Blog
Shatter the Nevers
When I became a mother to my son, Skyler, I had many dreams and plans. Even at the age of 3 when he was diagnosed with autism and the landscape & process for when and how he would achieve those dreams changed, I held on tight. With each visit to the various medical providers throughout…
Unexplained Bruises
It never gets easier. The wondering, the worrying and ultimately the sadness of never knowing the cause or scenario behind new injuries. My 21-year-old, nonverbal autistic son came home from his autism center with this shiner and he’s unable to tell us how it happened. And it’s not just the bumps & bruises randomly appearing…
Energy of Surrender
It’s taken me 49 years to recognize a very important concept… the energy of surrender accomplishes much more than the energy of control. And I have my nonspeaking, autistic 21-year-old son, Skyler to thank for teaching me that valuable lesson. You see, as much as I hope, pray & dream that Skyler will become even…
Physical Communication
For approximately 19 years, I have been slapped and hit daily. The culprit…my 21-year-old son Skyler, who is on the severe end of the autism spectrum, is non-speaking, has global motor difficulties and suffers from Crohn’s disease. He uses physical contact as his primary method of communication. We’ve tried every tactic shared with us…
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…
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…
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…
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,…
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….
A Beautiful Mind
Understanding the inner workings of the body and mind is extremely difficult, but as the parent caregiver of a non-speaking young adult diagnosed with autism and Ulcerative Colitis, I feel like the last 19 years have been an endless game of charades. Although there are plentiful books on the subject, the early phase of motherhood…
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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Remaining resilient as a special-needs parent during these uncertain times
We all to one extent or another face difficult times. We have had to learn how to navigate through challenging situations and go on with our lives… some people seemingly have the ability to manage this better than others. Lessons Being A Mom to An Autistic Child Has Taught Me As a caregiver and parent…
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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