The embarrassment of Autism parenting

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.

On Being a Parenting Failure

Many, many years ago, I had a vague idea in my head of what ‘successful parenting’ would look like. To me, it was something that could really only be measured when my children were grown and living independent lives – judging the success of my parenting by the decisions my offspring would make. I realise that there are personality characteristics inherent in everyone that influence their lives, but I still had some nebulous concepts of what would showcase my parenting success.

Once I started having children, I was very focussed on the day to day stuff – like making it through yet another sleep deprived day with a screaming and tantruming toddler, but I still thought about “when they were grown up”. I knew that they would need to learn certain skills in order to be able to function in our world, and live contentedly, regardless of what they chose to do with their futures. We started homeschooling when our oldest child was four and a half, and teaching lifeskills has always been a priority for me since.

The only trouble seems to be that my kids don’t want to learn them. Nobody likes to spend time cleaning up or cooking meals when there are more fun things to be done instead, but it’s a part of life that we need to do them. Just like personal cleanliness – I understand that sensory issues mean that having a shower or washing your hair is not something you’d willingly do, but the rest of us really don’t want to smell you or look at you when you haven’t done it. So who is ‘right’ in that instance? The one who says, “it’s my body and I can’t stand the feel of the water on my skin”, or the one who says, “it’s my nose and I can’t stand the smell of you as it makes me feel nauseous”?  Surely there can be a compromise?

Then there is the Obsessive Compulsiveness that means every single thing has to be kept and can never, ever be thrown out. Old lolly wrappers, envelopes from letters long lost, bits of feathers from pet birds (though not even being sure which one), bits of rocks and broken shells, and a scrap of paper with nothing on it, but it must be important somehow – all these are amongst the many treasures that several of my children feel it absolutely necessary to keep for eternity. I have sensory issues, too, as well as compulsions of my own. I learned long ago that visual clutter makes my brain feel cluttered, so in order for me to function better and feel emotionally capable, I need to have a relatively tidy house with things behind closed doors.

I have literally managed to stumble through one of my children’s rooms only to have a full blown panic attack when seeing the ‘stuff’ that was all over the floor, the furniture and hanging out of the cupboards. I know that I am the one that has to go through and organise it – throw things out, store the treasures and do it in such a way that the child can continue with the system themselves. Only they never do. Not ever. I am a fabulous organiser, yet I have failed at instilling in my children the most rudimentary of organisational skills – because they simply don’t care. I’ve tried to get them onto organisational apps and other tools that I think might suit their interests – “no thanks, I’d rather be messy”.

Being a Christian, I also have certain expectations of my children as human beings. Yelling abuse at their siblings, hurting them and breaking things don’t really fit into those expectations. I find it difficult to cope with the at-times constant arguments, the explosive tempers that my children have, and the extreme stubbornness that leads to school refusal (even though we homeschool) or to do anything as simple as helping clean up their own mess (and woe forbid if I ask them to clean up someone else’s mess).

I find it exhausting to have to constantly follow a child around, reminding them to do their (very few) chores, or to have a shower, or to eat something, or to go to bed (oh, that’s a favourite one in this house). I have tried visual charts, I have tried Chore Packs (clip on cards with ordered chores to do such as brushing teeth), I have tried rosters. I have tried explaining, begging, pleading, guilt trips, paying them and yelling at them. Nothing works.

So looking at the likelihood of my parenting having raised some healthy, capable individuals, ready to cope in our society, I have to admit to a huge FAIL.

My oldest ‘child’ at 19 does not want to leave the house, talk to people, eat or sleep. I have no idea how she will ever cope in an employment situation, or any other situation that puts her in daily contact with the outside world. My second child is coping extremely well, except for the pressures that living in a house with four autistic siblings put on her mentally and physically. She has not had a normal childhood by any stretch of the imagination. My third child is the one refusing to do schoolwork and spends most of her time on the computer, regardless of what I say or do. My fourth child is doing well but has decided that what’s good enough for her older sister is good enough for her, so she is not doing schoolwork either. And please don’t ask her to have a shower or brush her hair. My youngest has an explosive temper that needs to be managed very carefully at all times, and I have wondered whether he has Pathological Demand Avoidance. And then there’s my autistic son, who needs 24/7 watching and care.

At the beginning of my parenthood journey, I had thought that someday I might be able to enjoy some ‘child-free’ time with my husband once the kids had left home, and maybe even have a few grandchildren. The reality is that we will always have at least one child at home – and regardless of how old he is, he will most likely remain a child in intellect and behaviour for the rest of his life. I don’t know whether the others will be able to cope in the world without our help, either. Child-free time would require the money to pay a carer – a luxury we simply cannot afford when we are struggling to put food on the table. The only one of my children who might like to marry one day is too afraid of having severely ill children, so the chances of my having any grandchildren are pretty slim.

No matter who I talk to, I am confronted with advice that totally contradicts my personal feelings, instincts and abilities. We used to attachment parent – much to the dismay of some Christian parents. We also tried ‘tough love’ as recommended by our pastor at the time – this backfired completely with the kids and left me feeling absolutely horrible as a parent. We did the usual daycare, preschool/school thing, only to find out that it simply didn’t suit our child. Then we were harassed by the various government departments and ‘professionals’ we were consulting at the time (none of whom ever mentioned the word Aspergers to us) as obviously all our issues were due to homeschooling. This was right after we were told that our oldest child had possible Attachment issues and we should work on that.

On the one hand I am told that my children need lots of exposure to the ‘world’ (aren’t we living in it already?) and that I’m not forcibly dragging them out enough to make them endure socialisation. At the same time, I should be cognizant of their sensory and emotional needs and not put too much pressure on them. Each child should apparently be receiving special attention, therapy and a whole heap of other things, which are simply not possible when you have six children and only one full time parent, as well as a budget that has been stretched beyond breaking point already. I’m their case manager – it is up to me to coordinate therapies, financial assistance (ha ha ha) and anything else they may need, as well as provide therapy at home, ensure a nutritious diet and that they are taking their supplements.

Is it any wonder I feel like an absolute failure? The pressure put on parents of children with Autism is huge – not just from within ourselves, but from well meaning friends, relatives, school teachers, and any professional we consult on behalf of our child. Add in the fact that a lot of us have health issues of our own which are exacerbated by the constant stress we live in, and it’s truly a miracle that we manage to survive each day.

Autism Awareness: Decorating ASD Style

decorating asd style

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…

Autism Awareness: Sleep (and the lack thereof)

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.


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?