This time around its different

Hi folks

I am sat here thinking what on earth am I going to write about? I’ve been stuck in a bit of a writing funk I suppose. Not wanting to pick up the laptop to share with you what's been happening these last few months. But today I have decided to give it a go...

Back in September the dude was too anxious to return to his school after the long summer break. If I think about it had been coming for a long time but inevitably when things like this happen it turns everything upside down.

My life these last few months has completely focussed on him. He kind of went into what can only be described as an implosion. It was scary, and all those feelings flooded back to me where I felt out of control and short of breath, I was constantly nauseous and felt quite alone in all this.

You see we have been on this path before and it didn’t end well for me.

I ended up becoming ill, once he had recovered. I had held it together for months and then once I knew he was OK, well, I could hold on no longer.

But this time things have been different.

Last time I had to give up my job when it happened, this time I had no job to lose.

Last time I wasn’t looking after myself. I ate all the wrong foods and had nothing for me. This time I am in a much better place with my health, I’ve lost weight and I started running a few months ago. So now I can put my earphones on and leave all the crap behind as I shut the door and get out of breath and sweaty for half an hour. My brain switches off and just for a brief moment all that matters is the muddy puddles I am running through and my heart pounding through my chest as I try and regulate my breathing. I wobble and its not pretty, but I don't care anymore! I do it for me and no one else.

Last time I felt alone, and weak. But this time I have found some amazing professionals that are helping us to get through this. People who finally really get my son and are as passionate as me about getting him the support he deserves. I cannot tell you the difference it makes knowing that someone has got your back.

Last time he was unable to tell us what was wrong. I had to unpick his behaviour and be his voice. Sometimes being ignored and often feeling like his voice held no authority as it was coming from me. And after all I am just his mum!! But this time the dudes voice is being heard loud and clear. We are making sure of that. His voice is the most important at that table, even if he isn’t able to make it to the table, his voice still needs to be heard. And with the help of some amazing people I am certain that this will happen this time.

Last time I felt overwhelmed by the task at hand. This time I know that there is a light at the end of the tunnel. The path is bumpy and long, but I know if we have done it before, we can definitely do it again!

Last time I was willing to be walked all over. I was a newbie mum. Uncertain of how much of a battle it all would become. Unprepared for the judgements and poking around that would happen because of the people who were meant to be helping us not knowing what to do. So, I felt under the spotlight, confused about whether or not my gut instincts were wrong, and I was persuaded to do things that ended up having an adverse effect on my son. This time however I am stronger. I still find any confrontation challenging, it drains me emotionally and I am exhausted with it all some days. But I know the system better now. I understand what I need to do in order to get my son the support he needs. I am less willing to accept things at face value and recognise the strength in having a team on your side. I don’t need to do this all on my own this time.

Because my son deserves the best.

My son deserves to be happy.

My son deserves to be supported by people that truly understand the difficulties that face children like him.

My son deserves future in which he can live as independently as possible.

So right now, all my energy is focussed on the goal of getting him better and finding a school that can meet his needs as he faces becoming a young adult with all the complications that brings.

This is where we are at now. This is my life...6 am emails, assessments, meetings, sleepless nights, medication and banging on doors to get answers.

And you guys all deserve to know that if you are going through something similar, you’re not alone and there is always a light at the end of the tunnel.

And I promise I will make more of an effort to start sharing my thoughts again with you.

This time around I will not give in, I will not take no for an answer, and I will be his voice for as long as he needs me to! 

Mrs M x

A letter to my husband

Dear Mr M, 

So today we celebrated 16 years of marriage and 24 years of being together. It's been a roller coaster adventure of a ride Mr M. With highs and lows, moments of absolute despair, and yet many more times of laughter, joy and happiness.

As I sit here writing this now I can’t help but create a picture in my mind of the two spotty teenagers that met all those years ago, so young and carefree. Back then all we thought about was fun steamy nights, and sneaking around after curfew. Love letters and living in the moment.

