Being a dad to a son with additional needs – guest post

17th January 2021 0 By Rachael Stray

James has kindly shared his experience of being a dad to a son with additional needs in my first guest post for 2021.

Being a dad to a son with additional needs

Joshua, our son was born at just less than 31 weeks. He has a twin brother Jacob, however sadly we lost him shortly after birth.

Joshua was born with a very rare skin condition called Erosive Vesicular Dermatosis and also Oesophageal Atresia (meaning he was unable to swallow).

He was immediately intubated whilst the doctor’s decided on the next course of action for him.

That next course of action was to be transferred to a more specialised Neonatal Intensive Care Unit and that was at St. Mary’s Hospital in Manchester.

At the beginning of our time there, Joshua was given a very poor prognosis of surviving.

In fact one Doctor gave him a zero percent chance of survival. We as parents were naturally devastated at hearing this, especially given what happened to Jacob.

Thankfully Joshua’s skin began to improve and he had operations to help him swallow and he became strong enough to leave the unit after exactly five months. Joshua was fed through a Gastrostomy for a fair while after coming home, even though he could swallow.

We gently encouraged him to eat ‘normally’ and whilst this took time, it was time we savoured as we never thought we would bear witness to it, given our experiences since he was born.

When Joshua was around two, we began noticing little things about his development that pointed towards Autism or some other underlying neurodevelopmental condition.

We have spoken at length with his paediatrician and she has put it down to him being premature and the time he spent in hospital.

However despite this, we eventually have been referred to a child psychologist to help with his behaviours.

More and more recently it’s been getting more tough to deal with.

I’m autistic myself and get overwhelmed quite quickly if I feel under pressure about anything and Joshua’s behaviour is certainly one of those things.

Joshua used to be an amazing sleeper, possibly due to getting his belly filled up over night through his gastrostomy, but now he’s going to sleep quite late and waking up really early.

He also has attachment difficulties and gets extremely distressed whenever Rebecca leaves the room, even for just two seconds.

It’s very difficult to manage, but now we are under psychology, hopefully we can have some answers, sooner rather than later.

Joshua ‘met’ his psychologist for the first time a few weeks ago via video call.

As she was observing him, she mentioned the possibility of hypermobility, this alongside our reported difficulties with his behaviour.

We’ve done a sensory questionnaire as well for us to explore Sensory Processing Disorder.

Also Joshua has issues with his blood clotting factors.

He had 12 transfusions when he was in Neonatal Intensive Care. This is still under investigation and we don’t know too much more about it just yet.

Another thing that Joshua has is nystagmus, this doesn’t necessarily affect his vision as such, he just has to tilt his head to either side when he’s focusing on something, this is because his pupils are constantly flickering, so he can’t focus to any great degree.

Joshua’s school has been great at giving him as much support as they can and we really cannot commend them enough.

Some of the issues we have though is that Joshua is totally different in school.

These differences are enough for our paediatrician to discredit us as parents and we always feel extremely belittled by her.

We have asked to change doctors and have a second opinion, this was refused, much to our dismay, but we are still fighting for answers so we can take our life forward and access the help and support we need in order to deal with how Joshua can be.

Though we have our challenges as a family, Joshua brings us a unique way of viewing the world, lots of laughs and smiles.

This helps ease the pain of losing his twin brother so much more, however we are always mindful that there should be two little boys making mischief, laughing and joking and going through life together.

We just have to get on with it and make the best of everything that comes our way.