Summer Holidays Diary Day 7- 'emotional rollercoaster'

Day 7- 🗓

So it's 10am on a Sunday morning and we were up with the larks at the airport to spot an Air Malaysia ( it's a rare one apparently!) ✈️
His usual remote spot had a lot of cars parked up so instantly he refused to even see how busy it was. 🚘🚗🚕

So we trekked up a blumin' hill to an even remoter spot on the other side of the runway. (Luckily for me 'cos I didn't have time to shower this am)

There is a fantastic visitor centre here at Manchester Airport and all weekend they are holding a weekend of family events ( can u see the bouncy castle way off in the distance?) 🎡 we can hear the loudspeaker way off in the distance now

But despite how much he would love the exhibitions/ talks and planes on display.... here we are on the remotest part of the runway miles away from any human, which is just how he likes it!🚶

Yesterday my husband was torturing himself saying it's such a shame our son wouldn't go to the visitor centre and it would be lovely if we could have all gone as a family. 👨‍👩‍👧‍👧

And he's right, I often have those twinges of 'if only!' It's only natural I think to have those emotions, of confusion and jealousy of what other families get up to...and I won't feel guilty about it or pretend that I never have these feelings .

Because It's an emotional roller coaster being an autism parent and we take the rough with the smooth everyday. 🎢We love our kids unconditionally for sure, but if I could make him less anxious I would in a heartbeat!

So we have had to accept that for my son this is his fun! This is where he loves to be and the crowds at the event would simply cause him too much distress and anxiety, so it would have been no fun for any of us....especially him.

It's one of the hardest things to learn to deal with as a parent I find?!

Anyway folks, I hope that whatever you're doing today brings you as much enjoyment as standing here watching his beloved planes brings my son

And I promise as soon as I get home I'll jump in the shower
Mrs M

2nd December - Expectations

Accept that your Christmas will look a bit different to everyone else's.. And that’s OK!

You may only manage short visits to family and friends, they will understand just warn them in advance.

Be prepared for things to become a bit unsettled. School is all different too and this can be tricky for kids to cope with. So accept that December will be wobbly for all of you.... and roll with it.

Don’t worry if your child doesn’t want to join in with all the fuss.

It's OK if your child doesn’t want to open their presents in front of everyone, let them set the pace.

Make sure you plan lots of chill time.

Don’t worry if your child goes back to their old toys and seems ungrateful They are just struggling to take it all in. Introduce toys slowly one by one.

Make life as easy for yourself as possible eg- At the school fair if you don’t have time to bake... don’t worry, you're not alone.. just send in bought cakes and don’t stress.

Send a Facebook message to everyone saying  that you're not doing Christmas cards this year as its such a  massive job to undertake, and make a charity donation instead.

Don’t let other people pressure you or your child to join in.. This is your life...your child… and you need to be in control.

Celebrate the uniqueness of your family and enjoy the moment without worrying about what your missing out on.

Remember no one's Christmas is perfect so relax, go with the flow and be happy to think outside the box.

Just keep swimming....

“Just keep swimming, just keep swimming, swimming swimming,” who have would have thought that the Disney character I find myself relating to isn't a princess trapped in a tower but a blue fish with a memory problem! 

As a mother to a child with Autism believe me when I say that I often feel like I’m swimming against the tide.

You see support services don’t always come easy for children like my son, it can be a daily struggle getting the right help. And our family life is anything but ‘normal.’ We have even been known to clear a restaurant on occasions. So I know a thing or two about the judgemental glare of society and the added pressure this brings to families like ours.

I have to admit that sometimes it can all just become too much and I feel like I’m drowning. I wonder where I am going to find the strength to fight another battle, never mind keep my head above the water.

And ironically it ends up being the most mundane of things that usually makes me sink - like the washing up for instance!

Last night I walked into the kitchen to face a ‘mountain’ of dirty dishes. I took one look at it all and immediately felt defeated. Defeated by the chipped bowls and coffee stained mugs, and defeated by the never ending stream of crap that seems to come my way. So I slammed the door muttering some obscenities that I won’t repeat here and stomped I off to bed in a right old sulk!

But do you know what, when I tentatively opened the kitchen door this morning that mountain of dirty dishes wasn’t half as bad as I had thought it had been. It was just my mind that had been playing tricks on me because I’m a pessimist you see - always thinking the worst.

What I should have done last night was said - so what!

