No Country for the Disabled

Many of you know that my son Jono has scoliosis and kyphosis (and Asperger’s Syndrome). Many of you also know that he is now in such pain he can’t walk far or stand unaided for long periods of time. I asked the GP to refer him to Occupational Therapy Services. Over two months have passed and we’ve heard nothing so I phoned the O.T office in Markeivicz House who told me there is no record of a referral.┬áI contacted the GP surgery and they said they assumed he was referred but they can’t find a record of him being referred.

So it’s looking like he hasn’t been referred at all. Markievicz House tell me I can refer him myself but he has to go to the back of the waiting list. The last couple of months count for nothing because there’s no record of it. I didn’t even know you could refer someone yourself.

I went into the Citizens Information office three weeks ago and they said there was nothing they could do and I should contact my local TD. I’ve since found out there is a disability advocacy officer in the Citizens Information Centre. This person is away this week so I phoned the┬áNational Advocacy Service for People with Disabilities who tell me there is a 28 working day waiting list to be seen in Sligo….but they aren’t sure if there’s anything they can do anyway. I have to admit I got upset, I don’t usually cry but I did today. It was then suggested that perhaps I should go for counselling or phoned the Samaritans.

If I wasn’t angry enough about this whole situation I’m now bloody fuming about it. How dare someone suggest I need counselling. Am I not allowed to get upset when I see my son in so much pain?
Why wasn’t the referral sent to the OT?
Why does Jono go to back of the list even if the GP tells the dept. it was their mistake a referral wasn’t done.
Why is everything a bloody battle?

Jono was born in Ireland, one of the reasons we moved to Ireland was to have our family in a place that would offer them a better quality of life. We had no idea Jono would become disabled and we wouldn’t have him any other way but it’s awful seeing your son suffering and knowing there isn’t a thing you can do to help him. Yes I could buy him a very basic wheelchair but we tried one out and it isn’t really suitable. I’m not going down the crowdfunding route, I can’t deal with the negativity to be honest and I also don’t see why members of the public should bail out the HSE or mop of the mistakes of people not doing their jobs.

This afternoon Jono is upset because we are upset and angry and he can’t understand why, once again, he’s waiting. Much of his life has been spent on one waiting list or another. The 8 years suffering under the team in Sligo Hospital being told to take 2 panadol and lie down until we realised they couldn’t carry out the surgery anyway. The Crumlin Waiting list for the spinal rod fusion which finally happened in 2009, a good few years respite until the curve start again above the rods. On the waiting list for surgery again since April 2017. Waiting since January for pain management injections because somehow although he was being seen regularly and they really made a difference he’s now on the waiting list again.

Without our fantastic physio who told us this week that he believes another surgery will relieve the pain we would be lost. It seems that no one else in the health service gives a damn.

This is really no country for the disabled. Thanks for reading.

 

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Feeling Frustrated

I’m not sure if I told you but Jono had an x-ray a couple of weeks ago. As well as the scoliosis issues he now has facet arthropathy. I had no idea what this was but I do know, thanks google. So it’s time for me to start shouting again – why hasn’t he had pain numbing injections since January? Why are we still waiting for the OT to contact us? Why hasn’t he been seen by a consultant in over a year?

It’s so bloody frustrating and I can’t begin to imagine how Jono feels, but it’s no wonder he looks grey in the face. Maybe if he ever gets the treatment he needs he might be able to have some kind of life again. He couldn’t come out with us for Andy’s birthday because he wasn’t well enough so Lucy minded him. He can’t go to Dublin to see his friends anymore. It’s just a desperately sad situation that a 25 year old shouldn’t have to deal with.

Anyway it’s time for me to start rattling a few cages, I seem to be quite good at it as I’ve noticed recently. God help the poor people who have no one to speak up for them.

Back to waiting

If you are a regular reader of the blog you’ll know about my son Jono. He has scoliosis and kyphosis and had a spinal fusion surgery in 2009 when he was 16. He was great for a few years but has been in a lot of pain in recent years. It seems the spine is curving about the rods.

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World Autism Day

Today is World Autism Day. I don’t usually write about autism but I thought I’d share our story. Jono, my son, has Asperger’s Syndrome which is a milder autism spectrum disorder. Of course autism is one of the ‘hidden disabilities’ so people may not be aware.

Jono wasn’t diagnosed until he was 13 years old even though there were various signs – late to walk and talk, strict routines, not great at social interaction, motor skills and sensory issues, fixated on certain topics, over sensitive to noise, smells and situations and more.

We had thought for years that something wasn’t quite right but were fobbed off. The primary school told us Jono was just immature, the health care workers said because Jono was our first child we were overreacting. Others said it was because Lucy was a girl and therefore quicker at picking up things and that we shouldn’t compare.

Jono started secondary school – where there was a fantastic head teacher who knew straight away something was amiss. We knew for sure ourselves then because the new school threw him completely. Assessments were done and Asperger’s syndrome was diagnosed. Finally he got the supports he needed in school – although everything was a battle.

In those days there wasn’t really a whole lot of support for people with mild autism. It was either a main stream school or a school for children with special needs. To be honest none of them were suitable for Jono. Things seem to be changing now with a lot of schools having dedicated units for those with autism. Some of the shops have ‘quiet’ hours to make thing easier for shopping.

As I get older I’m convinced I’m somewhere on the spectrum myself and my dad certainly was – although not diagnosed. Some people might get a shock when they receive a diagnosis of Asperger’s but to be honest it doesn’t change who the person is. Jono is highly intelligent, has a fantastic memory, is amazing at planning trips, has a brilliant sense of humour and so much more.

If you are looking for help I’d recommend the books by Tony Attwood – so easy to read and answer so many questions.
Autism Ireland were of help too.
AsIAM is a new enough site but very informative.

Happy World Autism Day – I think I’ll have cake to celebrate.

Where I am now

I’m still buzzing from Monday and I’ve been quite reflective about it all. It’s been a real learning curve for me in a very good way. As you know depression hit me this year, the anxiety was always looming but the depression was a new thing.

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