Christmas and the Autistic Child

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Most children like Christmas right? For many on the autistic spectrum, Christmas is a stressful time of year. The inevitable changes to routine are enough to send some children spiralling into one meltdown after another..

Same for autistic parents.

The Boy’s anxiety has been climbing for weeks. As soon as things change at school his behaviour deteriorates. He’s on a VERY short fuse and the simplest of requests, like taking his coat off, has him throwing stuff and stomping off upstairs screaming that he wants to DIE. He’s eight going on thirteen only this is him BEFORE the hormones kick in!

Can you imagine when they do?

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Trip hazard? Or my son when the testosterone kicks in?

The Boy’s need for me is ever greater as he battles with a brain that struggles to cope with Christmas. He likes Christmas but struggles with it just as he struggles with a lot of other things he likes.

There are no decorations up at our house yet as we’re trying to keep stimulus to a minimum and my anxiety is so bad that the mere thought of them makes my heart race. The control freak within me struggles to allow other people to do it and in the past when I have let the kids, er, ‘help’, I have stood there fighting the urge to rugby tackle them to the floor in order to prise the baubles from their clammy little hands. *whispers* I re-did it once they were in bed. It’s something I don’t like about myself but it’s a pathological need for certain things to be aesthetically pleasing in my eyes.

When it comes to visiting Santa, forget it. It’s a sensory nightmare.

Queuing = Hell.

Noise = Hell.

Migraine inducing fairy lights = Hell

Sitting on Santa’s knee. Do they still do that? = Hell.

I hated it as a child. The Boy managed one minute in a queue once and we had to leave. Do your child and yourselves a favour and go to an autism friendly session where the visits are timed, you can take your own present. Visiting Santa should be a pleasant experience for every child, no?

There are things you can do as a non-deranged parent to make things a little easier for your autistic child.

Decorations

  • You can involve your child in buying decorations or letting them help you to put them up.
  • Introduce the decorations gradually. It’s probably best not to have it looking like Santa’s Grotto if your child gets easily overstimulated.
  • Give some thought to your Christmas lights. If your child is very sensitive, a migraine inducing strobe effect probably isn’t the best idea. Static or gentle fade in and fade out lights will be more appropriate.
  • Use countdowns for putting the decorations up and taking them down.
  • Use social stories and visual calendars.

Visiting Santa

  • Check your local papers/social media for autistic friendly Santa-sessions

Presents

  • Mountains of presents will overwhelm most autistic children so it’s best to limit how many they get or don’t put them all out on Christmas Day.
  • If your child has sensory issues pay attention to the paper you use to wrap the presents with.
  • If unwrapping make them anxious then don’t wrap them at all.
  • Place a familiar toy next to the new presents.
  • Try some gentle classical Christmas music in the background especially if classical soothes them normally.

Family

Don’t feel under pressure from your family. If you know your child can’t cope with a big family get together on Christmas Day, then don’t be afraid to tell them to sod off – albeit politely. Your child’s well-being has to come before Great Aunt Ada parking her arse on your sofa all day scoffing the Quality Street eh? Life is different when you have an autistic child. If people get it, great. If they don’t, educate them until they do get it. Maybe give them a book on understanding autism as a Christmas present?

Familiarity

Christmas Day is just the three of us. There are no visitors. There is no Christmas dinner with party hats and other such paraphernalia. The Boy has his usual food and bedtime is the usual time with the usual ritual of a story and his Classic FM.

The Rules are that there are NO rules when it comes to autism. Each person is different. Some love Christmas, some don’t. All autistic people are affected but not necessarily in a negative way.

Me? I find Christmas stressful BUT it’s also the season of fairy lights and I BLOODY LOVE fairy lights!!

As a child I used to lie on the floor under the Christmas tree and stare at them for hours on end. My Nan, having downed a few brandies, would say, “You’re a funny little girl” I used to wonder why she was calling me funny when I hadn’t said or done anything funny. Now I know she was calling me weird. MY OWN GRANDMOTHER!!

