In moving our mission forward as well as expanding our scope within Autism Spectrum Disorders and Intellectual Disabilities. We are always focused on our organizational Vision. Everyday we are researching, discovering new stats, equipment, technical advancements, medical theory, treatments, and of course reviewing the numbers on funding and grants. Not just for our organization but the changes made by government funding, NIH grants, CDC, AHRQ and others.

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One of our members in the United Kingdom requested that we join in ona global campaign for SUDEP and Prevent21. It is impossible to know everything about ASD/ID and related disorders. They are far too vast and ever changing.

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In 2010 due to devastating events with one of our members, we made significant changes in our mission and in the design of our communities throughout the homes, buildings, retail commercial spaces, restaurants and sports fields. These modifications cannot cure SUDEP, but hopefully we can change the 21 in Prevent21.

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What is SUDEP? Sudden Unexplained Death by Epilepsy. 

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The same as with Autism - Epilepsy is too vast of a diagnoses and everchanging. Every single person diagnosed with Epilepsy forever changes each future diagnosis.

 

The first thing you are told when you are finally given the diagnosis of epilepsy is to write down everything. Take note of your surroundings, what you are doing, watching on television, eating, your computer activity, how you sleep, and when you sleep to ensure all of your triggers are identified! You have to sleep the correct amount. Watch your weight or just one pound can offset your anti-seizure medications. It can be overwhelming to keep track of it all and remaining within the boundaries to prevent a seizure, but this knowledge is crucial to those living with Epilepsy.

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Now imagine a non-verbal, not high functioning child with Autism being handed this diagnosis. They cannot tell you how they are feeling, they cannot tell you that they did not sleep all night because their mind would not stop, they cannot tell you about the triggers or what they were thinking of prior to the seizures. They cannot tell you about the pain from the medication throughout their body or the pain of the seizures either.

 

After four or five seizures and the emergency ambulances or helicopter life flights and repetitive testing, the effects of this new and unexpected twist in the life of this child begin to show in the parents, caregivers, siblings, and circle of family and friends.

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Next comes the effort to monitor this individual 24/7, which given the inability to have full details from the individual with seizures, is nearly impossible. Then the period of fevered research, string of medications, changing of diet and physical activity, and finally the fear and anxiety of missing anything that might cause another seizure. Facing the high risk dangers that Epilepsy brings such as SUDEP is an absolute challenge to ALL involved everyday.

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Therefore, we are expanding our mission to include Epilepsy and SUDEP by bringing awareness of these issues in ALL communities, but especially the ASD community.

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We all have to join in and just say NO more by getting to the KNOW of SUDEP and to Prevent21.

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Sadly, it does take more than One to make the change that is drastically needed for ALL, but ALL of us can join together to be that CHANGE.