To my aunt, and to my family and all of you who have wrongly dissed me as broken, a monster, and a mistake….
I follow the blog of a neurotypical—non-autistic—mother, Jess, who has a beautiful 19 year old autistic young daughter named Brooke. The blog’s name is Diary Of A Mom, and you can find their blog on Facebook. Below you will find a link to a post she wrote just this morning which really resonated with me….and yes, I am weeping, crying, heartbroken, because of how this could have been me when I was growing up in the Fields family…..
This mother and father—his name is Luau—as well as Brook’s older sister Kate—-all love—adore—their autistic daughter / sister….and have done all in their power to make Brooke feel unconditionally loved, welcome, to have a healthy self esteem, and to thrive as her authentic joyous bubbly autistic self. Never have they ever felt Brooke was an embarrassment or “too much” to handle.
Brooke was, and is, fully accepted in her family and her community.
To those in my family who I know reads my blog here on WordPress….if you do nothing else today, please read my words and the words posted by Jess from Facebook page Diary Of A Mom….
Firstly, this is what I wrote when I posted DOfAM’s blog post on my wall this morning:
“This, 2000%, to everyone who has dissed me, squelched me, bullied me and taunted me for being what I have come to know is the *VERY* cool different I am.
Yeah…I’m talking to those of you in my family who made my growing up years a living hell—-just for being me. What a life of hell, want, need, missed opportunities, financial security and loneliness I have lived hating myself so much I find myself always praying that God will take me in my sleep because you have all thought I was an embarrassment, wrong and broken…..and a literal mistake.
This includes three of my siblings, my aunt, my cousins, my sister in laws, nieces and nephews who also both look down on me and hate me for being who I am.
I am still battling all the internal ableism and self-hatred from my childhood in the Fields family.
I am literally shunned by my family. Even today.
To the school bullies I also had.
This, to all of you who have made me feel so little, so small, and like I took up way too much space just for existing as my authentic autistic self.
But to those of you who have made me feel seen, heard, valued and human, my mother, sisters P and R, Connie, Natalie, Cheryl Ackerman, Shari R., Dr. Clarke, Dr. Poonia, Angel, Lauren, my Facebook friends….thank you. I treasure each and every one of you. More than I can express.”
Here is the link, below, to today’s Facebook post written by Jess, Diary Of A Mom….please, I implore you, read it with an open mind and heart….
In closing, I now have end stage kidney disease, and have been on in center hemo dialysis since July of 2018.. In June 2018, I was rushed to the hospital, weak, very dehydrated, with full-blown Type 2 diabetes and sepsis on my lymphedema leg lump.
I would have died had I not gone to the hospital. I spent three weeks in the hospital from June 16, 2018 to July 4, 2018, recovering from the sepsis and waiting for a chair at my local Davita kidney center.
Today, some of my kidney function has actually returned, so I don’t have the diet and fluid restrictions that many with CKD (chronic kidney disease) have. I never did have the diet and fluid restrictions—and I still pee like normal. I still take my vitamins daily, and now mostly eat home cooked meals, so I am feeling nearly healthy again.
I reached out to one of my sisters to try to make peace with her shortly after I got diagnosed with end stage CKD, and my mom has told all of my other family members about my CKD.
Other than a long letter from my sister—-who still has me blocked on Facebook as of today—-telling me that my being bi-sexual, queer, and nonbinary is a “choice” when I know it is not, plus the daily contact I have with my mom and the sister who lives with her, plus occasional letters I get from my other sister who lives in Arizona, I have not heard from any of my other family.
Any of them.
My eldest brother died in late May of 2018, and even though he never called or wrote to me either, he did pray for me daily and had daily Catholic Masses said for me when he was alive. But his wife, who I once was very close with—- never calls me or sends me any Christmas and birthday cards now. None of my siblings ever call or wrote to me or send me cards of any kind. Ever.
My family has always thought of me as literally a burden, an embarrassment, wrong, bad, defective and a monster.
Three of my siblings legit want to throw me into a nursing home because of how different I am. They assume that I cannot live on my own, when I am able to, because I have the help of two wonderful caregivers, Connie and her daughter Natalie, who happen to take very good care of me.
At dialysis, the way I sing to the tone of the room acoustics and call those noises my “chestnuts” and how I make other unique noises too, plus how I love the “aqua shine” prisms in the nurses and techs shiny hair, and get so excited about their shiny hair….everyone there loves me and my unique noises and my love for shiny hair.
Everyone at my dialysis clinic with the exception of two techs and one patient, loves me. They see that I have a deep kind heart and compassion and empathy for others, and a fierce, deep love for social justice. And that I don’t hesitate to call out anyone’s bullshit.
Growing up though? I was always shushed and told I was bothering and embarrassing my family….most of my family never seemed to appreciate the full-on bubbling over with joy autistic me at all. I was never allowed to play in my sisters’ hair….and would even get yelled at and hit if I kept up the “abnormal admiration” of their shiny beautiful hair.
I was punished for admiring my own shiny hair. My father even threatened to give me the same buzz-cut he always gave two of my brothers if he caught me looking at my hair and playing with it.
I ran away several times when I was a sophomore in high school—-to try to get away from my tyrannical father and family, and find a family who would take me under their wing and give me the unconditional love I saw on TV shows like Brady Bunch. That I saw other kids at school had….
Years ago, I used to write to an aunt to try to get her to help me out because I have never been able to work and have instead lived my entire adult life on meager government benefits. I truly felt she would have a real heart for me. My letters were all ignored and thrown away or sent to my mother unopened, except for she did send me money twice: ($300) for car repairs, and then $10,000 at Christmas 2007.
I used the $10K to pay down credit cards and buy a personal home computer, which I badly needed.
I needed for my aunt to actually care though, really care—-about me.
I wish my siblings, aunt, cousins, in-laws, nieces and nephews who hate me for being who I am would read this and finally see how deeply and utterly cut off I feel because of how you have all literally shut me out….
Of my own family…
I’m not a monster or a “problem”.
I’m a human being—who happened to be born autistic.
I have a nephew who is also autistic, and a grand nephew who is also autistic.
I’m going to say this too, and I don’t care if it upsets you, but I highly feel that my father was also autistic…and that some of my siblings are also autistic. (My father passed away on February 11, 2000.)
To those in my family who still shun me….you’ve really missed out. On getting to know and enjoy a unique human being.
That’s the sad thing.
I am still here. Alive and breathing. Fully cognizant.
Y’all know where I live and have my phone number.
It isn’t too late to give me a real chance to finally feel like I matter to all of you.