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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,…
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…
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