If only I could be in two places at once

A quick look at the calendar: when are my weekdays off again? Could I schedule my child’s doctor’s appointment for one of those days so that I would not have to shorten my working day? Or perhaps a colleague could swap shifts with me?

This kind of scheduling puzzle is part of union representative Aile Colley’s everyday life. She works full-time as a sales assistant in a grocery store and, as the parent with whom her 12-year-old son primarily lives, she takes care of matters related to his special needs.

Her son has neuropsychiatric symptoms, including behavioural challenges. Over the years, the family has received various social welfare and family services.

— I spend a huge amount of time looking at the calendar and planning, Aile says.

Will I lose income?

By law, employees have the right to be absent from work for compelling family reasons or to take up to five working days of informal care leave per calendar year. However, this time off is often unpaid.

A parent of a child with special needs has to attend healthcare and social welfare appointments and meetings concerning their child during the day. Sometimes a teacher may also call in the middle of the day and ask the parent to pick up the child and take them home immediately.

In situations like these, Aile has been able to agree with her supervisor that she will make up the missed working hours later.

At Aile’s workplace, it is not possible to leave in the middle of the day to take care of personal matters and then return to the same shift. She has therefore arranged things such as her child’s therapy appointments for afternoons immediately after her early morning shifts.

— I have been lucky because I have not had to take unpaid leave. We have always managed to arrange things one way or another.

There are other parents of children with special needs at her workplace, and Aile receives peer support from them.

— We are one big family.

Aile hopes workplaces can create such an open atmosphere that a parent of a child with special needs feels able to talk about the flexibility they need already at the job interview.

— It will come up at some point anyway.

lexibility led to difficulties

Susanna’s typical morning begins with exhaustion. Eight-year-old Olavi and five-year-old Aliisa have once again slept poorly and woken up several times during the night. The morning routine is chaotic because their serious illness makes them hyperactive, and they need help with everything.

Both of Susanna’s children have a rare degenerative neurological disease that leads to disability and eventually death. Susanna, who works in a grocery store, and her children are not referred to by their real names because she does not want to compromise her children’s privacy or her own position at work.

Susanna works part-time and is also a caregiver for her children. Her spouse works shifts but is now allowed to work only morning shifts.

Susanna was also given flexibility in her working hours when her older child was diagnosed. However, the employer soon wanted to return to the previous arrangements.

— I was told that the flexibility was only meant to be temporary, to give me time to arrange things. But in our situation, this is not something that can simply be “arranged”.

It is not about convenience

With support from PAM’s chief union representative and occupational safety and health representative, Susanna explained to her employer why she is unable to work early mornings or evening shifts.

She suffers from chronic sleep deprivation, combined with constant emotional strain. Her children are prone to running off and have cognitive abilities below the typical level for their age, so they need constant supervision.

There is no time to recover after work either if a shift continues late into the evening. Over time, Susanna has even developed cardiac arrhythmias.

— Flexible working hours are not a matter of convenience for me. They are essential for managing my overall workload and maintaining my ability to work in this situation, Susanna emphasises.

She also reminded her employer of the sad reality that she and her children do not have unlimited time left together. Some children with the same diagnosis die in their teenage years.

— We do not know what our children’s situation will be in a few years. I want to enjoy their lives to the fullest now, while they are still living the best years they have.

A compromise provided a solution

The employer eventually agreed to continue the special work arrangements. As a compromise, however, Susanna’s daytime shifts were made slightly longer and moved a little later.

Susanna is relieved that she received help from the employee representatives.

— Otherwise, I would have been put in a very difficult position.

Susanna was left with the impression that the disagreement over working hours was caused by a misunderstanding when the flexible arrangements were originally agreed. The employer was also sorry about what had happened.

Overall, Susanna says, her employer has been very understanding.

— My supervisor has supported me. Things have worked out about as well as they possibly could, but both my employer and I have had to compromise a little.

In Susanna’s view, the best way for an employer to support the parent of a child with special needs is to listen and take concrete action.

— If I ask for something, I hope it will be considered and that people will try to understand that I did not choose this life.

In such a difficult life situation, work provides an important break.

— When I go to work, I can be somewhere where my children’s illness is not the focus. I am happy to talk about other things there.

Text: Minna Hotokka  

Pictures: Gettyimages