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.

Son2 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.

Warrior Mum. Image: Lucas Torquato DeviantArt
Warrior Mum. Image: Lucas Torquato DeviantArt

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 Son2'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, CEO at Special Needs Jungle
Founder of Special Needs Jungle. Parent of two young adults with autism. Tania is a member of the Whole School SEND Expert Reference Group for SEND Leadership, the Ofsted SEND Inspections Stakeholders Group, and sits on the Advisory Board of the Royal Holloway, University of London Centre of Gene and Cell Therapy.
She is also an experienced broadcast and print journalist & author. Tania also runs a PR, web & social media consultancy, SocialOro Media. She is a Rare Disease & chronic pain patient advocate with Ehlers Danlos syndrome.
Tania Tirraoro
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So not only do you have the responsibility for you own family you feel the responsibilityfor your SNJ family. As with all good families we will support you and wish you only to look after yourself. You have helped so many find a way through a terrifying process. It is your turn to be supported. Take care x

Tilly B

Great big gentle hugs. Be kind to yourself, you are doing a great job. X

Darling Tania, we in the special needs world are so very grateful for all you do, the enormous energies you pour into explaining, building bridges, making real changes. You go above and beyond what any parents does, you do it for us all. Now you must take stock and reserve your energies, spend time researching ways to make your life a little easier. You won’t drop the ball, you are in a relay team now. Much love.

Bless you Tania – I know where you’re coming from, it’s such a nasty shock to realise that your body is not doing what you want it to do, even worse when you consider that your child has the same thing (we are currently going through genetic testing to see if there’s some sort of rogue clash of genes that explains what is going on with son1 & daughter2) – be kind to yourself and prioritise – I know from our own experience that GCSE time is the most stressful, I had to be there 100% for Son1 and that’s… Read more »

Oh Tania – you know that I completely ‘get it’, the EDS is so unpredictable and so cruel in how it makes us watch our children go through such pain and turmoil. Much love to you and your family x