The Hangover Effect

Most of us will have had our fair share of hangovers over the years; although few will have had one recently. I can’t even remember the last time I had the chance to get a hangover never mind actually having one. My late nights with friends in a pub are distant memories. 

Anyway I am not here writing about my past antics and the subsequent hangovers; but the hangovers that C gets. Before you ask, no I do not let my 5 year old consume alcohol! These are the hangovers caused by events that happen and aren’t the ones that can be cured by a few pints of water, paracetamol and bananas!

Many of us know how anxious our children get before a family gathering, a friends birthday party or an outing to the zoo. But I have found that the after effect of such things can, and usually do, go on far longer than the anxiety that consumed him before. This is what T and myself have called The Hangover Effect!

The latest example of this and I grant you an extreme one. But none the less a very good example of how something can cause so many issues for so long. And something that pretty much no one actually realises, gets or understands.

The first week of the Spring Break we were meant to be going away for 4 nights to stay with family. A week before, due to a partially bad meltdown that C had, I ended up getting a slipped disc in my back. As much I tried to push on, I realised even 5 minutes in the car was pretty eye watering so 6 hours was just not an option. C was given the option that he could go with G his little brother and T is Dad, and I stay at home to try and get better or we all stay at home. Well as we had spent the last 2 weeks talking to C about going, he had it in his head he was going to go, with or without me.

In itself this was an amazing achievement and I was so proud of not only my crazy husband for thinking this was a good idea, bearing in mind neither of our children sleep (both have yet to sleep through the night), C finds it very hard to be away from home at the best of times, so his behaviour shall we say is challenging on a good day. And neither of the boys have been away from me for more than 2 nights and that was when I went away and they stayed at home.

Somehow they survived. But on their return C’s behaviour just deteriorated to an all-time low. In the past his hangovers have lasted 1 – 3 days depending on what we have done. They are times when we can pretty much do nothing with him. His PDA becomes highlighted with a massive pink highlighter and not even the smallest demand can be placed upon him without stuff being thrown, him screaming and if pushed a meltdown follows. 
But this hangover is the mother of all hangovers. It has been over a week and I am not sure I can yet see the light at the end of tunnel.

Normally given time these hangovers pass and we get back into our normal, if not slightly crazy routine. But I think this time, C was pushed beyond a point he should have been. The family is paying the price of taking C away from his secure structure and comfort zone. I think we all need to push our children a little bit so they keep on achieving new things. Learning they can do things and hopefully resulting in their anxiety very slowly reducing. But I also think we can push them too hard and expect too much. The hidden disability, even at times hides from the people who not only know about it but are also trying to understand it. C is very good at keeping it together at times. Too many people, including family, seem to think he is coping when he is not.

Hangovers are real and although often they are a result of C having, had a good time.  There is a limit on how long they should last. If by us doing something means he has a couple of bad days, caused by an activity he has enjoyed albeit found hard, I can just about justify that in my head. 

But if by doing something results in more than 3 bad days, we need to learn from that and take more notice of the warning signs.  Going to a pub and having one too many and waking up the next morning with a banging head is one thing but going to an all night rave and drinking until dawn isn’t a great plan; and a plan we’d pay for, for many a day after.  

TheTribe

I was once told that only special people get chosen to be special needs parents.  In my opinion that is crap.  We become special needs parents because it is something that happens randomly; it nothing we do and nothing that a higher power decides.  Its life and it’s something as a parent we have to come to terms with, deal with and then get on with.

Some people find it easier than others to except that their gorgeous bundle has extra needs.  It is an extremely hard and emotional rollercoaster.  But your child is your child.  By letting yourself fall apart isn’t going to change your child.  It is not going to make the diagnosis go away and at the end of the day, falling apart will not help you or your bundle.

This may sound really harsh and unkind, I promise I don’t mean it to.  But for every day that we don’t accept things as a parent is another day we are not truly supporting our child.  A diagnosis is by no means the end of the world.  It is a signpost to help point us in the right direction, to begin to start to understand the road we are on.  I will never say the road is easy.  It’s bloody hard and most of the time it’s up hill, bendy and bumpy but it can also be amazing.

I never cried or fell apart when I found out that my son was autistic; I already knew and I think I was just glad that finally we had an official diagnoses so we could start getting the help and support both my son and our family needed.  However I would be lying if I said, I had never shed tears; I have shed many, many tears.  It’s bloody hard having a child with autism.  You fight battles that you never dreamed you would have to fight.  You fight for help, support and just to keep yourself and family together.  It is never ending, totally consuming and completely exhausting.