It’s quite freeing really, going with the flow. And when I think about it, more often than not a positive that can be found in most situations. Even leaving the dishes!

So what if I go to bed with pots in the sink, in the grand scheme of things does it really matter – No is the answer to that, because my hubby might give in and buy me that dishwasher I’ve been after for months if I let them pile up. Tactics that is!

So what if I’m not one of the 7 million people watching Sunday night feel good TV, I have to watch it on catch up TV because my son is always too anxious to settle down on Sundays - I can fast forward the ads when I watch it later in the week anyway = happy days.

So what if my morning shower happens at 10.30 pm at night because my mornings have to focus on getting my son to school with as little stress as possible, not the state of my hair  -  I mean I was never a morning person anyway.

So what if the hubby and I have to book a day off work to have date afternoon because we can’t get a sitter at night - We can often get a good two for one deal midweek at the local Harvester pub.

So what if we have to take family occasions in turn as my son can’t cope with big family gatherings – It means we get to spend some quality time with our daughters when it’s our turn to attend, and the spouse at home gets remote control rights all evening. Bonus!

So what if we holiday in the same place year after year because my son can’t cope with uncertainty – At least that way we always know what to expect so there are never any nasty surprises or cockroaches under the bed.

So what if my shoes of choice are pumps and not heels in case I have to dash to intercept a child or remote control from flying across the room! - I can’t be doing with blisters at my age now so its comfort all the way for me.

So what if I have to be home by 10.30pm on a night out as my son worries about me if I’m not back by the time the news has finished - As I have gotten older I am glad of it to be honest,  I would much rather be tucked up in bed with a Horlicks anyway.

So what if I had to give up my job to care for my son - One door closes another one opens as they say. I would never be sat here talking to you if I was still at my day job.

So what if the most communication I can get out of my son is via text because he finds talking about how he feels face to face so hard - I can screen shot his messages and keep it forever as a treasured memory, and use it to embarrass him at his 18^th.

So what that I spend half of my day filling in forms and phoning people to get my sons needs met - If I’m honest it’s making this mama bear all the stronger for it. Grrrr!

So what if my son only wears certain socks due to his sensory issues, when we find ones he likes we buy 5 pairs – And that means that I don’t have to spend hours hunting for those odd ones that the resident sock monster likes to hide from me.

So what if we have watched Harry potter 100 million times as it’s my sons’ special interest - At least now I know what spell to use in case of an invasion of Demetors – “Expeliamus!”

So what if my son has to go to a special school as that’s where he is best placed to learn and grow, he’s happy and accepted and feels like he belongs there –  And after all that’s all we ever really want for our children isn’t it, whatever school they go to.

So what if I lose some friends along the way due to our restricted social calendar - True friends will never leave my side and I would rather have 2 or 3 true friends than 10 hangers on who just want me for me drunken handbag dance moves.

So what if we are not a normal family - 'Who needs normal anyway!' - I’ve learned not to believe Facebooks perfect family portrayals. Everyone has their own story and challenges no matter how perfect their lives may appear on screen.

And finally the biggy, so what if my son is Autistic - He is still the same little person, no matter what.

The diagnosis may have come as a shock to me, and even knocked me sideways for a little while. But my son is unique and wonderful and I’m not going to let other people’s judgement affect how he feels about himself. And so what if people don’t agree with my choices, they are not living my life and don’t have to walk a day in my (comfy) shoes.

So maybe next time if you feel yourself drowning, try and say ‘so what’ to yourself and swim away. Swim away feeling the freedom of being carried by the tide for a little while.  Picture yourself floating off on an inflatable bed, cocktail in hand, and humming to yourself like the little blue fish “just keep swimming, swimming swimming.”

Us mums don’t always have to swim against the tide you know, it gets exhausting after a while. So from one blue fish to another – “when life gets you down, do you know what you gotta’ do?”

                                        Just keep swimming, swimming swimming!

This blog was written for Special Needs Jungle. The original post can be found here- http://www.specialneedsjungle.com/so-what-i-cant-always-swim-against-the-tide-with-my-asd-son/

Friends and family

Friends and Family

So this can be a tricky one for us parents I have to be honest folks.

Most people in your family circle and friendship groups will be wonderful, open to seeing things from your child's perspective and want to help you in any way that they can.

But sadly there will always be someone that just doesn't 'get it'.