You asked me out whilst we were sitting on a bin sharing a bag of soggy chips, and I was smitten! What more could a girl want.

You were older than me and I was so proud to strut around with you on my arm.

We had our whole lives mapped out ahead of us didn't we?

But we quickly learnt that what we had imagined for ourselves and our kids wouldn't come anywhere near to the reality we would face. 

Because now, well now so many things have changed.

Our lives, like so many others parents out there is not one if I'm being completely honest I would have chosen. Autism, Dyslexia, health care plans, doctors’ appointments, social services, suspicions and even judgement of our ability to parent.

Not to mention the countless assessments, tests, and years and years of fighting a system that doesn't understand our son, just to get him the support that he's entitled to.

So let’s face it Mr M, I am anything but young and carefree nowadays. The hair dye and twitching eye are certainly testimony to that. I am no longer that ‘live in the moment’ kind of girl you fell in love with. 

And I would rather sneak into bed for some 'shut eye' if I ever got a child free evening... never mind staying out after curfew!

But who am I kidding anyway. Nights out are a thing of the past. Because if we do manage to escape, it’s usually separately as getting a sitter that can manage our tribe is a rare treat.

And sadly, we no longer stare into each other’s eyes over soggy chips (well I don't miss the soggy chips part it has to be said). Because I am usually cooking three different meals to accommodate the diverse food fads of our kids in this house!

It was heart-breaking in the early days of our marriage watching you reach out to our son to do the usual father son stuff; you know the football, cycling, and sports like all your friends were doing with their sons. To then see the hidden rejection you felt when he had a meltdown pitch side.

I know how hard that was for you to understand him before he had his diagnosis. I could see the pain in your eyes as you felt so helpless to see your little boy so anxious. But as it turns out, our children have taught us so much more than we could have ever imagined.

Then add into equation trying to find time for each other, work and responsibilities, high blood pressure, teenage daughters, lack of sleep,  financial pressures, dogs, cleaning, laundry, home schooling….. I mean c’mon the list goes on. There’s no wonder we are not the same people we once were is there?

I don’t know about you Mr.M, but I no longer desire the world at my feet. I would simply be happy with a hot bath, a good book and 5 minutes peace on the loo every now and again. Now that would be lovely.

But seriously, I want to grow old with you whilst we watch our kids growing up being happy and proud of who they are, not who society tells them to be. Together we are helping our kids to stand up for themselves, love themselves, and hopefully they will leave us one day to fulfil their own potential (or like our son says he will be living in a caravan in our back garden!) Whatever makes them happy. 

Despite the stress ours is chaotic fun mad house. Our kids are happy and loved and I wouldn't have it any other way (most of the time.)

Whether they are Dyslexic, Autistic, or a little ditsy sometimes. They are all unique and amazing because we made them, I mean that's a miracle isn’t it.

We made 3 perfect lives- that’s enough legacy for anyone I'd say.

You see some things just won’t change Mr M. Despite all the crap that has come our way these last 24 years, I still love you with all my heart, and I am more proud than ever to strut around with you on my arm. Because you’re a wonderful father to our kids. I am so proud of the man my teenage first love has become.

So for now, I hope you can settle for an exhausted wife that would rather have an early night and a hot steamy bath, and not that youthful carefree bit of stuff you hooked up with all those years ago?

And like our wedding song says “Will you still need me, will you still feed me, when I’m 64?”

Well we're already halfway there Mr M, where have the years gone? 

So as long as you’re not feeding me soggy chips, I’m up for the next 24 years adventures… are you? 

Mrs M x

Summer Holidays Diary Week 5- 'Camhs and the anxiety monster'

( I've lost count of the days so from now on I'm on weeks.....we're currently on Week 5 of summer hols)

So, we were at Camhs yesterday to see someone about my sons increasing anxiety, difficulties around people and general inability to function in the world around him. They asked me what anxiety was preventing him from doing and to be honest it was easier telling them what he could do which is walk the dogs in the woods and visit the field to plane spot)

"Could he go shopping?" .......no
"Can he access Leisure activities?" ....no
"Can he visit the dr?".....no
"Hairdresser?"...no
"Socialise with friends?"....no
"Visit family?"....no
"Eat out?"....no
"Interact with his sisters?".....no
"Access his local community?"...no
"Communicate with others ?"...no

What we didn't talk about too much was what he can do, and he wouldn't get out of the car, then when we did coax him out he hid in the bush at the back of the building!