Friends and family really do try and get it but it’s impossible for them; you can only truly get it, if you are living it.   I survive the shit and heartache by being able to share it with people who just understand it.  This is The Tribe. We all need one and the special needs Tribe is a tribe that just cannot be beaten.

It is not always easy to find your tribe.  But it’s so important that you.  It is all too easy to let yourself get lost in the thick mist of parenting your child and focusing all your energy on everyone else but yourself.  I have found that I spend little, to no time on myself anymore.  I rarely see my old friends and find it much easier to stay at home than risk going out, which can all too easily turn into a horrendous nightmare of survival and wishing I had never bothered leaving the house.

But I have discovered The Tribe and it is amazing.  You don’t need to look far for it.  They are there on Facebook, blogging away, setting up get togethers and running support groups.  We are not alone, and we don’t need to do this alone.  If you haven’t found The Tribe yet, go and look.  They are all there, waiting to lend an ear, have a chat and share their crazy life with you.

I had not realised until very recently that I was part of The Tribe.  It had never really occurred to me there was one.   It took a friend to point it out to me.  And I am so glad she did.  We all feel alone at times, especially at the beginning of our long rollercoaster of a ride, but we aren’t.  If you share the good, bad and ugly with someone else who truly understands, you will stop worrying quite so much and start believing that you aren’t going mad, and most importantly that you are doing a pretty amazing job rising your crazy bundle of joy!

 

Discovering the Positive!

I am a mum of two boys, my eldest is 5 and autistic.  Although I was not sad, upset or angry when C was diagnosed I have found since that it is all to easy to let autism consume you.  Before you know it you are drowning in the day to day issues, the meltdowns, obsessions, ridged routines, paperwork and the endless battles with the outside world. You forget to smile, laugh and have fun.  You feel like you are treading mud, stuck on a roller-coaster with no exit, no brakes, no way off and no safety bars.  Your stress levels seem forever on the raise and you feel at times that you can not breath.

But you must! You have no choice but to carry on.  You must look and find the positive in every situation.  However impossible this may seem at times, it is vital that you do!  Things can get all too heavy and all too quickly if you let them.  You can’t remember when you last properly slept.  When you managed to have 10 minutes on your own when you mind wasn’t racing; worrying about something or thinking about what you should be doing.  And you certainly feel you should not be sitting down on the sofa for a minute and enjoying a hot coffee, rather than hiding in the loo to get that much needed minute to yourself.

I am not one to talk, I struggle to enjoy things like I used too.  I am on constant alert.  I really cannot remember the last time I came close to a good night sleep.  In-between the worrying, the thinking and my two children who either won’t or can’t sleep. Topped off with my body being filled to its limit with coffee so that I can try and keep functioning during the day. I know that I all to easily forget to smile and laugh.  However I have started to try and make myself think about the positives; trying to find one in every situation.  I am trying to find the funny side to life again.  If you look into my little world at times it really is quite funny and most certainly a little crazy.  The problem is that when it is happening to you, all day, every day, its very easy to stop seeing the funny side.  BUT as long as you still have it in you to laugh at yourself and see see quite how crazy things have become you will begin to feel better!

So I thought I would share the ‘positives’ and ‘funny moments’ I have had this week.  You will need to bare with me here, I am pretty tired and still a little dazed from falling down the stairs so my sense of humour might be a little wonky….

Routine is so important; never dare stray from the routine. Its far too risky and dangerous.  I have made the same pack lunch for the past 225 days, and counting. I know each week what I need to get in, I never need to think what C might like today, I already know. Ham sandwich, white bread, cut into 4 squares with no crusts. A handful of salt & vinegar crisps; made ONLY by Walkers. An apple juice, a Petits Filous and a home-made biscuit. BOOM that is lunch done, and I have not even had a coffee yet.

We have three different variations of tea. I have either done chicken nuggets, bread, cheese and dip dip (tomato ketchup). Sausages, bread, cheese and dip dip or home-made pizza with dip dip, everyday for the last 3 years.  Seriously you would think that maybe something different for a change would be nice but NO.  No two foods must touch on the plate.  Dip dip must be well away from everything, although everything will be covered in the stuff any second now.  I HATE dip dip; it smells horrid, it is horrid.  But I now have packets in my handbag and in my car.  The thought of running out in my head must be more scary, than the thought of dip dip exploring over the entire contents of my handbag.  If this ever happened the whole handbag and everything inside would be in the bin before you could count to 10!

Every Saturday we go swimming and then go to Granny and Grandpa’s for lunch. Even if they are not there, we still have to go! We have the same lunch, sausage rolls (Hot dogs) with dip dip every time.  Seriously we really do have to go when they aren’t there.  Crazy you see, but kind of funny….

