I don’t know whether to laugh or cry at this time of the year, when I see “Autism Awareness” everywhere. I would really, really, really love to have just five minutes of one day where I’m NOT aware of Autism. … Continue reading
I am having one of those days today where I don’t want to hear about Autism being ‘neurodiverse’ and needing acceptance. I don’t agree that society needs to change in all aspects in order to accommodate the needs of Autistic individuals – because those needs can be at odds with the needs of others and there is no way you can meet everyone’s needs at the same time. It’s impossible to provide personal playgrounds for every child – far enough away from anywhere that the noise sensitive individuals won’t get upset. Tax payers can’t afford to pay for inclusive classrooms with only two or three children and four or five specially trained teachers, being held at varying hours depending on the individual’s sleeping patterns. Freedom of personal expression for one person often involves curtailing someone else’s freedom.
My son (like many other autistic children) loves to strip his clothes off. The sight of him sitting buck naked on his swing, flying high up in the sky with everything flying free, is not for the faint of heart. Should I just tell the parents at the playground that they should accept my son’s autistic preferences and how dare they question his sensory issues? What about when he is 16 or 36 and still feels the same – is he allowed to lie face first on the swing while naked and yell happily at the top of his lungs as he goes as high as he can, doing his froggy kicks?
Should it be generally accepted that when he feels the need, he can grab a handful of his poo and smear it on the wall in the shopping centre? Or throw it against the glass window of the shop to watch is splatter and slide down? Am I supposed to rejoice when he comes running up to me and wipes his poo over my clothes?
I don’t think the visitors of our local cemetery were impressed with the destruction of their loved one’s mementos on their grave sites, when my son expressed his pleasure at smashing things into a million pieces on one of his many absconding episodes. He feels a deep seated need for chaos and destruction – should my neigbours accept that as just being part of his Autism and let him destroy their property in the name of neurodiversity?
Please don’t tell me that we need to accept and embrace Autism. Accept the autistic individual – yes. Love and care for them as we would any other human being – yes. Provide them with the opportunities to grow and flourish in our society – yes. But accept Autism and the way it limits our children – no, I can never do that.
Last year we were able to combine a trip to see our biomedical doctor with a holiday, and see some sights along the way. It had been many, many years since we’d done that, and with Autism along for a ride, it’s not exactly a smooth trip. We were pretty well prepared for most things, but still managed to stuff up completely on one instance.
We went to Currumbin Wildlife Sanctuary, and took BuddyBoy along in his pram – something he objects to most of the time now but thankfully at the time he was happy to sit in it. We decided to go on a trip on the small train that goes on a track around the Wildlife park, and get off at the other end to see the exhibits there. What we’d failed to factor in was BuddyBoy’s love of riding trains (something we hadn’t done for ages), and when we got off the train, he had a full blown meltdown.
We were struggling with the pram, our bags, the other children to make sure they all got off the train and were following, as well as an extremely strong little boy who desperately wanted to go back on the train. He was kicking and screaming (very loudly) and we were too embarrassed to even look up at the other people around us. I just wanted to disappear into the ground – feeling as if everybody was judging our child and consequently our parenting. The other children were embarrassed, too, and we did the best we could to try and remove ourselves from public scrutiny, but it wasn’t easy. Especially with the loud screeching going on. Finally he calmed down and we stopped to take some deep breaths.
Conventional parenting wisdom tells you not to give in when your child has a tantrum, as otherwise they will continue to manipulate others with their behaviour in order to get what they want. An Autism meltdown however has nothing in common with a ‘normal’ child’s tantrum and all rules go out the window. We were fully prepared to take our son back on the train, but unfortunately that was not possible – it had been mobbed by a large group of Japanese tourists and no seats were available. No matter how hard you try to avoid meltdowns in public, there are times it’s just not going to be possible.
We do use key phrases like “first, then” to help him understand what we’re doing, as well as a visual timer card. These work well as long as you use them BEFORE the meltdown happens – during a meltdown, he is incapable of hearing us, let alone understanding us or using reasoning.
There are other times when we get strange looks – like when we used to be able to take our kids to the playground (something BuddyBoy no longer allows us to do). He loves swinging, so would head straight for his favourite swing, and if it was in use he would try to pull off whoever was on there so he could have a turn. Which people probably would find amusing if he was one or two years old, but not at age seven. We get dirty looks from the other parents (perfectly understandable) and then have to stand there, forcibly restraining our squealing son while explaining to him that he needs to take turns.
Many times we will not correct our son’s behaviours, when we would have corrected them with the other children. As his developmental age is not the same as his physical age, we tend to parent him at the lower age – which for his seven year old body is closer to a two year old intellect. The gap between the two is getting bigger as he is getting older, as his intellectual development is not keeping pace with his age, so the differences are much more visible in public now. No doubt the strange looks will increase as he gets older.
I’d like Autism Awareness to educate people on the behaviours they can expect to see in public from children like mine, not just on the ‘special gifts’ that some of these children have.
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.
Sometimes, we get so totally focused on the Autism label, that we forget about the person. Whether it’s a child, a teenager or an older person with Autism or Asperger’s, the label doesn’t define them. Get to know THEM – … Continue reading
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?