Blog
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…
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…
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…
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…
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…
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….
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…
When Severe Autism Parents Sacrifice Careers
There is no backup plan when you have a child with profound needs, and no one is coming to give you a break — even a break to be a competent employee. I’ve questioned whether I should quit working and focus solely on my 19-year-old son Skyler’s needs; however, the minute I pose the question,…
Can We Really Have It All?
It’s tough to admit, but mom guilt is an unfair reality of parenting. I’m certain that I inflict much of it upon myself along with self-doubt and countless “I’m sorry” replies for situations I shouldn’t be apologizing for. Spending the better part of my adulthood trying to be everything for everyone is a tough cross to…
To My Incredible Husband… I Thank God For You
A life partner or soulmate is a person who accepts you for exactly who you are without the desire to change or fix you. There is a deep and unspoken respect between both partners. Your strengths compliment theirs and you hold each other tightly during challenging times. The healthiest relationships are rooted in open and…
I Grant Myself Permission
I used to think it was selfish to want time away from everything and everyone. How could I possibly justify dropping my responsibilities as a wife, mother of a special-needs child and employee for 30 minutes or an hour to refresh and recharge. The internal battles and justifications of why I couldn’t and shouldn’t break…
Creating a Life in Balance
I’m often confronted with the conundrum of whether it’s okay to carve out a little bit of “me” time each day instead of focusing on only meeting the needs and wishes of others, particularly my special needs son. Living a life of complete selflessness can take a significant toll on your mental health and well-being…
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…
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…
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…
How Do You Do It?
I’m often asked by friends and acquaintances, “How do you do it all?” This statement usually comes after someone has observed me when I’m out and about with my two kids in tow, likely trying to redirect Skyler from reaching out to pull someone’s beautiful, long hair or smacking the arm of a passerby. What…
Teetering on The Emotional Edge
Saturday was a difficult day. Actually, if I’m being truly honest, most weekends have been challenging for as long as I can remember. Instead of enjoying our earned ‘down time’ as most adults do – running errands, spending quality time with friends or relaxing, our 48-hour break from the work week is not a break…
Comparison Is the Thief of Joy
I recently discovered something about myself that is very profound and tough to admit – I am not perfect. It honestly feels freeing to write those words. I’ve wasted so much energy throughout my life trying to achieve perfection in literally everything I do and in my own mind “measure up” to other people living…
My Courageous Son – You Are An Inspiration
Until I became the mother to an incredible son with autism, I had always associated courage with someone who exudes great bravery, like running into a burning building or pulling an injured motorist from their mangled car to safety. Being courageous is actually having the moral strength and quality of spirit to face difficulty and…
Cherish Every Moment
Whether currently, or at one time or another in our lives, I think most of us have experienced the feeling of not having control in a situation, or not knowing what to do, or what is the best decision to make. Perhaps you’ve felt helpless, emotionally overwhelmed or as if you just couldn’t stand one…
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…
Autoimmune and Gastrointestinal Disorders Are Part of Our Autism Journey
From as far back as I can recall, Skyler has experienced digestion issues, painful eczema, skin tearing and severe constipation, which was repeatedly dismissed by ‘experts’ as “just a part of autism” and we were given band-aid treatment options. Throughout the last 6-8 months, we’ve added horrible acne, significant weight loss and increased aggression to…
What I Wouldn’t Give to Peek Inside Your Mind
I’ve been smacked across the face, shoved, had my hair pulled, laundered urine-soaked sheets and scrubbed floors covered in the breakfast that was back handed to the floor the minute it was placed on the table … and it is only 6:30 am. This is the direct result of autism, anxiety and a complete lack of…
Autism Is Not Always to Blame
From as far back as I can remember, Skyler has always expressed himself by using his hands. The most common of his ‘gestures’ is open hand smacking of walls, cupboards, doors, counters, people, etc. Basically, if he could reach it, he would hit it. Hair pulling was his second favorite method of contact. Oddly enough,…
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…
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…
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…
Socializing and Isolation – The Struggle is Real
While I intend no disrespect for the meaning behind the Memorial Day holiday, the thought of any long, holiday weekend or break from our routine always gives me a bit of anxiety. Unlike most of the world, who likely use the bonus day off work to relax and unwind with friends and family, many autism…
