‘Yes, you are neurodivergent, but you’re an adult so you can deal.’ I am anticipated to pour from an empty cup.’: Neurodivergent mom expresses the impact of labels, lack of support

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“This is my perspective and experience of being a neurodivergent parent of neurodivergent children. As a huge part of neurodivergence is based on genetics, I am aware that I am not alone. My story is an all too common one, yet a rarely heard one. This narrative has to change.

moms selfie with sons
Courtesy of Kirsty Pellow

Within my family home, we cover ASC, ADHD, ADD, SPD, Dyspraxia, Dyslexia, Dyscalculia, and Epilepsy. My children have always been at the forefront of their own journey of self-discovery. Love, compassion, self-awareness, and self-acceptance are the lifeblood of my parenting style. Realizing my children’s neurodivergence eventually gave birth to the realization of my own. Suddenly, like dominoes lined up before me, I realized why I had a deeply acute understanding and empathy for how they experienced life and moved through the world because our perspectives were so similarly rooted.

My children are lucky enough to grow up within a family where they are not the ‘different one.’ They are not anticipated to change who they are in order to ‘fit’ or listen to conversations about their neurodivergence whispered in hushed tones; their identity is not hidden from them or dusted with shame. They get to live out all of their colors in a home that offers them the deep acceptance they need to explore what their neurodivergence means to them, and just to plainly be themselves. I cannot control how the world makes them feel, but I can have a say on how they feel in their home, where they are loved, respected, and valued.

mom with sons being goofy
Courtesy of Kirsty Pellow

Neurodivergence is and will continue to be an evolution of the species; a natural result of the variations that occur in the human genome, giving our population the opportunity to make advances. This is how it should be. But in my personal and professional life as a neurodivergent, I believe firmly in the light and shade; exploring both sides of the coin.

As I write this, I am in a flood of emotion. I close my eyes to gain specificity of what that emotion is; it’s sadness with a deep hue of oppression and marginalization. Let me walk you back a little.

I am a 34-year-old woman, who received her formal diagnosis of combined type ADHD and ASD just weeks ago. A woman who has flown under the radar all her life, feeling invisible. For the majority of my life, wrestling with what I presumed to be cyclical depression and anxiety, interspersed with disordered eating, pre-menstrual dysphoric disorder, self-harm, and suicidal ideation. Surrounded by professional systems who concurred with my worst fears at that time; I was mentally unstable and completely broken, and there was nothing to be done but accept it.

moms selfie in a hat
Courtesy of Kirsty Pellow

I had only ever known what it was like to be me! I never knew that my way of being was not the way of other people. I had experienced plenty of trauma, like many of us. That could explain my mood swings, inconsolable crying fits, and disassociation…right?

Being diagnosed as an adult, the overwhelming message has been ‘Yes, you are neurodivergent, but you’re an adult now, you can deal.’  The systems that are built to assess and support neurodivergence all too often stop at the age of 18. As if suddenly our neurodivergence is outgrown and the challenges and support we need have ground to a halt.

mom with sons in hot tub
Courtesy of Kirsty Pellow

I would like to propose the opposite! Based on my experience being an adult means we might be or wish to be:

  • Building significant relationships and friendships
  • Having children and raising families
  • Studying and training
  • Employed or seeking employment
  • Running a home
  • Making appointments
  • Managing finances
  • Coping with mental and/or physical health issues
  • Dealing with multiple social systems that claim to support us and our children

A non-exhaustive summary of everything that can be greatly challenging to the executive functioning of a neurodivergent brain, seeking to make us feel less than when we fail. We are anticipated to navigate a neurotypical system, set up for the convenience of the white, patriarchal male, and if we are unable to weather that storm, we are penalized for it. In our world, there is a distinct and pervasive lack of empathy and kindness.

A single mom to two multiply neurodivergent children, I feel the injustice acutely. I am anticipated to pour from an empty cup on a daily basis into the care, social, education, and welfare needs of my children.

