Grief

Its coming up to that time of year again, the cold nip in the air, the falling leaves, the hot mist that comes from your breath in the morning, the darker nights and the chill to the quiet nights. For me all these feelings rise up like bile bringing with it the most painful memories that lead up to loosing my mum to that bastard cancer.  I was 22 years old and Grief would become a firm fixture in my life still to this very day 19 years later.

The thing with grief is, that it steals many things from you, it takes part of you, your happy, your carefree, your love, your future and Im sure it steals your mind sometimes too. It consumes your being, and your nights become long, and weepy. I have read a lot about grief, ( oh and it becomes an obsession too)and in particular the gurus that say; “feel it, let it go, let yourself be healed!” like its that easy. There’s so much talk actually about healing but no description of what healed looks like. There’s no talk about what grief looks like 10, 20, 30 years and tears on.  I will tell you what grief looks like, and all are perfectly normal, some days your stomach and chest hurt from the heavy weight of missing them, some days you can laugh at all the silly fun things you all shared together, some days Im a snappy little gobshite and all I want is a hug from my mum. Some days its having some fun family moments and for that moment actually forgetting breifly then feeling terrible you forgot, sometimes its crying deeply, snot drivelling mess, and sobs that sound unearthly.

Is that healed? I dont know, what does the illusive healed look like? I know that Im still here 19 years later, with children, jobs and husband, winging life and giving my children my all. Ive had successes and Ive had moments Ive been on the floor, is that healed? Ive thrived, Ive failed, Ive laughed, Ive cried, Ive shared sunrises and sunsets , smelt fresh coffee and felt so lucky Im alive. But Grief, it does steal so many things for sure, it steals your nerves, it makes you realise how fragile life is, sometimes to fragile, it leaves you trying to tread on a type rope between over anxiousness to carefree and feckless, its a difficult balance. It makes you feel vulnerable to needing to feel loved and good at stuff, because the person that gave you that unconditional love is no longer there.

So when someone says, let it go, have you healed?!, or, you need to grieve, tell them that you are just living with it best you can, that despite grief you are giving life your best, that trying is enough, you are enough, but most importantly be kind to yourself and remember to love, because we all need that for sure.

Miss you mum xx

Tourette Syndrome, Is sooo hilarious right?!

I have to start my saying that as a mum to a child with Tourette Syndrome, I have seen first hand that this is the most mocked Neurological disorder there is to date. Every bugger finds it funny or socially acceptable to laugh at it with no consequences. From those god awful memes, to comedians taking the mick out of it. Its not only the general public that jump onto the piss taking  bus of jokes but its mocked all over the place. Is it the lack of awareness that makes it so funny? I have to give a little information on this highly complex disorder, because Im just about running out of patience for ill informed muppets, after reading another article a few minutes ago blatantly  mocking the condition.

Did you know that some motor tics can leave you with ripped tendons, that your body twists and contorts so badly that you are in immense pain, did you know that some tics can cause self injury, sometimes they cause the person to punch themselves, throw cups and cooking utensils off their heads, punch the walls and smash their knuckles or fracture bones, hit and pound parts of their bodies until bruised.  They are so painful its not funny. Did you know that some of these types of motor tics can last hours causing essentially tic attacks that look like seizures, these last up to 8 hours. Can you imagine being so  incapacitated and in that much pain your crying for god to take you . Is it still funny? We haven’t even scratched the surface of Tourette Syndrome for some yet. Then of course theres the verbal tics, the constant, squealing, sentences and swearing known as Coprolalia is only found in roughly 10 percent of Tourette Syndrome, but non the less a real problem out and about socially . Imagine getting car chased because your obscene tics caused road rage. Imagine your childs face and fear of a group of men chasing you. Still funny is it? Imagine the teacher sending you out of the classroom everytime you said something you physically cannot stop? Imagine the shame, really try to imagine it.

Now lets move onto the co-morbidity’s that often occur with Tourette Syndrome

;

• Obsessive-compulsive behaviors or Obsessive-Compulsive Disorder (OCD)
• Attention Deficit Hyperactivity Disorder
• Mood disorders such as depression and Bipolar Disorder
• Non-OCD anxiety disorders.

Does all this still sound funny?  Im still only scratching the surface too. Im am past being polite now, when you see a child or adult making unusual noises and having unusual body movements, just treat them with respect, is that really too much to ask? These comedians, writers and ill informed eejits really must be mindful that at any time in their lives  any of them could end up with a disorder , their children, their siblings, they are not invincible, and neither is my child, he isn’t and shouldn’t be the butt of jokes. Tourette Syndrome isn’t funny, it is  painful and debilitating and these jokes in any form need to stop.

 

Autism, the only diagnosis people call Labels.

“Oh why would you want that label” says the parent and well meaning friend, or sometimes professional who hasn’t a child with Autism . Autism is the only diagnosis that people still haven’t taken seriously. Its still the only diagnosis that comes with a parenting course first. I wonder if we said the same for other medical disorders. “Oh you dont want that Diabetic label”, Oh why must you label the poor kid with Arthritis at such a young age?” “Here take a course on Bones first”. Ridiculous!

It doesn’t sound quite right then does it.  Let me start off by saying Autism is a diagnosis, it is a legitimate medical diagnosis often given after really extensive assessments, numerous head banging moments of desperate doctor pleads by the parents or adult them-self to assess, and hours of soul searching and guilt, because your often told why label them or yourself! arrrrrrrggggggghhhhh, *sips wine*

Having a diagnosis can often help (or should) in numerous ways, first and foremost it can make all those years of soul searching, feeling different and knowing that your gut feeling was in fact correct, for may Autistic adult friends it meant that they felt heard and validated. For many parents it meant it should *ha ha should* open up the doors for services. It means you are able to receive *if your head is hanging off* some benefits.  It means that you may be on the path for obtaining  some specialist schools/colleges . But mostly that it is a valid medical diagnosis not a feckin label! Labels are for jars, for sizes on clothing, Autism is not a label.

Next time you want to spout the label card, you had better run very quickly , for I dont take kindly for telling people twice.

Namaste. *hic*