop that behavior unless we are hurting ourselves, hurting others, or it’s severely interrupting our daily life. Many of the drugs can cause memory loss or trouble concentrating so please be kind if we don’t hear you, if we are tired, or we do not get it right the first couple tries. 

The top six common drugs: 

  1. Depakote-Weight gain, liver toxicity, pancreatitis, stomach upset, thinning hair 
  1. Topamax-Trouble concentrating, memory loss, nasal problems, decreased sweating 
  1. Dilantin-Seizures at high dosages, increased hair growth, gum disease 
  1. Keppra-Mood swings, changes in behavior, weight loss, loss of appetite, flu-like symptoms, memory loss, trouble concentrating 
  1. Zonegran-Kidney stones, memory loss, trouble concentrating 
  1. Benzodiazepines (Valium, Ativan, etc) (RxList, 2018) 

If you have any symptoms you experienced please feel free to share! I listed ones I had personal experience with and that were listed on the site. What got you through the side effects? 

<Momma Employee 6/28/2018 

Reference 

RxList. (2018). Common Seizure Medications. Retrieved from https://www.rxlist.com/seizure_medications/drugs-condition.htm#most-common-seizure-medications  

NEXT UP: Be sure to check out the next post at https://livingwellwithepilepsy.com. 

TWITTER CHAT: Save the date for the #LivingWellChat on June 30 at 7PM ET. 

Living Well With Epilepsy’s Epilepsy Blog Relay™ is an epilepsy awareness movement to designed to maximize collaboration and eliminate stigma. Thank you to our generous sponsors and partners!