Blog
Celebrating Caregivers
While November is most notable for recognizing all that we are thankful for and gathering for a huge meal with family & friends, it is also a time to honor and celebrate caregivers! Did you know that November is National Family Caregivers month? I sure didn’t! Sadly, just like most of our tireless efforts supporting…
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,…
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…
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,…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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,…
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,…
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…
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…
