Learning to adapt with a disability: parenting, perseverance, and positivity

Amy Pink, Programme Manager, spoke to us about balancing work with a disability, family, and health concerns, showcasing how adaptability and community can turn challenges into triumphs.

Can you start by describing your family set up?

I have been married to my husband, Tony, for two years and I have a six-year-old son called Blake who I share with a previous partner. Blake stays with his dad every other weekend and we’re flexible over the holidays. Tony has two grown-up children and four grandchildren – safe to say there’s an open-door family policy in our home!

Could you share some insights about your disability?

I was diagnosed with a lung condition called sarcoidosis two and half years ago, following a sudden onset of symptoms. Sarcoidosis is a condition that develops when cells in your immune system form lumps, called granulomas, in the body's organs. Symptoms began during the height of covid so as you can imagine, it was a scary experiencing being in hospital alone when covid was initially suspected.

My symptoms led to investigations where results found some shadows on my lungs, so a biopsy was then taken to find out the cause. I was relieved when results confirmed it was not cancer, but I was unaware of the lifelong impact of sarcoidosis. This led me to being referred to the care of interstitial lung disease specialists where I would then attend regular reviews every four months.

Symptoms I tend to deal with fluctuate but consist of aches and pains, brain fog, and breathlessness with activity. I take regular medication which is reviewed and often increased to help with the management of my condition. I attend chest physio and rehabilitation as well as regular lung function testing.

In addition to sarcoidosis, I have another health condition called fibromyalgia which I have started taking medication for, to support with symptoms such as fatigue, aches and pains.

How do you explain your disability to your son, and do you feel your disability influenced your children’s perspectives on diversity and inclusion?

There hasn’t been a sit-down conversation, but I have told him mummy has poorly lungs, and mummy’s body hurts. There was a change straight away for Blake as he was aware of the initial hospital visit and has since seen me in pain. I try to hide it as best as I can but at times I am doubled over. What I have found useful to describe how I’m feeling is to use the ‘Spoon Theory’. We all start with 12 spoons per day and some activities, or difficult days, will use more spoons.

There have also been times when he says to me ‘Mummy can you remember when you used to play football with me’. It can be sad to hear but I have explained I cannot do those things as much anymore because of my health. We tend to replace some of those physical games with other activities like crafting which he enjoys.

His awareness of disability is great, he attends a school where he has been known to say things like ‘it doesn’t matter as long as you’re kind’ and that makes me really proud.

What does a typical work and school day look like for you?

My husband took early retirement which means he can be home a lot more for me and Blake. For example, he will do the school runs on my office days which are Tuesday and Thursdays. I work from home Monday, Wednesday and Fridays between 9am-3pm so I can be around for Blake before and after school.

I find office days are more draining due to exerting myself for longer periods, I often feel spent by the end of day. To be as best prepared as I can, we make sure to have some meal preparation done and Blake enjoys movies in mummy’s bed. My mum is also a fantastic help, she picks Blake up one day per week or has him for a sleepover which is really appreciated.

How do you find juggling both working and being a parent and do you have a support system?

Tony is a really good support system but out of that, it is a challenge. I also have a small group of long-term friends who have been around from the start and were happy to come to me and been understanding when I need to cancel or change plans. I’ve learnt to adapt play dates to things I can easily do, for example, swapping soft play to and play dates at home.

Flexible working has been life changing and fundamental to make working and parenting work. Setting boundaries also helps when switching from home to work and back again.

Are there any resources, organisations, or groups that have been particularly helpful for you both in and out of work?

I am on the steering committee for the adaptABILITY network at E.ON. I like being able to give back to invisible illnesses which has impacted on me as a person and to help with supporting others, such as my team.

There is a support group for sarcoidosis which I can attend. However, I don’t always get the benefit from these difficult discussions as I like to be optimistic.

My consultant has been a huge support as I really value his expertise. He has been able to help me with understanding the condition and supporting with a treatment plan to manage the symptoms that impact on my day-to-day life.

What do you find most challenging parenting with a disability?

All parents experience mum guilt at some stage or another. For me it links into my physical ability and mental capacity to do things with Blake that I want to, but sometimes can’t. Recently we went to Twin Lakes, and I struggled with taking a back seat. I also struggle with the idea of walking aids. I have learnt to plan and research facilities, make use of my disabled badge, benches and taking additional medications to manage symptoms. I like to make sure I am with someone else, so Blake doesn’t miss out and I can rest when needed.

What strengths do you feel your disability brings to your role as a parent?

My disability teaches Blake about diversity and inclusion and it means he has better onset of understanding. I remember a time when we were in a restaurant and there was a family sitting next to us with a child who had additional needs who was having a meltdown. Blake didn’t bat an eye and just continued with his day. My husband and I both spoke about it after, how it was an incredible turning point – he just understands we’re not all the same and everyone has their own battles. It makes me proud being able to teach him about disability and the impact this has on him, to see how he accepts others with kindness.

What do you do to unwind or get some respite?

Prior to illness, I used to enjoy going to the gym. Physically, I am unable to do the same but what I have learnt is to adapt activities. Tony and I enjoy simply taking a drive and picking up a hot drink. I also have a summer house where I love going to hang out. I love to go on holidays where I can switch off and join everyone else that is slowing down in life, sitting down and relaxing with family.

What advice would you give to other parents with disabilities who are just starting their parenting journey?

Be open, honest and realistic!

I grieved the person I previously was but with support and changing my mindset, I now focus on what I can do, rather than what I can’t.

Empowering parents through adaptABILITY at E.ON

Parenting with a disability may have its obstacles, but it also offers invaluable lessons in strength, empathy, and perseverance. E.ON’s adaptABILITY network is a beacon for employees, fostering an environment where diversity is embraced and stories of resilience are celebrated.

By building awareness and supporting one another, we can create a workplace and community that uplifts every individual’s journey. Together, through understanding and adaptability, we can empower ourselves and those around us to not only face challenges but to thrive.