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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…
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….
Enjoy Today
I’ve envisioned this moment many times over the years. What it would feel like to experience the high school graduation of my youngest child, Kendall, having not had the opportunity to enjoy this same moment with her older brother, Skyler two years earlier. Would I be overly emotional at the ceremony? Proud and elated for…
Presuming Competence
It takes a lot to fire me up and anger me to the point I lose sleep over a nasty remark or unsolicited comment about my parenting. But, when I received the below message regarding Spelling to Communicate (S2C), I threw my phone and screamed a few choice words in the air: “As a parent…
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…
Letting Go
Letting go is hard! Particularly when being in complete control is my love language! You see, as much as I hope, pray & dream for my nonverbal, autistic 19-year-old son to be even minimally independent, caring for and managing his every need is all both of us have ever known. I know he is capable…
I’m Fine
I’m fine. Such a conditioned response I’ve used for the entirety of my life no matter the situation. Served cold food that tastes dreadful – my response to the waiter when asked about my meal is always the same, “it’s fine, thank you.” Someone terribly hurts my feelings or I’m physically injured due to no…
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…
Inclusion
One of the most overwhelming concerns a special needs family faces is the fear of isolation from our communities. We must always weigh the decision whether venturing out will be worth the anxiety or misunderstandings and judgement from onlookers should our child be triggered and their behaviors become troublesome. While I’m a big believer in…
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…
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…
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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