Do you ever feel so weighed down that you want to stay in bed, pull the covers up over your head and go to sleep for days on end? That’s how I’ve been feeling lately. No spring in my step, no fancy in my footwork, no zing in my zippety-doo-dah. Not even a single Mo in my Jo.
You would think that with a lovely sunny day and daffodils in full bloom that I would be in a better frame of mind. But I’m not. This isn’t for sympathy. I just want to be happy.
When I started writing on my blog one of the first things I wanted to do was to try to help others understand what it is like living with Asperger’s Syndrome from both my daughter’s and my personal experiences.
This time last year she/we lurched from one crisis to another but the help that I frantically sought for her was, at best, wholly inadequate, at worst, damaging. My daughter suffered shutdowns which rendered her unable to leave her room for days on end. For her, it was destructive and dangerous. For me, it was hell.
When she was diagnosed in the June of 2011 I thought, hallelujah, now we can get help. Wrong, wrong, wrong. For the next two years, my daughter was failed miserably by those who we trusted to give the proper support. Discharged from the Asperger team for some unaccountable reason, she was assigned a social worker from the mental health department who made it clear he thought he could ‘fix’ her by talking to her.
An STR (Support, Time & Recovery) worker was sent to our home weekly for six weeks to ‘help’ my daughter with her severe social anxiety. This consisted of the STR worker reading to my daughter from a script about the cavemen and the fight or flight response. Much like a kindergarten teacher would read to a five year old.
My daughter, her thought processes overwhelming her such was her anger and humiliation but unable to express this vocally, retreated into non-communicative, silent-rage mode. She was depressed for days after.
When I asked the worker if she knew anything at all about Asperger’s Syndrome she said that she had once read a novel about it. When I took this up with my daughter’s social worker he, of course, defended his co-worker and accused me of shouting at him, threatening to put the phone down on me. I wasn’t and he didn’t.
All we wanted was for my daughter to be able to gain access to the proper channels providing resources and support, enabling her to move towards a more independent and personally fulfilling life. Just as any mother wants for all her children. She relies on me for everything and as her mum, of course I’m happy to provide this for her, we are a happy little family, a great team, but for her sake she needs to find her own way eventually.
To this end, as I battled my way on her behalf through the horrors of last year I was at last heard by the manager of the mental health department who helped me ‘fire’ the social worker and find a new, much improved one.
I also secured the referral back to the Asperger team that I had been asking for for six months and since the end of last August things have been steadily improving, with other more positive developments along the way. Baby steps but it’s better than crawling backwards.
I also have to make sure that my daughter’s medical needs are met. She hasn’t been well for a little while now and recent tests showed that she is severely deficient in Vitamin D. This doesn’t surprise me because she rarely goes outside (Vitamin D is known as ‘the sunshine vitamin’ because we need the sun on our skin to make it). Now she has to take supplements and I’m glad it was picked up but of course I’m concerned as to how long she may have had this.
So why share all this here, now? After all, despite all that has gone on before, there is much to be hopeful and optimistic about. I am not one to give up easily and I will never give up on my daughter. Yet, as I fight on I am left, today, yesterday, and many days before that in a very heavy state of mind.
The thing is I don’t ask for help when I need it. I do the one thing they say not to do; I withdraw from people. At such times I find it very difficult to keep in touch. Why? Because who wants to hear me drone on, really? Hubby listens but a man can only take so much…
But I want to forget about things. A couple of large glasses of wine while watching back-to-back episodes of The Walking Dead of an evening is a great fix but in the morning nothing has changed. Except that I’m the one feeling like a zombie.
When I tell my friends that I can’t face going out in a group, secretly I really want to. I want to feel energised, uplifted, cheered. I want to join in the gossip, the laughter, be involved and hear about their lives. But I keep away, silent in my sadness.
Then, when I hear from someone out of the blue it means the world. Nothing like hearing from a friend who asks, ‘How are you?’ and means it. Such a friend doesn’t roll their eyes and think, ‘Oh no, what now?’ if I reply, ‘Actually, now that you ask, I’m far from okay’.
I don’t want suggestions or advice or anything. Just that knowing smile and maybe even a hug to say, ‘I’m here for you, now let’s go out and have some fun!’
I found the real me, the one I know that’s still there, in this clip. And one day it’ll be Aspie D too. It might take a few beers but I’m confident she’ll do it. So c’mon. Let’s dance and be happy
‘A cheerful disposition is good for your health; gloom and doom leaves you bone-tired.’ Proverbs 17:22