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

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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! 

Back to Basics-Epilepsy 101

This post is part of the Epilepsy Blog Relay™ which will run from March 1 to March 31, 2018. Follow along!

Back to Basics

The Boss (my son) and I live with epilepsy everyday and I recently had some interactions with the public that has led me to really look at the lack of emergency training and awareness of signs or understanding about epilepsy. To the few followers who read my blogs (and I truly appreciate you!), I decided to take a poll on Facebook about what to write for the March Epilepsy Blog Relay. The people have spoken! It is back to basics!

Some people can have one seizure or two in an entire lifetime that was brought on by an event. This is not epilepsy; Epilepsy is when a person has two or more seizures in a lifetime that are brought on by something is not a triggering event. People with epilepsy will also have abnormal electroencephalography (EEG) that is ordered and read by a neurologist. There are many types of epilepsy that all have medical terms but what is important to know is that seizures can start in one part of the brain and affect only that part of the brain or they can start one spot and effects radiate out. Sometimes people can have a couple of spots in the brain where they will start and radiate out (Miller and Goodkin, pgs. 3-6, 2013).

The tricky part is how the signs show up on the outside to others. The brain is a big place where so much is happening and depending on where the seizure happens, will depend on how the person feels/reacts and what the seizure looks like with symptoms. A more common type of sign, a harder one to catch, is the absence seizure which are short. The person will stare into “space” or “zone out,” have possible eye fluttering, stop all behavior, stop everything. Some people will black out with absence seizures and loose tracks of time of they happen often enough (Epilepsy Foundation, 2018)

The tonic-clonic (or Grand Mal) is the one most people think about when they hear the word seizure. This is the one where the muscles become stiff, the person will black out/pass out, and then the jerking movements are seen with possible loss of bodily fluids since there is no control. These are longer lasting around a minute or two. However, there are epileptic seizures that are classified in between the brief absence and the tonic-clonic one. The Epilepsy Foundation (2018) has provided a website with many resources about all the different types of epilepsy and the signs of symptoms of all the others if you want to research a little more into all of them.

It is essential for people with epilepsy to see a doctor regularly, take their medications, and follow all instructions for a healthy lifestyle. For everyone else, the question is posed, what do you do if you see someone having a seizure? How do you know if someone is having a seizure? I highly recommend looking into local places for a first aid and medical emergency training course. Usually you can find a place that is relatively inexpensive or EPIC, LI (located on Long Island) has training classes for free on epilepsy. Some people wear first jewelry, like myself, that states I have epilepsy so if I happen to be in public and something happens someone can read my bracelet and know my medical condition.

Unless someone has medication to stop a seizure, there is not much to do as a bystander except keep the person safe from environmental hazards and calling 9-1-1 if you are unsure about the medical history. The Boss has a plan in place at his school that if the seizure is less than 5 minutes, they do not have to call 9-1-1 and only need to call me, Momma Employee, to come and get him to recover at home. Please do not put anything the person’s mouth or hold them down in any way as you might cause more harm.

I recently posted on my personal Facebook page about a woman who drove in NYC and got into an accident and ended up killing two children and injuring others because she ran a read light. It was reported later she has epilepsy. I want to share some facts with you taken from Epilepsy Foundation (2018) since many could be walking around and not know they have it. I also like to put in here: 33% of autistic people have epilepsy. Please see a neurologist.

Facts:

  1. 1 in 26 in the US will develop epilepsy in their life
  2. 4 million people in the US have epilepsy
  3. 65 million people in the world have epilepsy
  4. One-third of people with epilepsy live with it uncontrolled because there are no treatments that work
  5. For 60% of the people with epilepsy, the cause is unknown

 

References

Epilepsy Foundation. (2018). Types of Epilepsy. Retrieved from https://www.epilepsy.com/learn/types-seizures

Miller, J. and Goodkin, H. (2013). Epilepsy (1st Ed). West Sussex, UK:John Wiley & Sons, Inc

 

NEXT UP: Be sure to check out the next post by LGS at http://www.livingwellwithepilepsy.com. For the full schedule of bloggers visit livingwellwithepilepsy.com.

TWITTER CHAT: And don’t miss your chance to connect with bloggers on the #LivingWellChat on April 2 at 7PM ET.