C is a wanderer. He will happily let himself out of the house and disappear. He also would climb out of any window, irrelevant on which floor he happened to be on.  This means every window in our house have super window locks. You can open them but not even a small child could get their head through the gap. This results in our house being extremely secure. I’m fairly sure more secure than many prisons.

We never have an issue on non uniform days. No panic about what to wear and C trying to fit in with his friends. He will not go in home clothes.  He never normally does, so why today… Thankfully as I can’t remember my name most days, I am never going to be the ‘bad mother’ who forget and sent their child to school with uniform on when all their friends were in jeans and T-shirts.  Quite the opposite, the one time I sent him in home clothes he wouldn’t get out the car and then it took his teacher an hour to talk him into the classroom.

We save a fortune on holidays. I once dreamed about going on amazing family holidays.  Saving up to take both boys to Disneyland or Legoland. But we are lucky if we get to go and stay with the in-laws for 5 days.  We will save a fortune on holidays.  My dream holiday now is a night away with T without the boys.  Chance would be a fine thing but one can still dream….

Family outings aren’t common.  The planning and stress to go out for the day is extreme.  And then when we get there, we have about an hour maybe two if we are lucky and then have to go.  Leaving a trail of destruction behind us.  So again we are saving a small fortune.  Whoop whoop – I told you every cloud has a silver lining.  C is as happy being outside in the middle of nowhere, surrounded by no one, climbing a tree or a rock.  Pretty stressful for me to watch but he could not be happier.

C has a lot of sensory issues.  He is not a fan of wearing clothes.  As the stress levels raise so the clothes come off.  Not only does this mean I have a warning that things need to calm down, demands massively reduced and he needs to be left on his own  But also during the holidays and weekends unlike most mothers who’s loads of washing increases, mine massively decreases!  We also save a fortune in coats.  When C was little we used to have massive battles putting coats on him.  T would go crazy at him.  We could quite easily ruin an outing before we even got out the car over a coat.  But C runs hot.  He cannot control his temperature like most people.  The hotter he gets, the harder it is for him to control himself.  So unless it is raining or he wants a coat, we just don’t bother.  He doesn’t need one so why put one on.

C truly hates change.  He finds this extremely hard.  I once made the mistake of moving the kettle in the kitchen, and when he realised he had a massive meltdown.  A lot of people find this hard to believe but small things can cause massive problems  We need new carpets in our house.  I hate our carpets.  But we can’t change them because C will go mad.  I can put a kettle back, I can’t and will not put old carpets back.  So as much as I hate them, and seriously want to change them, I have a very good reason not to.  This makes T very happy because, do you know how much new carpets cost?!

T and I never go out.  I honestly think we have been out 3 times together in the last 5 years.  The main issue being is, how many people would you trust to look after a child who is as unpredictable as C?  Very few, if any!  If he has a meltdown when we are not about, I am not sure anyone else could cope.  He does not sleep well, he is very prone to night terrors and he is a wander.  So this does mean finding a babysitter is a little tricky. We had a wedding during the summer that T and I both really wanted to go to together.  My mother in-law drove 7 hours to come and babysit for us!  It also means that people have to come to us for supper.  T and I can always have a drink, and boy do I need a glass of wine by 6pm.  There is never any pressure on T to take me out for dinner which is a good job, because he would be rubbish at remembering and I would get mad at him.  Us not being able to go out, saves endless arguments.

I am fairly sure between T and myself we almost single handedly keep coffee growers in business.  As with many parents of autistic children we consume far to much coffee than is healthy but without it I would be even more rubbish than I already am.  I think we also do a pretty good job at supporting the wine industry.

I have come to realise that C comes out with the funniest things.  He watches a lot of documentary about Dinosaurs.  So he has developed a fairly adult vocabulary.  This means that he uses what he has learnt but when it comes out of a 5 years old’s month, it can be extremely funny.  I got told the other day “Mummy you are so full of hot air that you might just take off”.  I had to leave the room because I was laughing so much.  Last weekend we spent 2 hours outside with our real camera taking photos of a T-Rex, a Brachiosaurus and a Diplodocus.  I had to go a different way to school for two weeks because it was the only way we could see dinosaurs as they were migrating.

I have worried a lot about G.  I have often worried if he also has ASD.  But I think it is all leant behaviour.  He at times does not have the best role model.  When my 2 year old tells say “go away mummy, I need my space”.  Then cries 30 seconds later because you have left the room.  You have to laugh.

I have discovered that I am a much stronger person than I ever thought possible.  I have come to realise how important the small things are and that people worry about the stupidest things.  I certainly know who my friends are and although I might not see them often, I know how important they are.  Life is short, unpredictable and you never know what is around the corner.  But however shit life seems to get at times, there is always someone else having a rougher time than you.

