Being an Autism Dad

Its Fathers Day again, and for most dads, it will be a lovely reminder what it is to be a dad. Sometimes though, being a dad is a little bit more challenging than you thought it might have been.

It wasn’t really in the plan that Matthew & Daniel would have special needs. No parent thinks that as pregnancy progresses. But when it became evident that things “weren’t quite right” with Matthew, we started to face the possibility that he may have Additional Special Needs. The diagnosis process was soon underway, and we had (or rather Matthew did) have an Autistic Spectrum Disorder diagnosis. Daniel soon followed, and was diagnosed with Aspergers Syndrome last year.

DSCF2767

All the things I thought I’d be doing as a dad, well, they were largely out of the window. The boys aren’t “normal” or should I say neuro typical children. They have complex needs that require a lot of adjustment for me. I’ve learned that while it would be nice to have a cuddle with Matthew when he comes through in the morning, Matthew will only engage in physical contact on his terms, and will push you away otherwise. Initially, it was difficult to accept, but its not because he doesn’t love me, its more that he is uncomfortable with that kind of physical contact. I’m still learning that when he comes through in the night, and is screaming abuse at us, its not because he’s being horribly behaved. Its all down to his heightened level of anxiety and stress brought on by his “special brain.” His punching and kicking are automatic responses he can’t control, and I have to accept that.

Being dad to 2 boys on the autisim spectrum has meant I might not do a lot of the things dads of neuro typical boys might do. Most would expect that by 7 & 6 years old, they would be out playing with school friends after school and at the weekends. But both boys, although they have a VERY small circle of friends, they don’t really understand friendship and as a result are at home demanding (and they are demanding) attention non-stop. Being at home means they are craving attention. If I suggest they play with friends, they look at me as if I’m mad. Both boys compartmentalise their lives. Their classmates – they are seen at school. That is their place. Seeing them out of class is alien. Daniel will see his closest buddy in his class all day, play with him on the way home, but there will come a point where that part of the day – the transition from school to home – where that little person isn’t part of his world. And as soon as I get home, I am their world! That’s not being arrogant, its just how they see their world. Classmates are for school, home means dad.

wpid-Aberdeen-City-20130602-00157.jpg

In general, that means that when I am at home, I have to be with them all of the time. There’s none of the time where it might be expected that they amuse themselves, be it in front of the telly, on the Wii, playing with their toys. Any of those activities must be done with dad, if I am at home. Try and slip upstairs after teatime to catch Star Trek on the telly – within a minute or two, one or both of them will be up. Generally that will be the cue to get on the trampoline. Another activity where parents would expect they could leave their kids to play together. But for the boys, trampoline time means time with dad on the trampoline. They won’t go on otherwise. Its not that I really mind, as its great exercise, and it does present additional bonding time.

I had also hoped that when we had children, they would follow my passion that is Aberdeen Football Club. I’ve been a fan since the early 70s, and wouldn’t be without my season ticket. Daniel expressed an interest, but Matthew was a big no. The problem is the noise. Both boys have sensory issues, and loud noises confuse and scare them. Matthew just wouldn’t cope. Daniel has come with me a couple of times, and generally enjoyed it, although his constant movement means I need to keep a close eye on him. Still, they both love to please – its part of their ASDs I think that they try to do so. It has meant that Daniel has become a major fan of Star Wars. Like Matthew, he has an obsessive nature, and because he want’s excuses to be with me, he became obsessed with Star Wars (https://theworldofneil.wordpress.com/2013/04/06/an-aspergers-star-wars-obsession/) – which I love. Its part of their need to be at the heart of our attention. Its time I really enjoy with the boys. Daniel loves it, and Matthew more tolerates it just to be part of the experience.

Its all something I’ve had to get used to. That and the to-ing and fro-ing to the school (the review meetings, the advocating, the fire-fighting), the doctors, the hospital, their favourite parks they NEED to go to to prevent meltdowns. Its all part of it. Keeping an eye on the meltdown triggers is a huge part of being an autism dad. When they are in meltdown, its difficult to keep your cool, and that’s something I’m still trying to learn to do. At the point where I get angry with them is just the point where they are coming off their meltdown high, and getting angry with them just perpetuates the meltdown. That kind of ability to keep calm while they explode – it still eludes me, but its important that I continue to learn so I’m more able to help them. Its learning coping strategies that become the norm – so much so that I sometimes don’t realise I’m doing anything different from any other dad. I am of course. But then, that’s just part of being an autism dad!

So, Happy Fathers Day to all you dads out there. Particularly those of you dealing with your little (or not so little) ASD boys and girls. Its a labour of love all right.

