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Where Is My Instruction Manual?

Where Is My Instruction Manual?

The nurse that gently lays the baby on your chest fails to also include a handbook…..a handbook filled with all the definitive answers to the questions that new parents face.

Instead, you embrace your beautiful bundle of joy and soon head out into the world with him; to figure it all out on your own.

It is terrifying.

Being a mother to a daughter with multiple disabilities and a son on the Autism Spectrum, that instruction manual sure would have been handy.

When my son wouldn’t chew and needed feeding therapy until age three, some clear- cut answers would have been most helpful.

The moment when we realized that tags in shirts, “hurt”, and when we experienced our very first meltdown, some straightforward directions would have been greatly appreciated.

I can remember years ago trying to maneuver through this uncharted territory for us and desperately asking, “WHERE IS MY INSTRUCTION MANUAL?”

The first time I heard the terms, “504 Plan”, “Profoundly Mentally Disabled”, and, “Seizure Disorder”, a book filled with specific instructions on how to react, how to move forward and how to breathe was seriously needed.

Upon learning of diagnoses and absorbing the initial blow of Autism and Chromosome 1 Deletion, (within five months of each other) I could have really relied on a foolproof method to tell me how to cope.

I needed something tangible to teach me exactly what to do, step-by-step, to ensure I didn’t screw everything up.

As the years have gone by, I have thankfully crossed paths with many amazing, brilliant and caring therapists.  Occupational, Physical, Speech, and Social therapies are a part of everyday life.

I have gained invaluable knowledge from them that has helped propel me forward; helped me to grow and learn to be the mother that my children need.

I have been lucky to forge friendships that are built on a common foundation – our children.  Meeting others that walk in my shoes, who are also trying to figure this whole thing out, has been a saving grace.

We share advice, joys and sorrows.  I have gained a better handle on this life, with their help.

More than anything else, the one thing that has replaced that coveted instruction manual is love.

The unconditional, unstoppable, unmeasurable love that I have for my children is my constant drive.

Situations arise constantly that I am unprepared for.

A new type of seizure, a new anxiety trigger and the need for major surgery have all snuck up on us within the last year.

Hurdles will always pop up in our way.

We just have to keep jumping those hurdles.

As long as there is breath in me, my priority will be learning how to make life better for two incredible little people.

Beyond all else, they are my children….showering them with love requires no instructions.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Jodi Shenal

Meet Our Blogger

I'm a stay-at-home mom with two amazing children. My son is on the Autism spectrum and my daughter has a rare genetic disorder and multiple disabilities. I am passionate about advocating for my children, writing about our experiences, and raising awareness for other families in our shoes. Our family lives for the little things and we've learned to appreciate all the beauty that surrounds us

View Jodi’s Profile

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