Christmas is difficult for me in ways which most people wouldn’t understand. I’m not a Christmas hater – it’s just that there is too much going on and that sends my anxiety orbital. Social media is crammed with Christmas. TV is bombarding us with adverts/mini-movies for the hard sell and it gives me a headache. If I could cherry pick bits of Christmas it would be lights, carols and the act of giving. You can keep the crowds, commercialism and my pet peeve, ‘Secret Santa’.

I don’t suppose it helps matters that my father decided to shuffle off his mortal coil on a Christmas Day. To lose someone you love on any day of the year is bad enough but to lose them on Christmas Day is epically crap. The image of Dad’s lifeless body while Noddy Holder screeched “IT’S CHRISSSSSSSTMAAAAAAAAAAAAAAAS” is forever seared into my memory and while I fight to bring forward the memories where he was the life and soul of Christmas, this one always wins.

As regards The Boy, we try to keep things as close to normal as is possible. Whatever ‘normal’ is.

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Panic Disorder: When The Fire Isn’t Out

 

Panic disorder is like a fire.

At worst – a raging inferno.

Your body becomes sensitised and responds to everything as if it’s a threat and each fearful response releases more stress hormones into your body. It’s like throwing petrol onto a fire that’s already out of control..

So, you work your backside off to get better and in time those do flames die down. The panic attacks reduce and are less severe or they stop altogether. You’re no longer in fight or flight mode 24/7. You sleep better. You feel better. You think you’ve recovered.

So, you stop doing the things that helped you to feel better..

This is where you make a big mistake because those embers are still burning away..

The fire isn’t completely out.

The way it works is this: Your body has been sensitised for a long time and even though you feel better, you still have a higher than normal level of stress hormones knocking around in your body. These are the burning embers, if you like. Meaning that it doesn’t take much for the fire to be rekindled. Then a few months down the line you wake up at 4am with your heart thumping in your chest. You feel sick and dizzy and the full weight of despair punches you in the face.

There’s Fear, suitcase in hand, with a big smile on it’s fugly face.

HEY HEY HEY!! I’M BAAAAACK! DID YOU MISS ME?

Fear doesn’t wait for an answer. It’s already pushed it’s way past you and before you know it the little shit’s sitting with it’s size 10 feet up on your imaginary sofa.

WTF?! How did this happen?!

Here’s how..

You went back to your old habits and for a while your body tolerated it because you were less sensitised, but when you have been nervously exhausted it really doesn’t take a lot for things to get out of control again. The good news is that there are signs that let us know us that our stress levels are increasing.

  1. Increase (or return) of addictive behaviours
  2. Increase in obsessive compulsive behaviours.
  3. Rumination
  4. Tensed muscles
  5. Inability to complete tasks.
  6. Seeking reassurance.
  7. Completely losing your shit over trivial stuff.
  8. Living in the past or the future, never in the present.
  9. Avoidance behaviour.
  10. Insomnia.

These are all signs that anxiety is flaring up. Those embers are now flames but it doesn’t have to escalate into a full-on inferno. Recognising these warning signs gives us the chance to address our stress levels BEFORE things get out of hand.

The Fab Five.

Five important steps that will put you back on the road to recovery.

  1. Diet
  2. Relaxation exercises
  3. Thoughts
  4. Sleep Hygiene
  5. Acceptance

Diet

Have you lapsed back into poor eating habits by eating crap? By crap, I mean sugar-laden or fatty foods? or caffeine? The foods that made you feel shite when you were poorly?

A reminder.

Eating such foods releases CORTISOL into the body. Cortisol is a STRESS HORMONE.

If you want to get your cortisol levels down – you have to watch what you eat and drink. Boring, I know, but it depends on how much you want to kick this anxiety shit out of your life?

Relaxation

When was the last time you did some relaxation or meditation? Chances are you’ve gone from doing it religiously every day to when you can be arsed or never at all. It’s good practice to do some kind of relaxation EVERY DAY, even when when you feel better because it helps to keep the stress hormones down. Mindfulness lowers cortisol levels. FACT.

Thoughts

Be aware of your thoughts. Are your thoughts in the past or in the future? They should be mostly in the present. Thoughts about the past can produce pain if your dwelling on painful events whereas thoughts about the future can produce fear because the future is unknown. Fleeting thoughts about either are fine, necessary even in order to make plans. The problem is when you are living in the past or the future (or both) instead of the present.

