This is an older picture – before my son figured out how to climb up the curtains and windows to reach previously unreachable spots on the wall. Let’s just say that our house usually looks disgusting and I no longer encourage visitors – I am too ashamed at the mess they have to navigate just to make it in the front door.

The thought of having therapists come in is a nightmare (not that we do as we can’t afford therapy), and thankfully we don’t have any friends so don’t have to worry about how our house looks to the uninitiated.

Needless to say, my son’s sensory needs are at complete odds with my own…

Sleep is one topic that most people seem to be aware of, in relation to Autism Awareness. Go to any Autism parenting site, Autism Support website or Autism magazine, and you will find people talking about how to get their child to sleep. Practitioners are all too aware that children with Autism will often not sleep, and will usually give you all sorts of advice as to how to help your child sleep.

We know that lack of sleep can affect our child’s behaviour and can impair their ability to control their emotions, as well as learn and concentrate. Did you know that inadequate amounts of sleep can also affect our immune systems and possibly increase inflammation? Not to mention the increased hunger with decreased sleep, which often leads to weight gain and obesity. Which completely explains why my blog is entitled Autism with a Large Dose of Chocolate…

Sleep problems vary with each individual. Some can’t get to sleep – tossing and turning while their brains are doing mental gymnastics. Others fall asleep exhausted, only to wake a few hours later and unable to go back to sleep for hours. Then there is the issue of sleep apnea which leads to poor quality sleep regardless of how many actual hours you’ve had. Not to mention vivid dreams or nightmares which leave you feeling exhausted and sometimes too scared to go back to sleep.

When my son was younger, he would fall asleep exhausted (finally) and be in a deep sleep for five hours. Then he would wake up and be awake for twelve hours, before repeating that cycle. His body was functioning on a 17 hour cycle while ours were trying very hard to catch up (not very successfully). Once we took him off gluten, his body readjusted and he was able to sleep at night, although he was often still getting up in the middle of the night. I remember one night where we were awoken by the sounds of smashing glass, as he thought it was fun to unstack the dishwasher by throwing the glasses on the hard tile floors. We came running out to the kitchen to see him walking over the broken glass – miraculously unscathed.

Even now he does not fall asleep until midnight or 1am – 11pm is an early night for him and usually means he’s coming down with something. We’ve tried any number of supplements, bedtime routines and tricks to get him to go to sleep, but nothing has worked. Thankfully, once he’s asleep, he stays that way, until we have to wake him for school in the morning. Occasionally he will wake up in the early hours of the morning, but we can always trace this back to a food or something else that has caused him to waken that early.

My oldest daughter (19) has the same issue. She does not find it easy to go to sleep, and can often be blearily awake at 3am, still trying to get to sleep. Her sleep is not refreshing so she will doze on and off until lunchtime, at which time she will drag herself out of bed to get a cup of coffee. This makes it very difficult for her when it comes to attending daytime events, as she is not usually fully awake until mid afternoon (and you don’t want to mess with a sleepy bear, trust me).

I realise there are some who think that a person’s individual sleep cycles should be respected, and that if it is part of your Autism then society should be able to adjust to this. As a parent however, it makes it difficult for me when my son can only attend school from 9am to 3pm and he naturally wouldn’t wake up until 10:30am or even later. It is hard for my husband to drag himself out of bed every morning after far too few hours of sleep, because his employer expects him to work business hours. Personally, I get really annoyed when I try to sleep in and our super efficient Postman rings the doorbell with a parcel!

When you have more than one child, they may have different sleep patterns, so you can’t always sleep in or have a nap when your ASD child does. Think of those early baby days where you were exhausted from night feedings and nappy changes. With Autism in the house, it eventually becomes a way of life, which for many parents will never end. Your body calls on its reserves to help it cope with the strain of not being able to recharge and repair at night, but eventually you wear down. Daily activities become harder, you ‘catch’ every little thing and it takes you ages to recover, and sometimes you don’t. Your energy levels become lower and lower, leading you to be less productive at work, and less capable of looking after your children.

Lack of sleep is a big issue for ASD parents, and I really think that most people aren’t aware enough of how much it affects our lives.

There are two lessons I’ve learnt the hard way over the last few years: one is that absolutely nothing is indestructible, and the second is that you should not have any cherished possessions. The second follows the first for obvious reasons, but even if you ignore the second at your peril, you simply cannot escape the first lesson.

Our son is an absolute master mechanic, problem solver and demolition expert rolled into one unstoppable package. Brick and concrete retaining wall? Not a problem – reduced to crumbled bits of mortar and brick dust within days. The resulting landslide makes it even more rewarding for the amount of effort put in. Waste water pipes that have rather stupidly been left in the ground where BuddyBoy plays? Solution: pull out a brick from the few remnants of garden edging and use that to smash the pipe. This also provides lovely bits of sharp piping which can be used to create further hazards for unwary feet.

The bed in his room has suffered – he managed to rip a hole in the top covering of the ensemble base, and pulled out the stuffing around the timber slats. Our return volley was to screw a large piece of timber across the top of the soft surface (also trapping some toys which we couldn’t get out). The other night we couldn’t find him in his locked room – he had crawled underneath the bed, ripped the fabric off the base and crawled inside to sleep. The next day he proceeded to pull all the foam and padding out from the inside. Bed: 0, BuddyBoy:2.

He objects to sheets and will rip them off the bed or sleep on the dirty floor rather than on a sheet. So we bought an organic, heavy cotton mattress protector – sewn to fit like a covering over the mattress with a zipper at one end (like a fully enclosed sleeping bag for his mattress). It took him two minutes to break the zipper, and about twenty minutes to rip every single seam apart on the very sturdy cover, so he could pull it off the bed and throw it out of his room.