But in a way though, although these things can often make you come away feeling crappy as its so focused on the negatives .... I think they got to see how anxiety is ruling his every waking minute. Which I needed to make them understand in order to help him, and then hopefully we can get some support in place for us all as a family as its so hard seeing him losing himself to the anxiety monster🙁
Mrs M x

Summer Holidays Diary Day ( 'no blumin idea anymore; CAMHS... more to follow' )

Day ??

Hi folks I've been a little unwell the last few days but today was Camhs, so I dragged my dry shampooed, dosed up on painkillers butt along to the appointment 'cos there was no way I was gonna reschedule that appointment for another day!

Mrs M x

Summer Holidays Diary Day ( lost count now?!?!) ' finding things to do'

Day (lost count now ) 🙈

The days are beginning to blur for me I must admit 😂

We are currently looking after little critters for friends and family on hols so that gives him some focus. Here he is feeding his uncles tortoise ....

Mrs M x

Summer Holidays Diary Day 18- 'Family holidays; our new reality'

Day 18

My hubby is taking ours two teenage daughters away for a few days down to Cornwall with his family, so it's been packing and getting organised for them the last few days! I've also had a stonking hormonal headache which has made me sluggish and tired! Yuck 😨

So today I'm watching my fav Film with my daughter before they head off tomorrow and leave me and my little man for a few days to fend for ourselves!

Separate holidays has become a reality for us this year!
Mixed ...feelings about it all to be honest but I know the girls will have a lovely time with their dad...and it's important that they have some time to chill and enjoy themselves this summer too, so we now do what we need to do regardless of what others may think... That's our reality now! 

Mrs M 💕

Summer holidays Diary Day 16- 'Sleep'

Day 16-

It's 11pm and it's been a pretty full on rainy day here at home, we've had lots of visitors and comings and goings all day but he wouldn't come downstairs while anyone was here.

I've just collapsed into bed with a brew and I'm hoping he sleeps ok tonight!

We're currently waiting to be seen by CAMHS again to assess his melatonin as puberty seems to have affected how well they are now working!

Got another two weeks yet until we get seen though
Mrs M 💤

Summer Holidays Diary Day 14- 'Clothes'

Day 14

My son only has one blue hoodie, one orange ape shirt and one pair of grey joggers that he's comfortable wearing (you will have seen them in each pic I take of him) but as you can imagine it's hard keeping them clean especially in the school holidays when it's all he will wear during the day, and he's also outgrowing them rapidly being 13 and growing taller every day!

So today I made the most of daddy being at home with a hangover  and went shopping with my daughters leaving the boys at home. I went on the hunt for replica/ similar clothes and it's gonna be trial and error I think until we can find something he's comfortable in! So far he's not impressed with the selection I came home with today don't think I got the shades of blue and grey quite right 
Mrs M

Summer Holidays Diary Day 13- ' planning ahead'

Day 13

Trying to arrange a coffee and catch up with a friend next week and we both need to check our kids timetables and plan it in accordingly!

Made me chuckle today, nothing spontaneous in our houses over the next few weeks
Mrs M xx

Summer Holidays Diary Day 12- 'at the beach'

Day 12

Hubbies off this week so we drove the remotest beach we could think of and had a wet and windy walk along the seafront today!
Love the beach
Mrs M

Summer Holidays Diary Day 11- 'out of his comfort zone'

Day 11

Today we pushed him a little out of his comfort zone and took him to a car park roof top at the airport. It's so hard seeing him so conflicted when he really wants to do something but his anxiety about the new experience puts him off.

