Autism Awareness: Captain Destructo

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?

 

 

 

 

Autism Awareness: Brown, Sticky and Stinky

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?

Autism Awareness: Absconding

One of the news articles that came into my inbox today was about a 10 year old boy with Autism, who had managed to abscond, but had thankfully been found safe. These sort of news items are not rare – absconding (also called elopement or wandering) is something a lot of parents of children with Autism are all too aware of. Many of us live in daily fear that our child may run away, possibly to drown in a nearby body of water, or to be hit by a car.

I’ve written before about one of the instances of when my son ran away during a time when I was quite ill. It’s a huge stress on me as a parent – having to be constantly monitoring my son’s whereabouts is impossible, but I do the best I can. If I had the money I would invest in security cameras all around our property, as well as prison style fencing (not that our council would approve that I’m sure). Listening for screeching tyres, car horns and screams coming from the direction of the road is a constant factor in my life.

Worry about having the police pay us a visit one day due to the damage my son causes when he gets out of the house is another concern. Let alone the fear of having Child Protective Services possibly pay us a visit as caring parents would obviously not ‘let’ their child play on the street or run off unattended. With Autism however, this is the norm – but I don’t see that making the headlines when it comes to Autism Awareness.

My son is an excellent climber and very mechanically inclined – opening locked doors and gates, or climbing child-proof fencing is not a problem for him. He likes to explore and hates to be confined – which is why we bought a house with a large yard. Apparently the grass is greener on the other side however (not that we have grass at the moment). We have a big climbing frame, swing set, cubby house and various ‘amusements’ in our yard, but this is not always enough. He likes the lure of the ‘outside’ world – where he can find any number of objects to smash into satisfyingly small pieces and leave a trail of destruction in his path. Sometimes we just follow the trail of poo smears to find him…

I’d like to see more stories about that on Autism Awareness day.

Autism Awareness: Living with Domestic Violence

The Premier of Victoria, Australia (where I live) has a media release on his website today, stating that he will overhaul the Family Violence system so families will be safer. It’s an interesting read – apparently living in a regional or rural area means you’re more inclined to be a victim of family violence. There will be an emphasis on greater training (and no doubt awareness), safety hubs, and stronger accountability for perpetrators. Sounds good, doesn’t it?

But what about when you are a victim of domestic violence, and you can’t leave? When you can’t hurriedly pack your children up and go to a safe house? When the perpetrator is not going to be held accountable for their behaviour? When even the ‘professionals’ don’t know how to help you?

This is a difficult topic to write about. Baring my soul in a forum where anyone can read it – people who don’t know me or my family, people who may judge my actions, and those who may simply not understand our situation and therefore say things that are hurtful. However, it’s been on my mind for some time, and I’ve decided that I need to share it. I know there will be some mothers and fathers out there who will be able to relate to what I go through, because they, too, are victims in their own homes.

There are moments where everything is fine, and family life is almost ‘normal’ – as normal as it gets for us anyway. I tell myself that maybe things aren’t really that bad, that I’m exaggerating things in my own mind, and just being too sensitive. I feel like maybe if I was to just not be so tired, to be more capable, get more things done, then life would be easier. Then reality hits, often literally.

Sometimes it comes on with a warning – an escalation. The noise increases, movements become more agitated, the air pressure almost seems to increase. The other children become quieter and argue less, and stay out of the way – they learned that lesson the hard way, too. I speak softly and calmly, and avoid using trigger phrases that add fuel to the impending volcano. It usually doesn’t work, but I do it anyway – what else can I do? Then the eruption – the yelling and screaming, the arms flailing, clawed fingers connecting with my skin. The benefit of adrenaline – you often don’t notice the pain until it’s all over, but sometimes it’s so bad that you can’t help but notice. Not much you can do about it at the time though – you’re too busy protecting yourself or someone else.

At other times the blast hits you without any warning, and that’s even worse. Like when I was standing in the kitchen, staring into space while waiting for the toaster to pop. The first clue I had was the punch in the stomach, quickly followed by more blows. It’s harder to defend yourself then, and psychologically it makes it harder to deal with as well. You tend to always be prepared – always in fight or flight mode. Adrenaline is constantly pumping through your veins, you are hyperalert to sounds and sights, even smells. It’s hard to sleep when your body is preparing to defend itself, and you never really relax.

I can’t just pack up my kids and leave my home – the scene of my domestic violence. Because the violence is not being caused by my husband, but by my 7 year old son. The one who has no idea of appropriate behaviour, who bites himself (and others) so hard that he draws blood and leaves red, angry teeth marks behind. If it was my husband causing this amount of damage, there would be counselors I could ring, people who could support us, maybe safe places to go. But this is not possible with my son – somebody needs to be here to look after him.

Children with Autism are often extremely strong, requiring several adults to keep everyone safe when they have ‘an attack’. Our reality is that the day will come (soon), when our son will become too strong for me to handle, and my other children will not be safe living with him anymore. We then need to make some tough decisions – ones I really am not strong enough to contemplate right now.

Even if it’s not your child who is being violent, for a family who has a child with Autism, you can’t just pack up and leave a dangerous situation. They often need the familiarity of their surroundings to be able to cope. Living in a different home every week, not having your familiar things around you, makes life very difficult for children with major sensory and anxiety issues. Changing schools is virtually impossible – the amount of assistance that each school can or will provide varies hugely, and is not something any parent would have the strength to go through several times a year. Yet for the woman’s safety, this is exactly what is at times recommended.

I have no answers on this – I would just like to raise awareness of it, given that we are approaching Autism Awareness Day (April 2nd). There are many things that are impossible or wildly different, when you have a person with Autism living in your household.