Warrior to worrier: When an SEN mum drops the ball

I was supposed to write a post today about an aspect of the SEN reforms, but as I haven't managed to read the document published about it yet, that would be a little difficult. I could skim read it and make it up and perhaps no one would notice. But even the concentration required for skim reading is a bit much to do at the moment.

As you may recall, I became ill a year ago that was eventually diagnosed as Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia and Chronic Pain. You might have imagined I'd have had some proper treatment for it by now but that isn't the case.

I am on a waiting list for rehab that, I have just learned, is 22 months long. It's so long, they've closed the list. I had thought it was six months long so this discovery has been very depressing and has really given me a knock because usually day-to-day, I'm quite cheerful.

I am also on a waiting list for autonomic testing that is equally as long, just for an initial appointment. This is because it's a rare condition and therefore the specialists are few and far between. And so I wait and daily deteriorate just a little bit. Writing posts gets more difficult and working for actual money is a virtual impossibility because the fatigue makes me flaky and unreliable.

Luckily, I have managed to locally access an NHS OT and a Community Physio who have been wonderful, while tomorrow a horribly expensive adjustable Sensapaedic bed is arriving that my in-laws have kindly funded.

I'm speaking at MumsNet BlogFest in a few weeks among such a stellar line up, I keep thinking the wonderful ladies at MumsNet must have been a couple of jars in when they thought of me. Lionel Shriver! Jo Brand! Jon Ronson! Tanya Byron! Me! (sorry, who?)

If you're going, I'll be easy to spot if you're under five feet tall, because I'll be the one in the wheelchair with my marvellous SNJ partner Debs, gamely enlisted to push me about. She gets to come free as my carer, but at a cost of being permanently attached to a grumbling, bossy old harpy who will be constantly telling her she's been parked in the wrong place.

But that's not the worst bit about this damn illness. The worst part is that it's genetic and it's not just me in our house who is affected.

Youngest is home in bed today as he is adjusting to his new beta-blockers to help him cope with his own POTS. As well as finding his way through his adolescent years with Asperger's, he now has to cope with chronic illness, pain and frequent dizziness as well.

Look what a gift I gave my son! It kills me and because I'm also ill, it is doubly difficult to make sure that he gets the treatment he needs. He's waiting for hydrotherapy and podiatry, at the same time as he's deep in puberty and starting his GCSEs.

I've always been a warrior where my kids are concerned. Their diagnoses, statement, school, therapies, have all been as a result of me driving forward with a determination that they get what they need.

I'm frightened that this illness will mean I'll drop the ball. That I'll miss something going wrong until it's too late. I've already surrendered the housework and washing to my husband. Now he's even making dinners and Youngest's school lunches. He's supposed to have school dinners but vomiting after eating (possibly gastroparesis) means he needs to eat little and often.

One of the reasons I brought in Debs and now our columnists was not only to make the site as good as possible but also to lighten my writing load. The site is now much more than just me and that's a good thing.

So I will get around to my SEN reform post when I've got the energy but I thought a little explanation of things was in order (and let's face it, easier) to write. I have big plans for SNJ now we have our merry crew and we're always looking for more great writers who know what they're talking about through living or working it.

We have post ideas backed up into next year and we're also looking for sponsorship and advertising opportunities, so please get in touch 

Thanks for sticking with us.

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Tania Tirraoro

Founder, Co-Director at Special Needs Jungle

Founder of Special Needs Jungle. (She/Her) Parent of two young adults with autism. New grandma. Tania, who is autistic, is a leading SEND advisor, working with the Special Education Consortium, Ofsted, and Whole School SEND. She is also an Advisory Board member of the Royal Holloway, University of London Centre of Gene and Cell Therapy and an Editorial Board member of Springer Nature Gene Therapy journal.
Tania is an experienced broadcast and print journalist & author. She also runs a PR, web & social media consultancy, SocialOro Media.
Tania is a rare disease & chronic pain patient advocate with Ehlers Danlos syndrome.

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Latest posts by Tania Tirraoro (see all)

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