The Max Life

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.

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.

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.