The Max Life

"GROUP READY"

The new hidden discrimination word is "Group Ready."

If you have a child with extensive needs and requires support, camps don't want them.

So we tell caregivers that they need to find social opportunities for their children because it's great for their mental health and overall social emotional well being, but we don't want to make room for those who need this the most.

It's ironic how the most in need of social comminity connection are the LEAST to have access to it.

I say this with all sincerity to anyone running a camp especially those who claim to be inclusive-
You are a fake, a con, and not worthy of these children and youth in need. Especially those camps and city run programs that are receiving funding as part of their "accessibility and inclusion" plans to tick off their legal requirements.

And to the camps that put Christian teachings and values as part of their camp experience- you are the worst of all. Stop advertising how amazing you are because you "take these individuals," and put palatable photos of children with disabilities on your websites to show the world your amazing willingness to care.

I used to believe that I was so fortunate to have a camp to take Max because he had no where else to go. I now feel sick to my stomach over it. The few weeks were great. But I nor Max should have ever felt like it was privilege to attend. Those spots should have been open all summer long with support so Max could could learn.

I can no problem pay for 8 weeks of camp. When it comes to needing 1:1 support I am told he can only attend one week due to the high needs of so many wanting to attend.
So this isn't about money or funding.

It's not discrimination. It's an abomination.

Those camps that use the word "must be group ready, cannot accommodate personal supports needs, eloping, or any form of behavioural support," will still put "inclusive camp" in their titles.

No one wants these kids.
Not even paid to help them.
Not even with extensive extra payment.

How can anyone be "group ready" if they never have a chance to work with or simply be with others?

Imagine welcoming someone even when they cannot "contribute" or need support?

So let's exclude them nicely.

Let's say we will put them on a "wait list" that they can't see or know about and never get back to them, their parents won't have respite, and their child will regress and know nothing but seclusion. By the time we wait and see, the summer will be over and they won't try again because the process was just too hard.

100 million.
That's all I need to build the center for all abilities.

Let me know if you're interested.

In the meantime-
Me and Max will be having our own camp.

Sit with this sentence for a minute:
Accomodations and acceptance are NOT generosity.

THEY. KNEW.

If you're wondering if they knew how bad it had gotten for you, I am here to tell you- they did.

They knew how bad it was for your when you advocated and fought at school. The many, many schools.

They knew when you presented on TV, radio, in writing, and in conversations with governments, therapists, and clinicians.

They knew that neither you or your child were sleeping or caring for yourselves because mental illness had now reared its ugly head into the mix- the aggression, the eloping, the medical complexities, the daily fight to get to the next.

They knew you would never work again, that you and your husband would struggle to keep it together, that you lost your mom. That you were on your 4th home displacement, and finding a safe home for your son would throw you into a funnel of instability.

They knew and saw your falling apart at every seam you had patched up.

They saw your posts, your messages, your story told en masse.

They knew that you cried everyday.

They knew that you were isolated and had no community or village of support.

They knew, they knew, they knew.

And they went about their lives telling themselves that it wasn't their issue to help.

Worse, they said it was up to you to figure it out and no one wanted to care for a disabled child.

So they watched you suffer- you and your entire family.

And when you spoke up about it, you now became the villain in their story.

You burn inside knowing this. You want so badly to tell your side of the story to anyone who will listen. But you are woefully tired. So exhausted, you cannot care for yourself or your child and everyday, the rope holding you together frays more.

You hate.
You know this isn't a good thing.
But you can't help it.
When it came to your child, your disabled and lonely, child- you couldn't hold it in.

So you lashed out like a dog that had been caged up without food or connection.

They knew you were drowning and asked you first to tell them why you needed help when your arms and legs were about to collapse from holding you up. They still didn't throw the life raft to you.

One day, I will tell my side better. Maybe when the winds turn and lift me up a little. Maybe when my prayers are answered and I have strength to tell it better.

But for now I wait. I wait for my son to feel better and I to regain my strength to care for him. Maybe it will happen with time. Maybe they will crown me a saint for carrying it all, or villainize me for dropping everything.

What I wouldn't do to find a place where one just helps without transaction,
Without need to explain,
Without proving worthiness.

How I long to find this place.

I haven't been on here because like most things in my life- this too would be "too much."

Souls like me deplete. They cannot unsee the things they have seen. They fight daily to exist amongst circumstances they cannot control.

This was given to me by my dear friend, Paul.

He is a grandfather to an Autistic child and has been very involved raising him. He met my husband and I years ago at play park we and we kept in touch. He tells me every opportunity he gets how amazing I am and how my son is so fortunate to have me and my husband as parents.

He is kind, witty, wise, and above all- stoic. They just don't make them like him anymore. He's the of the old Irish clan- true to his roots, tell it like it is, fight to the last ounce of strength left kind of fellow.

