A Morning Without Driving Her

9:05 a.m.

I was already back home.

Usually, at that hour, I would be driving Tonton to her day program.

But this day was different.

On November 2, a new arrangement began for supporting Tonton's weekday routine.

Her support worker, who had previously come only in the afternoons, would now come in the mornings as well.

And a transport service would take her to and from her day program.

The aim was for Tonton's day to run smoothly without me driving her there and back.

On the 16th of this month, I have a meeting with my employer about returning to work.

The company representative has told me that being able to confirm that Tonton's daily life can run smoothly while I am at work on weekdays would, in their view, be a necessary condition for my return.

So before that meeting, I want to see for myself that her current routine can work without me there.

This was the start of a new day, and a step toward that goal.

The night before, Rara Move, the transport service I had booked, left a voicemail.

They were confirming that they would begin coming the next day, as arranged.

There was another confirmation call at around 7:30 the following morning.

Then, at eight, the support worker arrived.

“Starting today, I'll be coming in the mornings, too,”

she told Tonton.

Tonton was still eating breakfast.

I handed over to the support worker, who took over helping her with her meal.

After breakfast came getting ready, checking her things, and leaving the house.

Until now, I had been the one thinking through each step as we went. From now on, I would be asking the support worker to take that on.

What needed to be done, and in what order?

How long did each step take?

What needed to be finished by what time so she could leave without rushing?

We worked through the routine together, checking those things as we went.

Once she was ready, we waited a little to get the timing right, then went outside.

The support worker locked the front door using the house key Tonton carries.

That, too, is an important part of making her routine work when I am not there.

When we stepped outside at nine, the transport service's car had already arrived.

We helped Tonton into the back seat, and the support worker signed the paperwork.

“I'll come back later, all right?”

the support worker said to Tonton.

Then the car set off.

The support worker and I watched her go, and I waved.

Tonton glanced at us, but she wasn't smiling.

“She looks nervous,”

the support worker said.

That was how she looked to me, too.

Her father and support worker were seeing her off, and someone else was driving her to her day program.

This had never happened before.

I thought it was only natural for her to feel nervous.

I said goodbye to the support worker and went back inside.

When I looked at the clock, it was only 9:05.

Usually, I would still be driving.

Thinking back, I had been taking her to and from school ever since kindergarten.

She was often in hospital during her kindergarten years and could rarely attend. But from kindergarten through elementary school and the high school division of her special needs school, whenever I was home, I drove her there and back almost every time.

Now, starting today, I would hardly need to drive her at all.

When I stopped to think about it, I realized what a big change that was.

Even after I was back home, thoughts of Tonton kept coming to me.

Had she arrived at her day program by now?

Had she managed to get out of the car all right?

Then came the afternoon.

By the time she was due home, it was raining.

Was she using an umbrella?

Was she wearing the raincoat I had put in her bag?

Those were the things on my mind.

About fifteen minutes before her expected arrival, I decided to go outside and wait.

The support worker arrived soon afterward.

Then, seven or eight minutes ahead of schedule, the car bringing Tonton home pulled up.

Tonton got out of the back seat still wearing her raincoat.

The support worker helped her out of the car.

Then she said to me,

“Tonton feels warm. Have you spoken to them about the heating?”

For Tonton, the temperature around her matters: it can affect how she feels physically.

When we had used the service in the summer, I had made a request about the air conditioning.

But I hadn't yet asked them not to turn the heating up too high in winter.

As it was the first day, I didn't say anything to the driver then. Once we were inside, I asked Tonton.

“Was it hot in the car?”

Tonton answered,

“It was cold.”

That was her reply.

I don't really know what the temperature in the car was like.

I decided to keep an eye on things over the next few trips and speak to them if necessary.

On the way home, too, the support worker signed the transport service's paperwork and unlocked the front door with Tonton's key.

Once we were inside, our usual afternoon routine began.

We opened the communication notebook to check how lunch and other things had gone at her day program.

That was when I told the support worker something I had been feeling for a while.

“Thank you for paying such close attention to Tonton and taking the time to understand her.”

The support worker replied,

“That's because you've told me so much about her. Little by little, I'm getting to know Tonton.”

That was what she said.

“It's twenty years of getting to know her,”

I replied.

After a short pause, more words came.

“Yes, that's it. It helps when we can spend time with Tonton together, and I can say, ‘When she does this, this is what it means.’ That's a quicker way to help someone understand, isn't it?”

As I spoke, I was thinking about group homes.

Could the people at a group home get to know Tonton little by little in the same way?

Her current support worker has now been to our home more than ten times.

They have shared meals, prepared dinner, and played games together.

Through those moments, she has gradually come to understand Tonton's reactions, what she enjoys, what she finds difficult, and what needs particular care.

Tonton has become very comfortable with her, too, and now turns to her for affection and reassurance.

I think that is why I could feel at ease leaving her in the support worker's care today.

But another support worker might not be able to do the same right from the start.

How could I help someone who doesn't yet know Tonton well to understand her?

I can write down the steps and hand them over.

I can explain what to do if she has a seizure, and how to help her eat.

But when you actually spend time with Tonton, there are things you only notice in the moment.

When you speak to her and she doesn't answer.

When she isn't getting on with her meal.

When she seems a little different from usual.

I find it difficult to explain what those things mean through words alone.

If we could watch Tonton together,

and I could say, “When this happens, this is what it means,”

perhaps there would be so much more I could help people understand.

That was what I was thinking.

Even if she moves into a group home, it would be difficult for the staff to understand everything about her from the beginning.

But if they spend time with her, perhaps a relationship like the one she has with her current support worker could gradually grow.

What could I do to help that happen?

My conversation with the support worker that day had started me thinking about that.

Afterward, as usual, I spent time in another room and left Tonton in the support worker's care.

The morning support, the journeys to and from her day program, and the afternoon support all went as planned.

For a first day, I think it went well.

Tonton's day had run smoothly without me driving her there and back.

It was only the first day, so there are still things we need to check.

Even so, I felt I could see a glimmer of hope for returning to work.

Perhaps I really could go back to work with this arrangement.

I began to feel that we had taken a real step forward.

At the same time, I was reminded that this works because there is someone I can trust to care for her.

Could we build that same sense of trust with the other people who will become part of her life?

The first day I no longer drove her there and back.

By 9:05 that morning, I was already home.

But it seems there is still so much to think about when it comes to Tonton's life in the years ahead.