Sleep Hygiene

How are you sleeping? If it’s poorly. What are you doing differently? Are you on social media before bedtime? Or watching stimulating TV? If so, remove all the electronics and read a book. A really boring book and aim to be asleep by 10pm.

Are you ingesting caffeine (inc chocolate) after 3pm? If so, stop. Caffeine is a stimulant. All you are doing is ramping up the stress hormones.

Are you lying there thinking about problems? If so, try mentally put those worries into imaginary balloons (or whatever you like) and watch them float away. You can address them the next day when you can actually do something about them. You can’t do much in your rollers and nightie, can you?!

Acceptance

Acceptance is the most important of them all.

You must accept every bewildering symptom.

You must accept every bewildering thought.

You must accept that you will have crap days.

You must accept that you will have some monumentally crap days.

You must accept that the road to recovery isn’t short.

You must accept that you need to keep doing the things that made you feel better EVEN WHEN YOU FEEL BETTER.

It’s called MAINTENANCE.

As long as you fight against your anxiety, you will never beat it and I do mean, NEVER. Those embers will keep on glowing with the potential to flame up at the slightest bit of stress.

Fear is the firestarter – the twisted firestarter. Deprive fire of oxygen and it will be extinguished. Deprive Fear of stress hormones and it becomes powerless. Make no mistake, Fear will try to knock on your door again and again but each time you will become more adept at seeing him coming..

The day you no longer react WITH FEAR to Fear, is the day you’ve well and truly beaten that nasty little shit and with time (and effort) you will put that fire out completely.

 

 

Testing Testing

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Last week The Boy took his SATs. For those who don’t know what they are – SATs stands for Standard Assessment Tests.

SATs are taken in year 2, 6 and 9. They are not about passing or failing. The purpose of these tests is to see what level your child is working to in comparison to those born in the same month. They are controversial for this age group. However, this post isn’t about how I feel about the tests but about how The Boy coped with them.

The tests were discussed at our last review meeting. The Boy doesn’t cope well under pressure so we needed to know how they planned to meet his needs during this stressful time. I was more worried about how he would cope more than the tests themselves because as well as being autistic, he’s one of the youngest in his year.

Although the SATs for The Boy’s age group are informal with no strict time limit, the school understood that he would require longer than the other children – especially when it came to writing. Because he gets overwhelmed when faced with lots of questions at once, they broke his down into a small chunks then let him have a break. Also, as he is still using the palm grasp and as writing is a challenge, he was allowed a scribe. So with the knowledge that they had covered his problem areas, I could relax as much as an autism parent can ever relax.

My job was to keep him as calm as possible during the week with lots of cuddles and reassurance. I was extra careful of which battles I picked because I needed him to start the day as relaxed as possible. So if his Lego was left all over the floor, I left it there because the biggest and most important thing for him was to keep his anxiety at a minimum.

The tests are a big deal for most children but for an autistic child they can be incredibly overwhelming but the school couldn’t have done anymore for him than they did and once again it proves that we chose the right school for our son.

The thing about The Boy is that he is academic. He excels in maths whereas I failed miserably to grasp the concept of basic multiplication, let alone mind boggling stuff like algebra or logarithms. I was (and still am) creative whereas he struggles to hold a pencil properly which makes writing and drawing an issue. He hates writing and the main reason is because it physically hurts him. Another reason is that his mind works a lot faster than he can physically write the words down, so he gets frustrated and ends up in tears or in meltdown. The school encourage him to write whenever possible but they understand that there will be times when it will be futile to push him and then they allow him to do his work on the computer. As they say, it’s the work that is important more than whether it’s written or typed.

The Boy has a photographic memory, as do I. This should stand him in good stead for exams but I wonder if, like me, it will be the case that the understanding isn’t always there? For example, he was able to recite his entire 12 times table at the age of four. Not many children can do that but while some people thought they had a child genius on their hands, I had an inkling that it was simply down to his ability to recall information, especially about stuff that interests him. Having said that he is now showing that he can work things out as well. He loves maths (the weirdo) it calms him, whereas it had the opposite effect on me. I ABSOLUTELY HATED it!! Also, I was crap at it – which didn’t help.

