A Little Lament

You’d think that these long lockdowns would be conducive to lots of blog writing, but unfortunately that’s not been the case. And in all honesty I’ve not really felt like it. Let’s face it, it’s been a case of surviving one day to the next and just getting through.

Over these last couple of weeks though, I’ve started to have a few more Carrie Bradshaw moments, which hopefully means that my creative brain’s starting to wake up a bit.

I’ve been thinking a lot about the idea of lamenting, as I’ve recently been listening to Annie Lennox’s new recording of Dido’s Lament, by Henry Purcell.  I know it might not be everyone’s bag, but I think it’s absolutely stunning, actually I’ll go a step further and say it’s perfect. What could be better than Annie and Purcell? I know my taste is a tad niche, but I really do challenge anyone not to be moved in some way by this piece of music.

Last week I found myself listening to aforesaid  piece in the car, whilst driving ALONE to the supermarket (yes I think it was for wine and chocolate). As I drove through our lovely high street that is usually buzzing with its pubs and restaurants, the dark and quietness struck me. It was like something out of a film, with Dido’s  Lament being the perfect soundtrack. For the past year, we’ve all known we’ve been living through a nightmare, a pandemic that our children’s children will learn about in their History lessons, but we’ve just got on with it. We’ve all had our part to play, we’ve had to make sacrifices, work harder, some more than others, but everyone has had their world torn apart, to some extent.

We’ve had to do the whole ‘getting on with it/it is what it is (hate that)/#positive vibes/we can do this’ thing. Because that’s how you get through hard times. Or is it? I’ve been thinking that a good lament is in fact a healthy thing to do. To actually feel sad and acknowledge that this really is tough going. It was on that drive, with the darkness and the music that it struck me. This is not ‘the new normal’, this is horrific, so many people have died, so many people are lonely and terrified and are emotionally damaged beyond repair by this virus.  And that is so tragic. And it’s ok to feel sad and angry about it.

It made me think of my experience as a Special Needs Mum. I generally go about my life in warrior mode, fighting for my son’s rights, trying to make life easier for him, campaigning for the cause as much as I can. Putting up the impression that I’m strong and can cope with anything thrown in my way. But that’s not healthy, or normal, or sustainable.  I’ve grown to acknowledge what I call my ‘slap in the face moments’.

These happen when I’m going about my daily business and something happens, out of the blue to remind me of the tragedy of my son’s condition. And it feels as physical as a (hard) slap in the face. Like the other week when a local FE College sent him a prospectus through the post for their A Level/BTEC Courses (sort your data out please). Or his mainstream peers applying for their Provisional Driving Licenses. Or the horrendous news articles about people with Learning Disabilities being given DNR orders whilst in hospital with Covid. Or the little daily reminders of just how vulnerable and precious our boy is.

Most of the time when I’ve had a SITF moment, I tend to suck it up and get on with my day, but I now acknowledge that this actually quite damaging. I used to think that if I was sad about his condition it meant that I wasn’t being loyal to him, or not accepting him in some way, but that’s obviously not true. It is OK to feel sad sometimes, to have a good old lament.

As we fight our way towards the end of these awful times, with their tragedy, sadness and restrictions, I do think it’s good to say that we’re struggling, it’s been tough and I feel insert expletive angry about it. I think once we’ve let all this out, we’re ready and waiting to let the positivity in ❤

Fourteen Portions of Chilli

I think I’ve mentioned before in my blog that our boy doesn’t like Bank Holidays, because the shops shut and things aren’t the same. Now we are faced with the possibility of shops AND SCHOOLS being shut, along with goodness knows what else. For goodness knows how long. Quite frankly as his mum, I’m freaking out a bit.

Every day, week, school term and school holiday follows the same basic routine, which helps to keep him feeling calm and secure. As an Autism Mum I have learnt to plan and prepare everything he needs in advance. I’ve had to become as organised as I can, where he is concerned. So the current situation is all a bit of a mine field because it’s totally out of my control.

