Sleep and its knock on effects

Life with ASD kids, whilst never the easiest of lifestyles is blghted mostly by that most evil of conditions: lack of sleep. When we got Megan diagnosed last year Naomi was exhausted as I was working which meant she had to look after Megan on her own all day and get up with her in the night as she (Megan) didn’t really sleep much at all for the first 3 years of her life.

Diagnosis brought the primary relief of being given Valleragn for Megan which we could give to her and which would help her sleep- she goes to bed about 8.30pm and gets up about 7am usually.

Naomi and I cherish the post-8.30pm time period as its the only time we can watch somethinbg adult on the TV, talk to each other without running around after Megan or just read a book with a glass of wine.

Unfortunately, over the last 4 days it seems Megan has adjusted to something (as she doesn’t talk its very hard to say what) and now screams whenever we try to take her to bed. Bedtime is getting slowly but inexorably pushed backwards. We’re now waiting for her to fall asleep then carry her up to bed- this usually happens by about 9.30-10.00pm by which time we’re both exhausted and don’t have the time or energy for each other. On two occassions (including last night) she’s also woken up early. 4.30am approximately. And, yet again unfortunately, she’s very attached to Naomi right now and screams if she’s not around.

I love my wife very much and am really worried about what this is doing to her. Apart from the sheer physical exhaustion of looking after Megan for approx 16 hours out of every 24, the mental strain is enormous- I’m constantly in awe of her ability to cope but I know it gets her down. I do what I can to alleviate the strain but as I’m at work, poor Naomi’s still right in the middle of it all day, every day.

We’re also finding it increasingly difficult to keep things together financially, last week for example, Naomi concussed herself and I had to take 4 days off unpaid to look after her and Megan- this creates a bad atmosphere at work and directly affects our finances. The end of this month is going to be difficult to say the least, we claim all the benefits we’re entitled to so can’t expect any more. Life’s a bit of a challenge at the moment.