Brendan Bjorn turns 16 later this year. Here in Ireland, that means many of his services will be transferred from paediatric care to adult care. Changing doctors. Changing, and even losing, services. I’ve been working the past few weeks trying to navigate the various systems to prepare for this change. It’s not going well so far. First of all, I can’t believe he’ll be 16 this year. In very straight up language, no one ever thought he’d live this long. I sure didn’t. And to be clear, there were a number of times he was close to leaving us.

Yet, here he is just down the hall from me.
My little boy who is now a young man. 

He’s the size of me now. His care has grown increasingly harder as he grows older, grows bigger, while also growing more fragile…and I grow older, too. I’m no Spring chicken at 54.

There’s another element to having a profoundly disabled child that doesn’t often get discussed. Maybe people don’t realise it. Maybe it’s taboo. But those of us who have been on this journey for this many years acknowledge it – as hard as it is to accept or even say:

Profoundly disabled adults don’t tug at the public heartstrings like the still cute, still little enough to sit in your lap profoundly disabled children do.

That’s also straight up language. It’s also true. And if you don’t agree with me, I’d challenge you to name a palliative care level charity helping profoundly disabled adults that gets the same public support as those that cater to children. There aren’t any, and as such, when becoming an adult, the family’s struggle becomes even harder.

There’s a reason I bring this up at this time and in such a blunt manner: Services for profoundly disabled adults, including teenagers like my son who are just entering the adult service world, are in even more dire need of reforms and improvements than those for the younger children. 

I learned last week that in-home nursing support was refused by HSE Primary Care for Brendan Bjorn. I am still awaiting an explanation as to why and when that decision was actually made, considering it was approximately a year ago the request was submitted yet I only got the answer last week.

Right. So I thought, private – I’ll try for some privately paid respite despite the cost of around €55 per hour. (Desperation and exhaustion lead one to such a decision). Maybe I could do a fundraiser as other families are very successfully doing for nursing care, despite me not wanting to ever do public fundraising again. (Yes, special needs families often resort to fundraisers to survive this journey)

Then the bad news: I learned yesterday that the one private nursing agency in my area which would provide in-home nursing respite for me (I had hired them once last year) is no longer providing private care in this way. They are only going with State funded contracts now. They also have a shortage of nurses, like the rest of the country.

So, no hope for in-home nursing help and/or respite. A 54 year old lone parent, full time carer with rheumatoid & osteo-arthritis and degenerative discs and there is no in-home nursing assistance. Some days I just sit here on my couch and think, this is really f*cked up. 

We in Ireland need to have a very serious look at our society.

Do we want to spend tax money on greyhound racing, or do we want disabled children waiting in pain to get the operations or special equipment they need?

Do we want to spend tax money on bailing out a disaster of a soccer organisation for the same amount that disability services just happen to be cut by, or do we want profoundly disabled adults to be able to have the humane care and appropriate services they desperately need?

Do we want politicians to be able to receive multiple, extraordinary pensions and for years longer than the public can, or do we want family carers (who save the same State €10 billion per year by caring at home for their disabled love ones) to have some help, some respite, a reprieve in care before they too are disabled, reaching retirement age with no financial security and no pension?

My cute little boy is fast becoming a young adult.

When services and supports are so lacking that you hope the years don’t turn into decades, you know that something is drastically wrong with the supports for the profoundly disabled members, and their families, of our society. 

This is one of those days and sit on my couch and think, this is really f*cked up.
And so it is.