My son Neil has trouble settling to sleep. When other children are tucked up in their beds at night, Neil is wide awake. It’s something I talked about before in this post.
His sleeping issues aren’t new. For as long as I can remember, he’s had trouble settling to sleep. As soon as he was old enough to stand up in his cot, he would scream and cry and put his hands down his throat to make himself sick, all just to get out of bed. I thought it was something I was doing wrong. I read every baby book, every blog, every piece of writing I could find on how to get my son to sleep. Nothing I tried worked, and I felt like a failure.
I know now that I wasn’t a failure, his sleeping issues were nothing to do with me, that it’s all down to his ASD. It’s hard to pinpoint the exact reason our son, or any child with ASD can’t sleep properly. It could be down to melatonin not being produced at the right time, or down to sensory overload. Maybe a combination of the two. All we knew is that something had to be done. Falling asleep at 2am and getting up again at 7am is not healthy. Imagine going to work on five hours sleep, it would be hell. So imagine how it must be to go to school everyday on five hours sleep, trying to learn and concentrate. It must have been tough on this little man.
I decided to visit the doctor and express our concerns. To be honest, I’m not sure why I hadn’t done so earlier. The doctor mentioned medication, but my husband and I had discussed it and felt we would rather try to resolve the issue without medication. The GP told us she would refer us to the paediatrician, and sent us on our way. A few weeks later, a lady from the ASD advisory service asking if we would like to be referred on to Barnardo’s, who run a sleep intervention program for children with autism.
Within a few hours, a lady from Barnardo’s got in touch, and explained a bit about what would happen. To begin the programme they would come out to the house for a two hour long interview to see exactly what Neil’s issues are. They would then go away and create a personalised programme, before returning and helping us put it in to place.
Before the first meeting, I was terrified. There’s something about a stranger taking a look in to your life that just puts you on edge. Or maybe that’s just me? I was worried that they were going to come in and judge me, because I wasn’t doing the sleep routine properly, because some nights for an easy life we let Neil watch TV to fall asleep. Thankfully, the two ladies who visited were lovely, and put my mind at ease about the whole thing. They spent two hours here, asking a lot of questions about Neil, his sleeping history, how we put him to sleep, any other issues we have. They then arranged to return two weeks later with our sleep programme.
They returned to us last week with our new programme, along with a lot of new visuals and schedules for Neil to use.
To try to facilitate Neil’s new sleeping routine, a stricter day time routine has been put in place. They have supplied us with all the things needed, including a special personalised Mario schedule, which Neil thinks is great. The bedtime sequence is quite strict, we have to do everything the same each night, so Neil knows exactly what will happen and when. His bedtime has been pushed back, but screen time is now limited.
We will be spending the next 6 weeks putting this new sleep programme in to place, and hopefully it helps Neil to settle in his bed better.
I will be charting our progress on the blog, so please check back for regular updates!