Blog

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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…
Read More Presuming Competence
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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…
Read More What is your plan?
Letting Go

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…
Read More Letting Go
Im Fine

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…
Read More I’m Fine
Dismissed and Underestimated

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…
Read More Dismissed and Underestimated
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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…
Read More Aging out of the system
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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…
Read More Inclusion
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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…
Read More A Beautiful Mind
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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…
Read More I’m Tired
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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…
Read More Emotional Future
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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…
Read More Hold My Hand
IMG_4754

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…
Read More What is your plan?
Dismissed and Underestimated

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…
Read More Dismissed and Underestimated
0U9A2711bw

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…
Read More Aging out of the system
sad mom

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…
Read More Emotional Future
187FDB2F-C328-409F-AA2E-17D90C384B8D

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…
Read More Hold My Hand
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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…
Read More What Is Wrong?
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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,…
Read More The Damage of Timelines
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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….
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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…
Read More Enough is Enough
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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…
Read More Piecing Together the Puzzle
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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…
Read More A Beautiful Mind
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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…
Read More I’m Tired
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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…
Read More Celebrating Motherhood
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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…
Read More Rites of Passage
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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…
Read More Can We Really Have It All?
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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…
Read More I Grant Myself Permission
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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…
Read More Presuming Competence
Letting Go

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…
Read More Letting Go
Im Fine

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…
Read More I’m Fine
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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…
Read More How Do You Do It?
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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…
Read More Cherish Every Moment
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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…
Read More Pausing and Living for Today
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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…
Read More Autoimmune and Gastrointestinal Disorders Are Part of Our Autism Journey
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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,…
Read More Autism Is Not Always to Blame
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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…
Read More Inclusion