We have to time these things well, make sure he had a restful day the day before, ensure he's prepped for what will happen and find the hook that grabs his interest enough to make him want to do it.

He found it hard and struggled to get out of the car but eventually he could see that he was very close to the action and tolerated the other people that were there in order to get a good shot on his camera.

Now we're off to McDonald's to get him some chips and he's sat scrolling through his images one happy little lad.

Mrs M

Summer Holidays Diary Day 9- 'we all need friends'

Day 9-

This morning it was my youngest daughters school leavers assembly, and my 19 year old niece was due to come and look after my son for an hour or so, so my hubby and I could both go to watch it together which is a rarity indeed.

But unfortunately at the last minute she got called into work

So I tried various family members to see if anyone could help me out at short notice. No one could this time, and my daughter was in tears as she wanted us to both to be there as it was understandably a big deal for her.

So I contacted one of my close friends (who has a busy life herself) cap in hand asking her if she could help me out this morning. I really don't like having to put on people and felt awful having to ask her, but I did beacuse i couldn't let my daughter down.

And with no hesitation at all...she said of course!

It brought a tear to my eye, and my daughter cheered with the news.

It made me realise that everyone needs help from their nearest and dearest sometimes. We can't do this alone, all of the time!

There was me feeling awful for asking her, but she often tells me that she wishes she could help more but never knows how to ....so she was actually glad I asked her and was happy to help out in any way she could.

I'm very lucky to have such amazing friends and family around me that I can turn to in times like this.
Lovely folks who accept the dishes in the sink and the laundry all over the kitchen table without passing judgement, just rolling up their sleeves and queitly doing the dishes for me!

Offering to nip to the shops for me when my cupboards are bare and I can't get out of the house.
Folks who are a little nervous of what to do with my son, but offer to have a go anyway.
Folks who get my situation, don't put pressure on me when I have to cancel at the last minute or sneak off to answer my sons text message on a night out.

Folks that check in with me weekly with texts letting me know that despite the fact that they don't see me often they are thinking of me and want to help however they can.

Those that haven't 'got it' never seem to last that long and drift away in the end .... That's something you learn to accept in time it just makes me more determined keep the ones that have stuck around for the ride so far!

So in the end my daughters assembly was emotional and full of tears as she prepares to move onto the next chapter of her life at high school, but I'm so thankful to my lovely friend that I was able to go to share the moment with her.

These things have a habit of teaching me lessons that I didnt always anticipate.

I need to try not to be so proud and ask for help when I really need it. No man is an island as they say!

And I must try to appreciate the lovely friends and family that I am lucky enough to have in my life, and also the online friends on this page that pass no judgement and share the same experiences making this journey feel less scary to share!

So thanks you each and everyone of you, you know who you are
Mrs M 💕

Summer Holidays Diary Day 8- 'demand avoidance'

Day 8-

We're having a demand avoidance day today.

Despite only having on his timetable - 'a walk in the woods with the dogs' (which you would think wasn't much of a demand at all) but all seems to be a bit too much for him today for some reason.

So, He's going nowhere today despite all our best efforts to encourage and bribe him out! We've had hour after hour of refusal and repetitive language/hyperactivity so we have given up!

This can be a contentious issue for some families I know, with parents feeling the pressure from friends and family to force their kids to do stuff. It's hard balancing the needs of the rest of the family with the needs of a demand avoidant child. It puts incredible pressure on everyone. And parents can often be judged as giving in, letting the child take control or not giving their child discipline. But believe me it's no where near that simple. So we shouldn't be quick to judge. No one has the right to pass judgement.

It's something we have battled with for years now, knowing how far to push him and when to accept that he simply needs some time to reset his system.

Is it giving in? I don't think so. I have to respect his needs and understand that hidden pressures can take its toll on him and his behaviour is telling me that something is wrong.

So....I'm catching up with the mountain of laundry that's accumulating in the laundry basket! 👕👖👗👚

And we will try again tomorrow after he's had a day to chill.

Mrs M

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