Archives for posts with tag: #daretounderstand

For those who do not know our story and family.  I have three pretty wonderful children.  Elizabeth is our daughter with special needs, specifically she has sensory processing disorder (SPD) and global dyspraxia. Emily and Michael are her amazing and loving big sister and younger brother respectively.

We have had many conversations with Emily and Michael about Elizabeth, her disorders, her needs and our goals for her.

-Michael and Emily have seen how certain tasks or skills will make Elizabeth anxious.

-They have watched how her anxiety can make a situation go from fun to overwhelming.

-They have watched how hard she works for any and all successes in her life.

AND

– They have watched how John and I are working for, rooting for and affected by the journey we are on because the above things are theirs as well.

So the conversation Emily and I had this week really got me thinking.

Emily came home from one of her days on her pediatrics rotation.  (For those who do not know, she is in medical school and her this year she spend anywhere between 6-12 weeks on any given area to experience the area and help her decide what kind of physician she would like to be).  She just finished her OB/GYN rotation and is now spending her days with the young ones of the world and she loves it.

So back to the question, she asked me if way back when Elizabeth was small, would you have liked a therapist, or physician or even a medical student to share that they understood how you feel because they have experienced special needs firsthand? 

The reason she asked involved a child she saw that day and the mom’s emotions and advocacy.

I told her that I think I would have loved that but only if it was not said in pity.  I told her that having someone verbalize that they understood would have really helped me at some seriously tough times for Elizabeth.  Emily then told me she knows she cannot truly understand someone’s individual journey but rather understand from a shared perspective.

I loved that she thought of this and I realized so many times, those very people we trust to treat our children do not have the first hand knowledge of life with a special needs child.  Our hope, and I say “our” here is to help the medical world understand not only our child and their individual needs but also the feelings and emotions that life with a special needs child brings.

I thought of doing something a bit differently on this blog now, and it asks for some reader participation.

Could I now ask you your thoughts on the very question my daughter asked me?

Could you tell me your answer either here or on our social media platforms?

Also, could you tell me the one thing you want the world to know about you special needs child? I want to hear them and let the world know!

I will go first:  ELIZABETH HAS ONE OF THE KINDEST, MOST GENTLE HEARTS OF ANYONE I KNOW!

I hope you will take the time to share about you wonderful child! I will look forward to reading them as we let the world know about these special people.

I wish everyone a peaceful week.

Michele Gianetti author of “I Believe In You: A Mother and Daughter’s Special Journey” and “Emily’s Sister

 

 

 

 

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Epilepsy Awareness Month - Special Needs Essentials

As a voice in the special needs community, we understand that living with epilepsy is difficult. People with epilepsy deal with multiple challenges, stress, and physical and emotional pain. Thankfully, awareness and education are great ways to shed light on this condition and work towards progressive solutions. That’s why celebrating November Epilepsy Awareness Month (NEAM) is so important.

Also known as a seizure disorder, epilepsy is a neurological condition that affects the nervous system. It is usually diagnosed after a person has had at least two seizures that were not caused by some known medical condition.

Seizures seen in epilepsy are caused by disturbances in the electrical activity of the brain. The seizures in epilepsy may be related to a brain injury or genetics, but often the cause is unknown. Epilepsy is more common than you may think. Check out these surprising numbers to get the details.

  • 65 Million: Number of people around the world who have epilepsy
  • Over 2 Million: Number of people in the United States who have epilepsy
  • 1 IN 26 people in the United States will develop epilepsy at some point in their lifetime
  • Between 4 and 10 out of 1,000: Number of people on earth who live with active seizures at any one time
  • 150,000: Number of new cases of epilepsy in the United States each year
  • ONE-THIRD: Number of people with epilepsy who live with uncontrollable seizures because no available treatment works for them
  • 6 OUT OF 10: Number of people with epilepsy where the cause is unknown

DareTo Defy the Odds - Rick Harrison

The National Epilepsy Foundation is a leading resource for people with epilepsy to learn their treatment and therapy options as they strive to become seizure-free. Last year, the National Epilepsy Foundation launched a new year-long education and awareness campaign called #DareTo. The campaign focuses on breaking down the barriers that can prevent people with epilepsy from reaching their fullest potential. They challenged the general public to post their dares over social media to spread awareness and spark inspiration.

“My epilepsy taught me to be a fighter,” said Rick Harrison, a spokesperson for the National Epilepsy Foundation and star of the hit TV program Pawn Stars. “ When I said I wanted to make a TV series out of my pawn shop, people thought I was nuts. But I dared to defy the odds, and Pawn Stars was born. If you have epilepsy, dare to live to your fullest potential. The Epilepsy Foundation will help you dare.”

The Epilepsy Foundation is an unwavering ally in raising awareness, providing support, and funding research to bring new treatments and therapies to market in a time frame that matters for people with seizures. People living with epilepsy, their families and their caregivers are served by their network of more than 40 Epilepsy Foundation affiliates around the country.

Local Foundation affiliates provide information and referral assistance; maintain individual and family support services; serve as advocates for the rights of those with epilepsy; and offer community-based education to employers, emergency first-responders, school nurses, and other allied health professionals. Find your local Epilepsy Foundation here.

How to you #dare to make a difference? Drop by our Facebook page and share your stories.

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