by Lynn Galeazza
Mom Is Very Involved: Raising awareness of the battle
ADHD families are forced to fight
When I think about ADHD families, the quote, “Hopefulness is not a neutral position, it is adversarial”(Cave,2022) hits perfectly.
I believe that hope cannot truly exist without action. Hope that does not include seeking change is a wish or a dream which only requires you to want for something. Hope needs effort. Hope is my mission for all ADHD families.
Before I tell you more about my personal story, let me first tell you more about us.
Like you and yours, my family is composed of people who are multi dimensional. In keeping with the purpose of my blog, the aspects of self that I will focus on the most will be our neurodivergence and invisible disabilities. Please remember that this in no way represents anyone or everyone or all of us.
It is also important to highlight that because I am the one writing, this is my story. It is about me as a mom trying to advocate for my daughter in the Ontario special education system. My story both overlaps and is distinctly different from my daughter’s story. It is she that had to walk into the school and find a way to survive the relentless discrimination and poisoned environment. My husband and our two sons also have their own unique experiences. Perhaps someday, other members of my family will share their experience with you. And maybe they won’t. I do have their consent to share mine and they are very aware that my story does not exist without theirs.
My husband and I created our family almost overnight. At 31, we had three children. We had been married less than three years. Our children were born 19 months apart. We were busy and overwhelmed. We had everything we wanted.
I knew our household was active, with a toddler and newborn twins, how could it not be? Chaos became normal. It was looking through the eyes of other people that I began noticing just how busy our home was. Grandparents and guests often looked shell shocked towards the end of their visit. They often hurried to put on their shoes and make their way home. I imagine them taking a deep breath as they left, getting home and making themselves a tea. I know they loved their time here. We are fun! And there is always something going on. I also know that they loved leaving.
I know that some people judged us. Why don’t they have more control? How can they let their children do that? Did you see what _____ did? This type of judgement always hurts. I have learned how to carry it and I now know how to hand it back. I no longer need anyone’s approval. I am in love with my family. We are not typical. We cannot be typical. We do not seek to be typical. That is hard for some to appreciate and accept. This is their work, not mine, not ours.
Let’s talk about some of our challenges, the invisible hardships. Sleep for instance. It was 12 years before we got our bed back. I wouldn’t change that despite the toll it took on my husband and me. Our first born slept with us for five years, no matter where he was when he went to bed, he woke up with us. Our second born, oldest of the twins by four minutes, slept with us on and off. He decided when he needed to, we honoured his needs. He never seemed to require much sleep. We bought him a clock to teach him what “too early” was. Most mornings he laid in his bed until it was “the right time.” Our youngest of the twins, by four minutes, had night terrors. Several times a week she would scream out in the night. Every time we ran to her room, and every time sounded like she was being brutalized. For those parents out there with a child with night terrors, you know exactly what I am trying to describe. Oh that sound, that scream, goosebumps will form, the hair on your neck will stand. Despite knowing they are safe, you will jump and run to their room, as your automatic stress response activates and takes over. She slept with us, for part of the night, until she was 12. We purchased a day bed to sit at the end of our king bed, guaranteeing that we could all find a place. I wouldn’t change a thing. We didn’t sleep well for more than a decade. I am still catching up.
They were busy, always on the go. We believed in allowing them as much unstructured play as possible. Each of our homes had a designated space for them. At our second home, they had a playroom that put most to shame. Sometimes I was overwhelmed by their toys, by their play, by the chaos.
I did not know ADHD was a part of our lives back then.
I can still see my children in my mind’s eye. Playing in the mud, running down the street. Playing trucks. Making a mess. Dirty. Laughing. Loud. Free.
Go play, for my sanity and yours. So messy at times. How each of you loved the mud, sand, raspberries, and adventure. I am so proud of the freedom we allowed each of you. So proud that we followed our instincts instead of the judgemental eyes of the gallery. So proud that I stopped reading parenting books upon realizing that they were not being written with my family in mind.
When we went out we had a double stroller or the choo-choo train. If you don’t know what a choo-choo train is, look it up, you won’t be disappointed. We also used a “leash” for the twins, cute ones, designed as a monkey and a unicorn. They were not treated like pets, although some people looked at us like we were forcing them to wear a dog collar. I often thought, just one day in my shoes would take that look off your face.
If I did not have the twins in a harness, I would have lost them. They usually ran in opposite directions and always at the same time. Their curiosity and zest for this life have always been magical. They run to what captures them, it is beautiful. However, this beauty is not celebrated once we leave childhood. Once they hit our education system, they have to stop being curious, they have to sit and listen to what you want them to know. My family is not wired for this. I always knew this instinctively but it took me a long time to understand the why and what the why meant.
I also remember when my daughter had a public temper tantrum, an older woman approached me when I didn’t immediately rush to put out her fire. The woman said, “I was wondering who her mother was,” as I walked towards my daughter. I think she wanted to shame me.
Why do we do that to each other? Why do we pretend to know what is best for another? All too often ADHD families face this type of judgment and stigma.
While I did not know its name, ADHD, I did know my children were wonderfully unique and needed and deserved an environment designed with them in mind.
I continue to carry warlike hope for this possibility. Hope for the day when our education system makes a consistent effort to understand differences. Hope for the day this difference is acknowledged with dignity. Hope for the day that ADHD families have access to an education system that both celebrates them and has the knowledge and tools needed for them to thrive.
Thank you,
Lynn
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