I know he’ll do well in history because he’s fascinated by it, just as I was. He’s just done a topic on the ancient Egyptians at school and he really got into it so I bought him the Horrible Histories book – Awful Egyptians. Incidentally, he loves the Horrible Histories programme, especially the talking rat,¬†Rattus Rattus. I like Stupid Deaths. It’s funny because it’s true. Woo!

The week ended with one final test and then the children were allowed to watch DVDs and play with a huge box of Lego that the teacher had brought in. Being a massive Lego fan, this pleased The Boy and kept him focused throughout the last test. Every child received a ‘Star of the Day’ award and The Boy received the Head Teachers Award for his effort during the week. His teacher also sent a note home to say how proud she was of him and how he had exceeded her expectations. My boy showed off his stickers with pride.

I’m enormously proud of him because it was a challenging week and he got through it, with support of course, but he got through it without any major problems. The interesting thing is that he is developing an understanding of his condition and he is getting good at recognising when he is becoming overwhelmed and what the consequences can be. For instance, Year 6 were being visited by some owls and The Boy LOVES owls so he and the rest of his class were told they could go and see the owls if they were good. My amazing son made the decision NOT to go outside at playtime because he knows that’s where most of the ‘bad stuff’ happens so he didn’t want to risk not seeing his beloved owls. Impressive eh?

Part of my job as his mum is to guide him towards an independent life and this week has given me more hope than ever that this can be possible. He’s clever and just as his brothers are able to do what makes them happy, I want him to be able to do the same. There comes a day in every mothers life where she realises she’s no longer needed. I’ve been through it twice and it’s bittersweet, believe me. There is relief that you’ve done your job well and they’re independent of you but your heart breaks for the same reason. They’re your babies and they’ll always be your babies and they’ll always love you but they no longer need you – at least not in the practical sense.

More than anything in the world, I want to go through that again. I want to see him go out into the world and and live his life. Apart from teaching him how to do the practical stuff, I teach him how to understand himself and I do believe it’s starting to pay off, bless him.

Thanks for reading.

Sons, Sand & Sauvignon

 

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Autism – Life After Diagnosis

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The BBC is currently running a series called The A Word which is based around a little boy who has autism and his family’s struggle to come to terms with it. So far, his mother has struggled to come to terms with the diagnosis and while I can understand why some parents might feel like that – it wasn’t my experience..

Autism was suggested as a reason for his behaviour when he was 3 years old but prior to that we hadn’t considered it as an option. I knew very little about autism so I researched it and soon realised that he ticked all the boxes. One year later he was diagnosed.

The formal diagnosis came via a phone call. The pediatrician had told us unofficially that our son was autistic but she needed the full report before she could make it official and she was waiting on the speech therapist who hadn’t yet seen him in clinic. A change of plan on the day of his speech therapy appointment threw The Boy into a major meltdown to the point where the therapist was unable to work with him. As distressing as the meltdown was – we were quietly pleased that this would be going in her report. A few days later later the consultant phoned and gave us the official diagnosis of Autism Spectrum Disorder with Sensory Processing Disorder.

How did we feel?

Relief, mainly. We had concerns for the future, but what parent doesn’t? Before that I was more worried about him not receiving the diagnosis or having to wait because that meant he wouldn’t get the full support that he needed.

Having read a lot of blogs from autism parents it’s clear that we’ve been lucky. We’ve had no problems at all in getting an assessment, diagnosis and subsequently the right support. I know that many parents are not so lucky but each of us can only speak of our own experience as we find it.

Why Go For A Diagnosis?

Some people live their entire lives knowing they are autistic but never getting assessed formally. When you look at the figures for the amount of people in the UK who have autism, I would suggest that the actual figure is much higher. For some people, they know and it’s enough.

Early intervention makes a massive difference. The Boy copes in mainstream school with one to one support. Without it life would be very different. When I was a child, Leo Kanner’s narrow opinion of autism still influenced attitudes and my son would have been labelled a troublemaker and most likely expelled.

A diagnosis can:

  • Provide relief to the person and their family.
  • Allow access to services only available with a diagnosis.
  • Give better understanding of how to cope with any problems.
  • Provide access to financial support.

