So, this is a post that I originally did back in October 2010 but with a few reactions that we’ve had from a few people since coming back home I thought it was a post that needed saying again………………
So here goes……………
I’ve been writing this post for almost 2 weeks, I wanted to make sure it was right. Over the past month I received a few emails and had a few telephone conversations regarding J and the parenting skills of hubby and myself. These were negative comments made by others, some people who “care” about us. Comments like, “we’re letting J be naughty”, “we let him get away with things” , “We’re giving in to his tantrums and so teaching him that if he has a tantrum he can get his own way”, “there’s nothing wrong with him, it’s just us”, “He’ll be fine, we should just be stricter” and so on…….. you get the picture.
These comments have had a negative effect and for the last couple of weeks I’ve started doubting our parenting skills, questioning everything I do and just generally feeling like a bad mum who can do no right. So big thanks to all those people!
It’s to those people and any others that would like to or need to understand a little more about J and Aspergers that I write this.
J has a hidden disability. J has Asperger’s Syndrome (AS) which is an Autistic Spectrum Disorder (ASD).
This means -
J is a literal thinker, he doesn’t understand metaphors, sarcasm etc, see my post But You Said for some examples of this. J doesn’t understand social cues and most facial expressions. He doesn’t wait for someone to finish speaking, he doesn’t think twice about interrupting a conversation, if he has something to say he’ll say it and he HAS to be listened to because he won’t stop and will get louder until he is listened to. Sometimes he shouts, screams and even growls at people, just because. He can talk for hours about his computer games or Power Rangers and doesn’t understand that some people aren’t interested or are bored and fed up with hearing the same things over and over again. He doesn’t understand that sometimes he has to listen as well as talk.
He’s not being rude or attention seeking, he just doesn’t understand the unwritten social “rules” that we all take for granted.
Because of his lack of social skills, J doesn’t really have any friends, his “friends tend to be adult friends of mine or his Dad or they are much younger or older than himself, like H, (2 years) and S, (11 years). He did sort of make a friend at playgroup but didn’t understand that his friend also had other friends and didn’t always want to play his game with him and actually got quite sad about it, saying things like “*Jack* doesn’t want to play with me anymore he just plays with other kids,” this was simply due to his lack of social skills and understanding.
J obsesses over things, at the moment it’s his computer games and Power Rangers, not only does he talk about them constantly , he also “acts” like characters from them, reads the instruction book several times a day, (it’s his favourite “book” at the moment) and no matter what he playing with, it becomes his game complete with stages, bases, lands, levels and of course “baddies”.
J needs routine, he doesn’t cope with change. This isn’t just changes to his daily routine, it’s the way things are done, the route we take home, the order in which we do things, the way things work, if we do something in a different place and so on. For example if we set his alarm clock before he’s had a quick drink from his water bottle we have to start the bedtime routine all over again, he changed rooms at playgroup just for a short while during one of his sessions but this caused him so many anxieties that a few months later he still checks and worries that he will be in a different room, (although he has now just finished attending playgroup), when we went to a prep open day he refused to go to what could be his new classroom because to him that wasn’t his classroom and Miss S and Miss C weren’t in there.
J has various sensory issues. He doesn’t like certain sounds, he can also make strange sounds at times. He has perfect hearing and yet sometimes doesn’t “hear” what is said to him because he has difficulty processing what has been said and organising all the sounds that he is hearing, something that most of us just do without thinking about it. At times it can seem like he is ignoring you, (and I’m sure at times he is, afterall he is a child), but the majority of the time he’s just having difficulty processing what has been said. He can get easily distracted by background noise too, a fridge humming can seem very loud to him, although we probably wouldn’t even notice it’s sound, so you can imagine how hard it can be for him at times to “hear” everything and process everything that he is hearing.
He also has “super sight”, he sees things that others don’t and can get extremely upset with you when you don’t see what he is pointing out to you. Bright lights can also have an effect on J, he often says they are hurting him.
J is also sensitive to certain smells and tastes and is extremely sensitive to touch. He smells everything and is extremely sensitive to a few smells that he doesn’t like. He has a very limited diet, eating mostly white, very bland tasting foods. He hasn’t developed fully orally, by this I don’t mean that he has difficulty speaking, he’s extremely verbal, in fact he uses words that alot of 10 year olds wouldn’t use let alone 4 year olds. What this does mean is, he bites and chews himself, others, toys, clothes, etc…. He also licks his lips and gets a very sore mouth as a result of that. He overfills his mouth quite often because he simply doesn’t realise how much he in his mouth until he has too much in there. As for touch, well J likes to touch everything, (usually when he’s smelling things), providing it’s not “dirty” of course. He HATES getting messy and in particular having dirty hands. He doesn’t like to be touched by others, for example if someone brushes past you in a busy shop you might barely notice it, however J will insist that someone has hurt him on purpose and will shout and scream. He doesn’t like anything to touch his head, so you can imagine how much fun haircuts are! He also has issues with clothes, at times he doesn’t like the colour or the way the material feels against his body, other times he insists that a tag or a seam is hurting him.
