'Normal' service resumes

So it’s currently 2 am as I write this, I’ve tiptoed downstairs so as not to wake anybody (especially little man as that would not be pretty at 2 in the morning let me tell you!) The dogs are looking at me like with slightly confused sleepy faces,because I am sat scribbling my blog ideas in a notebook whilst eating hot buttered  toast.

Tonight I can’t sleep.

I must be mad, as I have to be up and fresh as a daisy (well .....Maybe more as fresh as a semi functioning human being) for the school run in just a few hours. But my brain is on overdrive!

I am very much aware of the fact that my last few blogs have been,well to say the least bloody depressing. Go on you know they have!! And let’s be honest you probably have enough depressing crap going on in your own lives I am sure, without reading all about mine.

But if I stop and think about it for a minute, it’s no wonder really. I have been put on meds as I am suffering from depression. So I suppose the nature of my writing naturally reflected that. I am now beginning to feel more human each day I as wake up (I was never a fan of the Zombie look at the best of times, and neither was my husband really if he was honest!) But I have learned a few important things about myself during these last few months .....

These blogs I started as a way to share stories about my amazing son. But my last few blogs have barely even touched on him. Subconsciously my focus shifted from him to me. It was my pity party and you were all invited. I think it needed to be though if I am honest. Us mums spend so much of our energy and focus on our kids, looking after everyone else that we forget about to look after ourselves in the process don’t we? Sometimes, just sometimes (for instance when having a teeny tiny mental breakdown) we need to focus on us. And if that means having my very own pity party for one..... Then so be it!

So I learned that I needed to focus on me, cos I felt so crap. I needed to get better... simple!

Does that make me a bad mother? No I don’t believe it does. Day to day life continued just with a less ‘in the room mum’ I did what I had to do to fill up my tank, to get better and to move on because I am a mum.  A mum to three wonderful kids that need me fighting their corner.

Secondly I think it’s also highlighted that I really don’t sugar coat anything. You can be assured when I say warts and all...I really mean warts and all!

I don’t lie or fill my blogs up with made up stories of sparkles and fairy-tales, candyfloss and loveliness. But neither do I want to write horror stories that do nothing to raise awareness and understanding. I am honest. It’s scary sometimes being as honest as I am. 

But if I am gonna do this I am gonna do this properly.

But c’mon I’ve gotta be a bit bonkers too haven’t I?? 

That’s the other thing I have learned. I mean I shared my flippin’ depression diary with the whole world of social media to see. What sane uptight British person does that? I now have to walk around Tesco and face people smiling, whilst thinking to myself, “oh cringe ... did she really read my confessions of finding being a mum hard!”

But finally and most importantly for me, I think I have discovered a love for writing. Its what I love to do.I have sat here for hours and hours drafting loads of blogs tonight whilst scoffing my toast. (All with a slightly less ‘pity party’ theme I promise) Re-shifting the focus back to my son because I feel as though ‘normal’ service is resuming..... Well whatever normal means?

‘Normal’ is unique to who you are, who I am, who my son is. ‘Normal’ is whatever makes us tick. ‘Normal’ is whatever you love to do, whatever you enjoy and whatever helps us get through the day.

So keep being your version of normal. I intend to, I will keep writing my blogs; bonkers, honest, warty and all.

I also promise to walk around Tesco with my head held high, regardless of what I share on here ... cos I am my version of 'normal'. My wonderfully crazy little family needs me and loves me, as much as I do them. 

And for that I am thankful! 

Mrs M x 

Taking it one day at a time

Hi all

So I have been adjusting to the antidepressants I have been put on by my doctor this week, and I can honestly say it’s been a pretty yucky week! I have felt at times like I have been hit by a bus and it’s been a struggle to get through the day never mind find the time to blog. I have felt a little bit spaced out at times and definitely feel like I lost my Mojo a bit.This depression is like my very own Dr Evil.

So this blog is a little bit different to my usual kind of writing as I thought it might me if help if I kept a brief journal of the first week or so on these tablets. I wasn’t even sure at the time if it was something I was gonna share, but today I read on the front of my teenage daughters English book something that inspired me. It said ‘write in a way that scares you a little.’ And this certainly does that!!

I’m either bonkers or brave for sharing my personal diary but hey ho you only live once eh...... 

It is as I wrote it at the time, I have edited nothing, so it’s my honest feelings each day.

So here goes nothing, this is my life over the last week and a bit as I adjust to my tablets and face each day.....

9^th SEP – Really struggled getting up this am. Got kids to school G thinks I need to go to doctor. I snap at him but then phone when he’s gone to make an emergency appointment. (Hate it whens he's right!) Felt sick in waiting room. Cried at the poor doctor think he was only a junior. Can’t face tablet yet. Take it at bedtime.... worse night sleep ever, twitchy leg, mind racing! Arggghh nightmare. How am I  gonna get up with kids in am?

10^th SEP- Blur day NO SLEEP AGAIN cant be bothered writing, too much washing to do, don’t know what I have to do today got kids to school OK,  tea then early bed again

11th SEP – NO SLEEP kids in school, got through day.....

12th SEP- Bad headache all day, have to go to bed.

