The Unknown Is the Worst!

As my friends and even some family members try to understand my world of disabilities, I have often been asked as a parent, what is the hardest challenge of being a parent to a child with a disability.  I can reply without hesitation:  “The Unknown”… is the worst!

I just had an email come my way this week by another mom whose daughter, 9 years of age, has just been diagnosed with the retinitis pigmentosa eye disease.  I share this one sentence from her email to me:  "One of the things no one seems to be able to tell me is how progressive my daughter’s RP is compared to other children her age.  Sadly, it is the unknown…it is the worst!"

As my son was being “diagnosed” after the age of 3, first with the bi-lateral sensorineural hearing loss -- reason: unknown;  then the nystagmus -- reason: unknown; retinitis pigmentosa (RP) -- reason: unknown, and the list would continue.   I began to have my own questions and concern: were my dreams for my child being shattered?  Would he be able to talk, read, write, be on grade level?  Would he have friends?  My own list continued.  All unknown...

I personally had the need to have a plan in place to get past all of these unknowns that were beginning to darken my world.  I had to focus on his potential and not the unknowns.  I was not going to allow him to be defined by medical diagnoses. I made a promise to myself and to him: we would focus on his strengths, his abilities, his interests, and his dreams.  We were going to make them happen.

In order to push past these unknowns, I needed with every transition to think what my child needs right now to be successful.  What needs to happen for his success today as a 3 year old, a 6 year old, a 14 year old, and now as an adult?  It would be important to offer him the tools he would need to be in control of his own life and destiny. We would need to introduce him to the use of various assistive technology devices, how to sustain both educational and natural supports, and teach him to advocate for accommodations when needed for him to access his environment, which would lead to a wonderful ordinary life.  This would allow for his disability to be irrelevant and help to dissolve the fears of the unknown.

As we all venture through the journey and paths in our own transitions of life, the truth of the matter, disability or not, is that there are many unknowns. Many of those early unknowns that brought great fear and doubt have come full circle, and have proven to be the best outcomes that I could ever imagine.   Slowly I am learning how to embrace these unknowns and find the positives and hidden blessings.  It is the positive of the unknowns that are the best!

challenges collage

Total Life Learning by Wendy Bridgeo,‎ Beth Caruso,‎ & Mary Zatta

Cover of Total Life Learning

The Total Life Learning curriculum was developed for students ages 3 to 22 who are blind, visually impaired including those students who have additional disabilities or are deafblind. The focus is on the development of life and career goals that enable student to maximize independence, self-determination, employability, and participation in the community.