Blog
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…
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…
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?
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
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
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…
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…
I’m Tired
I’m in a funk – a particularly dark head space that is centered around jealousy. I would normally suffer in silence and be ashamed to openly admit my truth, but I think it’s important to be honest and share because I suspect I’m not alone. We’ve come so far in many ways with Skyler’s communication…
Celebrating Motherhood
The Mother’s Day holiday is one of my favorite days of the year. I genuinely enjoy celebrating being the mother of two incredible kids more than my birthday, Christmas and Valentine’s Day combined. Like many little girls who played house with their dolls as children, I often depicted the ‘perfect’ mother as I imagined her…
Autism Siblings – The Unsung Heroes
In a world in which siblings are typically our first playmates and our best friends, my daughter Kendall was destined for a different childhood from what most kids experience. Having a brother with severe, non-verbal autism has forced her to grow up, in many ways, alone. Kendall and Skyler unconsciously switched roles many years ago,…
A Letter To My Son… As He Turns Eighteen
Beginning on Skyler’s first birthday, I started a tradition of writing a letter to him highlighting his likes, dislikes, achievements, funny moments, family adventures, playmates, and favorite television shows. In addition, I take a photo of him wearing a necktie as a way of charting his growth. My vision when creating and continuing this annual…
Rites of Passage
I’m going to be completely honest and vulnerable here. I’ve been struggling with my emotions the last few weeks and haven’t really felt much like writing, talking or doing much of anything. I don’t usually let my feelings thoroughly overtake me, but this is a really momentous year for our family – one that seemed…
The Impact of Childhood Experiences on Parenting
A person’s upbringing can explain a lot about their views, values and perspectives regarding every situation or difficulty they encounter. We each gather various life lessons and personality traits along the way which impacts every decision we make and how we choose to parent our children. When I reflect back on my own childhood experiences,…
The Special Love and Purposeful Parenting of an Autism Mom
In the Fall of 2002, I found out I was pregnant with my first child. I was elated and spent the entire pregnancy planning and preparing for the next 18 years of my new son’s life – unaware that none of those plans would come to fruition. After three long years of medical issues, unmet…
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Pausing and Living for Today
This unprecedented time of sheltering at home amid fear of contracting the novel coronavirus (COVID-19) — or, God forbid, infecting someone we love — has brought out the best and the worst in us all. Stress levels are at an all-time high and learning to work, study, communicate and perform routine daily tasks virtually has…
Life Lessons Being a Mom to An Autistic Child Has Taught Me
The old adage “stop and smell the roses” has never been a more fitting description of my life than it has been here recently. In fact, it’s become my motto … my continuous reminder during this unique time in our lives where, like many of you, I find myself wrapped up in overwhelming feelings of…
Embracing Your Path with an Open Mind
As with many things in life, if you knew how challenging your journey would be to take you to your final destination, you may never opt to take the first step. This has truth in your career — would you ever jump into your dream profession if you knew the struggles you would go through…
Your Story Matters, Welcome to My Life
We each have a story. In fact, each of our stories is as unique as our own fingerprints … our own DNA … our own life’s tapestry. Some of us openly share our stories, realizing that in sharing we are connecting. Others of us hide behind the story that we tell others and the story…
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