Feel yuck, everything hurts lots of sleep cant move off bed, took tablet at night not this am to see if it helps

13^th SEP- Girls room is meant to be decorated this week, crap timing this feels like I gotta mountain to climb. Need motivation from somewhere?? ...but start to paint room .... could scream at anybody cos there's a bloody mess everywhere i look, I'm so snappy hate hearing myself so try and just keep quiet... feel like a zombie today

14^th SEP – Cancelled coffee with  Jackie, cant face it. Camhs in afternoon really don’t wanna go. Got really upset but she helped. Discussed a type of therapy can t remember name of it now..  but she told me to look after myself and stop feeling guilty. Gave myself another headache crying . Meant to be out with Sue tonight couldn’t face it so she came to me instead. Ate Chinese. Was nice evening... feel OK!

15^th Sep- Slept better, feel little less heavy headed. Met Kathy to talk about my blog I felt excited about future,it was nice to see her. Little man was in good mood after school telling jokes  we laughed loud, love him so much he made me teary tonight. I managed some writing tonight which felt good:-)

16^th Sep- Miss my mum this week. Miss my job. Shaky and nearly sick. So sleepy, struggled to stay up til after putting little man to bed

17^th SEP- Carpet coming for girls room so cancelled all things I had to do today. Stayed in house. G off work but out for the  am. I pottered and showered. Cuddles with dog. Felt like hibernating today

18^th SEP- Little man stressed out this am as Jeans for Genes day. I felt panicky in shop. Needed to eat felt sick. G took kids swimming after school and then we put  girls new beds together. Felt OK and enjoyed my dinner tonight.... felt hungry.

19^th SEP - Today.....I was up nice and early, showered, still tired but pushing through. Washing done clothes sorted and house hovered.  Today’s a good day, I’m still bit snappy but I have a clear head today. Might even attempt a movie tonight....

          Hopefully my Mojo is returning, I'm taking it day by day..bit by bit one little step at a time.

                                                                          Mrs M 

                                                                             xx

Mirror mirror on the wall,let me accept myself.... warts and all!

So those of you that follow my updates on the Facebook page will know that we have had two pretty tricky weeks away this summer. And we came back a little early from the last one. Cos the honest truth is that I was knackered. My son missed his WiFi and the routine and comfort of home, and we all were on top of each other in the caravan, there was no escape. I was gonna implode if I stayed there much longer.

(only joking)

Don’t get me wrong there were fab moments, and times when we all laughed together and had loads of fun. I suppose it was a week of ups and downs really, but I found it tough, and I was tired.....I will in time reflect on what happened and put things into perspective I’m sure, and laugh as I tell some of ‘the not so funny at the time stories’ (stories that include a shoe being launched at a slow moving car, a poor unsuspecting lady on the street having her bottom shoved from behind, and the epic daily battles of ......Caravan walls Vs The boy in the sleeping bag!!)

 But I’m not quite there yet ....just a little fragile at the mo!

Of course when we arrived home he settled back into his little room, he’s happy as Larrry. On the other hand I think I have been left a little shell shocked by the last few weeks and months.

When I sit here and think about it’s been a pretty shitty year really. My son wasn’t coping with mainstream year 6 so needed to go part time and I have home schooled him since Easter. I left my job to become his full time carer. And then there was the long transition and battle with the LEA to get him in the right school which took months. So he was only in his new school for 2 full weeks before we then broke up for the long summer holidays. There’s been no respite from the stress really for months now, so I suppose there’s no wonder I am looking a bit haggard is there?

I looked at myself in the mirror and I almost didn’t recognise the person looking back at me. Grey hair, bags under my eyes, no makeup, and a constant feeling in my tummy. Some of you may know that feeling of anxiety that can creep up on you. Well it’s crept up on me over the last few months and isn’t bloody going anywhere in a hurry! I’ve noticed it making me jittery when driving on the motorway. It’s making me pessimistic and snappy with my hubby over silly things like towels on the floor. And it’s making me dog tired.  I recognise it all too well.... I’m not daft I know what it is that’s creeping over me, its my arch nemesis who has visited me many times before..... And I know what I need to do. I will visit the docs next week. Judge me all you like but I’m not ashamed to admit it to anyone. The dreaded D word.....

Depression

It shouldn’t be taboo. It’s human, and normal, and shouldn’t be kept behind closed doors.

I know it’s not a sign of weakness. My nerves are rattled due to a long period of stress, and I know I need to do something about it. Not only for my sake but for my kids’ sake too...  They need a mum that’s firing on all cylinders.

You see my son lets everyone know when he’s anxious, stressed, or feeling damn right crappy. He gets it all out there and we deal with it and then he moves on. I reckon I could learn a lot from him really. 

Cos when I looked in the mirror the other day I did the opposite..... I thought to myself, mask it woman your OK, you have to be...  Sort yourself out, pull yourself together!! So I put on my makeup, died my hair and faced the day when all I really wanted to do was stay in my PJ’s and rest my fragile nerves a little, embracing how I was really feeling.  

Later the very same day my teenage daughter was messing about with a silly app on her phone. Basically it airbrushes out all your imperfections and makes you look ‘perfect’. She took a photo of me and airbrushed it. She got rid of my bags, my wrinkles, my chubbly cheeks, and my tired looking eyes. She made a ‘perfect’ version of me! But one thing the app couldn’t airbrush out was how I was feeling. That can’t be airbrushed out.