Sometimes, God sends you people that you need when you didn't know you would need them.

I need people like Grandfather Paul. I never had Grandfathers.
All caregivers in my position do- we need older mentors willing to listen and offer a kind word.

I am uncertain who wrote this, but I share this with all those struggling like me. In the midst of someone's pain, the best thing someone can do is to just listen and stand by.
But most of all, we need people to BELIEVE our STRUGGLE is REAL.

I hope the rain clears up for you, and that your rainbow is close by.

“In our darkest moments, we don’t need solutions or advice.
What we yearn for is simply human connection—a quiet presence, a gentle touch.
These small gestures are the anchors that hold us steady when life feels like too much.
Please don’t try to fix me.
Don’t take on my pain or push away my shadows.
Just sit beside me as I work through my own inner storms.
Be the steady hand I can reach for as I find my way.
My pain is mine to carry, my battles mine to face.
But your presence reminds me I’m not alone in this vast, sometimes frightening world.
It’s a quiet reminder that I am worthy of love, even when I feel broken.
So, in those dark hours when I lose my way, will you just be here? Not as a rescuer, but as a companion.
Hold my hand until the dawn arrives, helping me remember my strength.
Your silent support is the most precious gift you can give.
It’s a love that helps me remember who I am, even when I forget.”

Do you know someone who is looking for a summer position to teach children, youth, and adults of all abilities to swim? 🏊‍♀️🐬
Someone who is passionate about inclusion, accessibility, and aquatic engagement? ♿️
Someone who believes everyone belongs in aquatic environments and is committed to learning more about neurodiverse affirming practices?♾️

Let's meet! 👋

Contact Splash Aquatics Inc. to join a thriving swim learning school that believes in giving everyone access to aquatic environments for physical and mental health well being, as well as social and community engagement!

Splash Aquatics is a committed inclusive company dedicated to breaking down employment barriers for Autistic and neurodivergent individuals and can offer both paid and volunteer positions to start.
Info to apply below👇

Now serving Milton, Mississauga, and Brampton:

🐟Private backyard sessions.
🐠In home lessons AND at
We Rock The Spectrum - Brampton
ErinoakKids

Swimmingly Yours, 🏖

The Splash Aquatics Team.

I've been sick for over a week. Things were just so bad. I'm up for the first time finally able to write without throwing up. I can only describe my sickness as a total shut down and shock. I will tell you more about it later.

I want to thank each and every one of you who took the time to support me on my last post. Max is with me. I will fight to the end of the Earth before I have to give him up because I can't care for him anymore.

I read so many notes of love, acceptance, validation, and heartbreak. I also read about so many of us living parallel lives. I call it the "different characters, same script journey."

I want to set the record straight incase there was any thought that what I write isn't real or that I myself use AI to write.

To anyone who refuses to believe me or that my writing is mine- here's my message:
AI can't do what I do.

For all that it can do, it can never be me or what I am made of. It cannot fight like me, feel like me, or love my son like me.

And ultimately- it cannot write like me.

So for everything that isn't going well in my life, God left me one thing to use and that's my gift to bring my images in my brain and my feelings in my heart here to you.

I don't write or post because I make money doing it or because I can compete with other content creators. I write here because someone on their own life raft, is looking to hear someone else's voice other than their own echo back.

So thank you, I guess? Thank you for thinking my expression is so polished and so eloquently put that it could only be a contrived artificial intelligence that could do it?

I'll come out to speak one day. But I'm not ready.

Thank you for being here. And if you can, could you validate that you've been following me for a while and can vouch that I can indeed express myself and have been way before AI?

Blessings.

This is the post that no one wants to talk about during Autism Acceptance month.

It's the scene of a mother who for 11 years never got to be a Mom.

Instead, she became advocate warrior and clinical therapist step in, medical researcher, and co regulator extraordinaire.

She lost her career and home in the process of shedding her skin, and in its place grew layers of patch work of foreign materials that never fully covered her.

Her wounds exposed, constantly.

Her family called her all sorts of things cause she yelled for help and was told it was her problem to sort out.

Her marriage became a clock work of shifts in caregiving, resentment, and a heart breaking sorrow of 2 people who were now ghosts of once were.

She began to slowly fade from social circles due to fatigue and exhaustion unable to match the lives of the others in simple acts of holiday get togethers and school graduations.

She would fight to cook a meal.

Everyday became a game of survival where she always lost.
Everyday she said she could do more.
She set up programs that centers and organizations with millions of dollars did not.
She wrote.
She appeared in media, she met with governments.
She spoke eloquently and fiercely.
Sometimes she needed to show teeth and called out those who had both the resources and reserves to help kids like her son.
They all told her she should write a book.

She did it just to protect him, her baby.
Who now grew bigger and stronger and she could no longer hold or hush to contentment.
Or find solutions.