No matter how hard you try they just see your child as naughty or that you should be tougher on them. That your child will grow out of it, or they could do a better job than you if "you just give him to me for the day and I'll soon sort him out". Ever heard that one?

I have to be honest and say that as hard as it is to be on the receiving end of this, so often it does comes from a place of love. I know, I know it doesn't make what they say and do any easier to take, but it could just be that they simply just don't understand.

Or sometimes the driving factor could be that they feel helpless and out of their depth with it all, and not knowing what to do can be pretty daunting. Especially for grandparents that could feel they may have missed out on a relationship with their grandchild if they don't like giving hugs, or going to nannies for tea. And then if you add into the mix the fact that they just don't really know what autism means, well you can see how family tension can rise and friendships can simply drift apart.

"He talks, he laughs he looks you in the eye, how can he be autistic I don't understand"
How many of you have ever come across this from someone in your family or from a friend? That's what Joe's Grandad says in the 'A word,' a series that is currently showing here in the UK.

And despite its flaws I think a programme like this on mainstream TV can only be a good thing really. If it gets families talking, gets aunts and uncles, cousins and grandparents thinking about autism and the impact that it has on family life, then I think that has to be a positive step in the right direction.

But for those that don't make the effort to understand, well I have learned over the years that if people can’t take the time to get to know my son, then it’s not worth me stressing over... it’s truly their loss not mine!

Because he has so much to offer.

Yes living with autism can be tough, but that's not my sons fault. Autism puts incredible strains on families but usually because parents like us have to fight for services, and deal with a world that sees autism as a burden.

And sadly I have drifted apart from so many of my close friends over the years because I couldn't go out like them. I was either tied to being in by a certain time, not able to get a sitter, or I had no money. Not to mention the battle with depression I have had (which can be a bit of a party pooper at times I have to say).

And so much of my focus has been on fighting for services for my son over these last few years that its easy to forget how important it is to have fun occasionally. And those friends that have stuck by me through thick and thin are so precious to me. What makes them all unique is that they accept me unconditionally despite all the baggage I come with. They have taken the time to understand what it means to have a child with autism, and we work around the limitations and challenges of my life with no judgement or pressure at all. When you find people like that it can make even the darker days a little brighter.

So what can we do to help our family and friends understand our child better? Here are some things I have learned along the way..

Tell them information on a need to know basis, too much information all at once could overload the

Point them in the direction of some organisations that can help

Remind them that you want them to accept your child for who he is, no ‘cures’ or ‘treatments’ they need to learn to accept your child for all that they are, autism included

Talk about the spectrum, using a visual comparison like a rainbow can help them understand this concept

You will probably need to talk about eye contact and how your child feels about hugs as some family members could think our child is simply being rude if they don’t want to kiss the goodbye

Let them know how they can help you. It may not be possible for them to take your child with autism out and about, but they could help by taking your other children out for the day to give them some respite

Tell them no question is too silly, they may have a burning question they want to ask but may be worried about offending you

They may feel you treat your child differently or let them get away with things that your other kids can’t do. Explain to them why this is. How many of your child challenges are hidden, and how you have to be flexible with your parenting. Your child’s needs are unique and this has to reflect in your parenting, so they need not to interfere and support your decision

Explaining behaviour in terms of panic attacks can sometimes help people understand what is making your child upset or causing what they may view as 'unacceptable behaviour' such as swearing, meltdowns and refusal. If they can try and understand what is causing your child's distress it may help them see beyond the behaviour that they don't understand, and be less likely to criticise or pass comment.

Be honest. There have been times when I have been too stubborn to ask for help, or admit that I wasn't feeling right myself. I have tried to be superwoman and prove that I can cope. Most people want to help if you just let them in. It doesn't mean I'm weak or a bad parent. It just means I am human

And finally for those that don't want to learn to 'get it,'  just walk away. Let them go and move on knowing that your probably better off without them anyway . Remember they're the ones missing out. And you have too many other things to be worrying I am sure. Pick and choose your battles and listen to Queen Elsa when she belts out......

                           "Let it go, let it go"

(A-Z of Autism Acceptance Month April 2016)

Seeing beyond the behaviour

Behaviour

Having autism means that I can find it difficult to express myself. I am on high alert most of the time because the world I live in can be very confusing for me. So my emotions can consume me and I can appear to go from 0-60 very quickly.

But think of my behaviour it as if it was an iceberg.

