It's Not About the Label

Hello, I have been stuck in a rut as of lately. Still putting forth the effort to push through the training for what seems like months.

In reality it has been weeks and this is my very first blog post here. Where am I in my training? I just added on the About Me page.

Now my computer skills, I admit, are developmentally delayed at the moment. Please forgive me if anyone feels offended, it is not my intention.

Allow Me To Explain

Growing up my family often said "you are all special", and well the meaning of the term now reserved for a deeper connection. As a mother of a Special Needs Child with multiple disabilities I empathize with the struggled of overcoming learning challenges.

My daughter is going on 14 years old and as early as age 1 I understood she was not developing like her siblings. For about another 6 months I remained in a denial mode I suppose. However, the denial was more self-critizing or doubting the inner gut feeling that there was something different in how far behind she was.

The Evaluations

For me, by the age of 2 I pushed for the early intervention evaluations. Eventually that lead to the Developemental Specialist referral. The resulting impact of a PDD-NOS diagnosis created conflict between my mother and me. Where as I accepted the fact the diagnosis, my mother remained in denial and accused me of having my own child labeled for no good reason. Somehow the initial diagnosis made sense of my daughter's behavior quirks and her global delays.

I ignored my mother's critizing remarks after some time passed. After all I had to employ better use of my time getting involved in the Autism Awareness supports. I researched allt about the subject matter and even attended seminars that were being offered to educate professionals and family members about the most updates research.

Making Sense of All the Information

To tell you the truth I got so wrapped up into the research on some level hoping that my mother would learn to accept the diagnosis. The main reason I was so determined to sort through all the Information overload is that like so many parents I was searching for a cure to pop up or a real founded explanation for the why Autism Spectrum Disorders are on the rise.

The truth is after receiving the confirmation, I was going through the five stages of grief. Honestly, receiving her diagnosis is not the only extenuating hardship I have had to confront and cope with.

Years before, my first born was 9 months old when I received a referral to the cardiologist that confirmed my baby had a congenital heart defect (PDA). At 18 months old she had heart surgery. About two years later I received that dreadful phone call that her father died in a car accident.

So grief is clearly no stranger to me. After all the research and educational materials sunk in I was back to acknowledging a gut feeling that there was something more. At this point my daughter was nearly graduating a preschool for children with special needs. My mother still resenting the labeling for over 3 years.

Pushing Further

Now here is where our circumstances take a turn once again. After multiple conversations with my daughter's team supports and addressing the mutual concerns with the Developemental Specialist I finally received a referral to the geneticists. After about a year of tests and followup consultation the gut feeling received more clarity and well frankly the life-altering stages of grief peaked again. On some level it was comforting to know that my motherly instinct finally had more sensible anwsers.

In 2009 I received confirmation that my daughter was born with Bardet-Biedl Syndrome. In 2016 we received confirmation that she has developed the Early On Set of Retina Pigmentosa and she is legally blind. She is now in middle school.

For the first five years my daughter was enrolled as a globallly delayed non-verbal student on the spectrm of Autism. It was a battle to have her integrated into the mainstream classroom to repeat a second year of kindergarten.

You see a couple of years prior I was informed by a specialist that I would be lucky if my daughter was potty trained by 10, that it is highly likely she will never speak well enough to be consider verbal...forget about her learning to read and write.

Set Aside All The Labels For A Moment

So why am I explaining all this? Where is my daughter developmentally at today? She is in 7th grade and attended classes with her peers. She enjoys being a member of the choir, and drama club. She loves to read and write. The school district has multiple theraists still working with her and more recently the past two years a Mobility Trainer as well.

My daughter has achieved well beyond the expectations. Not because we push her to do so, but because she remains self-motivated to try and develope the skills her peer master before her.

My daughter also has a uriologist, a neurosurgeon, and an amazing primary physician that have come to appreciate her resilience. My fears as a parent receiving a very bleak diagnosis that is rare and as unclear as the Spectrum variables somewhat fade to the reality of where my daughter continues to set the bar higher.

With no peripheral vision and night blindness truth is she may be less developmentally computer delayed than me at the moment. I can not know what the future is no one can. However, I do know this I will keep pushing through the training here.

So while I am buying into on-line products or systems which may appear to be a waste of time or money to others, I reflect upon where my daughter is today. Allow the peers to set the bar high and keep your visinary goals set on leaping regardless. I believe firmly, that we all habe the potential to succed at what is most important to us. The keys to opening the doors of success is passion and grit.

By, Melissa Bentz