Tomorrow is Jacob’s 28th birthday.
And it lands right on the heels of Autism Awareness Month.
The irony is not lost on me.
Because awareness is easy.
Living it for 28 years is something entirely different.
For nearly three decades, we have fought relentlessly for every inch of progress.
I think back to the little boy who cried for 12 hours a day.
The exhaustion. The confusion. The helplessness.
We navigated years of severe reflux.
Eight years of constant ear infections.
Multiple sets of tubes.
Chronic, debilitating constipation that consumed entire days.
Jacob had no speech.
He was an extremely selective eater: five foods. That was it.
Not for a phase. Not for a few years.
Until he was 18.
There were years marked by elopement.
By self-injury.
By moments that pushed every limit of what a human being can endure.
There were days I truly could not see the light.
Days where hope felt very far away.
We’ve lived through emergency surgeries.
OCD that can test even the most patient, grounded person.
And then came one of the most heartbreaking chapters of all, finding residential placement when he turned 18.
No parent dreams of that moment.
No parent prepares for what that actually feels like.
Over the years, we have tried everything.
OT. PT. Speech, supplements.
Cranial sacral therapy. Music therapy.
ABA. Typing. FC. S2C.
Countless aides. Teachers. Therapists.
An entire team. An entire life built around support.
And slowly over the years we have also seen progress.
This little boy who never cared about birthdays…
never understood presents…
is now at 28 he loves having birthday parties.
He asks for them every year.
He wants gifts.
(And yes—about 90% of them still end up in the garage.)
But that’s not the point.
The point is he cares.
And that matters more than most people will ever understand.
He is making more attempts to communicate.
He is eating more foods.
And for the very first time this past year
he went on a vacation…
and connected with a friend.
A real connection.
That is progress.
That is everything.
Jacob has come so far.
And yet this is the part people don’t always want to hear-
He will still need 24/7 care for the rest of his life.
His ability to regulate his body and access meaningful communication is inconsistent.
About 20% of the time, he can communicate with intention.
And that 20%?
It is hard-earned. It is significant. It is something I will never minimize.
But 80% of the time, communication is echolalia.
And that reality matters too.
Because both things can be true at once:
He has made incredible progress.
And he still has profound needs.
As I get older, the fears get bigger.
Not because he hasn’t grown..
but because he has.
Because we see what’s possible.
And we also see how fragile the systems around him are.
We have spent 28 years fighting to give Jacob the best quality of life possible.
And we are doing it within systems that are still not built to truly support adults like him.
That is the truth behind the word “awareness.”
So tomorrow, we will celebrate.
We will celebrate progress.
We will celebrate resilience.
We will celebrate a life that has been hard, beautiful, complicated, and deeply meaningful.
We will celebrate Jacob.
But we will also hold space for the reality.
This journey doesn’t get easier with age.
It just changes.
And the need for action, for support, for systems that actually work
has never been greater.
Happy 28th Birthday, Jacob.
You have taught us more than you will ever know.
