Proving Your Worth
|

Proving Your Worth

Today was a tough day. In fact, one I’ve somehow been able to avoid for 17 years. My nonverbal, severely autistic adult son had to undergo an IQ test / Psychological Assessment in order to ‘prove’ his continued need for services provided by the Medicaid waiver. Because we all know kids outgrow autism and don’t…

Beauty in the Journey
|

Beauty in the Journey

I have a confession to make… I lack the ability to sit still and am a hoarder of all things pertaining to my kids. Whether it’s the adorable creations crafted by their own little hands or papers pertaining to each of their individual experiences with education (IEPs, report cards, therapy notes, A+ essays, science projects,…

Aging Out
|

Aging Out

The days are growing shorter as that dreaded time draws near, His age dictates there’s no longer a need, so services and programming abruptly disappear. At the moment of diagnosis, I was told all the things my son would never do, “But look at him now,” I scream aloud, “Your predictions were so untrue.” He…

Party of Three

Party of Three

This is us. A forever, inseparable party of three. Weekends spent in perpetual motion, trying to keep our 20-year-old, autistic, nonverbal son entertained. Always on repeat, his mind and body requiring the same regimented plan for the day. Awakened at dawn due to urine-soaked bedding followed by a quick shower and demand for his favorite…

The Hug of My Life

The Hug of My Life

Twenty years… That’s how long I’ve waited for a simple hug from my son. You see, my 20-year-old son Skyler is on the severe end of the autism spectrum, is non-speaking, has global motor difficulties and suffers from Crohn’s disease. Frequently people ask me how I know that Skyler loves me or appreciates the great…

Just Keep Trying
|

Just Keep Trying

Routines are an essential part of life for many on the spectrum and my son Skyler definitely demands consistency. I’ve spent this entire weekend parenting solo and essentially filling as Joshua Hellmann (aka Skyler’s favorite person) doing all the special things they normally do together while Josh is out of town running the Cleveland Marathon….

What is your plan?

What is your plan?

My son Skyler is on the severe end of the autism spectrum, is non-verbal and suffers from Crohn’s disease. He is one week away from turning 20-years-old and I’m not prepared. I recently sat down with Skyler’s case manager, who I absolutely adore, for our annual meeting to discuss the waiver service options and hours…

Dismissed and Underestimated

Dismissed and Underestimated

My 19-year-old son has Ulcerative Colitis, non-verbal autism, complex needs and global motor difficulties. He has been dismissed, underestimated and deemed incapable his entire life by those who are trained to support, teach and encourage his growth and development. I attended a meeting at his autism center yesterday with the understanding we would be discussing…

Aging out of the system

Aging out of the system

My 19-year-old son has Ulcerative Colitis, non-verbal autism, complex needs and global motor difficulties. That description is getting harder to repeat … not because of the various diagnoses but based on the heavily uncertain future for adults on the spectrum, the sheer mention of his age sends me into panic. With the holidays now a…