The last nineteen months have been quite challenging in numerous ways.
As children with our little hearts and dreams we think that adulthood is just where you’ve got it all together. Then you get to adulthood and find out you never really “have it all together” and the concept of having it all together is a myth. I genuinely used to think that once you got to adulthood you never made mistakes anymore so you no longer had to apologize to anyone for anything ever, because we all would just do the right thing. Lol! Naiveté at it’s finest.
Life is always a journey with winding and twisted roads that sometimes circle back onto themselves and sometimes go off into dark forests with no lights at all, yet the only way forward is through. Hopefully you have someone you love and who loves you in return by your side to travel that road with you, or who at least cheers you on when you have no choice but to travel alone.
When I entered the dyslexia community I felt so alone that I wanted to help guide others. Over six years later and that’s still the thing that guides my heart. What’s funny is I look back on my earlier writings and think quite often about how much I’ve learned and grown since then. I have always said this is a journey of evolution, and that’s still wholly and completely true. As my child has aged and matured, as well as moved from one school to another because of moving onto higher grade levels, the battle front before me has altered in subtle ways, but the biggest change has and probably always will be my son.
Once we mutually accepted that we both live with anxiety, a level of honesty opened up before us that never existed before. It was raw, real, and created a bridge of faith and trust that he, in his anxiety, had always been unwilling to extend to anyone. I, for my part, also opened up more and shared harsh truths with him. Sometimes I feel like I overshare with him, but he always asks the questions that lead to those moments where I ask myself, “Is he ready for this?” The truth is yes, he is.
Since day one of being within this community, I’ve always known my initial purpose, my true calling, was to protect my child. I literally drop all other things to focus on his needs and advocate for his educational rights. I do so unapologetically because that’s my role as his mother, but what about this other work that I do for the community?
No one asked me to be here, that’s for sure.
No one ever gave me permission to be here.
Lots of people have told me to, “Shut the F*** UP and GO THE F*** AWAY!!!!!!!!!!!!!!!!!!!”
Lots of people have told me I’m, “stupid and worthless!!!”
Lots of people have told me I, “only give a F*** about myself and no one else!!!!!!!!!!!!”
“You’re only in this to be famous!!!!!!!!!!!!!!!!!!”
“You don’t care about our children!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!”
“You wouldn’t be who you are without me and will be nothing yet again without me!!!!!!!!!!!!!!!!!!!”
“No one likes you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!”
“Everyone thinks you’ve changed!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!”
And my favorite, which I’ve shared before, came from a fellow parent advocate who told me, “YOUR SON WILL KILL HIMSELF IN FRONT OF YOU BECAUSE YOU ARE INCAPABLE OF HELPING HIM! YOU ARE TOO STUPID!!!!! HIS DEATH WILL BE YOURS TO LIVE WITH FOREVER AND THERE’S NOTHING YOU CAN DO TO STOP IT!!!!!!!!!!!!!!!”
Much of the above has been said to me over the last 19 months too, but the “kill himself” comment was made in 2018.
This is on top of the normal day to day parent advocacy role that I, as the mother of a dyslexic child, have to, but also willingly, take on.
So much of those things that have been said to me are born out of a place of trauma, I know that. Do comments like that sting when they are made? You betcha. Does it sting more when the people who made those statements claimed to be your friend? Yes. Does it take time to reconcile words against actions and reality? Yes.
The truth is no one who is ever a true friend would ever make statements like those above. Do friendships fall apart? All the time, but true friendships wouldn’t do the above and if something hurtful was said or done, they would attempt to reconcile together and heal.
But, that’s not what this piece is about because I’ve let those people go. They’re part of my past, not my present and certainly not my future. So, then what is the point here?
I’ve said before that we are not a kind community. We just aren’t. That is visible in every dyslexia group out there if you read the comments. Why is that though? The answer is trauma. Now, I don’t mean the physical kind of trauma, but the other which is emotional because it is a “a deeply distressing or disturbing experience.”
I’ve shared with my parents how I have come to accept the fact that I’ve lived with anxiety my whole life, but the truth is that being a parent advocate kicked my anxiety into a significantly higher stratosphere. That doesn’t make me weak, that means that the analytical processes and emotional reactions I have to all things advocacy related directly to my child are heightened. That’s my reality, and the truth is everyone has their own way of coping. For example:
- We all know those people who stick their heads in the sand and would rather deny that something is wrong then deal with it.
- We all know those people who complain to high heaven about how the school is failing their child, yet in their determination to make their schools do the right thing they don’t do anything privately to help their child, when they have the means to do so. Note that the ability to help privately is definitely something of privilege as few can afford it.
- We all know those people who insist the way they remediated their child is the only way to do so, and any and all other ways are wrong and we are harming our child by not listening to them.
I could go on, but honestly it feels incredibly heartless to do so.
The fact is that each of us, while walking a similar road, are not going to all walk the same path, in the same footsteps and achieve the exact same ends. Dyslexia is variable and individual per child; add in additional SLD’s and co-morbidities and you have a pretty singular and unique mix that defines your child’s learning profile; now add in their strengths and weaknesses, their IQ, and lo and behold you have…AN INDIVIDUAL, not a carbon copy of someone else. That makes everyone’s journey theirs and theirs alone. Each of us does not have the right to sit in judgment of someone else’s journey, just like we don’t have the right to sit in judgment of someone else’s life.
Yet we do.
As one of the recipients of this judgment, and it’s hurled at me both aggressively and passively (even through silent actions) even more because I’m a public advocate, thanks to my anxiety, I spend a lot of time thinking about it. Because I’m thinking on something negative and toxic, the gremlins in my brain whisper one question over and over again…why am I here? What is my purpose? As others have tried desperately to take ownership of my work while telling me I’m worthless, and as yet others have stood on my shoulders for their own need for community recognition, what is my purpose? Are the judgments hurled at me and the gremlins in my head who feed on that judgement right? Should I just “shut the F*** UP” and sit down and go away?
Then it hit me. In the silence of the night, with perfect clarity, I understood at last. My purpose is to educate and empower others. What they do with that education and empowerment is their own. Honestly I hope they go forward and move mountains and I’m incredibly proud when they do. That’s the reason I’m here.
I’m on the pathways throughout Wonderland holding a lamp and trying to be a guide. My purpose is to help shine the light into the darkness, which is sometimes wildly uncomfortable and painful for those traumatized by educational malfeasance, but if the light isn’t shone than the trauma thrives. Trauma needs shame to thrive. Don’t believe me? Read or watch anything Brené Brown has put out.
Right, wrong or indifferent, agree with me or no, that’s my purpose, and for those who keep trying to knock me down, I’m going to keep standing up and doing my job. For all of us who have a voice, helping others should be the only reason why we use our voice. That has to be our purpose.
As profoundly challenging and emotional as the last nineteen months have been, for every mistake made, every lesson learned, every “friend” lost, I am grateful for this season of my life. Sometimes we have to fall to figure out our purpose, and I finally figured out mine. That’s what’s funny, six years later, coming out of a dark place, cruelty finally showed me why I’m here. Sometimes the lessons, the light, come from the least expected places.