So, I decided to get smart. I’ve spent the last day or two making sure we have all he needs to eat for two weeks. I know, it’s meant stock piling a bit (apologies) but it’s all done. Our little ‘Covid Cupboard’ is full of all his favourite snacks and the freezer is full of his meals. It’s not a hard task to be fair, as his daily meals are exactly the same every single day, except for Saturday, when he gets a take away as a treat. Lots of fresh fruit will have to be sourced along with hummus (his absolute favourite, which cannot be frozen). Perhaps I’ll have to make my own, hopefully it won’t come to that! Now that’s all organised I can relax a bit. As a mother of three children, I feel guilty that I haven’t made any provision for our two daughters, but they are able to understand the situation and know that meals might have to be a bit different for a while, depending on how things pan out.

It’s a scary situation for us all – but it made me think that my son is actually at an advantage at the moment, because he is totally unaware of what’s happening around him in the world. He’s not freaked out by the media coverage like the majority of us. And for that I’m grateful. His world is one of living in the moment, one where he is blissfully happy if he gets his ‘blue crisps’ at lunchtime and his three course cereal breakfast in the morning. I wish I could live there sometimes.

Stay safe folks! xxx

Just Love

My son had an amazing relationship with his Great Grandma, who we sadly lost last year. She was 96. She clearly adored him. I’m not sure she had a real grasp of his condition, but she loved him. Every time she saw him, she would tell him. ‘I just love him’ I can hear her saying it now. ‘Who’s Grandma’s boy?’. I think we all knew who it was.

When you have a child with autism people say the strangest things. One that crops up quite often is ‘Ooh I wish I could get into his head’. Really? I can’t think of anything worse than being inside *anyone* else’s head. Especially my son’s. I don’t know how he sees the world, it might be confusing, it might be scary, it might not. It might be beautiful. Who knows? Who knows what goes on in anyone’s head? Surely that’s the beauty of being an individual, being unique and having your own personal space that nobody else can invade.

The point I’m aiming to make here is that to be accepting of autism, or any kind of neurodiversity, you do not have to *understand* the condition. I do not understand my son’s autism, I really don’t. I have made it my life’s work to try my best to HELP him, but I will never fully understand him. I just love him. Sometimes it’s hard, really hard, but most of the time it’s very easy. Much easier than trying to understand his condition.

So on this Autism Awareness Day, that’s my message. Don’t try to get into the head of someone with autism. Don’t try to understand them. You never will. You’re not meant to.

Just love ❤

Celebrate the Love

Say what you want about Valentine’s Day and its commercialism, but I like it. What’s not to love about telling your significant other how special they are to you and giving and receiving some nice gifts? I was given my favourite wine and calorific treats by my husband last night, along with a lovely card this morning. However, there won’t be a meal out together or a weekend away for us, as you do not simply ‘get a babysitter’ for a child with severe autism like our son. And this is the case for many couples in our situation. Time out together is extremely hard to come across and therefore very precious. Even things others take totally for granted are virtually impossible for couples like us. Let’s not beat around the bush: having a child with additional needs puts a huge strain on a relationship. There are days when it’s not pretty. I mean it’s really not pretty.

When we were married almost 15 years ago and pregnant 3 weeks later, we didn’t expect to be living the life we are now. I thought we’d be thinking about GCSE options with our son and not still lying with him night after night as he struggles to sleep. Or attending to 100% of his personal care. We hoped our son would be a dentist or in the RAF. But that wasn’t to be. And I do think this has hit my husband harder, just because of the ‘lad and dad’ bond. Personally, I think I would’ve felt more of a sense of loss if one of our girls had been born with the disability. These are emotions we have to carry with us every day of our lives and that have a massive impact on our relationship. But, as us human beings are generally programmed to do, we carry on. We persevere. We love.

Love within the context of a family like ours does not take the shape of a Couples’ Spa Weekend in a boutique hotel. Or a boozy night out together and a Sunday morning lie in. As I watched my husband cleaning our son’s teeth last night, it struck me: that was love, right there, in its purest form. They are both the same height and build now, clones of each other. Our son hates having his teeth cleaned, so plenty of distraction is required. As my husband skilfully recited all the Simpsons characters he could possibly manage to a delighted boy, a fairly decent clean was achieved. Mission accomplished.

So Happy Valentine’s Day to my wonderful boys – you are all the love I’ll ever need.