I have never been asked about how my neurodivergence affects my parenting:

mom taking a selfie
Courtesy of Kirsty Pellow

How does it affect your mental health? How does it impact your relationships and social life? How does it affect your ability to work and be financially independent?

Can you imagine how it feels to attempt to find an employer that understands how variable my performance might be? What reasonable adjustments I may need to level the playing field, especially when I don’t ‘look’ disabled? Or how I might need time off to attend the multiple meetings I have each week to support the needs of my children. I choose to work for myself, but in reality, I have very little choice.

I am saddened to share that I have had the experience of being told, ‘As a social team, we only care about the needs of your children and not what’s going on for you.’ An astonishing lack of understanding that the unmet needs of the parent impact greatly on the needs of the child.

sons in matxching shirts
Courtesy of Kirsty Pellow

When I am the parent on the phone, struggling to get my child to access their education, the irony of this ambivalence is clear.  I am told ‘You are doing everything you can as a parent, a wonderful job, just keep going’ and simultaneously being shown that the impact this may have on me is never in consideration.

I am the first person the professionals come to when they seek to understand the nuances of my child, yet at every meeting and on every piece of paperwork I will never be included as the key professional when it comes to my children. It is anticipated that I will teach my child strategies and model exemplary behavior, but it’s not understood that I share the same neurotype and thus the same challenges that they possess! Cue the judgment.

We end up reliant on systems that are built from contradiction and yet query why our mental health is significantly challenged. I feel that one of our greatest challenges is the stigma around ‘labeling.’ Many of our diagnostic systems, created for the very purpose of diagnosis, are telling us ‘We don’t like to label.’ Please recognize the judgment in that. You are labeling me and my children as undesirable.

sons and mom spreading the news
Courtesy of Kirsty Pellow

I researched the word ‘Label’ and one of its definitions was:

‘A classifying phrase or name applied to a person or thing, especially one that is inaccurate or restrictive.’

This is fascinating to me. I have had the privilege of supporting and listening to many neurodivergent adults and children; I have never heard anybody call their label restrictive or inaccurate. The polar opposite is true. Our labels, or words, are an opening out, an understanding, an identity, a key, a map, a guide, a light in the dark. They offer us self-compassion, self-awareness, and the individual opportunity to self-actualize. Only WE get to decide what that label means to us and how restrictive or freeing its influence will be in our lives, in our time. Recognize our autonomy and right to do so, please.

‘Labels’ can take a great deal of emotional stamina and time to obtain. I fought for my label, and ever since staunchly wearing it, all of the other labels I gave to myself over the years ‘stupid, broken, unworthy, unloveable, too much, not enough, a failure’ are gradually fading away. With this, I get to help other neurodivergent beings step into their own power.

brothers holding boogie boards
Courtesy of Kirsty Pellow

Without my label, I wouldn’t have the family, life, and job that I love and I wouldn’t be writing this very article that illuminates it.

I consider my present, where I am in the here and now of being a neurodivergent woman and raising neurodivergent children. I am the creator of neurodivergent advocacy, wellbeing, and autonomy online community called Brainbow. The name heralds the affection in which I hold neurodivergence; being rainbow-brained, having access to all our colors!

True to my neurodivergence, my role is varied, heavy, and wonderful. I hold safe and confidential listening spaces, run peer mentorships with teens and adults alike, offer inclusivity training, and volunteer with women’s mental health organizations to offer my neurodivergent perspective and remove barriers to inclusivity. At Brainbow, my neurokinin is the sole focus; no waiting lists, no coming second, no shame, full visibility.

If you are neurodivergent or you love someone that is, the fight to be seen and heard starts young and never stops. For more information and support, please search ‘Brainbow’ on your social media platforms and look out for www.brainbowneurodivergence.co.uk launching next month.

Thank you for reading.”

sons in winter coats
Courtesy of Kirsty Pellow

This story was submitted to Love What Matters by Kirsty Pellow from Cornwall, UK. You can follow her journey on Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.

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