She was losing hope and control daily.

Everyday, he woke up anxious.
His body and brain betrayed him and he could not control it.
It screamed to leave the home daily come home again, and then leave again.
He would need supervision at all times for the independence he so desperately wanted but couldn't become.
He was suffering.

They would give it all sorts of names like co morbidity, dual diagnosis, inflammation, mental illness. No one actually helped.
Some so ignorant would say it was all him or her and that they both needed "compliance."
She couldn't get him threw the doors to see the "helpers."

She drove him for hours.
She went to parks and swimming pools.
Malls, restaurants, trampoline and soft play places.
Anywhere that would hold him if only a while but she was always on guard.
She was not the one enjoying her coffee as he played alone.
She was an active participant, communication partner, and security for him and others.

She now needs a hip replacement.
She wants to desperately admit herself to a hospital for rest.
Her thoughts are dark.
She questions how God would do this to her and her baby.

He would meltdown.
He would hit. Bite. Pull her hair. Scratch and push her.
She would deescalate and bring him home.
He would cry.
The onlookers watch.

He would calm down.
He would look at her with those piercing blue eyes. She could hear his soul suffering.

She ran herself into the ground searching for psychiatrists and all sorts of meds and remedies.
His body would become inflamed with no apparent allergen and thwart him into idiopathic anaphalaxis.
She now carried an Epipen.

They did stem cell therapy.
Medications.
Therapeutic interventions.
His body and brain rejected them all.

The "help" didn't want him.
Only those smaller and could sit at tables.

She couldn't set up appointments.
She couldn't work because of the same reason. They always called her to come get him.
Unless her husband was the one watching him she never got a chance to do basic errands or clean the house.

This was the Autism that she didn't want her son to have.

The one where an entire world did not see him as worthy to invest in and care for.
The one where parents become too depleted to care for despite holding it together for so long.
The one where she would need an army of help to keep him.

She spoke to her social worker about residential care.
It broke her.
It broke both of them at that table that day. She had been her rock for a decade. They had hoped and planned for years together.
She cried for hours on end.

The child didn't understand why.

She wonders if she could have screamed louder or said the right words when the 100 people she spoke to asked her to explain why she needed help before.

She hated the world now.

She hated
And hated,
And hated more.

And all she wanted was for someone to hold her baby.
So she could rest.

Not to get her hair done.
Not to buy new clothes that she desperately needed.
Not to go on a date with her husband.
Not to go for a walk.
Not to go to the spa.

Just days and days of rest.

Just so she could care for him more.

I have little to say on this day.
Only because I say so much every other day.

I can say however, that I wasn't prepared for Autism. Nor did I have time to learn about it.

I just knew that if I didn't help my son, no one would.

So if you see us walking in your community- let us know we are doing a great job navigating what we never saw coming.

Believe us when we tell you that Autism is both a gift and a disability that affects not only the Autistic individual, but the entire family unit.

Listen to Autistic voices when they tell you their lives have been plagued with discrimination, injustice and mistreatment.

Acknowledge that there is no golden standard of Autism "curing" but only the community acceptance to love someone as they are. And that caring for someone does not mean that human being is less.

Commit to learning more, and to listening too.

Admit to what could not be working, and offer the promise of finding solutions.

Dream that things can be better.

Sit with us when things get hard. If only to feel the calm of your support.

Do not judge us for things you have never experienced.
Do not look away when we are in pain.
Do not shame us for not doing more.

If you do anything today to help us, remember that seeing us, hearing us, and holding space for us- can heal us.

Because I think acceptance is just that- healing from what has pushed us down and attempted to silence us.

We are here.

We are trying the best we can in a world neither build for us or near understanding us.

True acceptance is the belief that we belong and the commitment to ensuring that happens.

We must shift our views.
We must learn more.
We must invest in helping those most affected and left behind.
To create more capacity and care.

I used to dream about things I could achieve.
Now I dream of a life where both my son and I are safe anywhere we go.

Just being us.
When we are well,
And when we need help.

Just being us.
Stims and all. Meltdowns and nervous systems in flux.
Co-regulation and connection.
Community.
Help.

We have so much to offer too if you'll let us.

I wish one day to never have to ask permission again.

But until then, help us build this new path of renewed hope and determination. One of infinite possibilities.

Thank you. ❤️ ♾️

April 2nd Autism Acceptance Day.

A few days ago, Max didn't want to get out of the car. I had arranged a time for Max and his trusted support friend to meet at the trampoline park.
When we got there, instead of running to the door, he sat still in the back seat.
When I opened his door, he just took the door and closed it again.
I opened the door again.
I asked him why he didn't want to go in.
He simply said, "Belt on, drive."
He took his half juice/half water bottle and sipped it. I looked at him through the window and he looked ahead.

