A year ago, I was on Facebook scanning through pictures of my friends' children going to prom. Gorgeous gowns and fashionable suits littered my news feed. Big smiles and words of pride fluttered all around.
As I scanned the pics, I felt a mixture of happiness, awe and finally...a tremendous amount of pain. I felt an immeasurable amount of pain for my own daughter, who is severely autistic, wasn't among them. My daughter would never have the chance to have a "normal" (God, I hate that word) prom as I experienced back in the day.
She'd never have a crush on a boy and wait for him to ask her to go or take the initiative (as so many free thinking, feminist women who refuse to be compromised or defined by societal rules do) to ask him herself.
I felt bitterness. Deeply rooted bitterness I wouldn't have the opportunity to go with her and purchase a gown, have her hair and nails done, rent a limo...all the trimmings that come with a mother preening over her beautiful daughter's acceleration into adulthood. Before I knew it, I commented on how she'd miss out on this once in a lifetime experience.
A well meaning friend chirped "Oh, she can still go to the prom! She can go to a special needs prom!" Although a great idea, I realized that wouldn't work either. I'd have to attend the prom with her. What would be missed was the independence of being at a prom on her own. That was imperative. Independence.
She wasn't born with autism. She changed. I gave birth to a perfectly healthy baby girl who grew into a functioning toddler until one day...she vanished.
I woke up that morning, took her to daycare and went to work. I picked her up from daycare, placed her in her little car seat and drove her to my doctor's appointment. When I turned around...she was gone. She was having a seizure...and I PANICKED.
I don't know the exact moment when God decided to take my daughter away. Was it when she was born? A year prior while we watched her enjoy her little "smash cake?" That morning while I got her ready for the day? At day care? When was the hour? The minute? I'll never know. I never got to say goodbye...
Nearly 16 years have passed and I still mourn that period in my life. I never had the chance to say goodbye. Would it have even made a difference? I'll never know.
People look at me as this...pillar of strength. They say "Oh, you're so strong." I'm not, really. I simply play the cards I was dealt. And you know what? I never even asked to play the game. In all, what choice do I have?
When she was born, I dreamed of her applying to Spellman or Brown or Columbia University. Wherever she wanted to go and whatever she wanted to study...
I would've happily broken my back to ensure she earned a college degree. WITHOUT bribing anyone, hence "Aunt Becky, Lori Loughlin--only 2 months in jail..." *side eye*
We have very few college graduates in the family. I am one of them. Yet for her to graduate from college...it was a dream that would never be.
But you know...people with "normal" children don't understand that. In their well meaning, misplaced ignorance, they honestly believe that an unwanted alternative will suffice to what SHOULD have been. Well..it won't, Kittens. Not at all.
You see, I've never been one to go along to get along. I say things that often aren't politically correct. And..sometimes my words get me into trouble. At times, my very presence has gotten me into trouble as well for...hell...I don't know. The insecurity of others? How can anyone bother you if they never acknowledge your presence?
Ask God. I don't have the answers for that.
Moving on...I couldn't be me if I weren't true to myself. How am I able to stand if I'm always bent over apologizing for what I think and how I feel? No...that's just not me. So, if you're reading this and its making you feel "icky" perhaps this isn't the blog for you.
I have been a strong supporter and advocate of children with special needs for as long as I've been in this fight. Yet if people think I'm going to apologize for never wanting autism to enter our lives, I have news for them they won't like. Not even a bit.
I never asked for her frequent meltdowns, social isolation, being misunderstood and shunned by others.
I never wanted her to be comforted by having The Little Mermaid on repeat due to that being her only source of friendship. l wanted her to have friends. Real friends. To belong. It wasn't to be and I have not come to terms with that. I never will. No, I have no need of therapy. Or opinions. Neither have any interest to me...
We live in a generation of hurt feelings and expecting rapid apologies not necessarily due to being wronged. I believe this generation looks for apologies based on entitlement. Yet, it conveniently forgets the hurt it places on others and never part their lips to give the same apologetic speeches they selfishly demand from others.
I'm not about that. I don't look for ways to minimize the impact my words may have on others if I'm speaking on a subject I feel strongly about. No one OWES anyone anything. Period.