There is so much happening inside me that you cant see, that it can appear to you like I explode out of nowhere. But my behaviour is often my way to communicate to you that something is wrong.

I cant always tell you how I feel when I feel overwhelmed. If you look for clues and try to understand what is happening in my world you can usually work out what could be causing my distress....

If I am crying at the school gates and my mum can’t get me in through the school door Maybe I don’t know what’s happening at school today. Maybe all I need is for someone to tell me step by step what my day will look like.

If I am pacing up and down the room It might be my way of calming myself down. I am probably stressed and anxious and the adrenalin in my body is building higher and higher. If you push me at this point I may lash out or run away so give me time and space

If I am chewing on my sleeve Chewing on things can help me concentrate and focus. So that’s why I do it. Don’t tell me off, give me an alternative such as a chew bracelet or gum.

If I scribble all over my work I could have really low self-esteem or find the interaction that comes with praise difficult to handle. I don’t know what to say or do in response.

If I run down the corridor I could feel trapped and panic, so my natural instinct is to run away or lash out and I don’t want to hurt anyone so running away to escape the situation is my only option.

If I lash out I probably feel backed into a corner with no escape, I didn’t mean to hurt you but I need you to give me some space.

If I look at the work in front of me or refuse to do something It’s probably because I don’t understand it, I am afraid to have a go or it’s not clear enough. I need to see a clear beginning, middle and end. If it is too vague, open ended or difficult to make sense of my immediate reaction could be to just not do it and refuse.

If I wriggle and fidget on the carpet I could be keeping myself regulated and focussed as the language could be too fast or complex for me to follow and I am starting to switch off. A fiddle toy, reduced language and visual support could help me when I need to focus.

If I put my hands over my ears I am not being rude. It could be my way of shutting out all the distractions that are distressing me.

If I push into someone It could be that I have sensory processing difficulties and I don’t realise how hard I actually pushed, I may have thought I only tapped them.

If I interrupt or don’t answer your question I am not rude, I may not understand the social rules of conversation and don't understand that I have to wait and listen when others are speaking. Make sure you say my name first so I know you are talking to me.

If I take over during games It can mean that I don't know the rules, I can find it hard to see things from your point of view and I can struggle with the concept of losing.

                                                      You can help me by-

• Keeping your language clear, slow and concise
• You can give me some space
• Acknowledge and respect how I am feeling
• Provide me with an escape from the situation
• Make sure I know what is happening and what to expect
• Not seeing my behaviour as naughty and avoiding negative language
• Seeing things from my perspective

Autism acceptance month A-Z (April 2016)

Autism acceptance

 Acceptance

                                     

For me April is a great way to raise awareness, but to be honest running a page and having a child on the spectrum means that autism doesn't just simply begin and end in April for us.

We live it day in day out.

And awareness is great, don't get me wrong I am all for autism awareness... but what's even more important to me and my son, what will make more of an impact on our lives day to day, is true acceptance.

Acceptance of his needs, acceptance of  his challenges, acceptance of our family and most importantly acceptance of him!

But what does that really mean? Why isn't awareness enough? Well on its own awareness just means that for a few days a year people change their profile pictures and the words 'autism awareness' pop up on Facebook... then its gone.

But we are still here.

Facing the daily battles of living in a world that can see autism as a challenge.

So what then for us?

Yes people may now be more aware of the word autism from awareness month, but do they truly understand anymore about autism? Will it have made an impact on my sons life at all?

To me acceptance means much more than simply raising awareness... It means educating myself on what being autistic feels like by listening to adults on the spectrum. Learning from them and respecting their needs and wishes.

It means taking the time to understand the world through my sons eyes. Looking beyond his behaviour to see what he's is telling me.

It means not trying to change him into something that he's isn't. Embracing his differences and never seeing him as less.

It means accommodating his needs, being flexible and seeing what he can do instead of what he cant.

It means supporting other families who are new to autism and letting them know that its not all as bad as it may seem at first.

It means celebrating achievements and diversity within the autism community.

Acceptance means fighting for an education system that isn't one size fits all. A system that understands autism, and embraces our children's talents.

Its about providing adequate access to services and facilities for children and their families.

It means being there for a new mum who is worried about her child, being a listening ear or simply a word of encouragement.

It means recognising the impact autism has on families and supporting them through the minefield of red tape and politics.

It means more than just acceptance that autism exists.