Just like when my son is feeling anxious, or overwhelmed.... We need to deal with it, recognise and embrace how he is feeling and then we do something about it and move on.

So that’s what I am trying to do. I am recognising how I feel instead of trying to airbrush it out. Being a mum is tough. It’s OK to find things hard. I am not going to let it overwhelm me and I am going to do something about it. I may have some PJ days but that’s OK, the odd one or two never harmed anyone!

And if anyone reading this has also been trying to airbrush out their feelings too, then please remember there’s no such thing as perfect. We’re all human, we all need a PJ day every once in a while.

In fact I reckon when my kids are all back at school later this week , (after visiting the docs of course) that’s exactly what I’m gonna do, with no makeup on, eating ice cream , and watching back to back Netflix.

My son has taught me to be me...the un-airbrushed version of me that is !!

Mrs M x

 (warts and all)

"You don't need the loo do you mum?"

Now this particular blog is a little embarrassing, and it’s of a personal nature.  So stop reading if easily offended, or you know me well and don't want to imagine me in such intimate details as I am about to now describe.

But I promised to always be honest warts and all ;-)

So look away, or read on, the choice is yours.... 

It relates to that unfortunate phenomenon that only women who have kids and have reached a certain age will relate to. You know the one; the sneezing, laughing, coughing = cross your legs, and needing the loo at the most awkward of times phenomenon.  You see it creeps up on you along with grey hairs, comfy knickers and  finding yourself all tucked up in bed at 10pm with a nice peppermint tea, and a good word search!! (When did I become my mother?!) 

Come on ladies I can’t be alone in this ..can I ?

So anyway, this 'cross my legs' issue is beginning to prove a little more tricky for me than most, due to my son. Let me explain. You see he hates public toilets. He really doesn't like using them and even worse than that he hates ME using them!!!

Well you can see how this poses a problem for me cant you. Whenever we arrive anywhere; cos I know I can’t, I inevitably need to visit the ladies room! And, I reckon he has some kind of sixth sense about it, cos the first thing that comes out of his little mouth whilst looking up at me with his little puppy dog eyes is “You don’t need the loo do you mum?"  Of course not son, I dutifully say through gritted teeth, whilst inside my little bladder is screaming.. Erm yes you do woman!!

So I have developed my golden toilet rules for whenever I go out and about with my son (I kid you not!)

1)     Absolutely no coffee or tea( of any variety) for at least 2 hours before leaving the house

2)     Double layer protection ( you get me don’t you ladies)

3)     Subconsciously avoid all taps/ waterfalls/ rivers/ basically anywhere within earshot of running water

4)     Think happy thoughts (“ reading a book, sitting on a beach, waves lapping the shore... ahh waves, water....STOP IT brain” )

5)     When thirsty I have a chewing gum ( it’s like having a drink with no liquid)

6)     Try not to think about the fact that my bladder is going to explode, use  SAS like distraction techniques to keep my mind occupied

7)     Think some more happy thoughts (“watching tele, eating Chinese food, with a nice long cold G&T..  ahh drink .....STOP IT brain!”)

8)     Undo my top button if getting really bad

9)     “Right come on son time to go home!” If all of the above has failed, and I just can’t take the pain anymore

10)Drive home thinking happy thoughts (“ I need the loo, I need the loo, I need the loo”), and then run in the house clambering up the stairs to the loo pushing my kids out of the way shouting “me first!!”

Ahhhhhhhhhhhhhh  ... knock, knock, knock.... “Muuuuuuum!!”  

 “I’M JUST ON THE LOO CANT YOU GIVE ME A BLOODY MINUTE!!!”

So anyway, this is all good and well. That is, if I remember my own rules.

You see yesterday I broke two of my golden toilet rules. I had a cuppa half an hour before going to the cinema to see ‘Inside Out’ with my son. To make matters worse once there, I was then fooled by the temptation of a deal in which I thought I was getting an amazing bargain on popcorn and a large coke. And it proved too much for my ‘oh I do like a good bargain’ mentality to refuse .......and I drank the bloody lot!!!

Well you can imagine cant you!

There was no escape for nearly 2 hours, cos I couldn’t pull golden rule number 9 out of the bag now could I? We were sat watching a film, and that would have been a one way ticket to meltdown city for sure!

So I sat, and I sat, and I sat, and trust me that drive home yesterday was a long one.

So OK OK...  lesson learnt, no more maverick rule breaking for me! I am happy to become my mum; drinking peppermint tea at bedtime and wearing comfy knickers. Cos my mum would never be dazzled by an offer that endangered her bladder and left her wishing she could actually tear her insides out..... Never mind sit watching it trying to remember where it all went so horribly wrong!

Mrs M

( all this talk of bladders ... I'm off to the loo;-) x

I blog to celebrate my son

I have recently dipped my toe into the social media world of Autism these last few months and I have been really surprised by the complex and political world out there, that naively I knew nothing about.

In simple terms I am just a mum. A mum to three kids, one of whom is Autistic. And a mum who felt alone for many years. As a result I turned to other mums online for help and advice. I suppose more than that I needed friendship and understanding from others who completely got me and my life. Not even necessarily to share stories about our kids but to just be there for each other in a non judgemental way.

