Bringing up a child with additional needs

Posted 12 March 2015

Dannie is 27 and works as a midwife. She has one son, Joshua, and she talks about bringing up a child with additional needs.

Josh and me

I had Joshua three weeks before my eighteenth birthday. He was nine weeks premature and weighed 2lb 5oz. My parents lived in Southampton at the time and Josh and I lived in Leeds.

I left Josh’s dad when Josh was seven months old, after a history of violence that culminated in him head-butting me in the face. Josh and his dad had supervised contact afterwards until his dad stopped turning up about a year later. I recently contacted Josh’s dad to ask if he would like to build a relationship with Josh via phone contact. Josh has quite a negative self-image sometimes and I felt this may help him to develop more of a sense of self. I haven’t heard back.

Support of friends

I struggled when I became a single mum. I was devastated but also incredibly relieved to be single. I felt that I had regained an inner strength that I had lost throughout the relationship. Luckily I have the best friends a girl could ever need and they supported me a phenomenal amount. I lived on my friend’s sofa for about six months before I managed to get my own place.

As soon as I was settled I went back to work full-time. I was adamant Joshua would be brought up in an environment where work and ambition are normal and routine. I worked in the Courts Service for a couple of years before leaving to go to college and uni to start my midwifery training.

Putting things in perspective

Shortly after I moved into my house I discovered Josh’s dad had got another girl, aged 16, pregnant. When she was around five months pregnant he threw her out and her parents wouldn’t allow her to move back home.

I brought her home with me and she lived with Josh and me until her baby (Josh’s brother) was around six months old. I was with her when she delivered her baby and even cut his umbilical cord. This helped me to put things in perspective and to this day Josh is close to his brother, and his mother and I have a good relationship.

Josh’s needs

Joshua is a bit of a demon sometimes. He has ASD traits and has had deteriorating behaviour since he was in nursery. He can be angelic too – as long as it’s on his terms he will do anything for anyone. We are awaiting an official diagnosis but Josh is suspected to have PDA (Pathological Demand Avoidance) where he will obsessively and compulsively avoid demands upon him.

To some, it sounds as though it’s an “excuse for bad behaviour” but Josh can explode with absolutely no apparent trigger and keep going for seven hours. These aren’t just tantrums either, they’re seven hours of kicking me, screaming non-stop, hitting me, throwing things, using weapons against me and whoever else is about. He very rarely remembers what has happened in these explosions but can go in and out of them like a switch has been flicked.

How we manage

Josh requires constant supervision outside and close supervision indoors to ensure he isn’t endangering himself.  He has been run over three times and still runs out into roads without paying attention.
I manage Josh’s behaviour with some learned/developed strategies. I have very specific ways of speaking to him. I always address situations as a choice for him to select from. We avoid situations where I have to be out of the house with him without a second adult present.

Psychologically I am well supported through his school, and now have involvement from social services and CAMHS (child and adolescent mental health services). I have found a great deal of peace by discussing strategies and management of explosions with other parents of children with difficulties and helping them to develop their own methods too.

Working life

Doing my midwifery training and managing our home life wasn’t easy. Having no control over shifts, working ridiculous hours with ridiculous amounts of essays…it was HARD! Luckily Josh’s brother’s mum was able to help with childcare a lot and when she couldn’t have Josh I would have his brother so that they could play together whilst I did academic work.

Now that I’m qualified, finding the strength to go to work and face the stresses there, and managing to put my home life to one side whilst I support a family in their own momentous occasion, is a struggle sometimes. But seeing the joy on someone’s face makes it worthwhile and helps me find that strength.

Juggling act

Joshua would not be suitable for normal childcare providers, so I am entirely reliant on the good nature of my friends and family in providing childcare support. I have arranged with my employer for me to work permanent night shifts three nights per week so that Joshua can sleep at my mother’s those nights, I can take him to school on a morning and collect him after school then leave my mother to put him to bed again.

I wouldn’t describe it as a balancing act, more a juggling act and learning how to leap frog on the small delights and make the most of every single second of the day. I developed some strategies for making Josh feel more involved with things, such as we always have “date dreams” where we arrange at bedtime to meet somewhere such as the moon in our dreams and do silly things together. Just to maximise the fun times.

Coping with doubts

The hardest part of being a single parent for me is the constant doubt that what I’m doing is not the best for Josh. I can read and read about various management strategies, and I try to adapt them to Josh and how I know he responds to things, but I constantly wonder whether I’m doing it right and whether, if he had a different parent, he wouldn’t be like he is.

I adore being his mum though. The thought of how hard it is for him to deal with his meltdowns and explosions physically pains me. We have an amazing bond. I can tell his mood from his scent. The days where he runs up to me and announces he loves me are wonderful. Just the normal times, the memories we make every day.

A life of ambition

Juggling life with a child like Josh is hard, especially on my own. I do sometimes worry that I will never get my slice of happiness: the husband, the nice house with the nice pretty garden. I have just had seven weeks on sick from work with stress and anxiety due to a particularly nasty cycle from Josh. This obviously comes with financial implications.

However, I am proud that I’m giving Josh a life of ambition, education and work as normality. As an individual and not just as a mum, my proudest achievement is graduating uni with a first class degree. I have had some huge failures over the years – relationships that have gone wrong, hiccups with Josh such as putting him in a school that on paper was ok, but in practice wasn’t good for him. But I’ve always had the end result in mind and fought to get to it. I want Josh to know that doing what you set out to do is always an option.

For detailed step-by-step advice on everything from benefits and tax credits to childcare and your wellbeing, read our guide to separation.