How To Juggle Full-Time Work And Caring For An Autistic Child.

As convenient as it is to work from home and save on high day-care fees, it’s not easy to work and look after children at the same time, autistic or not.

Balancing the demands of work and caring for a child or adult with special needs can be extremely difficult and can affect your overall well-being if you don’t have measures in place to support you.

My Story

As you may or may not already know, I have an autistic son and because of his autism, it was difficult to get him into a school, which I have already written about in this post My SEND 4 year old, so you can go ahead and check it out after for more details.

This meant he was at home with me while I was working and even after getting him into a school he could only go for two hours initially. Therefore, I had to organize meetings or work around this so I could pick him up.

The Initial Struggle

When my son started school, he had an incredibly hard time settling in because he was at home for most of his reception year.

Thus, the school struggled to manage his behaviour especially his one-to-one learning support assistant (LSA). I was told they had experience with SEN children, but from my observation they seemed ill-equipped.

Anyway, this then led to constant phone calls from the school while I was at work to pick him up and constant negative reports about his behaviour.

I remember the head of early years calling a meeting after a week to discuss whether this was the right environment for him, and I thought, “It’s only been a week and you’re already trying to get rid of him.”

As you can imagine, I was not impressed and told them to give him time as this was all new to him and he was used to being at home. I also had to remind them that he is autistic and non-verbal so his inability to communicate his needs is reflected in his behaviour instead.

Meanwhile at Work

At work, I was still getting used to the new role I was put in after returning from maternity leave, and I also helped with other tasks around diversity and inclusion. As the demands of work increased along with the constant negative reports from school, it all started to weigh on me.

I was at work worrying if the school would call and disrupt my work. I was anxious about meeting deadlines or attending meetings that I would have to leave if needed to take care of my son.

It got to the point where I didn’t even want to go into the office, because my mental health was starting to suffer. It was at this point, that I decided to do something about my work so that I could better manage my son’s school situation while working.

Three things that helped me and can help you.

1.Talk to your employer

Unlike me, don’t let things get really bad before you talk to your employer about your situation. When I plucked up the courage to speak to my manager, they were very understanding and tried to find out how they could help me manage work and my caring responsibilities better.

Among other  things, they allowed me to start and stop at different times, let me attend any appointments I needed to attend for my son without using my annual leave, allowed me to work from home full time so I can pick up my son and helped me get a carer’s passport to document my situation, and the measures put in place to help me so I didn’t have to repeat myself to a new supervisor.

This may not be the case in all cases because every employer is different, but I would advise you to still speak to your manager or their manager, or a mental health or carer’s officer if you have one. Whoever it is, they need to be able to support you in some way.

2. Do not take on more than you can handle.

Do not increase but reduce your workload if you can, because you’ll then have time for the things that need to be done concerning the person you are caring for without having to worry about meeting imminent deadlines or attending endless meetings.

Before my son started school, he had a routine at home that allowed me to take on more work. However, when he started school and was struggling,  I had to turn my attention and focus away from work to help him settle in and be there when he needed me.

I therefore reduced my workload by talking to the relevant colleagues and withdrawing from certain tasks and unnecessary meetings that I didn’t need to attend.

3. Look after your mental health.

Working full time while caring for an autistic child or a person with specific needs can be physically and mentally draining, so it’s extremely important that you look after your mental health or it will all fall apart.

My mental health really suffered when my son was struggling at school, and I was getting a negative report every day about his behaviour. I was being called to meetings to discuss special school, all because his LSA was incompetent to support him.

As a result, I was not in the right frame of mind to effectively carry out my work and quite frankly I didn’t want to do any work. So, it was important for my mental health to put some measures in place at work to manage my situation.

I even thought about getting signed off work. After all, your health is more important than work because you can’t work without it. So do what you need to do to stay sane, whether it’s taking time out to meditate, go for a walk, talk to someone, or take a holiday – I advise you to do it.

The progress

After implementing all these measures, I had more time to care for my son and my anxiety around work has decreased. My son’s LSA was changed, and his behaviour improved as he slowly got used to a routine he could follow. As such his hours at school have increased from two hours when he started to five hours.

A Little Encouragement

To all the working mums out there, especially those with neurodiverse children, I’d like to say kudos to you because it’s not easy to fight for your child all the time, even if we make it look that way.

So do what you have to do to make sure you are in the best of health to support your child and keep advocating for them, because you are all they have in systems that are failing to accommodate for their needs.

There are many mums walking the same path and overcoming similar challenges, whether they are at the same stage or a different one. We are all learning so that one day our courage will be the strength for those who come after us.

And with that, I will end it with this:

The path we pave through the challenges we face and the victories we win as we fight for our neurodiverse kids, will be the legacy we leave to future generations in the hope that things will be easier for them.