So after many years of considering it, I started a blog about my life. And of course because my life is so intertwined with my sons the stories overlap. I have always tried to be honest and share my feelings because I know that the worst thing in the world is to feel alone.  My son had been in the forefront of my mind the whole time I have ever written anything.

My kids are my world. My son inspires me daily, and he has taught so much in ways I could never have imagined.  He is unique and wonderful and I love sharing his achievements with people on my blog. But there is also a flip side to this. Sometimes for us life is a challenge.  There is no way to escape that reality; fighting the system, other people’s perception of my son, people’s general ignorance and having ‘normal’ family life in general  to name but a few.

So I write about us, the challenges we face, and our wonderful and crazy family moments. But I have always been conscious of not disclosing my sons’ private details, and have tried to respect his right to not have every element of his life out there in the abyss of social media for all to see. For me it’s more about increasing peoples understanding of Autism, and connecting with other people who want to learn more, and people who really relate to our story on a personal level.

I honestly  had no idea that the Autism world out there was so divided; groups of parents, groups of professionals, bloggers, haters....

And most importantly Autistic people writing about their first hand experiences who deserve to have their voices heard the loudest out of all sections of the community .

But sadly I have seen several blogs and articles in the last few weeks that have challenged me greatly.  From people offering cures for Autism, abusive therapies that damage children’s perception of who they really are, to blogs that make you feel worse for reading them.

And I have increasingly sensed that Autistic people can feel their voice is being overlooked by well intentioned people talking about their second hand experience of Autism . So as a parent blogger played has played on my mind a lot.

I completely agree that every child deserves their privacy, and no one should be sharing their childs every detail in public for all to see. Because once it’s out there it’s out there forever. But keeping this in mind I also feel I have a right to tell my story and express my feelings. After all we all need to support eachother whatever our personal relationship with Autism looks like. I reckon we should all be on the same side. Fighting for more understanding, and celebrating the uniqueness of Autistic people like my son.

Unfortunately there will always be people that abuse their situation, as there is in every section of our society. There will be honest, insightful and helpful blogs and articles, and sadly there will also be pretty crappy ones that focus too much on the negative, and do nothing to raise genuine awareness and help people through the maze of support out there.

Whether we are Autistic, parent bloggers, ‘experts’ or observers, I think it’s something we should all be mindful of. We need to be honest, celebrate the good, and recognise the challenges out there for Autistic people and their families.

 So I will continue to tell my story, and follow a variety of people from all sections of the Autism community who share my ethos of celebrating my sons’ uniqueness and potential.  And I will continue to attempt to raise awareness, and reach out to people who may feel alone. I will make mistakes, but I am human and that’s all part of this journey we are all on.

 I choose to ignore the negativity out there. The unhelpful side of social media that makes me feel worse about our situation; the disrespectful, unhelpful, and darn right dangerous stuff out there. I choose not to encourage that voice by giving it my attention.

My blog celebrates my son.  My blog allows me to discuss the difficulties we face in a world that struggles to recognise and embrace my sons abilities. And my blog helps me know I am not alone in feeling like I do, and helps me be a better mum to my son.  That’s why I blog.

And if telling it like it is helps someone else in the process....  well then that’s an added bonus

Mrs M x

Postcard from my not so 'normal' family

This evening I am sitting here looking out over the rolling hills and mountains from our bedroom window at our holiday cottage here’s the view I have....Stunning isn’t it?

Well if this was a holiday postcard, what would I be telling you about?

The weather... it’s been pretty pants most of the week!

The cottage..... remote is not the word! (But that’s how we like it)

And I would be telling you all the lovely places we have been to and seen this week.

But this is no postcard from a normal family lol!!

 

My little man has been pretty hyper to say the very least for most of our time here. Holidays are never easy for him as there is so much unstructured time, new places and changes to his routine to cope with. 

And today I am sorry to say I lost it. You see being completely honest with you, at times  my son challenges my patience and inner Zen ! He makes me think about things in ways I could never have imagined before he was born.  It’s not like he looks like he’s Autistic, or is in a wheelchair. So that challenges my concept of disability and how to deal with ‘challenging behaviour’. Because when he becomes stressed and anxious like he did today, his hyperactive and impulsive behaviours ramps up and up.....  and up!! This is really hard to get your head around isn’t it?  And even harder to remember in the heat of the moment.

So in the car on the way to the castle today; despite the day ahead being planned, he was clearly struggling and his behaviour was becoming more challenging on the journey. To the point that when we arrived he was spitting, hitting out and had gone for his sisters several times. I sit in the back with them all to keep them safe and out of his reach but I ended up scraping my backside along a part of the seatbelt that was sticking out in the process.  Owwwwwwww!!! Internally I was screaming but gritted my teeth and carried on regardless.

Then eventually we found a car park after driving through the busy town centre for 10 minutes and my husband parked the car, only to discover that he didn’t have enough change for the bloody car park machine. So he started to walk right across the car park to get some change. I managed to get his sisters out of the car (they were well and truly fed up by this point, one of whom was crying.)