So you see, if you look hard you can always find a positive, even if only small.  And I promise you that having a laugh about stuff will always makes you feel a little better.  So have a look and see what positives have happened today – I bet you’ll find at least one!

Autism – what is really all about?

Autism Spectrum Disorder, or ASD for short, affects one in every 68 children in the UK.  Autistic children grown into Autistic adults.  This means that 500,000 people in the UK are autistic. Unbelievably this means that two million peoples lives are touched by autism every day.

There is a spectrum of autism for a reason and its as wide as its long.  No one person is the same as another; pretty much like any human being; everyone is an individual.  However, this does create a small problem when it comes to trying to explain autism.

I don’t believe many people can honestly and truthfully say that they understood autism until they were directly effected by it?  I defiantly couldn’t! However five years ago I had a son, C who was born with autism.  I now live with it every day.  It never goes away and it never will.  I have had to learn a lot and fast.  Sadly, but very unsurprisingly, one of the biggest things that I have come to realise is the complete lack of awareness there is about autism.  I myself have just said I knew pretty much nothing about it and yet I now want, and expect everyone else to get it.  What people do know, seems to have come from either the film, Rain Man or the book, The Curious Incident of the Dog in the Night.  OK, this might be slightly unfair but its not that far from the truth.

Right, here goes; here’s my take on ASD.  I can only tell you about it from my point of view.  I am no autism expert but I am an expect in my son and he has autism.  I am still learning all the time and I will never stop learning.  I am not Autistic and I am not claiming to even begin to understand what it is really like.  If only I could, I would be able to help C so much more. But I am a mummy who is trying endlessly to fully understand it, and help others to get it!

So here is a sneaky peak into our little world which I hope might help explain it just a little.

C is now 5, and I am still waiting for a full nights sleep.  I was not expecting to be sharing our bed with a 5 year old. Anytime from 11pm we will have a visitor.  You may say, put him back into his own bed.  Trust me we have tried.  But one thing no one wants is a meltdown at 3am. Before melatonin it would take an average of 2 hours, ever night to get C asleep. Melatonin does not last all night, so if C properly wakes up from about 2am, that’s it, he awake. And he doesn’t do awake quietly.  Autistic children do not sleep.  It’s not just parents saying that, it’s true; horribly true, kids with ASD don’t sleep. Coffee was invented for parents who have autistic kiddos.  So there is a reason we don’t tell C to go back to his bed.  Every night after being kicked in the head, duvet stolen and told to move, I get up and go and get into G’s bed.  What little sleep we do get is far too precious to worry about bed sharing.  T and I have not woken up in the same bed for over 2 years and I can guarantee you that this is not uncommon in an ASD household.

I never dreamt that when, as a family, we all snuggled down on the sofa to watch a film, we would actually watch the same 5 minutes, over and over again. I never thought that for two months of my life I would have to watch all three Toy Story films in a row, every single day.  I could never have imagined the extreme consequences of the TV box deleting off certain episodes of certain programmes.  Who would have thought I could have name all 52 Abney & Teal episodes or over 100 Octonauts episodes.  I also now know more about Dinosaurs than most trainee palaeontologists.  People with ASD tend to have pretty obsessive traits.  It is reassuring to watch the same thing over and over.  It brings comfort in the ever changing world around them.  Its also pretty common for them to become fixated on certain subjects, needing to know every possible fact going.  That is all they can talk about, not realising that other people are just not interested.  I have read so many dinosaur books and watched every dinosaur programme ever made, and not just once or twice.  Hundreds and hundreds of times – I don’t even like dinosaurs!!

You think your life gets tough when the WiFi stops working. Trust me, it’s really not that bad.  Pop over to our house however and see what happens.  Meltdown central springs to mind.  Now a meltdown is not a tantrum.  A meltdown is more of a panic attack. It’s not something that can be controlled and you can’t just make it stop.  A child having a tantrum can turn it on and off, they will make sure you are watching, and on a bad day, it might last 10 minutes.  A meltdown is very different.  You cannot snap a child out of it.  It can easily last for an hour and they don’t care if you are there or not.  I get hit, screamed up, anything and everything thrown at me; it’s horrid.  My first reaction now, if at home, is to move anything that can be picked up and thrown or that C can hurt himself on.  Followed quickly by me removing G as he is not older enough to understand he will be hit.  If a meltdown happens in public, which is one of my biggest nightmares.  I pick C up, screaming and kicking and run to the car.  Having to deal with a meltdown when not at home is bad enough, having to deal with judgemental looks and whispers from others about bad parenting is just one thing to many!

