Followers on our social media channels will know that Harry has really been suffering since he had a UTI (urinary tract infection) back in February. His autism means that communicating his discomfort is incredibly difficult and this has led to a series of distressing and prolonged meltdowns over the past few months. I have had to call an ambulance once and school have been tempted on occasion as well when Harry has been so distressed that he is almost physically sick. He’s currently awaiting further investigation and as I waited to see the first consultant recently, I was reflecting on just how fortunate we are in the UK to have the NHS (National Health Service) to cover the costs of all appointments and procedures.
A lot of my readers and followers are based in America and they will know only too well that the system over there is very different. Consultation and treatment comes at a cost and those without medical insurance can be left with huge bills in exchange for their health. I dread to think of the costs we would have accrued over the past few years with complex operations and endless appointments and the added stress that would have created. It’s hard enough to find the resources you require when your child has additional needs let alone be worrying about the additional cost!
Many of the other parents I chat with who have children on the autistic spectrum struggle with incontinence in their child. The national association for continence (NAFC) has written a great article with some excellent tips and advice on developing understanding and positive practices around toilet use. But what if that’s not enough? What happens if, as is common with so many families working with autism, all strategies have been attempted but either don’t work or don’t last for long because the issue is more than purely behavioural? Incontinence is a medical condition in itself and learning to manage it when a child has additional conditions can be really challenging. There are issues around communication, and socially appropriate behaviours. It can also be really stressful to find the most appropriate products to support children while they are young. Once they grow out of the typical size nappies (or diapers) it can be even more difficult to source and afford an alternative.
Aeroflow Urology is a U.S. company who supplies a wide range of incontinence supplies covered by Medicaid.They ship supplies monthly, in discreet packaging, direct to your home so you always have the supplies youneed and aren’t left with the stress of shopping for products which may not even be available on store shelves. They also check in regularly to check that the product still fits and suits the needs of the user. You can find out more about the criteria required and if you meet it on their website. The website also has a helpful article on managing incontinence in children with autism which I found really interesting.
As for Harry, I impatiently await his next appointment to start the process of further investigation and to discover or rule out a medical cause for his anxiety around toileting. There is something about the struggles around a basic bodily function that so many take for granted that really makes me sad as a mother and a human. The sooner the investigation can take place, the quicker I hope to have my happy boy back. Fingers crossed that’s very soon!
This post was written in collaboration with Aerflow. All views are my own.