So in a bizarre twist, I find myself with an hour to spare during the busiest week of the year, especially for us Mummy Types. My car is having a quick repair, so I am being ‘forced’ to sit down and drink a *fairly* decent cup of coffee in the customer lounge while it’s being done. A rare occurrence. At first I was annoyed as I have about 23,856 things that need doing, but actually it’s given me the chance to have a little moment of reflection…

Last week was the week of the nativity play and the school concert. As a mum of three I have seen quite a few in my time. Proud parents have been posting photos of their offspring in the obligatory tea-towel head dresses on the socials and it’s all really lovely.

However, the Christmas performance in a Special School is a different matter. It is an absolute game changer. A massively humbling experience that will touch your heart for ever.

I’m not really a public blubberer these days (unless too much alcohol has been consumed) but I challenge anyone not to be moved to tears in this situation. Young people who live with pain and disability on a daily basis, each with their own story to tell. Each child immeasurably loved by their families, doing their bit, playing their own part. The many wonderful staff that care for them, helping them along to achieve their full potential in life. Every amazing pupil up on stage, having their very special moment of fame. The child that cannot speak, waving a flag proudly to the audience, the child confined to a wheelchair, dressed in a beautiful costume looking as proud as punch. The young lady gifted with the most stunning voice, singing her heart out, but unable to make any eye contact at all with the audience.

When you’re a parent of one of these children, sat in the audience, the emotion is cripplingly raw, almost too much to bear, but we’re all in the same boat. I’m sat with my Dad. His life has also been changed by having a grandson with autism. But, he has risen to the challenge and is the best ever grandad to my boy. I know he is feeling what I’m feeling. I know the family in front of me are too. And those to the side. We’re all in this together. It’s the stuff of nightmares to the outsider, the mainstream parent. But we know otherwise: we know the gifts that these special children can bring to our lives. Yes, there are challenges, times of true desperation, times when you think you can’t carry on, but our children inspire us to continue. And for that I thank them: the truly beautiful ones.

A Little Black Dog

Even people who know very little about autism know that most people on The Spectrum love routine. Truth be known, I think most people in general love it too. It’s comforting. Parents and schools spend time and effort trying to build routines for autistic kids and they thrive on them. Then suddenly, for six weeks over the summer it is snatched away from them. And they crash. And their parents crash.

I think you’ll find most parents struggle to entertain their kids for 6 weeks straight. We also have two very mainstream daughters, who love the holidays, but HAVE to have an
agenda. What are we doing today? Where are we going? Can I have? You all know the score.

Summer holidays fill most Special Parents with dread. Of course, there are fun times and relaxing moments, but there is always the lurking fear that their child will struggle
to get through. And this causes anxiety for all concerned. We’ve had summer holidays that have worked and some that definitely haven’t. Last year was great, we had regular carers for our son and I took the girls on holiday with their grandparents. My husband
also had a two week ‘break’. OK, it was a work trip, but it was a change of scenery for him. This year has been different. We don’t have any carers at all and we decided to try and take a family holiday together.

When our son was younger, he could tolerate being away from home. But in more recent years, he hasn’t coped and we’ve had to abandon ship. So, for the past three years, he has
stayed at home. It’s always hard leaving him and he spends so long looking at the holiday photos of me and his sisters on my phone. The guilt I feel when I’ve seen him doing this is heart breaking. So, this year we decided that we’d ask him if he wanted
to come with us. And he said yes. We booked flights to the Channel Islands to stay with family friends: we would give it a go.

So, the planning started. The countdown calendar, the social stories with detailed photos. We talked about it. Over and over. He talked about it with his teachers at school.
We couldn’t have done any more. He’s never flown before, but seemed really excited.

To cut a long (and extremely stressful) story short, three of us ended up home after less than 48 hours. It transpires he loves flying, but still cannot cope with sleeping anywhere
that is not home. You can do all the preparation in the world, but you cannot change a brain that is hard wired to reject change.

As he is now 13 and a half and a good couple of stone heavier than me, it is not possible to simply ‘calm him down’ like you would do a four-year-old. We had no option but to
abandon ship (or plane). Urgently. Pretty heart breaking for all concerned. Especially leaving our two daughters, when we had planned a week together. They still had a fantastic time with their grandparents, Auntie, Uncle and cousins, but it wasn’t what
we had planned. What everyone else can have. Or, should I say, most people can have. It was compromised. Like it always is, when you have a child with a disability.