Meltdowns don’t just happen because the WiFi isn’t working.  The be honest, the meltdown hasn’t really happened because the Internet has broken but more because there was no warning.  Change is a massive issue.  Children with ASD need to be in control.  They need to know what’s going to happen next.  C hates the doorbell ringing, it means someone has turned up at our house without warning.  The house phone ringing is just as bad.  The postman now leaves parcels in the pouch.  He even signs for them himself because he has been screamed at so many times. I have been locked out the house in the pass when a delivery has arrived because C was so upset.

I have cooked more chicken nuggets, sausages and home-made pizzas than most.  And oh boy don’t cook the wrong kind of chicken nugget.  C can tell if I get red juice from the wrong shop.  As he can tell if his crisps are not “his crisps”.  Don’t ever think you can fob off a child with ASD with a different brand than the normal.  They will know and won’t eat it.  Don’t try and be clever and put the cheaper brand into the old more expensive branded packet; it doesn’t work.  Trust me, I’ve tried and failed!  I hate tomato ketchup, really hate it.  But I have it in my handbag, I have it in my car and I have at least one spare bottle in the cupboard.  C will not eat food without it and I am not taking the risk of not having any.  Bread needs to be cut up into squares, and only squares.  Food must not be touching on the plate.  Ketchup must not be touching anything, even though everything has to be dipped into it.  I am not a soft touch, but this is how I rock and roll these days!

Sensory problems are incredible common with people with ASD.  In our house this means that, if you have ever pop over, and are allowed in, you will have been very likely greater by a naked child.  I can often tell when C is stressed, because he takes off all his clothes.  I have a pile of pretty much unworn clothes upstairs because they are itchy, don’t feel right, the label is in the wrong place or something else feels funny.  I can’t use washing powder that smells, I have stopped wearing perfume.  He hates me using hair spray and I have had to stop wearing wool jumpers; they are scratchy!  It can be snowing outside but we cannot get C to wear a coat – he doesn’t realise it is cold!  He doesn’t like the rain but loves playing in the bath.  If he gets too hot, his body can’t cope and this can easily result in a meltdown.  When he gets really excited, stressed, or has been running around, he gets bright red stripes across his face – his go faster stripes.  This is his body showing me that I need to step in and slow things down.  He is becoming overloaded and overwhelmed and any minute now he will have a meltdown.  If he gets really excited he sweats like he has just done a 5km run in the middle of the summer.  This is another warning sign that he needs to stop.  Easier said than done.  He is not in a mood to stop now and so by me trying to stop him and calm him down, in itself can result in a meltdown.

Autistic people are very literal.  We have had a few laughs about this when C has pulled his pants down – looking for the ants, whilst looking at you like you are crazy.  We have hunted for the cats and dogs when raining hard.  And don’t think you can say “just give me a second”.  That means he will count to 1, you have one second!

Something I had always imagined when T and I had a family was the lovely family trips and holidays we would enjoy.  This is certainly not something that we have ever managed.  Many Autistic people hate big crowds, hates lots of noise and find being away from their safe and familiar surroundings of home very hard.  When we do venture out, we get somewhere when it opens, so avoiding queues and hopefully as many people as possible.  We normally manage an hour, 2 hours if we are lucky before it all gets too much.  Going away on holiday, even staying with family is extremely stressful for everyone. Only our house is C proof,  We have window locks on all the windows, we know the door is always locked.  We know he can’t escape from the garden.  He has his space to hide in when things are too much.  We have the right food, the right bed, its our home and we can control what goes on.  It also doesn’t matter if he is naked all day, jumps for an hour on the sofa or just runs around the house.

This leads me onto one other thing that I have always found extremely hard.  Most children, especially when young don’t like to wander far from their parents.  They like to know where people are.  However C has never been like this.  I am not allowed to go away without warning and don’t ever think I can go away for a night but he will freely just disappear.  He never says he is off, he won’t let you know where is is going.  He just goes.  He has no fear or understanding of consequence.  He knows where he is, so of course you also do… He will just let himself out of the house; locked or not.  In the past we have found him in the garden, up trees, on my fathers tractor and more times than I can count by the stream, and often in it!!  He will climb out of an upstairs window, run out into the road or jump off a massive rock.

Life is full on.  Life is crazy and I don’t really ever get a break.  T and I have never managed a night away without our children since they were born.  I think we might have been out for 3 meals together in the last 5 years.  Its not easy getting someone to babysit and to be honest, I wouldn’t be able to trust most people to fully understand what is involved.  Being a parent of someone with ASD can be seriously lonely, and handwork doesn’t really sum it up.  You can’t meet up with friends, you can’t go to the park and nothing can be done on the spur of the moment.  There is no cure for autism.  But what there needs to be is better knowledge and understanding.  This would mean better awareness.  I am never after people to feel sorry for me.  I don’t feel sorry for me,  I just want a more understanding world for my son to grow up in, and I don’t feel that is asking that much!