How To Get a Referral

Our journey was different to a lot of families as our son’s nursery manager approached us with the suggestion of autism. The child psychologist observed him at nursery and agreed that he should be assessed whereas most parents start with their GP. The one thing I would urge all parents to do is to document unusual behaviour when it happens and note what was happening prior to it.

If you suspect your child has autism:

  • Make an appointment with your GP. Prepare notes on what you want to say in order to get the most out of your ten minutes. If you feel you require a longer appointment, request one.
  • Keep a diary to log unusual behaviour.
  • Not all GPs understand autism. If you are not satisfied, ask to see another one. Trust your instinct!

Diagnosis and its Effect on the Family

Every parent/family reacts differently to diagnosis. For some it brings a sense of relief, for others they grieve for what they feel they have lost. It’s important to understand that your child is still the child that you’ve always loved. The only difference is now you understand that they have a condition and it’s down to you, with support, to ensure that they reach their potential in order to live their life to the fullest.

Siblings

Caring for an autistic child can be all consuming but you need to make time for your other children. Remember that autism affects the family as a whole.

Looking After Yourself

Caring for an autistic child can be mentally if not physically exhausting. It’s important to take time out for yourself in order to re-charge the batteries. Don’t be afraid to ask for support and accept it when it’s offered.

Talk

The one thing that’s kept me from going completely doolally is being able to talk about how I feel with other autism parents and sympathetic friends. Being able to talk (or type) things out can make all the difference in those low moments that we all experience. I’ve also phoned the NAS helpline a few times and they have been helpful and informative.

The helpline number is 0808 800 4104

Autism doesn’t begin with a diagnosis. It’s been there from the start and it will be there in the end but the right support can make all the difference. The difference in The Boy after three years of support is nothing short of amazing. He is loved and accepted for who he is because he goes to a wonderful school with people who care. More importantly, he is happy.

I gave some thought to potentially burdening him with a label but the benefits of diagnosis outweighed the negatives, especially with him being so young. Hopefully when he comes to leave school in twelve years time- having autism will no longer be an obstacle to employment thanks to programmes like Employable Me which highlighted how valuable an autistic person can be to the workplace when given a chance.

Ours is a relatively positive story but it’s not the case for everyone. There are some children whose autism is so severe that there is little hope of an independent life and that must be absolutely devastating for their parents to cope with. It certainly puts things in perspective for us. Life can be difficult but we know it could be a lot worse..

Life with an autistic child is an emotional roller coaster or at least that’s how I see it. There are highs and lows in every day. Sadness and joy. Hope and despair. Resignation and determination. Courage and fear.

But always there is love.

Sons, Sand & Sauvignon

 

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Crazy Bonkers

‘Mummy, I PROMISE not to go crazy bonkers today.’

How my heart melted to hear those words..

The Boy was referring to his meltdowns because he was going on a play-date.

The last play-date was back in November and resulted in me having to carry him out of my friend’s house kicking me and screaming. OH picked us half way home and The Boy proceeded to scream and kick the back of OH’s seat. He fought OH as he carried him across the road and into the house. It wiped him (and us) out for the rest of the day. As meltdowns go – it was one of his worst.

Most autism parents will know what a meltdown is and they will experience challenging behaviour on a daily basis.

What is challenging behaviour?

  • Self-injurious behaviour – any activity where a person inflicts harm or injury on themselves.
  • Physical challenging behaviour – hair pulling, kicking, punching, biting (or in his case, ninja kicks)
  • Pica – eating or mouthing non-edible items like dirt, stones and stuff.
  • Smearing¬† – people smear can be due to medical or sensory reasons.

The important thing to remember about challenging behaviour is that it has a reason.

Such as:

  • Difficulty in processing information or what I call ‘busy head’.
  • Unstructured time – for instance – at school this would be playtime or free-play in the classroom.
  • Over or under sensitivity to sensory stimuli like noise, light and smells.
  • Changes to routine.
  • Feeling unwell
  • Tiredness
  • Being hungry.

If a child struggles to communicate it leads to frustration, anxiety and anger resulting in a meltdown.

What is a meltdown?

A meltdown (or going crazy bonkers) is a reaction to feeling overwhelmed and any number of reasons (or combination of) can cause it.