So the three of us return home, to a week of rain and a quiet house, without the constant chit chat, bickering, mess and crappy 2018 pop music that accompanies our daughters.
Our son was visibly relieved to be home, so we could breathe a huge sigh of relief on that score. But it was too late for me, my sadness had already kicked in. Sadness, like Churchill’s Black Dog, that looms over us special mums every day. Why me? I can’t
do this anymore. Everyone else’s life is so much easier than mine. I just want a holiday with my family. And of course, social media didn’t help. Smiley faces of normal families….everywhere. I was seconds away from deleting the Facebook app, I tell you.
Which, if you know me well, is pretty desperate.

People tell me I’m a positive person. And that my blogs are positive. But sometimes, having a child with autism is, as a dear friend who is in the same situation as me once
described it, is ‘just shit sometimes’. And that’s all I can say about that. It is.

So, for a few days I wallowed in these shitty thoughts. Cried lots of real tears. Yes, us Warrior Mums do allow ourselves to do this sometimes. Despite all the Wonder Woman
memes that we pass around on social media, all the boxing glove and fist emojis that we tap into our What’s Apps and text messages to each other. We cry. We are jealous. We are bitter. We wonder what life would’ve been like if….well, we all know what if.
If I’m being honest, I’m still in this crappy place a bit. The sadness of the aborted trip will linger for a bit longer, as we struggle through the rest of the holidays.

After the tears had stopped, I started to quite enjoy the quiet house and some QT with my husband. Chilling out with the blond fella that we co-created. Reconnecting and relaxing.
Having a laugh.

I had a parcel of flowers and wine from my lovely friend who lives in my world too, visits and messages from my church family, and a brilliant book sent through the post from
my best university friend, along with a note saying she was sorry that the holiday didn’t work out. It was one of the best books I’ve ever read and the escape I needed. See, the positives – they are a-coming.

That’s the thing. There are always positives. Even in the bleakest of times. The sun will come back out, the black dog will go back into his kennel (good job really, if you
know my feelings about dogs), I will put my trainers back on and go running, school will start again and everyone will be happy back in their routines. But, it’s really OK to be a bit sad. We’re only human after all.

Big Up to the Special Siblings

It’s the end of the school year. The time for awards and certificates to be given out to children who have tried the hardest, ran the fastest, or whatever criteria is being assessed. But there is one group of kids out there that is more deserving of an award than any others, IMHO: the siblings of the Special Ones. The boys and girls who, through no one’s fault are born into this life changing role.

This week, our middle child has finished Year 6 and is leaving primary school. She has had her SATs results, been in an excellent school production and had her Leavers’ Prom. This week really has been
all about her. And I’m glad. I am so glad.

When you have a child with a disability, family life literally does revolve around them. Especially when you have a child with autism and challenging behaviour. What we do, where we can go and when, depends
on our son. There are lots of things we cannot do as a family, things that she misses out on that others take for granted – her life really is one big compromise. But it is no one’s fault. She could blame her brother, but she never does. I am sure she
has thought it, but I have never heard her complain about it at all. Because she is special, she is amazing. She is strong and resilient, confident and mature beyond her eleven years. She is my girl, my clever, beautiful girl, that strives for fairness
and equality, mostly, I feel, because of her brother.

There are boys and girls, men and women around the world that are Special Siblings, helping hands to their parents that are struggling to cope with the impact of having a disabled child. Linchpins to family
life, assisting practically and being there for their parents and siblings day after day, as well as getting on with their own lives and dealing with their own problems.

I know what I was like as a child, the only girl in a family with three children. Always the dramatic one, probably pretty selfish if I’m being honest. I think of what I was like when I was eleven and
what my daughter is like at the same age. She is so level headed and calm, skills gained from coping with stressful situations, on a daily basis.

When I was at university there was a lovely girl on my course. The type of girl who was always smiling and happy. We were friends for three years and I’d never heard her talk about having any brothers
and sisters. I asked her one day if she was an only child and she said no, she had a sister who still lived at home, because she had learning difficulties. I remember feeling quite sad for her at the time, but looking back now, she was the epitome of a Special

Now I’m not saying all SSs are angelic, super humans – I’m sure they must have those ‘why me?’ days that us Special Parents have. When my girls are older, I’m sure they will tell me some truths that will
almost break me. Perhaps they will keep these feelings to themselves, I do hope that our relationships will be strong enough for us to talk honestly about it. Who knows?

