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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
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,…
Moving On and Accepting Change
My son, Skyler who has severe, nonverbal autism, dyspraxia and Crohn’s disease is mere months away from turning 21 and it has me constantly worried about what’s next – for him and for me. Throughout my 20 years of parenting Skyler, the only thing that has significantly changed has been my title. The majority of…
Waving the White Flag
At the risk of receiving a boatload of backlash for being negative, I’m going to be completely honest. While I make every effort to share the good and difficult parts about being a lifelong caregiver to my adult son with severe, nonverbal autism, sometimes the tough times stick around longer than I’d like and make…
The Voice Of A Sibling
Much of my life and the majority of my social media posts revolve around managing the unpredictability of severe, nonverbal autism and its impact on Skyler’s life. As his full-time parent caregiver and the parent of a neurotypical child as well, I feel it’s important to also share how this extremely challenging diagnosis affects the…
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…
Where Do You See Yourself
Where do you see yourself in the next 5 years? It’s a question I’ve been asked more than a dozen times throughout my life in various situations – post college graduation and job interviews are among the most common scenarios. Back then, I would answer confidently, sharing the goals and visions I had set for…
Purposeful Motherhood
While I don’t envision that God is in heaven playing a random game of Duck, Duck, Goose as His way of selecting how children and their future parents will be matched, I do believe God perfectly places people, specifically children, into our lives quite purposefully. Maybe I was specifically chosen for my parents as a…
The Special Guest
I welcome every opportunity I’m given to share our family’s autism journey and speak about all of ways in which Skyler amazes me. However, this past weekend, speaking at the autism conference felt significantly more important than any other talks I’ve given. My emotionally charged words and examples of Skyler’s courage and resilience were directed…
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
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…
Muffins with Mom
What an honor it was to spend the morning with Skyler. I truly can’t believe that 13 years have past between my first and what was likely my last “muffins with mom.” So many emotions are going through my mind as I look at the photos of then and now… Age 7 – Skyler was…
The Damage of Timelines
Although it has been 16 years, I have never forgotten a single detail of my son’s autism diagnosis. The sterile exam room overwhelmed my senses. Waves of peroxide and latex stung my nose. Unwelcoming, stark white walls irritated my eyes. The click of the neurologist’s pen as he scribbled down notes, void of any emotion,…
If I’m Being Honest… The System is Failing Our Autistic Adults
The month of April is just a few short days away and while it’s notoriously known for bringing awareness to autism, I am a huge proponent of using this monthly platform to educate about the sad realities for autistic adults and the overwhelming need for autism ACCEPTANCE and inclusion. All parents have hopes and dreams…
Sibling Shadows
With much of my life and the majority of my social media posts revolving around autism, the impact that diagnosis has on each member of our family – particularly my daughter, often goes unaddressed. Parenting neurotypical children while simultaneously managing the ups and downs and countless unknowns of a special needs child is extremely hard….
Enough is Enough
From the minute you become a parent, the overwhelming fear and concern sets in. You constantly question whether every choice or decision you make on your child’s behalf is the right one. When your child has special-needs, the endless self-doubt triples. The options for schooling seldom are plentiful or a perfect fit, so when an…
Piecing Together the Puzzle
Have you ever purchased a very challenging jigsaw puzzle just for the sheer joy and feeling of accomplishment you’ll get once you’ve successfully assembled it? The larger the quantity of pieces the better right? As I stare at those 5,000 pieces dumped onto my counter top and begin sorting and flipping them over, it becomes…
What is “normal” anyway?
As an obsessive rule follower and box checker, I took great pride in following that life cycle and enjoying the anticipated rites of passage into adulthood – specifically motherhood. However, we are never truly prepared for the curve balls thrown directly at our heads the force us to figure out how to cope with an…
How Autism Impacts Sibling Relationships
In a world in which siblings are typically our first playmates and our best friends, siblings of special-needs children are destined for a different childhood from what most kids experience. During their toddler years, I remember watching my neurotypical daughter, Kendall, attempt to initiate playtime with her older brother, Skyler, who has severe autism. It…
Because…Autism
I must finally admit to myself and the world that I’m tired. Physically and mentally exhausted. For the last 15 years of my 17-year-old son’s life, autism has dictated the mood, comfort, décor (or lack thereof) and decibel level of our home. Severe, non-verbal autism has robbed my son of the ability to communicate effectively…
To My Special Son as You Approach Adulthood
I cannot believe how quickly the last seventeen years has flown by. When I glance over at you, intently focused on the television screen with unshaven stubble presently on your face, I can vividly picture my adorable, chubby cheeked toddler. I remember every minute of each therapy session you tolerated multiple days a week like…
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