I then got my little man out, well more accurately he kinda jumped out, and he continued to take his anxiety out on them barging into them and running around in-between the parked cars, he was becoming unsafe in the car park. So I lost it. I didn’t scream or shout I just pulled him off his sister and into back into the car where I then sat with my head in my hands. Hands shaking, adrenaline flowing and my heart rate soaring.

It wasn’t his fault. It wasn’t my fault. I just needed to breathe and calm down away from everyones glare.  Breathe, breathe, breathe, breathe, and then under my breath I sighed “sometimes ....just sometimes can’t we be a normal bloody family” and he looked up at me with his big brown eyes and said “sorry mum it’s not my fault it looks so busy.”

It floored me. What had I done my poor son, to my poor daughters? This was bonkers.  People may or may not have been looking at me and my child in the car park. But I allowed myself to be overpowered by the pressure of the situation, and I had put pressure on myself to ‘do something’ I gave him a big squeeze but I just couldn’t talk.

My husband then appeared waving a ticket and I took the opportunity to escape saying I needed to go to the loo. I ran in the ladies to compose myself, pull myself together and move on. No tears... just head down, don’t give me eye contact or ill cry, I need to sort my head out kinda loo break.... you know the one!

Anyway all was fine, I pulled myself together and went back out to my family, and we ended up having a nice day when he eventually found his stride. It’s a bloody rollercoaster this mum stuff. One minute you’re up the next your down and all the time you’re trying to hold it all together and appear 'normal!'

It breaks my heart cos I know I can’t always be there to protect him from judgement, as his condition is largely hidden and so complex. And its scares me that if even I as his mother find it hard sometimes to accept things and see what his behaviour is telling me, how can I expect other people that may look and stare at him to better understand how his autism affects his daily level of functioning? He doesn’t walk around with an “I am Autistic” t-shirt on.

And sometimes just sometimes I lose my patience cos I am human. His few words made me realise what I had done. It’s my job to teach him how to cope in situations like that not punish him for when he can’t. So although in that split second I wanted 'normal'..... I cant help but wonder what is normal anyway??

So I am going to take my own advice and be kinder to myself. I make mistakes and get things wrong. Today was one of those days. But I won’t dwell. I am going to move on and enjoy the rest of the week despite the crappy weather with my wonderfully crazy,  not so 'normal' family!

Mrs M x

M is for meltdown

M is for Meltdown.....

“Mrs M... this is a hard one... meltdowns, for him and you! Believe me you will both have them”       I wrote that a few weeks in one of my blogs, and little did I know that a couple of weeks later it would be so very timely....For me that is!

For my son a meltdown is just something he has to get used to. It’s all part of his condition. And he tends to have them when he is overwhelmed by a situation or a place. He panics, and tries to run away, or lashes out if he feels trapped.  But thankfully he hasn’t had a full on meltdown for some time now as he’s in a really good place at the moment.

 So it’s ironic really that as my son is doing so well, and is so happy and settled , that I’m the one to lose it!! Like any good mummy meltdown it took me by surprise. Well there were warning signals I suppose; you know the usual, months and months of suppressing stress, putting everyone else first, running around like a lunatic to get organised for the summer holidays, Camhs appointments, review meetings, stressing about the state of the house, and then finally boom!

 I’m gone.

There were tears, a face book rant, snot, more tears, more snot, a really puffy face and bloodshot eyes, (not an attractive scene!) Once I started, the floodgates were well and truly opened and I couldn’t blumin stop. My husband was sympathetic and kind and then that set me off again! My amazing friends, and family rallied round and that set me off too!

The days leading up to the tears and snot had been a particularly tricky few days for one reason or another , but as I sit here reflecting on it all I am still surprised at how upset I became. It seems that I am even good at hiding my true emotions from myself.

I had sat at the Year 6 leavers assembly the previous day of a class that I have worked with since reception, and the feelings I had whilst I sat there took me completely by surprise. I hate to admit it but I was jealous of all the other parents with their cameras aimed at their happy smiling kids. You see my son had been part of this same class since Nursery before he moved in year 2. These were kids I had assumed my son would be friends for life with. I had so many hopes and ambitions for my little man when he was back in Nursery and I was blissfully unaware of the roller-coaster ride we were about to embark on.

I don’t want you to read this and think I am not proud of my son, I am more proud of him than  you’ll ever know, because he has to overcome so much just to get through each day. It just finally REALLY struck me that we are on a very different path than the one I had mapped out in my head all those years ago when he was so little

It’s quite something to get your head around and I obviously wasn’t ready for the fallout of this reality. Hence the snot and tears!!

I have needed several painkillers today to numb the after effects of the post meltdown headache I’ve been  left with today, and I have thought  to myself what makes me want to share these  very personal feelings with people I barely know ?

It’s kind of a therapy I suppose. You see I have always had a habit of bottling up my true feelings, even from those closest to me. But I have discovered that writing it down kinda helps me get my head around what I am feeling.  And I could sit here and write about all the wonderful things that happen in my life cos believe me there are many stories I could share and I will one day. But it’s so much more complex than that. I have dark days. That’s perfectly normal. It’s doesn’t mean I am failing as a mother, or on the verge of a breakdown.  Being a parent of an Autistic child, and all that involves is challenging on so many different levels that even I struggle to take it all in, and deny certain feelings I have just to keep things ticking along.