So that is why  throughout April I will be doing my bit to raise awareness like everyone else, but I will also be challenging you to do more than simply change your profile picture. I will be asking you to think in ways you may not have before, and asking you to see things from a new perspective.

I will be sharing the voices of adults on the spectrum, and encouraging you to really begin to understand what living with autism really means by sharing my A-Z of autism acceptance.

Autism acceptance month A-Z (April 2016)

You may see a label, where I see my son!

What do you see - A cobweb, or a beautiful moment to be captured?

You look may look at my son and see a child with autism. Or you may look at my son and think he doesn’t look autistic at all.

But when I look at him all I see is his bright toothy smile, his infectious giggle and the long locks of brown hair that he hides behind when he talks to people, I see my son!

(Who also happens to be autistic).

One of the wonders of humanity is that two people can look at something and see very different things, it’s all a matter of perspective.

You could see a hurdle where I see a challenge

You may see sadness where I can feel joy

You may see symptoms where I see strength over adversity

You may see weakness where I see bravery

You may see a puzzle where I see wonder

You may see a label where I see my son

             If all you see is the label when you look at him, then you are missing out on so much!

But this is the complex world that my son has to navigate his way around. And as his mother, I had to learn how to support him to make sense of it all.

How could I do that when we live in a world in which people’s opinions differ so vastly, and their past experiences shape how they interact with him?  How could I understand how he feels and help him make sense of this crazy world, and help others see who he really is?

Simple… I had to change the way I viewed my sons’ world. The ups and downs, the highs and lows, and the challenges he faces daily. Not to mention the inner strength and talents he has within.  I had to change my perspective, and step into his shoes to see the world as he sees it…

"You see people can just think that I just choose not to leave the house, and I am a recluse. But imagine a world in which complex interactions, and going beyond the safety of my house floods me with all-consuming anxiety that can make me feel physically sick. Now can you understand why stepping outside is so daunting for me sometimes mum?"

"People can think I don’t understand what they are saying, so they talk over me or ignore me completely. However try to imagine how it feels to struggle following the ebb and flow of conversations. Not knowing how and when you are meant to respond, and what people’s facial expressions actually mean. It’s no wonder that I avoid conversations with people who don’t know me very well."

"People think I have no sense of humour or can’t take a joke. But instead try to imagine living in a world where people say things they don’t really mean and make jokes about things that just don’t make sense to me. It’s not that I don’t have a sense of humour, I am really funny and make people laugh every day. In fact my mum says I have a giggle that is infectious (although I don’t know how because laughs can’t be infectious can they?")

"People think I want to control things. For a second just picture how it feels not be able to predict what is going to happen next, and how out of control this would make you feel. And maybe then you will realise why I feel the need for control or routine."

"I struggle to see the bigger picture of what’s happening around me and seem like I am in my own world, and people thing I am ignoring them. Just remember that my world is rich and full of intense experiences. I see and feel things so vividly that sometimes it can be hard for me to switch my focus to anything else."

"Sometimes people think I am rude or that I don’t care about other people’s feelings. Try and keep in your mind that to me people’s rules are unwritten, confusing and mysterious. Imagine not being able to understand how other people feel, what they could be thinking or even that they are giving me clues about their emotions by their body language. It’s not that I don’t care, I just don’t experience emotions like you do."

                                                   Just imagine.....

How would you feel if you had a really creative mind full of amazing ideas but no one recognised your potential just because you didn’t have the words?

How would you feel if you had so much love to give, but people didn’t know because they didn’t enter your world to feel it for themselves?

How would you feel if you could see the beauty in the things other people ignored and people dismissed the things you were passionate about?

How would you feel if people wanted to change you, and said that the things you like to do weren’t socially acceptable?

How would you feel living in a world that doesn’t recognise the potential that lies within you because of your label?

                                        
Imagine… just for a minute put yourself in his shoes!

How frustrating it must it all be at times for him?

If people don’t learn to see things from a different perspective; my son’s perspective, then they will never see the wonderful talents that lie within him. They will never see beyond the challenges he faces and the labels he carries, to view what he has to offer the world.

And this is why I do what I do. This is why I fight so hard to raise awareness, understanding and acceptance. No matter what day or month it is. Because autism is part of who he is, but not all that he is.

I want to open the window on perspective and blow away the cobwebs of ignorance. So that my son can hopefully live in a world that is far less confusing, much more aware, and has a greater level of acceptance than ever before.

It’s all just a matter of perspective.