Survivor iPad covers do not survive. If the Army would like to test their next model on BuddyBoy we’d be more than happy to provide his services.

Childproof locks or childproof gates are oxymorons. Also very easily broken.

Door-slam Stops do not stop doors from slamming, and tend to explode into several sharp projectiles.

Christmas ornaments – please, just don’t do it. Let alone anything else that may stand on a surface, hang on the wall or dangle from the ceiling.

‘New’ furniture has to pass several tests before we let it in the house. First of all, it needs to be incredibly heavy. It also needs to be so sturdy that anything open-able can get slammed repeatedly and with great force, and still not fall apart. It has to be able to withstand at least 22kg jumping and bouncing on it or swinging from it. We must be able to wash crayon, pencil, pen, poo, food and various other unidentifiable smears off it easily, with no decorative crevices to catch any of the aforementioned. There can be absolutely no MDF (medium density fibreboard), chipboard (particle board) or plywood on it – all of these will disintegrate into their original states with BuddyBoy’s careful attention. Of course, it also needs to be cheap (or free) as it absolutely will get ruined and need replacing.

Electrical items obviously do not fit any of our furniture criteria, which is why we’ve had to replace anything he gets his hands on. DVDs are expensive when you have to replace them every week, but it turns out that media players, hard disc drives, remote controls and TVs are not that shock resistant either.

I am seriously not strong enough to talk about all of the books that have suffered under his ‘tenderness’. I love books – and I still have PTSD about it which flares up every time he touches a book. We’ve tried sticky taping edges, covering pages with Contact covering, and laminating individual pages and binding them back into ‘book’ form. Nope – they all end up in the bin.

My husband has become an expert at replacing door handles. It turns out that the older style door handles we had (which matched our old house) can be taken off quite easily, rendering you a prisoner in the room unless you happen to have a pair of pliers on you.

Clothing presents a problem. It’s easy to tear with teeth during a meltdown, and once it has a hole in it, it gets picked at or just ripped into shreds. As he tends to get holes into his clothes on a regular basis while climbing our fences, we go through a lot of clothes. Recently, BuddyBoy has been working on his fine motor skills by “snip, snip, snip” and practicing with scissors. Scissors and fabrics are not a good combination. Shudder…

I could add car seats, water taps, toys, curtains, any item of kitchen ware, candles, carpet, walls, tiles, plants, fences, window frames and probably anything else I can think of to the list. All of which we’ve had to replace, fix, remove or otherwise spend time and money on.

Could I please add that to my list of items the media could make the public aware of about Autism?

Something that is conspicuously missing from my  newsfeed in relation to Autism, is poo. Poop, faeces, excrement – whatever you choose to call it, it happens. 🙂 It happens every day, and for autism parents, far too often (or not enough) and in too many places. A lot of us talk about it at get togethers with other Autism parents – what colour it is, what shape, whether it floats or sinks, and how many places our child has been able to hide it.

We’re often obsessed with it – mostly because it can give us a good insight as to the gut health of our child, and it’s subsequent relation to behaviour. Doctors ask us about what number it most closely resembles on the Bristol Stool Chart, how often our child ‘goes’ each day, what colour it is, and even what smell. We examine it for bits of food or other objects that really shouldn’t be in there.

Then there’s the other obsession with poo. The one that our kids have with it. A lot of kids on the spectrum seem to enjoy playing with it – squeezing it, rolling it, smearing it on their bodies, the walls, their toys, the furniture, the carpet, and sometimes even eating it. My son likes to throw it with a satisfying ‘thud’ onto the walls and ceiling. Sometimes he shapes it into little balls and rolls them around on his table or bed. He particularly likes it when it’s lovely and squishy, so it smears better on the wall, and all over his legs and arms.

Awareness of poo smearing has obviously spread (apologies for the pun), as there are now several places that offer one-piece suits that supposedly stop our little darlings from being able to access their nappies. You can get them in larger sizes for older kids, and even in compression suits. None of them work for my son, and I know of several other Houdinis who are also not fazed by these modern inventions – if they feel the need to smear, nothing will stop them.

This makes for interesting household decor. Our son’s room no longer has any wallpaper on the walls (he enjoyed peeling it off immensely), and is instead decorated in crayon, marker pen, pencil, food remnants that we couldn’t quite manage to get off, and a lot (and I mean a LOT) of brown stains. No matter how hard you scrub, the stains don’t come off – one of these days I’ll have the time and money to cover the walls in washable paint and then hopefully they won’t look so disgusting anymore.

The floor used to be carpeted. After a lot of shampoo and scrubbing, we finally decided that it had to go, so it got ripped up and replaced with washable flooring. It’s much easier to sweep the food crumbs and bits of paper off it, as well as wash the poo – although now that there is no challenge to cleaning, somehow a lot less poo ends up on the floor. Sometimes he does leave a little present for us though – unfortunately we don’t always find it straight away, as his floor is always covered in bits of shredded paper, which tends to hide a lot of sins.

The ceiling has little bits of red wax all over it – he had a great deal of fun throwing a red crayon at the ceiling to see how much of it would stick. In between, there are some little brown stains. One day I’ll get a ladder and scrub the ceiling. Every item that goes in his room has to be washable, and has been washed numerous times. The mattress looks like it should be condemned – one thing he objects to with a vengeance is sheets (which I think will be the subject of another blog post), so his mattress is readily available for colouring in. Donations for a new mattress will be gratefully accepted!

Could we please raise some awareness of this issue by having more Autism and Poo stories in the media?