And if me writing about snapshots of my life for people to read helps give a little insight into how being me feels , and reassure others feeling the same that it’s OK to feel like that, then that can’t be a bad thing. So I will keep writing about the good, the bad and the darn right ugly as I come to terms with what’s happening. And I promise that no matter how much snot and tears are involved I will always be honest and truthful with you..... meltdowns and all !

Mrs M x

what happens when my husband suggests a spontaneous night out

You know when you wake up in the morning and just lay there with a blank fuzzy mind? Those few dreamlike seconds before you really properly realise your awake, and your brain hasn't quite switched the on button on yet. That kind of..... Where am I feeling?

Or you know that sensation when you wake up thinking its Sunday, and roll over to doze back off  pulling the duvet tight over your head; only to start getting  that sinking feeling as you realise it’s not Sunday at all, its bloody Wednesday! And you have to heave your backside out of bed.

Well that's what happened to me this morning. For a few brief seconds, I lay there half awake, half asleep and I could have been anybody I wanted, with a fabulous day of doing whatever the heck I chose ahead of me.... But then the  sleep fog slowly started to clear and I began to wake up. The day’s routine and chores etched in my brain. I began to stir and sit up. Ugghhh I thought... for one day I would love to wake up and think "let’s go with the flow today". Or "I really don't care what we have timetabled....I have a stonker of a headache so I wanna stay in my warm comfy bed...  I'm not moving..... I need a sick day"

But no, of course because I'm a mum.... as ever I got up as started the day as planned.

I don't think this feeling is even an exclusive Autism mum feeling is it?... I mean I reckon if we all admit it deep down as much as we love our kids...just once in a blue moon we want off! Just for a day, or a few hours, or even a bath in peace would be nice.

You see those that know me well will know I am kind of a fly by the seat of your pants type girl. I thrive off pressure, and tend to make things up as I go along..... And I quite like to see where the day takes me.

Well all that changed when the kids came along, as it should. But then my son took that to a whole new level and I could no longer be that person. Because rightly so he needs his day, week, month, etc all planned in advance.

 This I find hard!

 Not the planning of it all; to be honest that the easy bit, but it’s the blumin sticking to it that's the hard part. Cos as we all know life is chaotic and things change. But it’s my job to buffer those changes for him and keep his day as predictable and consistent as possible, or chaos and meltdowns ensue.

But it kind of feels like a trap sometimes. It traps me into his routine too. You know what I don’t wanna sit here moaning, cos most of the time I am absolutely fine with it all. But this morning after I had heaved myself out of bed to start the day, over coffee my husband made the  fatal mistake of saying to me that he was considering going to a local beer festival tonight; as he knew some people that were going, and would I like to go?..

Would I like to go?


Yeah of course I would like to go husband.... but can I go... no I flippin can’t! Poor man really didn't deserve that response. But It’s not like we can get a sitter at such short notice. And even if we did I knew I would spend the whole night clock watching as I needed to back for 10pm for his bedtime routine. Heck we only had out annual night away a few weeks ago there is no way I am gonna get away with a spontaneous night out so soon!

In preparation for the summer holidays I had spent most of last week catching up with friends over coffee during school hours, cos for the next 6 weeks I'm pretty much unavailable. My life has to be centred on my son and keeping his routine stable for his sake, and his sisters too so we can get through the 6 weeks holidays in one piece. I don't have the luxury of seeing my mates and colleagues at work to keep me sane.

Maybe that’s why I was so sensitive when my husband suggested a spontaneous night out this morning. But isn’t it what normal people do, you know be spontaneous?  And it’s not his fault I suppose.... he’s just being a typical bloke. It’s not natural for me to be tied down like I am, and I suppose it just gets to me sometimes. Especially when my husband’s suggests something I know isn’t realistic and can never happen for me.

So anyway I calmed down after another coffee and we decided he should go have fun, so he’s gone off for a night of drinking a load of beer in a field while I ‘stick to the routine’ as usual!! And having put the kids to bed I am sat here writing this blog in peace. To be honest after all my sulking I actually ended up having a lovely night with the kids stuffing my face with pizza, and watching Harry Potter for the hundredth time. And I hope my husband has a good night too. Its important to have fun and see friends. (I know that...... I'm just jealous of his ability to be spontaneous that's all )

 And you know what I’ll be the one waking up tomorrow, realising its Sunday and rolling over for  an extra 10 minutes in bed with a smile on my face ready to face the timetabled routine day ahead... And I suspect my husband’s spontaneous antics of this evening will mean he wakes up with a VERY foggy head tomorrow, crying out for a sick day while we drag him round the animal farm as per timetable dictates!


So who’s the winner and who’s the loser here ... I’ll let you decide that one!

Mrs M x

If only I knew then what I know now

If like Marty McFly you had the power of time travel and could go back in time to tell yourself what you know now, what  do you reckon you would say to your former self in those early confusing days of pre diagnosis ?.....

Hmmmm now there’s a thought.....??!!

Some of you reading this may be at the beginning of your journey with Autism. Some of you will be far more experienced at it all than me. Some of you may have family members, or be friends with someone whose life is impacted by the condition in one way or another. And there may even be people reading this that work really hard each day to teach our kids in schools and colleges.

