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What My Young Carer Daughter Teaches Me

What My Young Carer Daughter Teaches Me

We have two children; James, 16, Autistic, with Learning Difficulties and Epilepsy, I’ve written a lot about all that we learn about life through him; and Phoebe, 19, neurotypical and a young carer, this blog is all about what we learn from her.

The arrival of a second child into a family is almost always disruptive.

The first child has probably had a lot of things their own way in their life up to that point and suddenly there is competition for attention, praise and rewards.

Phoebe was 2½ when James was born, and it’s fair to say that she had been the centre of our universe during that time!

Recognising the challenges that she now faced, that any oldest child faces on the arrival of a sibling, lots of people remembered to make a fuss of Phoebe, to give her cards and presents, helping her not to feel overlooked or left out.

One of the cards that Phoebe received had some foam flowers on the front; she loved it and wanted to take it to her room with her when it was bedtime.

Several hours later she wandered into the lounge to declare “Daddy, I have a flower up my nose…”

Some investigation established that one of the foam flowers was now firmly stuck deep in her nostril, resulting in a nocturnal Saturday night trip to A&E, which was now filled with drunks that had got into fights, footballers who had tried to ‘run off’ their foot/ankle/knee injury and now realized it hadn’t worked, and a 2½ year old little girl with a flower up her nose!

After that unfortunate start, life for Phoebe got back into a regular pattern.

She became very attached to her young brother and enjoyed having him around.  When Phoebe was 5, James was diagnosed as Autistic and with Learning Difficulties; a difficult time for us as a family and one that we tried to protect Phoebe from as she had enough to deal with having recently started school.

Questioning

As both Phoebe and James grew up, however, it became more and more obvious to Phoebe that James was not like the brothers or sisters of her friends.

James didn’t talk, he didn’t respond to his name, he didn’t really play with Phoebe.

It would have been easy for Phoebe to have just become more distant from her brother, to ignore him, but instead she asked us questions, lots of questions…

“Why doesn’t James talk?”, “Why won’t he play with me?”, “He’s different to my friends’ brothers, why?”

Concern

As parents trying to come to terms with James’ diagnosis ourselves, it was hard to answer Phoebe’s questions, but we noticed that Phoebe wasn’t just asking from a place of being upset for herself about the differences she was noticing, it was out of concern for James.

Her love for James wasn’t dimmed by his differences, if anything it grew as her understanding of him grew.

She realized that James’ differences were hard for him too.

Caring

We noticed Phoebe becoming a caring, empathic girl, someone who always noticed when somebody else was upset, wanting to know what was wrong and looking for ways to help.

She became a staunch advocate for other children with additional needs too, standing up for them if others were mocking their disabilities, taking it personally if someone said unkind things about other disabled children, campaigning for equality for all.

Enquiring

Phoebe’s questions continued, became deeper.

She wanted to know more about Autism, about what it means to be Autistic.

She has an enquiring, inquisitive and searching mind, never resting until she has the answer to her questions, never settling for second best.

Supportive

She continues to care for James as well, looking out for his needs, learning a little sign language to help communicate with him better, sitting next to him at the dinner table and being the first to make sure he is using his cutlery, not his fingers, to eat, and making sure he asks for more, doesn’t just help himself from someone else’s plate!

Phoebe has always been happy to childmind James from the time when she was old enough, and even before then would tell us that she would tell the childminder what to do!

Selfless

The older James got, especially as puberty hit with all of the hormonal changes that brought, and then with the arrival of Epilepsy in 2017, there were many disruptive times.

Days when family plans suddenly changed, holidays that had to be cancelled, an increased focus on meeting James’ changing needs.

Phoebe has been magnificent throughout, always understanding, being selfless, still helping us to care for James.

Striving

Phoebe has learned not to settle for second best, but to strive for more.

She has shown this in the ways she has coped with setbacks in her own life, always emerging stronger and more determined.

She has shown this in her support for James too, always pushing him to do more for himself, and rightly calling us out when we do things for him that he is capable of doing.

For Christmas, Phoebe gave me a whisky glass with an inscription on it, a quote from one of my favourite historical figures, Winston Churchill, “My tastes are simple, I am easily satisfied with the best.”

Phoebe always strives for the best, for herself, for James, for our family; her gift to me is an excellent reminder of this.

Resilient

She might have chosen another of Churchill’s quotes, a quote which summarises how she has taught us so much, how her character has been formed in so many positive ways by her life with James and how this has rubbed off on the rest of us too.

How we’ve become more resilient as a family, supported by our wider family and many friends, as well as our faith…

Never give in. Never, never, never, never - in nothing, great or small, large or petty - never give in, except to convictions of honour and good sense.” Winston Churchill

Phoebe continues to inspire us…

She is in the process of setting up a small business to provide fiddle/fidget boxes to churches and schools to enable them to support children and young people with additional needs better… and she delights us every day in the ways that she has responded so positively to the ‘different’ life she has had so far as the sister of a boy with additional needs.

She’s come a long way from that little girl with a flower up her nose, and we are immensely proud of her!

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Mark Arnold

Meet Our Blogger

Mark heads up Urban Saints pioneering additional needs ministry programme and is co-founder of the ‘Additional Needs Alliance’, a learning and support community. He is a ‘Churches for All’ partner, a member of both the ‘Council for Disabled Children’ and the ‘Living Fully Network’, and serves on the executive for ‘Children Matter!’ Most importantly, he is dad to James, a 17-year-old Autistic boy with Learning Difficulties and Epilepsy.

View Mark’s Profile

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