Friday, August 31, 2012

Autism, Up Close and Personal

I thought I had accepted my son's diagnosis of Autism.

Like, he's only been officially on the spectrum for five years now.  The best before date for grieving should have expired about four years ago, shouldn't it?

Would someone fill in the date already???

Then I weaned off my anti-depressants (I was very grown up and even consulted my GP, who woulda thunk it?) and discovered that grief was playing a very long, loooooong game of chess with me.
And I really, really hate chess.

I wrote a blog post during my phased withdrawal from my medication which I will never, ever, post.
Not unless I want my nearest and dearest to grab their nearest white coat, pin me down and inject me with happy juice.
I just went to a quiet hell, said "Hi" to the devil and got cosy with his dearest friends.

With much leaning on my husband's broad shoulders, I am mostly on the right side of Dante's Inferno, but I'm not so much taking taking each day as it comes, as each minute as it arises.
Sometimes it's just a matter of putting one foot in front of the other until the horrors pass.

My toasty new holiday home

Riding Autism bareback, without the cushion of serotonin boosters, has opened up a whole new delicious basket of nightmares.  Yum.
Looking at Autism dead in the eye, without soft focus or misty edges, is like looking at your reflection first thing in the morning, without the benefit of make-up or a comb.
It's not pretty, but it's real.

When the drugs were out, a tidal wave of pain, fear and powerlessness rushed in to fill the gap.

Will my son achieve his potential?
Who will love and cherish him when James and I are gone?
Will be left to fester in some hateful institution, being treated like an inmate in a prison?
Will I damage him permanently by inadvertently fucking something up now?
Will he be forgotten about, abused, neglected?

Pharmaceuticals may buffer the paralyzing fears, but I don't want to see Autism, or my son, down the lens of a long telescope.

Weirdly, there is a bright side of  psychological pain; the knowledge that I am engaging with reality, no matter how unpretty.

Protection from the fears that haunt our dreams is sometimes necessary to help us function through the darkness.  We have other people to care for and other responsibilities to shoulder, so often we have to shelve our grief until a later date, when we can give it our full attention (no matter how reluctantly).

Last week I started to see a therapist, which totally cracks me up.
The notion of a middle aged Irish woman in therapy is hilarious.
I'm in very real danger of  making her tea and inquiring if she's been to mass lately.
My big worry about seeing a counsellor was that I'd cry.  I mean, the embarrassment.
I needn't have worried, because before I even said "howya" the floodgates opened and I was a bulbous-nosed mess of snots and tears. It was like  admitting I like Jedward while baring my arse. Luckily, she was cool with that (the tears bit, obviously not with the Jedward bit), and even though it put the capital D into Difficult, it was a very healthy thing to do.

It's so good to know that the option of medication is there, but for the moment I'm going with poking my emotions with pointy sticks.
And I'm also safe in the knowledge that, having been in labour three times, good stuff comes after the pain.



  1. Oh Jean, a heart wrenching, soul baring blog.... You've posted all the questions I'm sure all of us Autie super mawwwms have asked ourselves at some stage since diagnosis of our lil kiddies. Big hugs to you and we'll keep those coffee dates alive for thrashing out the many more questions.....xxxxx

  2. Well done for getting off the happy juice and looking Satan in the eye. Somebody posted a question on fb about anti-depressants and I was amazed how many of the autism mammies are on them.
    And yes, the best thing about life is that when the pendulum is at its lowest point it has to swing back up.

  3. Very brave blog from a equally brave woman, searingly honest and not sugar coated, I hope you find peace on your journey xxx

  4. Oh I don't like pointy sticks one bit but I hope things go well with the therapist xx

  5. I am only coping with it all because of my serotonin fix, I know it for a fact. Will I be able to cope one day without them? At the moment, I don't think so... but then again I'm just 2 years into the diagnosis for Max, so I have at least another three to go, right?
    Those questions all go through my head on a regular basis as it is, but I try to put them to the back of my head.
    Adding my own would include:
    What about if/when Max is older and bigger and stronger I get to the point that I can't take care of him on my own anymore?
    What do I do if I take ill/need an operation for something/have to be somewhere that means I can't take care of him for more than a day or two?
    Will I ever find anyone who'd even want to join us on our journey through the autism minefield or will I continue to do it alone (though I know I'm not really, I have lots of support in other ways!)?

    *hugs* and great big pats on the back to you! You're doing great! xx

  6. Very brave and lovely post Jean! I can relate to very much to how depressing the whole thing can be at times. I have all of the same horrible worries that you have. And I guess the only thing you can do is find that tiny bit of happy in every day and just carry on. Well done in getting off the meds, not easy I am sure. Thanks for writing this.

  7. Very brave post indeed. I am still on my antidepressant and I've been to therapy for years.

    Why did you decide to go off the antidepressant? I have found that both therapy and the medication are effective for me. But I recently asked my therapist the same question. When will I GET OVER IT already and move on?

    When my son no longer has autism, then I think I'll get over it. Until then, it's antidepressant, therapy, wine and writing.

  8. It sounds terrible Jean. I have endless admiration for the way you face everything that life has thrown at you. It is fantasitc that you now feel able to let go of the drugs and face up to the grief that has been simmering for so long. I really hope that it gives you the peace of mind that you so richly deserve. xxx

  9. Im taking a mild anti depressant for two years. It helps but i want off them. I want to try feeling normal on my own for a bit! I wonder if two and a half years is a very long time to be on them? Its nice know im not the only one who has used them through the diagnostic process. Dreading coming off but really want to try! Thanks for that blog jean it was so good to read:-)

  10. Hi Michelle, thanks for dropping by. Lots of people very happily take ADs long-term, so its horses for courses really. Its not "weakness", its whatever works for you.
    If you want to try life without them, please go to your GP first (altho be careful, some will tell you to take them on alternate days, which is the worst possible thing you can puts you into a serotonin crash every other day). Mostly, you will need to do a slow wean, which may involve splitting tablets. Lots of people come off them without any issues at all, but some people really go to hell. I would suggest having your other half/ a pal/ a sister on board to keep an eye on you too. And if you need to go back on em, well at least you tried. Hope it all works out for you XXX

  11. Oh Jean, I am so sorry. I know exactly what you are going through. Hang in there girl. xx

  12. How did i miss this? perfectly written and gut wrenching to read. It's not the life we would have chosen, but for some reason it seems to have chosen us. Coffee sooooooon!!!!!!! Love ya xxx

  13. I missed this too. So brave, enlightening and downright funny in places! I do hope the humour you inject into your posts, especially soul baring ones like this, helps you somewhat. Good for you doing therapy. Now you have two therapies...the real one and blogging;-) I hope all works out for you Jean.

    ((xx)) Jazzy

  14. Well done Jean. I feel so lucky to be chemically hyper-optimistic, but I know it is just luck and that it would be equally possible to need some help with the neuro-receptors if it ever went the other way. However, cannot stress enough the importance of finding someone to talk to, and through stuff. Complimentary therapy if you like. We should not be afraid or embarrassed to take anti-Ds but the doctors prescribing should take a whole patient view and look at the practicalities of getting real support to that person.

  15. Hey Jean...what a heartfelt, and intimate post. I don't know what it's like, not having a child with special needs (ok I have my brother but it's different for mothers I imagine) but I think you're doing well to face up to your struggles. And hey, we have a crazy awesome community here to talk to, which should help ease the burden. *hugs*