The First 30 Days After a Diagnosis, Held Gently

There is a strange thing that can happen after your child receives a diagnosis.

The world keeps moving.

You still have to figure out dinner.

There are clothes in the laundry.

Someone needs to go to work.

Your child still wants their favorite snack, their favorite show, their favorite toy.

You may walk out of an appointment carrying papers, recommendations, phone numbers and words you weren’t expecting to become part of your family’s vocabulary.

And somehow you’re supposed to know what to do next.

I didn’t.

What I remember most about that early period wasn’t having a perfect plan.

It was having questions.

What does this mean?

What happens next?

Who am I supposed to call?

Am I doing enough?

Should we start everything immediately?

What did I miss?

Will he be okay?

And perhaps the hardest question of all:

What is his life going to look like now?

If you are somewhere near the beginning of that experience, I want to tell you what I wish someone had told me.

You don’t have to figure out your child’s entire future in the first 30 days.

You only have to begin.

Your child did not become someone different today

This is important.

A diagnosis can change the way you understand certain things about your child.

It may give a name to things you’ve been noticing.

It may answer some questions while creating twenty new ones.

But your child is still the child you knew before you walked into that appointment.

The things they love are still the things they love.

Their laugh is still their laugh.

Their personality didn’t begin with a diagnostic report.

Neither did their strengths.

The diagnosis may eventually help you understand how to support them better.

But it doesn’t require you to suddenly view everything they do through a diagnostic lens.

There is still room to simply be their parent.

You may feel more than one thing at the same time

There isn’t one correct emotional response to a diagnosis.

You may feel relieved because someone finally understands what you’ve been seeing.

You may feel afraid.

Confused.

Protective.

Overwhelmed.

Hopeful.

Angry.

Validated.

Exhausted.

You may feel completely fine during the appointment and cry in the car.

You may start researching immediately.

You may not want to read another thing about it for several days.

You may feel several of those things before lunch.

Give yourself permission not to organize all of those emotions into a perfect response.

This is new information about someone you love enormously.

You are allowed time to understand what it means.

Don’t let the internet hand you your child’s future

This is one I would emphasize heavily.

Because one of the first things many of us do is search.

You type in the diagnosis.

Then another phrase.

Then another.

And suddenly you’re reading everything from clinical information to someone’s worst day, someone’s greatest success, someone’s opinion about what you absolutely must do, and predictions about children you’ve never met.

At some point, information stops being information and becomes noise.

Your child is not a search result.

A diagnostic label can help professionals identify patterns and determine support needs. It cannot tell you every detail of the person your child will become.

Learn.

Ask questions.

Find credible information.

But leave room for your child to show you who they are.

You do not have to start everything this week

After a diagnosis, you may receive a list.

Evaluations.

Therapies.

School services.

Specialists.

Programs.

Insurance calls.

Forms.

Waitlists.

Resources.

More appointments.

It can create the feeling that there is suddenly a clock running and every moment you aren’t doing something is a moment you’re losing.

That pressure can become enormous.

Some things may need prompt attention. But not everything has to happen simultaneously.

Take the recommendations you received and begin separating them into:

• What needs attention now?
• What needs to happen soon?
• What can I learn more about before deciding?

A list feels different when everything isn’t marked urgent.

Start one place to keep everything

This is one of the simplest practical things you can do.

Create one home for the information.

It can be a binder.

A folder.

A digital folder.

A notes app.

Whatever you will actually use.

Keep copies of evaluations, recommendations, school information, therapy notes, insurance correspondence and questions you want to ask at future appointments.

And start a simple running note called:

Questions I Don’t Want to Forget.

You will think of questions at inconvenient times.

In the shower.

At midnight.

In the grocery store.

Three minutes after an appointment ends.

Write them down.

You don’t have to solve them when they arrive.

Learn the difference between a recommendation and a decision

You are going to receive advice.

Some of it will be incredibly helpful.

Some may not fit your child or your family.

And sometimes two knowledgeable people will recommend completely different things.

You can ask:

• Why are you recommending this?
• What is the goal?
• How will we know if it’s helping?
• What should I expect?
• Are there alternatives?
• What would happen if we waited?

You are not being difficult by wanting to understand the plan.

You are learning how to advocate.

And advocacy doesn’t require you to know everything.

Sometimes advocacy begins with:

“Can you explain that to me again?”

Watch your child, not only the paperwork

There can be so much attention on deficits in the beginning.

What your child isn’t doing.

What milestone hasn’t happened.

What skill needs support.

What score fell below a particular range.

Those things may be important for determining services.

But they aren’t the whole child.

Write down what your child loves too.

• What makes them laugh?
• What captures their attention?
• What are they surprisingly good at?
• What helps them settle?
• What frustrates them?
• How do they ask for help?
• How do they show affection?
• What environments seem comfortable?
• What makes communication easier?
• What makes it harder?

Professionals may become experts in certain areas of your child’s development.

But you are building another kind of expertise:

You are learning your child.

That knowledge matters too.

Protect some parts of childhood from becoming therapy

When you’re given goals to work on, it can be tempting to turn every part of the day into an opportunity for progress.

Breakfast becomes language practice.

Getting dressed becomes occupational therapy practice.

Play becomes skill building.

The grocery store becomes a lesson.

Dinner becomes another opportunity to prompt conversation.

And suddenly everyone is working all the time.

There absolutely can be wonderful opportunities to support development naturally throughout the day.

But your child also deserves moments when nobody is measuring anything.

Play that is simply play.

A show that is simply funny.

A car ride where nothing is being practiced.

A hug without a goal attached.

And you deserve moments when you get to be Mom or Dad, not the coordinator of an entire developmental program.

Choose your people carefully

You don’t have to explain your child’s diagnosis to everyone.

You don’t have to answer every question.

And you don’t have to accept every opinion simply because someone loves your family.

People may say things like:

• “He’ll grow out of it.”
• “She doesn’t look autistic.”
• “Kids develop at different speeds.”
• “You should try…”

Often, people are trying to reassure you.

But reassurance isn’t always what you need.

Sometimes you need someone who can sit beside you and say:

“I don’t know exactly what this will look like, but you don’t have to figure it out alone.”

Find those people.

By day 30, you do not need a five-year plan

If the first month has passed and you still don’t understand everything, you haven’t failed.

You probably won’t understand everything six months from now either.

I certainly didn’t.

What you can have is a beginning.

Maybe you’ve scheduled the next evaluation.

Maybe you’ve contacted the school.

Maybe you’ve learned three new terms.

Maybe you’ve found one professional you trust.

Maybe you’ve discovered something that helps your child communicate.

Maybe you’ve stopped blaming yourself for something you didn’t understand before.

Maybe you’re simply less afraid of the word that felt enormous 30 days ago.

Those things count.

What I would tell the parent I was then

I would tell her:

You don’t need to become an expert tonight.

You don’t need to predict his future.

You don’t need to compare him to every other child.

You don’t need to fill every quiet moment with words because you’re afraid you didn’t talk enough before.

You don’t need to make every decision immediately.

Ask questions.

Keep the paperwork.

Learn the systems.

Find good people.

Pay attention to your child.

Give him room to surprise you.

And give yourself permission to learn alongside him.

There will be things you understand later that you wish you had known earlier.

That’s parenting.

A diagnosis doesn’t change that.

It simply means you’re learning your particular child in a way you hadn’t expected.

Thirty days isn’t enough time to know the whole road. It’s enough time to take the first few steps.