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Complex Needs & More

Complex medical needs often go hand-in-hand with neurodivergence or a learning disability. And neurodivergence can often come with co-occurring physical or mental health conditions – whether that's due to a genetic predisposition or to the stresses of living in a world set up for neurotypical people. All of which means, when something is wrong, it can sometimes be tricky working out what exactly it is – particularly when our child doesn't use words to communicate, and we have to tune in to their other forms of communication to try and help.

My son Benjamin spent a lot of time in and out of hospital for a variety of reasons: chest infections, seizures, feeding difficulties, surgery. One thing we often noticed, even if he was well when he went into hospital (perhaps for a planned surgery), he would start to appear more unwell the longer we stayed:

  • He would get hot.

  • His dystonia would increase, making his back arch and his limbs go stiff.

  • He would start refluxing his feeds more, sometimes causing him to aspirate them into his lungs with dangerous consequences.

Was he just picking up lots of infections in the hospital? Was it bad timing and he was already going down with something before we went in? Was he in pain somewhere and couldn't tell us where?

Eventually, we worked out it was probably sensory discomfort. Although it was often overshadowed by his medical needs, Benji clearly had some neurodivergent characteristics – he didn't like sudden changes (be that a holiday or a hospital stay), he hated noise and bustle, bright lights bothered him, and so did extremes of temperature … was it any wonder he couldn't stand being in hospital?

And being unable to tell us in any other way, all he could do – whether voluntarily or involuntarily - was stiffen his little limbs and arch his back. Which of course pushed his feed up the wrong way and made him more and more uncomfortable!

The solution? Rather than keeping him in hospital for longer trying to find out what was wrong, we had to get the hell out of there as soon as we could (although convincing the medical staff of that was often another task altogether). The important point is, both his parents and his health professionals needed to learn not to overlook his sensory discomfort just because he had so many medical issues going on at the same time.

This 'diagnostic overshadowing' is actually really common. For instance, autistic children and young people may have mental health needs, but may actually be refused an appointment with CAHMS, because it's considered all part of their autism.

There's no easy answer to this – it's hard to untangle the complex web of medical and support needs our children may have. The best we can do is get to know our children as well as we can, listen to what they are trying to tell, or show us, and remember often it's parents and caregivers, not medical staff, that are the experts – we know our children best.

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