“The Advocate, The Meanie, The Mom…” -Regina

My oldest child, Chelsi, my first born, my 18th birthday present, and my graduation gift all bundled into my arms forever changed my life. Ok, Ok! A baby having a baby…there….I said what society said.  For those unaware, Chelsi is the mother of Caiden. We have a dual CTD diagnosis that was discovered in the process of diagnosing Caiden. As Grammy and Grampa-pa, we co-parent Caiden.

When Chelsi was young she learned fast and early: patterns, puzzles, picture books, full sentences by 18 months that quickly turned into paragraphs. In everyone’s eyes, she was excelling and hitting milestones way early.  In my eyes: she was her momma all over again- A GENIUS!  Though her daddy still claims she gets it from him (puhhhhleasssee!).  Except for her talking skills. Yeah, he DEFINITELY gives me credit for that.

Around 3rd grade, I began noticing many areas of concern: missed social cues, struggles with adapting in social groups with peers, school work began to cease in progress, many areas of regressions.  I requested for her to be evaluated for learning difficulties and her counselors obliged.  We were told Chelsi was very smart.  However, was an “overachiever who lacks confidence”.  You see, she would be 100% accurate in her work and finish in a very timely period.  Yet when she had time remaining she would doublethink, doubt, erase…and mark erroneous responses.

Fast forward to high school: Chelsi would show her math equations with errors, yet still SOMEHOW get her answer right- scoring only 50% on her work.  She lacked social skills and found great difficulty in making and maintaining friendships.  She played a team sport.  She was high functioning, yet I saw and knew there were so SO many struggles she was facing.  Throughout her life- her journey, I found myself advocating.  For nothing more than the awareness that Chelsi needed a little extra help.  A bit more understanding, more tolerance of her ways.  And, to be quite frank I often found myself pep talking MYSELF more than anyone else.

Though I was her #1 advocate, I was always her #1 critic.  Always analyzing.  Always looking for and “fixing” the struggles. I not only coped with what I was observing as a mother- I was trying to cope with the lack of others’ care/concern/awareness.  Not many in my circle acknowledged what I described.  Though they never treated Chelsi unkindly, they still didn’t quite appreciate or agree with the way I described my daughter’s struggles.  I didn’t have much of a support system as I brought forth my observations or concerns.  They were easily dismissed, explained away or very obviously disagreed with.  In most of my dealings with trying to explain my child, I felt like a hypochondriac just looking for a flaw.  Of course, that was the absolute furthest from my truth.  The truth that “A mom always knows”.  I birthed this perfect child.  I watched her every inch of growth.  I knew when she needed to be watered, pruned and let NOBODY stand in my way as I watched her blossom.  Like me or not….. agree with me or not…. I was her mother and I didn’t care what others failed to see.  I knew.  I was her protector, her Advocate.  I always will be.

Even now, in adulthood.

She’s now 24 and what I have found is that I am in a new season of advocacy.  Now, having a diagnosis we have been able to make sense of the previous undiagnosed 23 years.  It has connected all the dots for us and has drastically helped with coping and forming a plan.  In my new season of advocacy, I am the Meanie.  I am the Meanie who continues to form a plan to build the strongest possible foundation for my girl.  I am the one who now recognizes the opportunity to explore and include a variety of healthcare paths.  I am the Meanie who demands self-involvement in order to develop self-care skills.  To gain a higher level of independence.  Oh, bloody hell, who am I kidding… I need a break from all the work!  Let’s be honest, SHALL WE!!?!!

Resources that didn’t exist when Chelsi was a child – now exists for the next generation.  While going through all of Caiden’s therapies, I am reaching out to his providers to reach out to their respective fields and help us find resources for Chelsi as well.  I’m tired of being her “critic” in life- the one identifying all of the needs to be more productive/higher functioning.  It’s past time for a life skills specialist and now that we know they exist, I demand it.  It’s time for an outlet for my sweet girl to be able to express how she feels without her tired/burned out/running on empty momma bear growling back at her in frustrations.  So, insert a psychologist who she can open up to.  It’s time for me to be less and let her see my love more!

Chelsi shows obvious displeasure with us for directing her and demanding that she reach out to develop her own team of providers.  It has caused many ruffled feathers in our household.  Many times, she speaks displeasure because she feels she doesn’t need outside intervention, or ANY interventions.  Many times, it is because she doesn’t like to talk and yet, providers will require very open and honest dialogue.  But, like I stated, I am her advocate.  I always will be.  And in this season of growth that includes me being the Meanie as I advocate for self-growth, self-responsibility, and self-awareness.

Sometimes, being an advocate will not be easy.  Sometimes we have to be brutally honest, “unfair”, and even irrational if people aren’t listening.  As parents, we are the strongest advocates for our CCDS kiddos and that job does not come lightly.  Whether you are new to this journey or a seasoned advocate- never forget that sometimes being a Meanie is okay in our ever-growing effort to bring brighter, stronger tomorrows for our children.  What I’m learning recently, and sharing with readers, is this:

Embrace each season of growth as our children, regardless of age, continue to need nurturing in order to blossom.  There will always be challenges in acquiring the needed resources and sometimes those challenges will be the independent desires of our kiddos.

Above all…. I am MOM.  It is my job to always build the strongest foundation; To continue to fill Chelsi’s toolbox with tools that will help her build upon her foundation.  This job of allowing her to build upon her foundation, as she gains more and more independence, will become more manageable with the right professionals guiding her.  As Mom, it is my duties and desires to never give up and to continually seek resources to guide her to reach her full potential.  As Mom, I am her advocate for life, even if that means advocating despite her joy in the process.

Why? Because you’re never too old to hear:

Because I’m MOM….and I said so, that’s why!

 

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