 But each and every one of the kids that has brought you here to this blog is uniquely wonderful, and so we will all have different experiences and journeys ahead of us no matter who we are. But I reckon that so much of what we go through, actually leaves us feeling the same as each other. Confused, knackered, joyful, and overwhelmed to name but a few.

So whoever you are sat reading this , and wherever you are on your journey...   know that you’re not alone. Yes things will be tough sometimes, but there’s so much more good stuff about Autism than you may realise, once you can see through the label your child has just been given. So bear with me on this one as you’ll need to use your imagination a little....as I am gonna go back a few years to tell the Mrs M of 2007 a little of what the Mrs M of 2015 now knows.

So here is my ABC’s of ‘If only I knew then what I know now’......

Acceptance ...  Mrs M, it will take you a long time to accept what is happening with your son. But I wish you could  trust your instincts because your gut feelings are always right, and you will get better at standing up for your son as you learn to fight the system, stuff what anyone else thinks!

Bedtime... lack of sleep and years of trying everything known to man will mean that eventually Mrs M you will admit defeat and Melatonin will become your new best friend! And you will wonder why you were so reluctant to pop those pills! Yes you will! All hail Melatonin!

Compare...never compare your son to other kids. Each child with autism is unique and yes they all have similarities, but he is his own person.  And also Mrs M ...please try not to compare your child to other mainstream kids!! Your son may not join in all the activities like the rest of them do... but that’s OK, his talents lie elsewhere yet to be discovered in the future!

Diagnosis... you will have to wait a ridiculously long time for a diagnosis Mrs M, and when it comes, it will hit you like a tonne of bricks. You will feel numb for a while, and a kind of relief mixed with sadness.  Do not Google search Autism!! And yes you will cry and that’s OK, its normal. But then after the shock you will come to realise that “one line on a piece of paper” is the key to unlock support, and it doesn’t need to define you or your kiddo.

Emotional rollercoaster... yeah that!!  You’re on one ... sorry Mrs M you just gotta get used to that! No advice for that one I’m afraid....but just know that there will be good days and bad days. (Just make the most of the good ones cos when they’re good... they’re really good!)

Goals...all the goals you start out with will change. Your priorities will change and you will learn to accept and embrace that in time.  Your life can’t be mapped out now like you planned cos sometimes shit happens!

Home...home will become your child’s sanctuary, the safe place where he can let off steam, and be free to be himself.  And sadly Mrs M you and your family will be judged, prodded and poked because of that, but eventually you will reach your limit and shout STOP...  no more!!....And you will learn to take control and adapt your family’s life around him because that’s just the way it has to be!! For the sake of everyone, your life does have to be different from the ‘norm.’ Again you will learn to not care what others think about this...stuff em some more!

Icepops...my advice to you is INVEST !! Your son is gonna keep the supply and demand chain of ice pops in business for the foreseeable future ;-)

Judgement and jumping... people will judge you; you will eventually learn to remove people like that from your life. Don’t carry baggage you don’t need. You will learn that everyone’s story is unique and no one really knows how it feels to be in the other person’s shoes. Ohhhh and there will be jumping, lots and lots of jumping.. ..jumping on the trampoline, on the bed, on the sofa, in the car, on the tables.... do I need to go on Mrs M?

Kind...  please be kinder to yourself. Things are gonna be tough at times and you’ll make mistakes, but that’s fine. Look after yourself and don’t beat yourself up about the times when it goes wrong. You’re not superhuman. Look after yourself in order to look after your little man

Lead...his future. Don’t sit in meetings letting people tell you what’s best for your son. You know him better than anyone; you will learn take control of his future and not be so afraid to become ‘that mum.’ He needs you to  stand up for him in those meetings because he can’t do it for himself

Mrs M... this is a hard one... meltdowns, for him and you! Believe me you will both have them

No... your kid is not naughty he has Autism. They may appear as one and the same thing to some people but you will learn to develop a thick skin to that. It will still hurt deep down when people don’t get him, but you have to accept that some people never will, and move on

Overthinking...no matter how many times I tell you not to, it’s pointless, because you will over think everything and it will keep you awake at night. You will find keeping a diary will help to start with, but then you will outgrow that and start a blog as a way of getting all your crazy over thinking out of your head ..... honest you will..... and people will read it and everything !! 

Pahhhh...excuse me I need a pyjama day today so I can Netflix binge and eat biscuits all day #pyjamadayshouldbeprescibedontheNHS

Questions... questions, questions!! Your son asks a lot of them now and I’m afraid he still will be in 2015, so suck it up Mrs M

Routine...not only will your son’s life be dictated by routine so will yours as a result. You will find yourself planning days, and weeks ahead. You will approach the 6 weeks holidays off school like a military operation; with colour coded whiteboard pens, post it notes, and a  cupboard packed full of white food and ice pops ready for the battle ahead

Sensory...issues are gonna become a big part of your life. He won’t eat that, he won’t wear this, it’s too loud, that place is too busy, he likes to bounce, he hates brushing his teeth etc. You will believe you are an “expert” in the field, and you will begin to  self diagnose other kids in your head when you’re out and about......... you will develop a radar like superpower that spots Autism from metres away. Like the kid in the park with his hands over his ears that’s always crying at the noise, and you wanna rush over and plonk a pair of ear defenders on the poor unsuspecting kid! (Not sure how well that would go down with his mum either really)

Time...simply not enough hours in the day Mrs M, that’s something that never changes

Unconditional ...is the love that no matter what happens you will always have for your kids

Vodka ... and cola with ice and a slice... enough said!