Advertisements

Autism Night Terrors Again

Matthew has never been a great sleeper. Its bad enough that we’re waiting a referral to Sleep Scotland. He’ll be up in the night any time from 10pm to 5am. If he’s up as late as 5am, that’ll be him for the day, meaning there’s no sleep for anyone else. His night time care requirements are considerable – as bad, if not worse, than 3 years ago. First of all, he’s dazed and disoriented when he gets up. If we don’t hear him get out of bed – as is usual if he gets up after midnight, there’s a real risk of him going down the stairs. At a visit to my aunt’s, we caught him trying to get out of their front door at night. If he had, he’d have been in an environment strange to him – they live about 170 miles from us – which would have confused and scared him. But its the verbal and physical aggression that makes it hardest to deal with, because they come with the night terrors.

Matthew has been up in the night more often than not lately. It starts off with him moaning and whimpering in his sleep. When that starts, we know we’re on a slippery slope. He’ll get progressively louder until he’s eventually screaming. Often, he’ll get out of bed at this point and stumble through to us, which is fine as it means he won’t wake Daniel, who’s a pretty good sleeper. Otherwise, getting him out of bed is a must. As he’s in a high sleeper these days, that can be a bit of a problem as he grows taller.

His night terrors are hard to deal with as all you can do is hold him to make sure he doesn’t harm himself. He’s sound asleep during these episodes, which can last up to an hour. He can’t be reached, so there’s no point in trying to calm him down. All the while, he’s trashing about to the point where if he didn’t restrain him, he would definitely hurt himself. But, his fists and feet are flying, and being punched and kicked are a big part of his night terrors. When he finally comes out of it, he will wake but its hard to judge what his mood will be like. Sometimes he’ll just cuddle and fall asleep after a few minutes. Other times, he will again become verbally abusive and highly agitated. He might run back to his room, shouting at us to leave him alone. Of course we can’t, as to do ask he asks and leave him shouting, angry and agitated will put himself at risk, and will disturb Daniel. So, cue another round of verbals, and the odd punch. Woe betide us when we suggest he go to the toilet when he’s up. He won’t go at all – at any time of the day – until he is prompted to do so until he is literally bursting. That usually gets a mini-meltdown during the day. Try doing it at night when he’s just off the peak of a night time meltdown at 2am.

When it all done and dusted, an hour and a half may have passed before I carry him back to bed. He won’t go back himself, as we’d not trust him to get back into bed. That might be the end of the night meaning we (Jane more often than not) can get back to sleep. If we’re lucky. If he is up early enough, we might look forward to another visit – or two. Some nights, Jane is lucky if she gets 2 – 3 hours consecutive sleep.

At times when we wonder how hard is it to care for Matthew, we think would the parents of a neuro-typical child be up with them screaming, punching and kicking in the night, maybe 3 times in one night? No. Matthew’s care requirements are as bad as ever. In my view, he’s slightly worse now than he was. More often than not for us, getting Matthew to bed isn’t just the end of the day, its the start of another long night.

Coping with the Stress that Comes with Autism.

Recently, Jane attended a stress management course run by SCILLS Deeside (http://www.scill-deeside.co.uk/home) at Camphill School at Miltimber, just outside of Aberdeen. We’d gone so long without any meaningful support for dealing with Matthew and Daniel. It might be them who have the autism label, but it’s the parents that have to deal with what that entails. SCILLS had come up with the goods with a special needs dancing classes. We’ve been involved in other activities with Matthew and Daniel that are aimed at supporting them. But what about t he parents? Its about them too.

Most parents can prepare themselves for the rigours that children can bring. You never stop worrying about them, and despite what some in government might say, money can become a real issue that can cause many a lot of stress. But few parents can prepare for the stresses of having a special needs child. There are so much we (special needs parents) need to consider, prepare for, find solutions for that parents of neurotypical children don’t have to. If your concerns are getting the kids out of bed for school, or getting them home at a decent hour when they’re out with friends, then those are issues that can be dealt with, as in most cases, the child will (eventually) see reason. But ASD children present a range of difficulties. Some will be able to imagine the stress of not knowing when your ASD child will suddenly go into meltdown and physically attack you with whatever comes to hand. We’ve been hit by fists, feet, toys, cups…we’ve even had a table knife shoved in our face – literally.

The meltdown is our nightmare. As ASD parents (generalising again) we must be on constant watch for signs of them. Being on a state of heightened alert almost constantly can be incredibly stressful. Walking on eggshells around the children for fear of setting of a dreaded meltdown. They make even the most mundane tasks difficult to deal with. A meltdown in the morning can mean getting them dressed for school becomes a physical battle. Last week, Daniel had a meltdown just around breakfast, and the only way to get him upstairs and get him dressed was to man-handle him throughout the entire process. Its incredibly exhausting. Then its all over as suddenly as it began, but we are still highly agitated and stressed of course. The adrenalin from the episode is still surging around our bodies, and its difficult to calm down.