So, here’s to all those Special Siblings, you deserve ALL the medals, high fives and shiny trophies in the world. But, especially to my precious, big girl on your last week of primary school. I am so
very proud of you and love you more than you will ever know xxxx

Why me?

Why me?’ is a question I think most of us have asked ourselves at some stage in our lives, when we’ve been going through a hard time. It’s only natural. It’s easy to look around at other folks and think they have everything on a plate and that their life is easy. I think us Special Needs Parents probably think it more than others. Why did this have to happen to my child and not somebody else’s child? (whoever that somebody else might be).

This week has been particularly hard, as our son is having real problems with anxiety. It is something that he has really struggled with since being a toddler and a condition that commonly occurs co-morbidly
with autism. I hate seeing him anxious, it is the most heart-breaking thing ever. Watching a basically non-verbal child endure an awful panic attack, when there is very little you can do to help him, is just the pits. Anxiety is a hideous condition for
anyone, but most people can attempt to talk about and describe what is bothering them. My son does not have that luxury. He has been medicated for anxiety since the age of seven (that’s another story) but it doesn’t take it away completely.

So, this week I have been thinking ‘why him?’ and ‘why me?’ an awful lot.

As I have mentioned before, when our son was born, I was overwhelmed with love – I’m talking mind-blowingly so. I have a good level of education, a degree from a decent university, but never really found
a career I was passionate about. Yes, I liked my job in Sales, but it didn’t really ignite anything inside me, if I’m brutally honest. All I ever really wanted was to be a mother. So when our son came along – I was complete. So, tick one – I have the crazy
love to do this job.

A certain amount of creativity is required when you have a non-verbal child. You need to produce visuals, timetables, schedules and think of various other ingenious ways to help your child connect with
the world. I also have those skills, I may not be a logical thinker, but I’m pretty creative. I also have a passion for language, communication and people, things that my son needs a lot of help with. Tick two – I have the skill set.

Just as there are many types of mainstream parents, there are many types of special needs parents. I’d probably class myself as the ‘out there’ special needs mum. If I was stuck in a lift with you, you’d
probably know after 2 minutes that I had a child with autism. I apologise – I’m the boring autism mum. But I do think that it actually defines me as a person now, whether that be good or bad. Probably both. I’m pretty sure some people wish I’d shut up
and get on with it, but it’s my way of dealing with it. Some parents prefer not to talk about it at all, or not much. And that’s OK too. Whatever works for you. So, Tick three – I definitely have the passion.

And the forth tick…..I’m not easily embarrassed. Let’s face it, I’m pretty honest. I wouldn’t be pouring my soul out publically in this blog if I wasn’t. When I hit the town with my fellow Autism Mums,
the conversation topics are erm, something else. Let’s just say the toileting stories are legendary and when we get onto the subject of puberty and growing up, well, you can imagine. Nuff said.

So back to the question that I have been batting about all week Carrie Bradshaw style – why me? Quite clearly the answer is obvious. Why NOT me! I’m well qualified for the job! As they say, I tick all
the boxes. And any boxes that I didn’t tick, I’ve had to jolly well skill myself up on. And to be honest, I think it’s made me a better person in many ways. Being a Special Needs Parent has toughened me, made me focused and determined and most importantly
showed me what matters in life. It’s given me more strength and patience than I ever dreamed I could have. Of course I would take it all away in an instant – that goes without saying. But as it stands, I’ll take all the positives I can from the situation I’ve been given.

OK with not being OK

I have never really been comfortable using the word ‘grief’ when referring to my son’s autism. Especially in the early days. On Diagnosis Day, the Health Visitor (whos involvement and support afterwards was virtually non existent) said to us ‘You will need time to grieve’. It was one of those inappropriate and damaging things that people have said to me on my journey, that will be etched on my heart for ever (but not in a good way). That is, along with other faux pas casually dropped into conversation by others, family and friends included. NB You have to be careful what you say to us Special Parents, we have great memories. My tongue is firmly in my cheek at this point, but you get my drift.

