Blog
Feeling Pain
In my opinion, one of the most challenging aspects of Skyler’s nonverbal autism over the past 21 years is his inability to fully articulate his feelings. Whether he’s suffering from physical or mental anguish, we are never exactly sure what the true root of the issue may be and thus how to properly help him…
Desperate for Respite
Last week I attended the annual fundraising gala for the incredible nonprofit organization that employs me as my 21-year-old, nonverbal autistic son Skyler’s SLP (supported living provider). Throughout his lifetime, we have never successfully secured respite services thus, we’ve never experienced a break from caregiving. Aside from occasionally relying on the kindness of friends or…
Normal is Boring
While there is no stable, universally understood concept of “normal,” most of us are raised to believe that to be fully embraced into societal norms our lives must follow a similar cycle to this – graduate from high school then college, secure a high paying job in a chosen career, get married, start a family,…
Adoption
Any man can be a father, but it takes someone truly special to be a dad. A dad extends his hands, time and heart to love the child through anything. The bond between my husband, Josh and my autistic adult son, Skyler is like nothing I’ve ever seen. Many people jokingly call Josh “the Skyler…
Family
In life, you are presented with two types of family – the one you’re born into and the one you build. My entire childhood was plagued with abuse and trauma, so as an adult, all I desperately wanted was to break that cycle and create a ‘normal’ and loving family of my own. One that…
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…
Emotional Future
Yesterday was one of the hardest and most emotional days I’ve had in many months. For those who have read my book and follow me socially, you know that I don’t sugarcoat any parts of our life, but I try my hardest to always identify the silver lining and remain hopeful in most situations. But…
Hold My Hand
It’s a fair question and one I’ve asked myself hundreds of times. What is he trying to tell me? Even though I’m not always confident I’ve interpreted his outward displays correctly, I do my best to understand and help. As frustrating as it can be for both of us, I appreciate that Skyler…
Endless Game of Charades: Trying Nonverbal Strategies
The minute we become parents, we instinctually set high expectations and timelines for our children’s development and future. When they take their first steps, we are eager for them to run. When they learn to put on their own clothes, we are ready for them to tackle tying shoes. When they use the toilet for…
What Is Wrong?
I pride myself on writing honestly about my life – the good, bad and the nasty. As much as I aim to find the silver lining in all situations, sometimes with autism, it’s buried under many, many levels of HARD and refuses to reveal itself! For the past three months, each day of parenting my…
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…
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