As Disability Month comes to a close, I wanted to share a bit about our daily journey.
Every day, I wake up to the sound of my 25-year-old daughter moving about. She's vibrant, full of life, and wonderfully neurodiverse. Living with her is a journey of love, patience, and constant advocacy. Our life together is a mix of joy and challenges, laughter and tears, and moments of triumph and struggle. It's a journey I wouldn't trade for anything in the world, but it's also one that requires daily fights with and beside her every day.
Neurodiversity is a term that embraces the idea that neurological differences, like autism, ADHD, and other cognitive variations, are natural and valuable forms of human diversity. My daughter is unique, and her neurodiverse brain sees the world in ways that most people don't. This perspective brings its own beauty and creativity but also challenges that we need to navigate together.
The Daily Battles
From the moment my daughter was diagnosed, I became not just a parent but an advocate. Every day, I fight for the services she needs—services that should be readily available but often require persistence to obtain. These include access to appropriate healthcare, educational support, and social services that provide life skills to help her live a fulfilling life.
Navigating these systems is not easy. The bureaucratic red tape can be overwhelming, and the constant pushback from institutions that should be allies can be disheartening.
Sometimes it feels like I have to prove her worth to a world that doesn't always understand or appreciate her unique gifts. But I do it because she deserves nothing less.
Fighting With and For Her
Fighting for my daughter also means fighting with her sometimes. She is an adult, with her own opinions and desires, and like any parent-child relationship, we have our disagreements and challenges. Her neurodiversity means that communication can be a bit more complex, and misunderstandings are common. It's a dance of patience and understanding, one that requires me to beat to a different drum daily.
There are days when her frustrations boil over, and she lashes out. It's hard not to take it personally, but I remind myself that these moments are not about me—they're about her trying to navigate a world that often feels overwhelming and confusing. And some days, it's me. Together, we work on strategies to help express our feelings in healthier ways and to cope with the overload that can trigger outbursts.
For every challenge we face, there are victories—big and small—that remind me why this fight is worth it. Recently, she has learned to help with small tasks in the kitchen, like chopping vegetables or stirring a pot on the stove. This was a milestone that took months of preparation and practice. Watching her take this step towards independence fills me with pride and reaffirms my belief in her abilities.
She loves being around people and is very social, but sometimes she says or does things that might seem inappropriate to others. When this happens, we have two choices. Apologize on her behalf which we did for many years; or support her diversity (providing it isn’t hurtful). We are always trying to teach considerate behaviours without dimming her spirit. If the behaviours are not harmful and are just uncomfortable – that is a whole other discussion. These moments are a testament to her resilience and strength, and they fuel my determination to keep advocating for her rights and needs.
A story to share:
I can tell my daughter makes some people uncomfortable.
And I think: GOOD, make people uncomfortable.
She was born to take up space, to make her presence known, to stand out not blend in. She is loud and she is wild, I knew it from the moment I held her in my arms, I also knew that it was my job to protect her fire even when (especially when) it made other people uncomfortable.
I’m not interested in raising a tame daughter, I’m not interested in teaching her to keep her opinions to herself. I’m not interested in teaching her to be palatable or quiet or easy. She is her, and I’m here for it.
I am teaching her to be kind. I am teaching her to use her voice for good. I am teaching her to treat people with respect.
I will never teach her to make people comfortable. That isn’t her job, and it’s not mine or yours either. We were all born to take up space, to make our presence known, to stand out and not blend in.
Sometimes I think our daughters are showing us the way forward as we cheer them on and fan their flames. Author: unknown
One of the most important lessons I've learned is the value of a strong support network. Surrounding ourselves with people who understand and support our journey has been invaluable. Friends, family, therapists, and other parents of neurodiverse children have provided guidance, encouragement, and a listening ear when I've needed it most.
Connecting with other parents has been particularly helpful. Sharing experiences and strategies with those who truly understand the daily challenges has not only provided practical advice but also a sense of solidarity and hope. We are not alone in this fight, and together, we can advocate for a better world for our children.
In the midst of fighting for my daughter, I've learned that taking care of myself is just as important. Advocacy can be exhausting, and it's easy to get burned out. I've had to remind myself that it's okay to ask for help, to take breaks, and to prioritize my own well-being.
Finding small moments of joy and relaxation—whether it's reading a book, going for a walk, or spending time with friends—helps me recharge and stay resilient. Taking care of myself ensures that I can continue to be the advocate and parent my daughter needs.
Not every day is beautiful
But you are
I can’t wait for some days to end
But you’re my beginning
My middle
My meeting place
Some moments I just want to be alone
Even though every moment with you is perfect
It doesn’t always feel like that though
Not in that moment
When plans fall over
When no one sleeps
When I’m overwhelmed
You may deplete me some days
But you complete me every day
You’re the bags under my eyes at all hours of the night
My tears of fatigue
You’re also
My heart
My breath
You’re the ground that brings me to my knees
The ground that you walk on that I adore
My grounding
You are my weakness
And the strength that I need
The build up
The break down
My vulnerability
You are the tune I hum
My scream
My follow
My fall
My finding
The broth of my bones
My skin
My thoughts before and after
You are mine but not mine to keep
But you keep all of me
Even though I ache
Even though some days are so damn hard
Even though I doubt I’m doing this right
Not every moment is beautiful
But you are
You are the promise of love in a tired storm
Even though I may wish some moments away
You’re the hands of the clock I will to stand still
And I am at the hands of you.
Credit: Jess Urlichs
Looking Towards the Future
As my daughter grows older, new challenges and opportunities will arise. The transition through adulthood is a complex journey for any young person, and for those who are neurodiverse, it requires additional support and planning. We are working together to build a future where she can live as independently as possible, pursue her interests, and find her place in the world.
This means possibly exploring options for employment one day, housing, and community involvement that align with her strengths and passions. It also means continuing to fight for systemic changes that will make these opportunities more accessible to her and others.
If there's one message I hope to convey through our journey, it's the importance of understanding and acceptance. Neurodiversity is a natural part of the human experience, and every person, regardless of their neurological makeup, deserves respect, dignity, and equal access to opportunities.
Society has made progress in recognizing the rights and needs of neurodiverse individuals, but there is still much work to be done. It requires a collective effort to break down barriers, challenge stereotypes, and create inclusive environments where everyone can thrive.
Living and fighting beside my daughter is a journey filled with challenges and rewards. It's a journey that requires resilience, patience, and unwavering love. Every battle we face together strengthens our bond and reaffirms my commitment to advocating for her rights and needs. Each small victory and every challenge we overcome shows how deep our love and strength are.
In sharing our story, I hope to inspire others to embrace neurodiversity and join the fight for a more inclusive and understanding world. Together, we can create a future where every individual, regardless of their neurological differences, can live a life of dignity, fulfillment, and joy.❤️