The only One I owe anything to is God. I owe him repentance for the anger I've felt towards him over the years for taking my daughter away from me. There's no number I may call to hear her voice. No place I may drive to see her again.
Oh...she's alive. I don't want to confuse anyone.
I'm speaking on the version of my daughter who said "Mama" and "Daddy." Who was FUN and DANCED and liked to look at her reflection in the mirror. In less than 24 hours, she went from being pleased with her little image to staring at the wall for hours on end.
What took place with that change is a story for another day. I had no plans to write anything today...or on any day for that matter...yet this is what came to mind.
It is MY daughter who changed at nearly 16 years ago. Therefore, who and what exactly do I owe for being upset about it? Why should I prep her for a theme I never signed on for? So no. No special needs prom. No thank you.
Enter 21BlueLash. So my beautiful daughter will never have a normal job. They say never say never. However, some things you just have to accept. No one will give her a job. That is the reality of the present situation.
So I decided to create a CAREER. She's beautiful. She loves beautiful things. She loves beautiful people. So why not create a path she may take to fulfill a destiny that was lost to her?
It is HARD work. Yet we, (she and I) will make 21 BlueLash a success. We will cry. We will sweat. We will laugh and bring joy to others. And in the end...she will be VICTORIOUS. There is no other alternative than that.
All I know is how to fight for her. I don't know any other life. She'll turn 18 this month and the fight still continues.
My friend Marcia called me a honeybadger one day. She said it reminded her of me when she thought of how hard I fought for my daughter. I looked it up on Google and stared at it a bit. It was small...nondescript.
I didn't see anything remarkable about it until I looked at it more closely. The way it stood with its child. It looked as if it would take your head off if you came near it. "That," said Marcia, "is exactly what it will do. The honeybadger will come though you about its child." I laughed and said "Touche!"
I was also nicknamed the Hulk a few years back. I've "Hulk Smashed" a teacher's aide (legally of course) when she twisted her arm behind her back instead of using deescalation techniques.
A school official was "hulk smashed" as well when a teacher decided to take my daughter's food away from her (that I packed daily mind you) as punishment for an isolated incident of taking a single potato chip away from a classmate.
This occurred once, she took one potato chip. Yet every time this teacher felt she breathed wrong, she decided she was going to enjoy her little power trip.
Since she is nonverbal, she was unable to tell me she was being starved at school. The teacher was fully aware of this. That's why she thought she could get away with it. This wasn't about a potato chip. She did it to be cruel and to exact a sick sense of power over a tiny, helpless child who she believed had no voice.
To her dismay, she found out she did have a voice. A very organized and methodical voice. Me. Her mother. After nearly a year and the Director of the Board of Education telling me to never call their office again, I called on a State Senator to advocate for my daughter.
I was exhausted. Mentally and emotionally drained. Yet, I kept calling until I reached him.
I'll never forget his words. He said "Mrs. Hannah, I don't know what I can do. But I'll go to that school for your daughter." One morning I opened the paper and it was front page news. Welp. This individual had resigned. **HULK SMASH** That, my friends, is also a story for another day...
My point is ONLY parents of autistic children understand this life we face. It is a very unique and systematic struggle we never ask for, yet are given. Parents of children with autism are fully aware this is a lifetime battle.
We share a common fear of the future of our children after we die. This fear transcends culture, creed, sexual orientation, and socioeconomic class.
There is no check we may write to buy off this fear. It is permanent. It may only be combated with FAITH. Ask yourself, "what will happen to my child when I die?" Do you honestly know the answer? Neither do I.
That is what solidifies us as parents and human beings. The unconditional love we have for our children.
So for the ones who understand precisely what I'm saying...stay tuned. The ones who have understood nothing I've said, I don't need to show you the door. You know where it is.
I'm a very private person...always have been. I honestly struggled with sharing her story. Consequently, I wasn't going to add a blog to our website.
I didn't want judgment. Opinions. Issues. I already juggle plenty of those on a daily basis. Yet...perhaps my writing may help someone else. After all, that IS what life is all about, isn't it?
We face trials and tribulations not for the betterment of ourselves. If there is one consistent lesson of life I have learned, it is this... We experience hardship and tragedies, joys, gains and losses to help enrich the lives of others.
So take a walk with us...as a Lady thinks the blues...