J also has difficulty with proprioception, (this is the sense that indicates whether the body is moving with required effort, as well as where the various parts of the body are located in relation to each other) and vestibular (The vestibular system in the brain allows us to stand upright, maintain balance and move through space. It coordinates information from the vestibular organs in the inner ear, the eyes, muscles and joints, fingertips and palms of the hands, pressors on the soles of the feet, jaw, and gravity receptors on the skin and adjusts heart rate and blood pressure, muscle tone, limb position, immune responses and balance). All of this means that he has difficulty staying still, in fact the only time he sits still is when he’s playing on his computer games but even then at times he has to be moving. He has an unusual bounce, he likes bouncing and jumping, it helps his body awareness. He doesn’t have great co-ordination, he has a poor pencil grip, (he tends to grab rather than hold a pencil), he has difficulty using cutlery, (well he rarely uses it, preferring finger foods), he has difficulty pedalling a bike, using a scooter etc. He has almost no sense of danger, (although does have some fears), he climbs on everything so that he can jump off it, (he says that he’s base jumping!!). He has a high pain threshold, when he broke his collar bone earlier this year we had to wait 4 hours to be seen in A & E because he wasn’t screaming so it obviously wasn’t that bad! We quite often find a new bump or bruise, (he quite accident prone), that he hasn’t realised has happened until we discover it. We’ve been working on this with him, trying to explain to him that even if he hurts himself the tiniest bit he must tell someone, of course he’s now telling us everytime he gets the tiniest scratch, we can’t seem to find a happy medium.
J isn’t a good sleeper, he plays the usual games that most children play at bedtime, not wanting to go to bed, coming out with excuses etc, bedtime can take over an hour.Despite the warm temperature he insists on having his fleece blanket and his quilt on him and it must be over his collar bone. Once he is all tucked up fast asleep, he very rarely stays asleep, often waking 2-3 times a night and is a very early riser, he gets up most mornings between 5.30am and 6.30am.
Of course all of the above creates anxieties within J and leads to meltdowns. Please take note, Meltdowns are not Tantrums. When a child has a tantrum it’s usually because he/she isn’t getting their own way or what they want, J has tantrums just like every other child, however when J has a meltdown it’s usually due to his anxieties or his sensory issues. When J has a meltdown anything can happen. He hurts himself and others, he bites, hits, kicks, screams, shouts, scratches, pinches, opens and slams doors, throws things, smashes things……. the works. He seems to develop some kind of super strength when a meltdown occurs. J has difficulty regulating his emotions. Once a meltdown has started there is nothing we can do, we just have to try to make sure we protect him, (and ourselves) from getting hurt and simply wait until it’s over. Meltdowns can last anything from 10 minutes to the whole day. Meltdowns can occur because of almost anything and often occur without warning.
Of course these are just some of the difficulties encountered by J and ourselves, however there are also lots of positives, something we try to focus on and work with.
J is incredibly smart. At 4 he has just started recognising and reading certain written words, he can count to over 100, he can add and subtract, he knows all of his shapes and even knows the difference between a sphere, a cylinder and a circle. He knows so many facts about the human body, various animals etc you just wouldn’t believe. He can operate any computer games console and is a whizz on my desktop.
He has a great memory – he knows everything there is to know about his computer games, Power Rangers and some animals.
He has an amazing connection with animals, he loves them. He isn’t bothered by their size and colour or if they’re dangerous, he talks to them, hugs them, feeds them and so on. It’s wonderful to watch him interacting with them at the Zoo.
He’s very loyal.
He knows what he wants, once he’s made his mind up about something he won’t change it.
He’s a great leader.
He has great attention for detail.
I could go on forever with his positive so I’ll stop there, I think this post is probably long enough already. If you’ve stuck with it and have read the whole post, I thankyou for taking the time to read it and hope that it helps to “explain” some of the difficulties that J encounters and some of the difficulties that we encounter as his parents.
We know that J is going to encounter all kinds of difficulties during his life and parenting a child with Aspergers isn’t going to be easy, but we’re doing our best. We’re learning to appreciate the tiniest accomplishment, (like getting dirty feet or using a shower), we’re learning to understand some of J’s triggers, we’re trying to help him to understand feelings and social skills, we’re trying to help him develop to his full potential, we’re trying to ease some of his anxieties, we’re trying to set a good example, afterall we are his most important and influential teachers.
Most importantly we love him for who he is and we’re proud of him and everything he does.
Obviously there have been a few changes since I wrote the above post but overall it sums up what I wanted to explain, I’ll write an updated version at some point over the next few weeks ;)