Living with ASD

I think its way past time that I had a self-pitying rant in which I bemoan my lot and generally indulge the more challenging aspects of my personality.

There’s a good chance this will include foul language so be warned.

Do you know what its like to live with a 4 year old with ASD? If you’ve ever had kids then there’s a fair chance that you do. Remember that awful, exhausting, emotionally scarring period after they were born? You know- when they woke every four hours at all hours of the day and night and they screamed until you worked out by a process of elimination what the fucking problem was? Lasted about 6-8 weeks right?

Well, when you’re the parent of an ASD child you can extend that period from 6 – 8 weeks to about 5 years. Do you remember how utterly wrung out you were? It felt like just getting out of bed was a major chore didn’t it? Going to work was a living nightmare as people expected you to be diligent and work hard- bastards! Now imagine how it would feel if you had that head swimming, muscle aching, bewildering period go on for years.

Not nice eh?

If you haven’t had kids then you’ll have less of an idea. There must however have been a period or time in your life when you were so exhausted that even your thought processes seemed to want to have a lie down. Thats how having a child makes you feel for 6-8 weeks. Now read the above paragraphs again.

This prolonged period of sleepless hell has, I’m sure, resulted in me curtailing my career to a large extent as Naomi and I simply have to take things with Megan in shifts. After nearly 4 years, if we didn’t then one of us would’ve collapsed.

Here’s an small example of our nights.

8.30pm Megan finally drops after we give her some Valergan (this is a drug- no we’re not happy about drugging our daughter either but what the hell do you want us to do?).

We watch TV for half an hour and try to relax enough that we can unwind and (in Naomi’s case) collapse into bed about 9ish or (in my case) jump on the PC and knock out some design work till around midnight.

12.30am. Megan wakes up screaming. She’s had a nightmare- probably because I shouted at her before she went to bed as she was eating bloody play dough again. Megan doesn’t communicate well so the concpet of ‘its only a dream’ that you could happily sit down and explain to any other child doesn’t wash with Megan as she has no idea what a dream is. SO, we have to wait it out- she’s really upset and cries (real upset, frightened crying) for about an hour- all this time we’re trying our best to calm her down and settle her as she screams, terrified.

1.30am she calms down enough that I can go to bed satisifed that she’s OK. Naomi sits up with her.

About 3am she droops and Naomi takes her back to bed but Megs doesn’t settle and Naomi has to lie in her room with her until 4am, whereupon she finally goes back to sleep.

7am she wakes again and I get her up and watch her.

And thats one of our fairly typical nights. Distressing and exhausting. We love our daughter and do not resent her one bit but sometimes we wish that either the world was more understanding of parents in this position and would cut us some financial slack- enough that we could both look after her properly or that someone somewher would invent a harmless, assured way of getting Megs to sleep every night- Hell, just a couple of nights a week would be better.

Rant over.