"When He Outgrew Cute" - The Story Behind the Poem by Jess Ronne

Jess Ronne wrote the poem "When He Outgrew Cute" after a particularly tough experience with her teenager with profound special needs. The poem went viral, and has since been accessed over 1 million times. In this video, Jess shares more about the situation that prompted her to write the piece, and how it has fueled her advocacy for special needs caregivers.
Jess on Instagram - / jessplusthemess
The Lucas Project - www.thelucasproject.org/
Unseen: Caregiver Documentary - caregiverdoc.com/
"When He Outgrew Cute" by Jess Ronne
When he outgrew cute
The looks changed from compassion to concerned
Towards him
And towards those who supported him.
And sometimes disgust
Overshadowed concern
As he stubbornly clung to his ways.
When he outgrew cute
The calls increased
Calls desperate for help
Desperate for summer options for a fifteen-year-old in diapers
Desperate for respite
Desperate for adaptive equipment
Desperate for anything that would assist a non-verbal man child
Or anyone
And the voices were silent
Or they whispered -
Sorry.
Sorry.
Sorry.
When he outgrew cute
His movements were no longer celebrated
But instead feared
Violent head banging
Aggressive pulling
Dangerous optimism
With the strength of a man
And not that of a child.
When he outgrew cute
The damage began
Damage to walls
Damage to others
And damage to himself
And this damage
Wreaked havoc on more than just objects in his path.
It wreaked havoc on psyches as well.
When he outgrew cute
The walls caved in
And the house became a tomb
And the isolation suffocated those within
As they desperately yearned to belong
To something
Somewhere.
When he outgrew cute
Milestones were no longer encouraged
And his future grew dim
And symptoms of PTSD set in
For those who loved him and had been
Rattled by his screams for years.
When he outgrew cute
Mood altering drugs were doled out like candy
One option after another
For him
And also -
Suggested for his caregivers.
Drugs to dull the pain
Drugs to pacify
Drugs to silence the demons
When he outgrew cute
She outgrew herself
As every ounce of strength was poured into him
And she got lost in the daily grind
Lost in the sleepless nights
And invisible behind the never ending tasks
When he outgrew cute
She outgrew silence
And she raised her voice
To join the cacophony for change
And her battle cry rose -
A better tomorrow!
For him
And for those who loved him.
Because when he outgrew cute
He outgrew society
And that’s simply not an option.
For anyone.
Anymore.
When he outgrew cute
She found the strength to move forward
To move towards advocacy
And move towards hope.
She found the strength
To keep going
And keep growing
And she found the strength
To just keep living.

[@maggie5865]

Thank you for this. My son is 30 has DS and autism. The older I get the harder it is to manage our lives as a family. Most days my husband and I feel very alone. Others have no idea what it is like.

[@barkleydog3783]

💙💙

[@beyondlifedeathwithjadenje1146]

💛💙💛💙

[@smithtweedyco1209]

I have left parks this way so many times!

[@sarahk.424]

Thank you so much! You're telling my story ... My son is 17 with multiple needs and I'm a single mom doing it all. I felt so alone and it's nice to know that I'm not. I'm looking forward to watching the unseen movie when it's available

[@rivkaheidex1608]

My son is 19. He lives in a residential school. I miss him so much every day. It's terrible. I think about this every day. To me he will always be my adorable baby boy. But to the outside world he probably looks like a deranged man. I need help really bad.

[@barkleydog3783]

Love you, Rivkah💙💙

[@maryrutten3387]

I could not have said it better. Total truth in all your words. I have a 39 yo son with Down Syndrome and autism. I feel like I do not belong with either groups. My son moved into an adult family home in September 2019 he was kicked out September 2024 due to aggressive behaviors. He is now back home. Over the years in this adult family home (AFH) so many negative things happen to him. His overall experience there was horrific! When he was asked to leave I had already been looking for other living arrangements for him. So many of his behaviors came about during his years there plus he has acquired many health issues. A week after moving in he ended up in the ICU on a ventilator for RSV. He was hospitalized 6 weeks and came very close to dying. He was intubated and reintubate 3x, he had a couple of major seizures and coded, (no history of seizures) and a blood clot. He has never been the same since. He has also developed many other medical problems. Early 2020 -2 months of recovering from his RSV, Covid hit. His AFH went into lockdown. It just spiraled from there.
So often I see the pictures of my son from birth to teens and he was so cute and so loving and life was kind of like having any other child. I mean we had all his therapies and he reached milestones later but he was so darn cute! I wonder too what happened to that cute little boy. How I want him back. Live seemed so much easier back then.
When I see these FB support groups for Down Syndrome and see all the so very cute little ones and hear the hopes and dreams of the parents and their excitement, I want to say you have no idea what awaits you and your child. However right now I believe they need that and feel it. When harder times hit they will have formed that very strong bond with their child. I remember all those feelings so well.
You are right about supports trying to find them as our children age becomes harder and harder and by the time they are 18 and considered adults and move into a new phase of their lives supports seem almost nonexistent. You read articles about the need to support caregivers but they are always referring to children taking care aging parents. I have been there too. However they fail to recognize the parents taking care of the children with disabilities, which is a lifetime commitment. They just don’t seem to recognize it of just don’t think about it. We have to be louder and visible because most people have absolutely no idea and just haven’t made a connection.

[@bd7628]

I have 2 children non verbal with severe autism a girl and a boy. I relate to this so much and the feeling of isolation and worry I feel is unbearable at times.

[@mahendrasmith7589]

You are not alone. You sound like an amazing mom and caregiver. Have you ever consider having professional help for your son either at your house or residential facility? Sounds like either you, someone else or even himself could be seriously injured if he is not managed professionally.

[@tinachadwick6712]

Thank you Jesse, yours and your families commitment is amazing. I'm caregiver for family member. So much more you manage when carerecepiant is your child. I think we also need to step up if we see a parent or family member being hurt, they matter as much as person with disability. We do need to give more funds and choices for family members caring for special needs child, government prayfully see important and difficult job you and family do. Jesus cares, He is way...John 14:6, praying

[@annabellnikolaus3610]

Magnificent My friend

[@beyondlifedeathwithjadenje1146]

Your not alone Jess. I also understood the demands of caregiving for my medically fragile big boy son in diapers🙏♥️