I went inside to tell his friend Max didn't want to come in.
I left upset because I was tired and needed a break myself. Even if to sit at the table by to scroll through my phone for a few minutes.
I had planned this one hour for Max to learn and engage to work with someone else other than me. It's all the coordination and effort.
I went back to the car to see Max looking out the window.

"It's alright Max," I said,
"Next time."

We drove around and stopped at the lake for some fresh air. Max didn't want to get out. So I opened his window for him to see the water.

Again he said "Drive, car."

We did and then went home. He became dysregualted and didn't want to eat.

The next day, I noticed Max didn't eat his breakfast nor did he want to drink. He pursed his lips together and would just smile back at me. He wouldn't even swallow.

I had seen this before.
Max was in fact sick.

In another life time, Max would have been able to tell me the day before "No mom, not today, I'm not feeling well," or "please keep driving it helps to take the pain away and regulates me."

Oh what a privilege.

I write this for a few reasons.
One, is if you're a caregiver give yourself some grace. You're doing the best you can.
And two, to anyone who works with, or cares for someone who cannot always reliably communicate always remember to get curious.

Why?
Why can't they do something?

Please don't assume someone hasn't understood you, or is choosing to be defiant.

Are they hungry?
Are they tired?
Are they in pain?
Are they sick?
Are they afraid of someone or something?
Is the environment too triggering?
Is their brain or body not able to transition just yet?

My greatest fear is that Max will be punished by someone who looks for compliance over understanding and connection. That they will assume he is being "behavioural" instead of investigating more.

Max has not said a word in 2 days. He shuts down when he is sick. His throat hurts. We saw the doctor. He has meds. We are working through it.

Being sick isn't easy for anyone but it wreaks havoc on a system that is already in constant flux.
There are tears, meltdowns, and fear- for the child and the parent.

Learning to cope.
Learning to take meds.
Learning to get through it.

Hoping tomorrow will be a better day for all of us.

POPCORN 🍿

Lillian, a woman with mild intellectual disability must trade in her good behaviour points for a snack at the concession stand.

Yesterday, I met a wonderful young woman. I have changed her name to respect her privacy.
She was at the trampoline place where I bring Max.

Max was having his popcorn snack. Just nearby, a lovely young woman was going down the slides. I commented on how brave she was. I'm fearful of heights.

She came up to me and said this was her first time here. She was with a group with their support persons. She asked me if Max was my son. Then she said "Hi Max." Max looked at her and smiled.

Lillian let me know that although she loved the slides, that she was getting older. That she now had a nephew. She couldn't have been more than 25. She told me that she was like Max and loved popcorn, too. She smiled and explained how she was a "chips and popcorn girly."

Max needed something, so I excused myself from the conversation.

A few minutes later, I approached Lillian's support worker and let him know how amazing Lillian was. I wanted to buy her some popcorn from the concession stand so she could come sit with Max if she wanted to.

What he responded next would bring grief and anger to my heart.

"No, thank you, she has to trade in "good behaviour points" for things."

My face must have changed. Because he stopped smiling.
I asked him what training support workers need to be with Lillian. He said, "Training you mean, like ABA?"

I asked him what the name of his agency was. This is when the conversation stopped. He nervously started walking away.

Max was on the move. I didn't want to make a scene.

When it was time to leave, I saw Lillian sitting at the long lunch table with her peers. She had a sandwich and a cute purple cup. I gently lay my hand on her shoulder and let her know we were leaving. She smiled and asked to see Max, but Max was on his way out.

Imagine being an adult and being told when you could enjoy your snack? Being told when you could shower and when you could leave, if at all?

Imagine saying, "No" to something and others automatically seeing defiance and non-compliance instead of nervous system dysregulation, illness, tiredness, or hunger?
A token board and notes in a chart now dictated how you would be treated, or what you had access to?

I held it together until I got to the car. Then the tears wouldn't stop.

What life does one have if they can't even buy their own snack, or even allow someone to give it as a gift because having points in a "good behavior chart" comes first?

Lillian could be working.
She could be volunteering.
She could be with friends and family, all with support.
She is everything I could only wish Max to be.
She could be helping me with Max.

And yet, some stranger decides each day what she can/cannot do.

This isn't inclusion. It's institutionalization out loud. Only, that day, it was only me who saw it. Everyone else normalized it. Even praised it as some would say "at least they get out."

On my way out, I saw an employee trying to fix the coffee machine. Guess who was trying to buy a coffee for the "hard work" he was doing caring for Lillian? I usually don't see Karma coming in that quick. Today she swooped in on fire.

As I was driving the faces of Lilian and her friends flashed before me.

I looked in the rear view mirror at Max. He smiled back at me.
He took out his snack bag. He opened his container, and ate the rest of his popcorn.