Some people make the mistake of thinking it’s a tantrum but there is a massive difference between a child who is having a hissy-fit over not being able to get their own way and one who is out of control due to sensory overload.

A meltdown is the last straw.

What can you do to help your child during a meltdown?

  • Never punish your child for having a meltdown.
  • Speak calmly – never raise your voice or shout.
  • Do not reward your child for calming down after a meltdown as this may lead some children to understand that meltdowns get them what they want.
  • Try and talk to your child about the meltdowns once they are relaxed and receptive.
  • Sometimes it’s necessary to restrain your child but this must only be in situations where they could harm themselves or others. The Boy sometimes likes to be held firmly but other times he can’t stand to be touched. If he is in danger, we have no choice but to restrain him. This is incredibly upsetting as a parent.

Preventing meltdowns

  • Learn to understand when your child is becoming overwhelmed.
  • Distraction can sometimes stop a meltdown it it’s tracks.
  • Establish routines and stick to them. Prepare your child for changes to routine as far in advance as is possible.
  • Pick your battles. Try not to sweat the small stuff as you’ll need your energy for the big ones.
  • A hungry child is a meltdown waiting to happen.
  • Reward positive behaviour – when they get it right in social situations, BIG IT UP!
  • Keeping a behaviour diary can help to identify some of the triggers.
  • Teach your child relaxation techniques.

When The Boy goes ‘crazy bonkers’ he becomes aggressive. Being 4ft 2 and strong he is capable of doing some serious damage. This is the part of his autism which I struggle with and unfortunately it’s his most problematic area.

The Boy isn’t a naturally aggressive child. His default setting is to make people happy so for him to lose control means there is stuff going on in his head that he is unable to process.

How it began

The Boy’s behaviour was noticeably different early on and people put it down to the ‘terrible twos’ but I instinctively knew it was more than that – I just didn’t know what.

One day (aged three) he had an epic meltdown. One minute he was smiling – the next he was yanking out my hair and hitting me in the face. My bewilderment only seemed to spur him on. I understand now that the change in my facial expression must have upset him even more. I needed to put some distance between us so I put him in his room (removing anything that could hurt him) and closed the safety gate. Then I sat on the stairs and listened to his tirade in a state of shock. I had never experienced anything like it. He threw his toys down the stairs then I heard the door slam off it’s hinge. Three years old and he could take a bloody door off?

This doesn’t bode well for his teenage years!

*hysterical laugh* *makes mental note to go open-plan*

At that point I did what instinct told me to and held him. He was shaking with rage but I wrapped my arms and legs around him and rocked him back and forth. Initially he fought me but slowly calmed down. He slept for four hours afterwards which was unusual for him as he only usually manged half an hour but he was exhausted. As he slept I sat and stared at the wall. My mind was in tatters and my heart was heavy. Something definitely wasn’t right and I was scared. At that time I was keeping a journal so it was documented and four years later it’s hard to read.

A few weeks later he started nursery and the manager recognised the autism straight away. With our agreement the child psychologist was brought in to assess him. A year later he was officially diagnosed with ASD and Sensory Processing Disorder.

The rest is history.

To see our child lose it in spectacular fashion is hard to say the least. We’re not talking feet stamping tantrums here – we’re talking total and utter loss of control. It rips my heart out to hear him scream that he hates us but I know at that point he needs our love more than ever.

Our lives revolve around preventing meltdowns but it’s not always possible and the ones which happen in public are a whole different kind of stress because people can be judgmental and unhelpful b**tards.

I have meltdowns but mine are mostly silent. I shut down whereas The Boy explodes. For me it’s like having too may tabs open on the PC and everything locks up. The only way to remedy it is to shut down and re-boot. For him, it’s like the entire thing blows up.

Four years on and the meltdowns still happen but not as often because he is developing coping skills where he can take himself off to his quiet place when he starts to feel overwhelmed. Progress is slow but it’s progress and that can only be a good thing.

He may not be able to promise me he won’t go ‘crazy bonkers’ again but I can promise that we will still love him when he does.

“The kids who need the most love will ask for it in the most unloving of ways”. ~ Unknown

Sons, Sand & Sauvignon