UNCOVERING THE VOICE with "The Unmuffled Unbreakable Mommas"

The Constant 

by Christy

Uncovering The Voice Inc. is a Wisconsin-based non-profit organization that empowers caregivers of children with mental health & neurodiverse conditions. Through support groups and their lived experiences, they help families navigate the challenges of emotional, behavioral, developmental, and intellectual differences. Uncovering The Voice Inc. offers resources and guidance, including IEP support and support in trauma-informed care, to help families feel stronger and less alone.

We are all in a constant battle to save our child, with constant attention, constant worry, and a constant willingness to search and educate ourselves. All the while fighting the constant judgment, a constant pressure, that all comes down to how hard you can fight. The life is so demanding, that no ONE can understand it unless they live it. The CONSTANT, all in silence. It doesn't matter the details of your story or your child's struggle.

We GET IT! We see you. 

 

 Hitting rock bottom 

   My son, who is now 12, has bipolar disorder(primarily), Generalized Anxiety Disorder, PTSD, and ASD (Autism Spectrum Disorder). Nonetheless, he is a very bright child when it comes to his interests. Then there are the possibly incorrect diagnoses of ADHD, where it all began, and PICA, which makes no sense.  He appears to have sensory issues, in my opinion.  He ate and chewed almost everything. 

I have decided to begin by sharing a snapshot of where my mind and heart were on December 31, 2019.  Life then, felt like we hit rock bottom.  We were already in crisis, and the roller coaster continued to descend.  This was a year that I thought almost broke me until further COVID-19 isolation took us deeper into the muffled world than I ever could have imagined. I will tell you more about that as my journey with blogging continues. However, the survivor in me continued to kick in, and we finally found light at the end of the tunnel.  There is hope.  It may not last as he grows. The fight will never end, but I do know now that there is room for growth and stability in his life, and ours as we keep pushing forward in learning and educating ourselves and others. 

   Staying afloat 

   Another year has gone by. Goodbye and good riddance, 2019! I feel like I'm trying to hold my world together in pieces. The weight is becoming too heavy.  There is no handbook for children with disabilities, as they're all different.  No child is alike.  There is no knowing what the outcome will be but only hope.  Every ounce of any strength left in me is clinging to the hope of finding the right path.  Striving so hard to save my child, that I have lost myself somewhere in between all the eggshells I have walked on just to stay afloat. Safeguarding all the meltdowns, suicidal, and homicidal ideation...I have been treading water.  All the while we are living in fear and silence of what today or tomorrow will bring. My home had become a safety struggle.

  The unknowns  

  This is a world of untraveled territory, searching for answers. In the beginning, I had no idea there were resources. Doctors hadn't provided anything and I had no idea where to begin. Who does? Well, I finally discovered resources in my county. Advertising had been at its worst because no one else appeared to be aware of their existence during my times of greatest need. When you do find the resources they're so limited and nothing compared to the intensity of what you may need. Especially in a rural area like the one where we live.  There is not enough money, insurance coverage, facilities, or knowledge to go around before you start feeling like you are drowning.  This life becomes almost unbearable as you watch your child's innocence shattered.  Their conditions, along with everything that comes with them, begin to take over.  For my son, this included handcuffs and a ride in a cop car on his 11th birthday during a mental health crisis, as if he were a criminal.   

 The cocktail of torture 

  I have followed every suggestion and program offered to me, and I have taken every step necessary before the next possible path could even begin to open, only to face another round of hit-and-miss.  All while dealing with what feels like riding a roller coaster repeatedly.  I never knew which child was waking up to me, my sweet baby or the Hulk, as he described himself.  The constant highs and lows of mood swings, meltdowns, high anxiety, sensory overloads, defiance, rage, aggression, physical and mental abuse, and a lack of understanding of emotion place a tremendous amount of mental strain on a family.  Let us not forget the toll this is having on my child's mental health, with the confusing turmoil going on inside his own body.  The constant alertness and energy required as the daily struggles unfold exhaust you to the point where you have nothing left at the end of the day.   The hard choices must be made.  All the answers you do not have.  After all these years of trial and error, on endless pages of medications and medical records, I feel stuck, as we continue to take baby steps forward, followed by massive leaps backward.  As my son's conditions manifest and worsen, they ravage his self-esteem and innocence.   

  Self-blaming and judgment 

  There appears to be grief, which began with denial of how I expected my child to be. Not that I would change him in the least, but I was not ready.  I am learning a completely different lifestyle that does not come naturally to any new typical parent.  I am constantly questioning every decision I have made, beating, blaming, and shaming myself for failing as a parent.  There is a daily conflict of suggestions and criticism from the uneducated world of family, friends, doctors, school, and anyone else with whom we have had the pleasure of sharing our already very full and limited time, as if the problem were so simple and easy to solve.  The limitless change as the downward spiral begins at such a young and innocent age as a result of life-altering conditions.  There is never-ending trial and error with medication cocktails, backtracking, and med washing, all while attempting to achieve some balance and stability.  I watch my child become increasingly unrecognizable, and at times so uncomfortable that he can not bear to be in his own skin.  Without medication, my son's mood swings are unmanageable. He has already been removed from school, and his home life is becoming increasingly unsafe as he grows.  My biggest concern is his future.  It is entirely up to me.  If I do not find the right treatment, where will he be? I am aware of the statistics regarding juvenile detention and, later, prison. Life continues to move forward, but I still feel like I am standing in the same place.  The pain and judgment of others, as well as the stigma, have kept us, as families with special needs, hidden for far too long.  

    Uncovering the voice 

  The goal is to offer compassion, support, and resources to caregivers of children with mental health and neurodiverse conditions. While on this lonely journey, I hope to start conversations about very difficult topics, such as hopelessness and damage to a family's mental health.  I am hoping to give families like mine a voice.  It is time to end the painful isolation and be heard.  Children and their families should not be ashamed to speak up about their daily fears and realities.  Children are suffering!  Families are suffering. Our children, like all others, deserve to be normalized in this world.  The mental health system is severely broken for these children and families, and the only way to effect change is to speak up before they become completely lost in it.  My blog will continue to discuss what that might look like.  I hope to share with you the most vulnerable moments of our journey.  For you to see through our family's eyes as we try to support a child through his daily struggles. He simply wants to be loved, understood, and accepted, as well as to feel good in his body and fit in with the rest of the world. That is exactly what he deserves.  He has a beautiful heart.  My child's struggles do not define him.  He has so much to offer the world if given the opportunity.  Change is impossible to achieve unless we educate and normalize.   That change begins with a voice.  I hope you can join me in finding your VOICE.