UCD 2021: Helen’s story

This time last year we were hiding away shielding because of  Covid-19. Needless to say this last year has been one of the hardest not just not being able to see people but also health wise for my swan Steven. I have 2 children Chloe 20 and Steven who’s 17 and is my swan.

In the last year Steven left his secondary school with no end of year prom and was not able to do the big school production which he loved to do. Chloe is currently in college studying level 3 childcare with the ambition of becoming an early years teacher.

Steven has many health and special educational needs conditions. He suffers from ASD, ADHD, developmental verbal dyspraxia, dysfunctional breathing via his vocal cords, hyper mobility, dystonia, temporomandibular joints (TMJ), low immune system, reflux, migraines, bladder instability, sleeping difficulties and knee issues. These are just a few of his everyday issues. One of the issues he has with the dystonia is both his thumbs remain dislocated which requires splints on both hands to keep the thumbs in place. He also has issues with his jaws which is partly due to dystonia and TMJ which means his jaw dislocates either sideways or drops down; When this happens he has to have his jaw put back in place – one of the longest jaw dislocations was over six hours. He’s currently in a wheelchair after an operation on both of his knees in January this year.

I came across SWAN UK on a previous Undiagnosed Children’s Day via a friend’s Facebook page who I knew via an open university course I was doing.

When I first looked into SWAN UK I wasn’t to sure if we would fit in or even if they’d accept our application as to me we had diagnoses, however what I came to realise was that we had a lot of individual diagnosis but no overall diagnosis so we did belong as we still didn’t know what was actually wrong with Steven.

That was about seven or eight years ago and I never looked back. We finally had a place where we belonged and I didn’t feel alone. We may not all have the same issues or circumstances but we all still belong and you never feel alone. We all understand how we all feel, and understand what it’s like being a parent, carer or sibling with an undiagnosed child.

I found SWAN UK so helpful that I’ve now become a volunteer Parent Representative, which I really enjoy. I tend to do a lot of information stands at events where I get to meet prospective and current members. I get to use my experience working in customer service and being a parent of an undiagnosed child.

I also became known as Helen again, not just as Stevens mum.

As SWAN UK members we’ve been to events where we were able to go as a family and meet up with other members and enjoy a fun day out. A few years ago we went to a local theme park in Mansfield.

The support I receive from SWAN UK has helped me through some very bad patches with Steven but also personally. Not all our children have the same conditions but everyone understands, and is always there when you need someone. I’ve met some wonderful friends through SWAN UK.

This Undiagnosed Children’s Day I’m celebrating Steven and the fact we’ve survived the last 17 years and no matter what Steven is going through he always has a smile on his face – I couldn’t ask for any more.


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