Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 14, diagnosed with Prader-Willi Syndrome and Weston 17, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.




Wednesday, April 13, 2011

An IEP for Mom

Yesterday, my sister, Christine and I had a meeting with the assisted living facility where my mother currently receives care. As I was seated at a conference room table and surrounded by administrators, directors and nurses, I was suddenly struck by how familiar this scenario was to me. I realized it was like an IEP meeting for my mother!


Once again, I found myself plunked inconspicuously into the role of advocate, coordinating the care for my elderly mother who suffers from dementia.

During the IEP-like meeting, we review my mother's medications, doctor appointments and therapy services. We track her progress and make suggestions to improve the quality of her care. I smile to myself as I realize that I have been well-trained for this new position.

I ask questions, offer suggestions and interact with the staff. My sister, who does not have a child with special needs, and is new to this rather intimidating process, looks at me and wonders to herself....who is this woman?

I guess you could say "this woman" has been well groomed for this important new job.

As a mother of two children diagnosed with special needs, I have participated in hundreds of IEP meetings. I have met with thousands of doctors, nurses, specialists and physician assistants. I am on a first name basis with administrators in schools, hospitals and now assisted living facilities. I may not have signed up for this important position but I have most certainly been well trained for it.

Even my past life in the medical device industry prepared me effectively for this new life-saving role I have assumed for my family. It was here, that I learned how to negotiate with medial professionals. I learned how to sell idea's, how to explain, educate and most importantly...I learned how to seek to understand other's motivations and perspectives.

In my previous employment positions, I was completely unaware and oblivious to the fact that someday all of this "experience" would prepare me NOT for a position as a CEO of a company...but instead prepare me for a position as CEO of a family. A family with several generations who struggle with many medical adversities.

I guess it is not surprising to me that this challenging life has made me reaffirm my spiritual connection since I cannot help but feel like there was a lot of thought that went into preparing "this woman" for a future role of caregiver to the medically fragile individuals in her life.

I fear the first half of my life, I may have been asleep..... sleep-walking my way through life, assuming I was preparing myself for a role devoted entirely to myself.

Now, I must use the many experiences I have learned in my life, not to better myself, but to care for those in my life whom I love.


I am awake.

And although I do not make any money and there are no promotions or prestige in this new career of mine. It is perhaps the first time in my life, I feel I am doing exactly what I was born to do!