Night times can give rise to stress for all of us. Matthew has never been a good sleeper, but now the night terrors have returned. He’s yelling in the night any time from 9pm to 4am. Its hard to deal with him properly as we’re all tired from constantly having our sleep broken. That tiredness would make anyone short-tempered, but when you’re dealing with a child that’s yelling and is impossible to calm down at 3am, well let’s just say stress levels are very high indeed. Dealing with wet PJs when they can’t get to the toilet in time, not eating their tea, refusing to come indoors, throwing object s around the room. Its hard to keep your cool under a constant barrage like that.

This is where stress management comes in. Its something I think few special needs parents have the time to consider, but its support that’s so badly needed for us to make sure we don’t snap and take our frustrations out on our children. Its not their fault they’re ASD. Its just part of who they are, and the wiring in their brain prevents them from seeing the world as we do. It prevents them from being able to cope with sudden changes to routine. It won’t let them understand why the Wii has to go off at bedtime. Its up to us to be more understanding, and that means we need to cope with the stresses that ASD children bring.

From Jane’s course at Camphill (http://basijas2013.wordpress.com/2013/04/21/i-am-not-a-bad-parent-just-challenged/) , basically, when a child enters meltdown, it can be a sudden rise to the peak of the meltdown if we fail to take preventative action early enough. When they explode, our stress levels are already at a high level, and it doesn’t take much time until we explode. But because an ASD child’s meltdown can end as suddenly as it began, they will start to come down from their emotional high just as we’re in the process of exploding from the stress we’re being put under. The end result is that we’re not in a position to be rational with a child just coming down from a meltdown, and we’ll shout at them, put them on the stairs/send them to their room etc. All that’s doing is pushing them back to their emotional high, thereby prolonging the meltdown situation. What does it do? Just adds to the stress we’re trying to cope with. It’s a vicious circle.

Jane has made me see that managing our stress and keeping as calm as possible to help the child minimise the length of their meltdown can ultimately minimise the stress we’re trying to cope with. Hopefully that will make us better at the job we’re doing with them. As Jane’s blog post says, we’re not bad parents, we’re just being challenged. Its great to know that there’s support out there for parents and carers of special needs children. If more could be done to help us access that support for ourselves, it will benefit us all in the long run.

Mums of Children with Autism – Happy Mother’s Day!

As all of you will know, today is Mother’s Day (at least in the UK), so first of all, Happy Mother’s Day to all you Mum’s out there. Without wanting to be patronising, you all do a fantastic job each and every day, and its a little sad that some people think that making an effort on one day a year makes up for not bothering the other 364! But that’s another story.

I’ve wished my mum a Happy Mother’s Day. I see my mum with the boys regularly – usually on a Sunday, I take the boys over to see their granny (Mum lives about 10 miles away) so Jane can have some ‘me time’ at least once during the week. While they are running riot at my mum’s, watching DVDs, eating pizza (usually!) and drinking lemonade, Jane has the peace to do her competitions (she’s an avid comper, and picks up prizes fairly regularly) and have a long soak in the bath. But today, the boys and I are at home. Daniel has already been in overdrive. He made a fabulous card at home (he loves his crafts), another at school as well as a model of flowers. Matthew also made mummy a card, which were all proudly handed over this morning. Then it was right downstairs to do toasted brioche with plum jam and a cup of tea! Its roast chicken & veg for lunch, so its almost time to get that ready.

Jane deserves it all. The boys love her to bits, even though at times Matthew finds that very difficult to express. Being a mum to one ASD child is hard, but two? I’m out at work during the day, Monday to Friday, so its Jane that’s left to deal with the fighting from 6am, getting them downstairs and breakfasted, getting them into their school clothes, bags prepared and up to the school. Then it all resumes at 320pm when she picks them up. That’s not to say its feet up time in between. Oh no. Usually, there’s the dishwasher to be emptied, the washing to sort and put on, the pegging out the completed loads, cleaning up after all her boys (me included) whilst having to run after her own mum. In amongst it all, Jane manages to do a lot of reading on autism & aspergers, and is a tremendous source of information for me. It doesn’t end there of course. There’s still two boys, one of whom is very resistant to doing homework, to fight through their school work, before getting the tea prepared. Its all go from 6am to 8pm. That’s more than enough for any mum, but for anyone with ASD children in the house, having to cope, develop strategies for managing the children, entertain them, try to ferret out what ever happens to be bothering them (both find it hard to express how they feel, or let us know if anything is troubling them – well, it just adds to the daily grind of being a mum at times.

Jane does an amazing job though, and the boys do appreciate it, even though they probably don’t show it often. Both boys will sometimes give mummy a hug out of the blue, just to remind her that they do care. They’re lucky to have such a great mum. Happy Mother’s Day Jane!