Words... will be used all the time to suck the lifeblood from you on particularly challenging days: Why? When? What? Who? Where?... over and over and over again

Xray...you will need lots of them because you will continue to be clumsy and fall over on many occasions, nothing changes in that department Mrs M ( I write this whilst on crutches nursing a very sore ankle.... so trust me I know nothing changes)

Y ...why......you will ask why me?  You will ask this many times! But you’ll move on from it as it’s not something you can dwell on Mrs M, who knows why anything happens in this world I certainly don’t!

zzzzzzzz... sorry what was that I so bloody tired I fell asleep!

 

Mrs M if you were paying attention and not skimming over this you will have noticed I missed out F. That was because F is for your friends, and family. They will be what gets you through. They will  lift you up on dark days, understand when things don’t go to plan and when  you have to bail on them for the 3^rd time in a row, they will laugh along with you on those amazing days when things are going well, and  they’ll be  there to pick you up when it doesn’t.

 So, thats me.......Now what would you tell yourself if you could go back to the future I wonder?

Mrs M x

 

We all need a break sometimes

 

Thanks to the wonderful world of discount vouchers, we have just spent a cheeky night away from the kids in a slightly dated, but lovely, and most importantly clean hotel!  We weren’t even away for 24 hours, and we were and only about 10 miles away from home, but it felt like we were a million miles away from reality for just a few precious hours.

It kinda got me thinking about how important it is to just try and switch off from it all once in a while.  But truth is when you have a kid with Autism you don’t ever really switch off.  Well I know I can’t.....I don’t know if that’s how others mums feel, but I imagine it’s something we all struggle with.  I suppose it’s a mum thing in general really, we always worry about our kids whether they have a disability or not.  “It’s just what mums do,” my mum always tells me...even now! (Mind you I probably do give my mum more to worry about than most, with my tendency in needing to visit the A&E department on a regular basis; you know with me being related to Mr Bump!)

 

However there is something about having a kid with Autism that has turned me into this protective and slightly paranoid lioness. Even when I am not with him I never really stop worrying about him. I suppose as he gets older and more independent it will get easier?? I honestly don’t know, and  I will cross that bridge when I come to it. I tend to live in the here and now and not think too far ahead to be honest.

When I sat and thought about it last night, whilst childfree sipping Pimms, I am always on standby. Always ready to deal with the next crisis, and whatever issue is gonna pop up next. Always ready to be the referee, nurse, punch bag, cook, carer, wife, sister,  friend, mother, teacher, taxi, daughter, neighbour, cleaner, now blogger ha ha .. I mean blimey, the list is endless. It’s what we all do isn’t it?... Us mums, we wear many hats!

 

But being a mum and a full time carer is pretty tough I have to say.  It’s exhausting on a whole other level. And it’s really easy to lose yourself amongst all crap and isolation. I am a 30 something year old woman who has given up everything to care for her kid. I had to put my life on hold to make sure my son didn’t seriously hurt himself, cos he was getting so stressed at school.  It was a no brainer really, he is my son, and I would do the same for any of my kids. And I don’t resent him in the slightest for what I had to do.... it was completely my choice. But deep down I know there was something nice about having a job, making a difference, and being with friends at work every day.  I do miss that. In a way that was a kind of respite for me. It took my mind elsewhere and I was me ... just me.

You see us mums just get on with what we have to deal with don't we, and currently this is my life. And its pushed me to start my blog, which is helping me discover that.... I am not alone in finding things tough. I am not alone in feeling alone at times. I am not alone in not always knowing what to do for the best, and  I am certainly not alone in struggling through the minefield of services and crap that comes hand in hand with having a kid with a disability. And most importantly ...I need to look after myself better in order to survive.

Having that little break away last night took me by surprise at how ready I was for it. It made me see how important it is to spend time as a couple.  I mean let’s be honest that’s so low down in the day to day priorities with the kids, that being together as a couple gets neglected far too often. It was nice just to sit and talk, not be rushing around, to actually be able to go in a shop!!  To have a long soak in the bath, without someone banging on the door shouting.... muum!!  To get a little tipsy just cos we can, and go to a nice cafe that we would never dare go to with the kids. And I didnt realise until I was away from it all, how much I need to just be me sometimes.

 

In order to care for my son and wear all those hats, I know I need to look after the person wearing them. So my advice to you reading this is grab the chance to do whatever you can that makes you feel like you.  If you’re lucky like me, take up your families’ offer of help or babysitting whenever you can.  Or if like my hubby getting out on your bike is what you need....  then do it. If reading, baking, gardening, going to church, working part time or having a night out with your mates enjoying a glass or two makes you feel like you.....Then do it!

   I am determined not going to lose sight of me again. .....

             So  I am 36 years old

                         I have brown hair and wear glasses, and I love reading books

                                I have three wonderful kids, and a lovely hubby

                                          And my name is Michelle, that’s me!

                                                        Nice to meet you xx