04/16/2026
It’s Autism Awareness Month.
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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.
