Recalculating….

bbb36063997_1838393646206648_5468404218702331904_nBrett and I went on a grand adventure to Service Dog Training Camp for 10 days. Instead of graduating as a Service Dog Team Brett Graduated with his amazing Dog Taylor as a Skilled Companion Team. The reason is that Brett was not able to learn everything he needs to pass the Public Access Test with Taylor independently is he has a disability. I found it painful to watch as those around us struggled to understand how to reach him and  understand exactly what Brett’s disability is. As traumatic and life threatening as Epilepsy is for Brett, his intellectual disability that his Epilepsy Syndrome caused has the greatest impact on his life and his abilities. Last time it was tested, his IQ was 46. He carries a Moderate Intellectual Disability diagnosis, that is just a number and in no way defines Brett, but does explain why he could not perfect complete control and care for Taylor in 10 days. He is after all unable to care for himself completely without assistance. As I drove the 7 hours home I had a lot of time to think and reflect on everything. When we drove there we were mostly on highways, surrounded by farmland. It was beautiful, but pretty desolate. It was boring and seemed like the same scenery the whole way. This is probably what a lecture without visual aids is like for a person with Intellectual Disability. It did not take me long to realize that we were going to be going a different way… when I heard the nice voice say “RECALCULATING….”
  I inadvertently had missed a turn and somehow by the gift of technology managed to end up on the interstate. This route would take me a little longer (more time needed to reach the same destination), had two tolls along the way (would need more investment to get to the same destination) and there were more exits along the way (more visual cues). What a perfect analogy for intellectual disability. When Brett is taught the right way, consistently for a longer period of time he will be able to perfect the commands. This brings me to my point. Intellectual Disability. Most people do not understand how difficult things are for a person with moderate intellectual disability. A Cognitive or Intellectual Disability is when a person has deficits in thinking and reasoning skills. They usually have difficulty especially with abstract reasoning, being able to apply what they learn in multiple situations and grasping cause and effect. Attention spans are shorter, they experience difficulty with staying on task and have a terrible time organizing information. In order for an intellectually disabled child to learn information it must be broken into small concrete steps and presented in a way that they can understand. Each step must be mastered before another step can be introduced, they learn best with  sequential information. Most intellectually disabled people learn best with kinesthetic methods, meaning they need to learn in a hands on way if possible. They almost always need visual aids to get information to stick in the memory bank to retrieve it later too! Brett like his brother Brynn, looks perfectly normal and most would not realize they even have a disability. This is a blessing in some ways, but other ways more damaging. People tend to “look” at the person and expect them to be able to perform according to “age” and not ability. In many ways a person with intellectual disability will get less help and accommodations than a person who looks disabled. A person with Down Syndrome or Cerebral Palsy may “look” disabled but some are actually not intellectually disabled. The DSM-5 list Intellectual Disability as a disorder with onset during the developmental period (before age 18) that includes both intellectual and adaptive functioning deficits in conceptual, social, and practical domains. To receive a diagnosis of Intellectual Disability they person must meet the criteria deficits in intellectual functions, such as reasoning, problem-solving, planning, abstract thinking, judgment, academic learning and learning from experience, and practical understanding confirmed by both clinical assessment and individualized, standardized intelligence testing. The levels of Intellectual Disability are:

*Mild = IQ 55-70

*Moderate = IQ 40-55

*Severe IQ 25-40

*Profound IQ < 25

For more information about the abilities expected with different IQ ranges see:

https://www.merckmanuals.com/home/children-s-health-issues/learning-and-developmental-disorders/intellectual-disability

 

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Non-Epileptic Seizures?

So what are Non-Epileptic Seizures? You cannot be among the Epilepsy community too long without hearing or seeing the terms Pseudo Seizures, PNES, Conversion Disorder… So what is it? It is actually a subject that has more stigma attached to it than Epilepsy itself. When you research the subject you find that in the simplest terms it is a diagnosis given when someone has what appears to be an epileptic seizure, but there is no evidence of an epileptic seizure happening on the EEG. Many people with Epilepsy, also develop these attacks and it is actually more common in those who also have a learning disability or intellectual disability. Brett was actually diagnosed with this in addition to his epilepsy, when he had a seizure that did not show evidence of a seizure on the EEG. It’s of course debatable if in fact ALL seizures are picked up on the EEG, whether a seizure can happen so deep in the brain that the scalp EEG cannot detect it is factual but also very rare.
To complicate matters, at least where Brett is concerned…
Brett has had seizures detected, recorded on EEG that he babbled, turned to a voice in, Moved his head side to side, cried… but every one of those are rare in an epileptic seizure and common in non epileptic attacks. His Complex Partials as a rule are almost always over 2 minutes, and this is rare as well.
It is estimated that non Epileptic Attacks account for 2-3 per 100,000 people in the United States. Often it is discovered in the Epilepsy Monitoring Unit after multiple medications fail to control the seizures. They are not caused by Epileptic electrical discharges in the brain, and are thought to be caused primarily by a mental health problem, not physical.
Trauma, Negative Life Events, Stress, and ironically even having to deal with a chronic case of refractory Epilepsy can even trigger non epileptic seizures. The treatment is to seek counseling with a trained psychologist who can help identify triggers for the attacks and help the person develop coping strategies to stop them from happening.

Here are some additional websites and resources to help anyone who has been given this diagnosis:
NEAD
http://www.nonepilepticattackdisorder.org.uk/non-epileptic-attack-disorder/
EPILEPSY Foundation
https://www.epilepsy.com/article/2014/3/truth-about-psychogenic-nonepileptic-seizures
Non-Epileptic Attacks
http://www.nonepilepticattacks.info/index.html