Emily is 16 today and I hope she’s having a lovely birthday.
This may seem an odd thing to write about your own child but she’s not at home, because she went to live in a residential school in November.
The reasons for this are many and various and can be found here if you want to read them.
With the news allied as it is to Alzheimers which is why my mum is no longer here and also missing Emily because of Autism I’m really pissed off with disability today.
When your child is diagnosed with a disability you are encouraged to grieve. I don’t subscribe to that notion anymore. I was never comfortable with it but when it’s everywhere it’s hard to ignore and also when people offer sympathy when you tell them the news of diagnosis it’s quite rude to challenge.
Diagnosis of autism often follows a neurotypical start in life so as your child begins to retreat from the world, from the mainstream and into challenging behaviours, you spend most of your time baffled and exhausted so it’s understandable to feel pain.
For me though I felt a burning fury that irrespective of the pain I felt my children felt it a 1000 times more as they battled to find their place in a world built literally and figuratively for the many not the few. Accessibility for many non-disabled people, if they ever consider it at all, runs mainly to ramps and lifts, disabled parking and infrequent addition of subtitles.
This is the peak of a huge disenfranchising iceberg which is now sadly comprised increasngly of ever hardening hearts, more frequent hate crime and a notion of scroungers as the majority not the factually accurate few.
The encouragement to grieve I therefore understand but think it plays to an agenda of imperfection, of less than, of otherness, which means that disabled people like my daughters make a start at life from an disadvantaged standpoint.
In the 12 years since Emily was diagnosed I’d resigned grief at diagnosis to yet another confusing element of ability normative attitudes.
Then Mum died. Alzheimers is a long and painful goodbye. Painful for the person and painful for the people ,who love them. Because I over think everything I’d often consider the notion of love and realise that for so many people love has to be a symbiotic reciprocal arrangement. Once it stops flowing from the person you love it’s sometimes too painful to continue to see them.
I never felt that. I felt anger at the theft of my Mum by Alzheimers I felt pressured and exhausted and challenged but irrespective of whether she knew me as her daughter or believed me to be her mother taking my hand and asking to go for a walk when I visited, there was a light in her eye when she saw me which made me know that she trusted me. There was also her smile.
I’m grieving Emily today too. Again society has it’s cunning little response to this. It berates “people like me” as abandoners.
I’m not supposed to feel sad because as a monster mother who abandoned her daughter I deserve everything I get. Or so I’ve been told online.
Well pull up a chair and lets look at the facts-You don’t know what you’re talking about but do keep it up because that’s enormously helpful to everyone.
Another fact which people forget in their rush to blame carers like me, is that learning disabled people tend not to have parents with eternal life spans. Keeping your children close may keep you safe but what happens when you die and the only environment your child has ever encountered is gone. They must then sometimes in their fifties and sixties have to make the move into adult residential care which should have taken place decades before.
I always knew I wasn’t going to allow that to happen to Emily, I always wanted her to move into an adult assisted living unit, I just hadn’t expected it to happen when it did.
The thing is irrespective of intellectualising it irrespective of the reason and facts and the danger, which prompted her move, I’m broken hearted.
Emily on the other hand is thriving. She’s in school fulltime, she has a best friend, she’s healthy and she accesses the community for swimming and horse riding and youth club and everything that a 16 year old should be doing.
We offered all of this of course, but she didn’t want to leave the house.
At school they’re all participating so she doesn’t even question it.
As long as she’s happy we’re happy. But today along with Christmas my heart hurts and the rationale of everything else is just no match for the pain.
We’ll see her later for her party and so from that perspective it’s an odd form of grief but grief it still is. Six months on it’s no better it’s just familiar.
Ultimately whether your child has a disability or not, society should really preserve it’s judgment for those parents who won’t let go of their children, or won’t confront their own need for perfection over acceptance when in fact, the life you are controlling is not yours to dictate.
Regardless of the depths of our fears for them, regardless of their ability or disability; as parents it’s crucial to remember we only borrow our children, after all.