Halloween.  How scary can it be?

Halloween is not my favourite time of year, I am not really sure it ever has been.  As a small child I confess, I used to love dressing up as a witch and flying around on my broomstick!  And nothing could beat carving up a big orange pumpkin into something that, might, kind of resembable a face, then plopping a candle in it so it glowed.  But I never went trick or treating and the only people I used to “scare” were my parents and maybe the dog!  I now view this delightful “holiday” as anything but a holiday.  As I sit here writing, not only am I feeling somewhat nervous about the witches and other terrifying creatures that will be lurking around outside but I am also planning our escape!

One might wonder quite how scary halloween can really be.  But if you have a child with ASD you might well already know the answer.  If you have a child that hates dressing up and really hates other people dressing up, and most certainly is no fan of people turning up unannounced, ringer the doorbell and then worse still taking things away with them.  It really does all adds up to be, one very scary nightmare for the whole family!

As a parent of a child with autism I want to protect C from things that I know he will hate.  But also I want him to try and learn to like things.  Its so hard to try and get that all important, yet impossible balance.  I want to feel I am helping him develop, providing the tools he needs to thrive and most importantly I want him to be happy and enjoy being a child.  Not hate it and want to hide away from things.  

Take the good old birthday party for example.  I don’t want never to take C to one just because he finds them really hard; I really do believe one day he will like them.  Slowly he will begin to understand what happens when he goes to a party and therefore he will become more relaxed and actually enjoy the whole experinece.   But if I never take him to any, he will never learn that actually he can manage to go even if only for an hour.  However, with Halloween I feel it might just be one of those rare occasions that we just quite literately buckle down the hatches and wait for it to go away.

Last year was the first year that we lived somewhere where there were lots of lovely families who would all be celerbrating Halloween.  We new that we would have plenty of people knocking at the door, running around the streets all dressed up, shouting, laughing and having fun.  This delightful image of young people enjoying themselves just brings fear and dread into our household.  We locked the door, unplugged the doorbell, drew the curtains and pretended we weren’t in; not that easy but we managed it.  

This year we could spent the weeks talking to C, explaining about Halloween.  Trying to get him to understand that lots of people will be dressing up, wearing wigs, painting their faces.  People will be coming to our house, ringing the doorbell, and asking for sweets.  There will be a lot of noise, fun and laughter, and not to worry because it only happens once a year.  He will be safe and nothing bad will happen!  But I don’t think my 5 year old boy, with ASD and who is highly anxious will accept this insane explaination and be alright about it all.  I am fairly sure that as he gets pretty upset when the postman rings the bell or Tesco brings our weekly food shop that having monsters ringing the bell for 3 hours might just send him over the edge.  It’s pushing me pretty close just thinking about it.  

So although my little man loves being at home and finds spending even one night away very hard I think we might run to the hills and hide away for the night.  Have our own little adventure away from busy streets and other families having fun.   My time will be much better spent planning our night away, telling C where we are going and what we will be doing, than trying to get him to OK about the craziness of Halloween!

My Secret Super Power!

I have been inspired to write this blog because of some very special people in my life, and I am hoping you know who you are!!

I am not an amazing mummy, I have no special super powers, I am no better than any other mother.  I love my boys to bits but I still get cross at them.  I shout at them.  I don’t have endless patience, I cry, and I feel like giving up at times.  But I am not the only mummy out there having a hard time.  I know some amazing mother’s who are also fighting their own battles and yet still being super mummy’s to their children!!

Being a mother is one of the hardest jobs, ever.  I realise it was me that made the decision to have children, it was my choice!  But honestly, I did not give it that much thought.  I knew I wanted a baby, I knew I wanted a family, and I think that might have been as far as my thinking went.  But once you sign up for this job, it is not one you can quit, its not one you can change for an easier one.  You don’t get paid, you don’t get sick leave and you don’t get holiday pay, actually you don’t even get a tea break!  You are on call 24/7, 365 days a year, for the rest of your life.  I think even the best marketing company might have trouble selling this one.  And yet, here I am, having happily signed up for the job, twice!  Would I change it?  If I could go back in time and think about it a bit more, would I?  No of course I wouldn’t!