How could I possibly grieve for my beautiful, physically perfect three and a half year old, who was very much alive and well? It made me feel physically sick. It was clearly something she had read in a textbook or been taught on a course. Totally the wrong thing so say to me at this point.

Ten years down the line, I do see that there IS a grieving process, a sense of loss for the child that could have been, life you could have had, yadda yadda. But personally, I prefer not to dwell on this idea. Well, I try not to. For me, it’s like dwelling on the fact that I don’t look like a Super Model or have a natural aptitude for maths. You know, things you can’t change. It is what it is.

With a disability like autism, you are constantly battling with the ups and downs of the condition (which has been the main point of most of my previous posts). Loving and caring for a child that can display behaviour that is both devine and monstrous, often changing from minute to minute, due to his condition and through no fault of his own. But the intense love that you have for him usually pulls you through, well on most occasions anyway!

This bizarre juxtaposition of feelings and emotions was perfectly summed up by a friend in the same situation as me. She told me she was at the stage where she was ‘OK with not being OK’ about his autism. I totally agree. Who would ever be OK with it? Why would you? I’m pretty much at that stage too. That’s not to say we don’t love the bones of our boys. That goes without saying. Always.

But no grief for me, because my wonderful son is very much alive and kicking. Although he’s snoring away very contentedly right now ❤

A Game of Two Halves

Our Autism Awareness Day started at 3am this year. Stripping down a wet bed and settling the boy back to sleep.
Then snuggles and watching his favourite episodes of The Weakest Link on YouTube.
Standard stuff. However, his morning wasn’t so happy.
It’s the school holidays so his anxiety is high and puberty and hormones have kicked in with a vengeance.
Tempers were flying and he really wasn’t a happy chap.
So when I checked in on The Socials, I didn’t much feel like ‘Lighting it up Blue’ for autism awareness.
More like lighting it up grey, or a crappy shade of brown.

I’m not a fan of Bank Holidays in all honesty.
I kind of feel short changed and under the impression that ‘normal’ families are enjoying lovely days out, in a Darling Buds of May picnic stylee or off on some exotic family holiday.
Not struggling to control their son and ease his anxiety, plus entertaining two very mainstream daughters on a wet and windy day.
The idea of celebrating the condition that has left our son with such profound difficulties, not to mention putting a huge strain on my husband and daughters and, more selfishly myself, just seemed ridiculous.
Those positive posts about neuro-diversity with their bright blue lightbulbs and multi-coloured jigsaw pieces could naff off.

After showering and breakfast, we headed off to some of his happy places.
Church and Aldi! He’s always loved going to church and it’s somewhere where he feels safe and calm.
I’m guessing that the acoustics and architecture help.
So we had 15 minutes sat in church, with me reading out today’s TV listings, which really calms him down.
Random, I know, but he loves lists.
Then on to the supermarket, which was packed with families (thus destroying my hunch about the family picnics, or perhaps they were buying food for them!).
Judging by the horrendous weather today, I’m guessing that wasn’t really a possibility, but you get my drift.

Once we got home, he was back to his happy zone.
He was happy to crash with me on the sofa, with his fluffy blankets and technology, whilst I read my book and scratched his back.
It was a peaceful couple of hours and I got my book finished.
I don’t get much opportunity to read, but when I do it is usually a book about autism, much to my husband’s bemusement.
I see it as improving my Special Mummy skill set.

The book was ‘A Normal Family’ by Henry Normal and his wife Angela – telling the story of life with their autistic son Johnny, who is 19.
It really is a great read, the kind of book that I could only dream of writing.
It also contains some beautiful poems penned by Henry.
I warn you Special Mums – you will read them and weep (but in a good way).
It’s great to hear about how other people cope with the challenges of Autism Parenting and their book is honest and frank, which I love.
There’s no room for beating about the bush in our game.

Once again our day has been split into two halves: a stressful, desperate ‘I want to run away with the circus’ kind of morning, followed by a lovely chilled afternoon of snuggles
and interaction. One of the messages of Henry’s book is to live in the moment.
It’s just easier that way.

The moment I’m living in right now is a hungry boy waiting for his tea alongside his two wonderful sisters playing Lego together.
Husband is drawing a bath. The little one dressed in just her leggings, crazy hair flying in every direction – like a miniature Iggy Pop.
It’s a pretty good moment. I think I might turn that lightbulb on now……