Since becoming a mummy, and one to not the easiest chaps.  I often have been asked by people how do I do it?  How do I cope with the meltdowns, the battles, the anxiety.  I have never really given it that much thought.  I don’t ever feel like I do anything special.  I do no more than any other mother does or would do for their children.  But since started to write and share my blog I have had a lot of people ask.  Well, this has got me pondering, because come to think of it, how do I do it?  How do I just not fall apart? Apart from T my long suffering husband and an immense amount of coffee during the day, finished off with a couple of glasses of wine in the evening, what is the glue that holds me together?

Well am I rapidly reaching the conclusion that maybe I might have been wrong regarding the lack of super powers I possess.  Maybe every mother has special super powers?!

My super powers are without doubt, my family and friends!!

So, this one is for you.  Not just my family, not just my old friends or my new friends, but everyone of you that has ever helped someone who was having a rough time.  Be it, giving an understanding smile to a mother who’s child was melting down in the supermarket.  Holding a door open for a father who was trying to run from a shop, child in arms, screaming and kicking because they had become overwhelmed by the other shoppers.  Giving a warm smile to a mother in the playground who was having a rough day.  Asking a friend over for a coffee when they needed someone to talk too.  For a hug you have given.  A text you have send.  For the never ending support you provide, be it big or small.  This is for you all, for each and every one of you, because you are amazing!!

I don’t want anyone putting me up on a pedestal and telling me how amazing I am.  I am not amazing, I am just doing my job.  Yes at times its shit.  My heart seems to break at the moment on a daily basis.  I can often reach the end of the day and wonder how I have survived and more importantly, how am I going to get up tomorrow and do it all again.  I do it because I have to, its my job as a mother.  I have two gorgeous boys who need a mother fighting for them.  I have a husband who goes to work everyday to support us, who needs supporting and looking after.  I can do it because of my super power; because I have amazing friends and an amazing family.

I get asked how people can help.  I have friends who feel bad because they don’t think they do anything to help.  Trust me, you all do more than you could believe.  The fact that I know you are still there for me, even though I have not seen you for months, and I have not text you and said hello; you don’t ever hold this against me.  The fact that when you do ask if I am ok, you don’t mind me talking at you for the next hour.  You don’t mind that you don’t get a chance to say two words because for the first time in weeks, I am talking to an adult, so can’t seem to stop!  The odd text saying hello, the wonderfully messages I have received since blogging. The knowing smiles I get at drop off and pick up at school, just saying; “I know, I get it, don’t worry” means so much.

My family are amazing and have helped so much in the last few years.  I know my parents are always there, day or night if I ever need them; this in itself helps more than they realise.  We have moved house to be closer to them, because of the support they provide.  My sister in law, who is a teacher, who is always at the end of the phone to help with visual timetables, social stories, and C’s EHCP!  My brothers who spend hours playing with the boys when they can, to help give me a break. C’s most amazing Godparents who bravely took on the role, who are not only fantastic with C but also provide never ending support to me.

In the last few weeks I have had a few pretty dark days.  I have cried far too much and at times have well and truly felt like going to hide in a hole somewhere, far away.  But then my super powers have stepped in.  They have helped me pull myself together and get going again.  Most won’t even think they have done anything, but how wrong are they!  So, thank you for being my secret super power, it’s the best super power a mummy could ever ask for!!

.

Dear Neighbour

Since moving into our house, I worry, pretty much the whole time about our neighbours.  To be honest, I think I spend my whole life worrying about stuff.  I realise some might think I am silly worrying about what others think because we cannot control that and when it comes down to it, I have more important things to worry about.  Up to a point I totally agree.  I so wish I didn’t care and it didn’t upset me, but I am who I am, and there is no changing that.  I think what really it comes down to is that I really don’t like being judged the whole time by others.  I don’t like people thinking I am a bad person or a bad parent, and all because of a lack of understanding.  It makes me cross, upset and sad.  I hate the idea of people looking at us thinking C is naughty, when he isn’t!  I hate the fact that I cannot protect him from others and keep him safe from judging eyes.  I hate him finding life so hard and then on top of that, other people not understanding!!

So here is my latest letter in my small but never ending quest to gain a bit for understanding for autism!

Dear neighbours

You must have often wondered in the past 18 months who on earth has moved into No.9.  Your lovely quiet, peaceful, family Cul-de-sac having been turned upside down by the disruptive family that has taken up residency here!  You must wish that your lovely old neighbours had never moved and sold to us.  Since us moving in you must have thought us rude, noisy, crazy and unable to parent our children.  I cannot deny we are noisy and a little crazy but I promise we never mean to seem rude and we spend more time than most parenting.

I want to try to introduce and explain a little more about our small but loud pack.  In the past I may have managed the occasional hello, smile or wave.  Some of you, I may have even managed a few more words, whilst seeming like I am only half listening.  I’d be kidding myself if I thought I had managed more. Often I have wanted to pop round and invite you over for a coffee, drop a cake off and say hello, get everyone over for a Christmas drink or summer bbq, but sadly I can never see this happening.

We really are not that much different to the ‘normal’ family, I promise. I am a full time mummy, to our two little mini-beasts C & G.  C is 5 and G is almost 3. T goes off to work everyday and works tirelessly to support as.  We feel safe and secure where we live and couldn’t ever complain about the family feel of our little Cul-de-sac.  We are happy, but I worry so much about how us having moved here might effect you.

I worry when we are out in the garden we upset you.  Having to listen to me shouting at C not to jump of the top of the climbing frame, every 2 seconds.  Not to spray water over the fence into your garden.  Not to throw the ball over the trampoline.  Not to push his brother of the top of the slide.  I realise it’s endless!  Never-mind C standing on top of the climbing frame, completely naked, again, shouting continuously at you “hello” at the top of his voice.  Then asking question after question and trying to spot dinosaurs!  You must hear us coming and hurry back inside, closing the door tightly behind you.

The times we are trying to get into the car and you hear me shouting at C, again, as he runs off down the road.  Or the screaming from C, that G has got into the car first so he didn’t win.  You must have seen me chase a naked C down the drive.  Seen us arrive back home and then watched me drive around in circles; after starting to drive up the drive, only to reverse back down, turn around and reverse back again.  The reason isn’t that I’m completely crazy but I have a child in the car melting down because I’ve gone up the wrong way, and I’m just trying to avoid having to deal with yet another meltdown.  Which is both exhausting for me but also for C, and can easily then last an hour.

C isn’t naughty, he isn’t rude and it’s not because I’m too soft.  C is autistic, as well as having Pathological Demand Avoidance (PDA).  I realise he doesn’t look autistic and doesn’t always act like he is.  But spotting someone with autism isn’t easy.  It’s by no means an obvious disability, it’s properly one of the most hidden disabilities out there.  This in itself can bring its own problems.  One of which is most people thinking C is naughty and rude and I’m a bad parent.

Life is never easy or straight forward.  PDA really means that C suffers from extreme anxiety.  Even the most simplest things can cause massive worrys and distress.  Because of this, he can become extremely controlling, sadly leading to people thinking he is rude and bossy.  A small change at school, me having moved the kettle in the kitchen or Daddy not coming back when he said, can all cause him to meltdown.

C has no idea of danger.  If given the chance he would jump out of an upstairs window, let himself out the house and just disappear, or find the biggest knife in the house and try and cut stuff up.  He has big sensory problems which means he is at his happiest naked.  He doesn’t understand that if it’s really cold, he needs to wear a coat, mainly because he does not realise he’s cold.  He does not get social cues, and he doesn’t realise that not everyone wants to talk to him even though quite often he does not want ANYONE to talk to him or me.

C hates anything happening that he wasn’t expecting. He needs warning about everything!  Even the house phone ringing can cause a meltdown.  So if ever you have come and run our doorbell and I have seemed completely uninterested in what you were saying, door only open a jar, with a screaming child in the background. Please don’t think I was being rude, or, now feel bad, but C was taken by surprise and he was just letting me know that he wasn’t happy!  If you have seen a pile of shopping on the doorstep, it’s because I had forgotten to tell him Tesco was coming.  So I wasn’t allowed to bring the shopping in, and I just needed to wait for things to calm down so I could carry it in to the kitchen undetected.

If you have ever heard me trying to get him to open the door, it’s because I have made the mistake of walking out into the garden for a 5 second breather when he is having a meltdown and I forgot to take the keys out of the door.  So he has locked me into the garden.  Because we have had to put window locks on all our windows, even if I could open a window, not even my head would fit through.

So yes I am slightly crazy.  But please never think me rude.  I never mean to ignore you when we are all getting into the car, but it’s just sometimes easier not to talk if I know it’s going to upset C.  A two minute chat with you could then mean I have to deal with him melting down for the next hour.  I am sorry for your peace being shattered when we go outside and I am sorry that you have to see and hear C having meltdowns most mornings when its time to go to school.  Everyday life for someone who is autistic is hard, really hard.  As a family we try every day to make C’s life as easy as possible but with him suffering from extreme anxiety and him, himself not understanding why, not being able to explain why he is so upset, so cross, so worried, we all at times find ourselves slightly stressed.

Each and every day we try and understand a little more, try and discover what helps and what causes him distress.  You all must at times feel like you too are stuck on our roller-coaster not being able to get off.  Please try and bear with us.  Please try and be patent and just try and understand.

Your very grateful neighbour at No.9