A Bumpier Ride

Today has been a pretty tough day in the Extreme Mum House. Well actually, just a rough couple of hours this morning, then the rest of the day has been spent reliving the awfulness of those rough hours, as is usually the case.

My boy had a very public, loud and violent meltdown, resulting in yours truly looking like I have had a couple of rounds with Mike Tyson.
And lost. Twenty minutes later, he was back to his jolly self, had forgotten about it and moved on with his life.
However, I’m still in shock and pretty traumatised by the whole horrible episode.
Tomorrow will be another day I’m sure, all the old clichés, take it one day at a time, it’s the only way to live….blah blah blah.

Sometimes you just want to throw all these sentiments out of the window and get angry.
Other days you are that Special Needs Supermum that can do it all, manage all the stuff and roll with the punches.
Literally, in my case. But, most of all, you just want NORMAL.
Some days, I just crave normal. But normal is something that can never happen in our house.
You have to redefine normal. For all your family.
That isn’t easy. On days like today, all you can see around you are normal families doing normal things and not being faced with the challenges you’ve had to face.
And that really eats you up.

Other days, it’s actually quite good not being normal.
It’s fun. You can internally laugh at others getting stressed about random stuff that really does not matter.
You embrace your funny little family and being different.
You are a glowing advocate for Disability Awareness.
You tell the world about your child’s autism and how it has been the making of you and how much he has to offer the world.

But on both of these types of days, you still love your child.
That doesn’t change. But the ups and downs, the highs and lows are exhausting: waking up each morning and not knowing which way it’s going to fall.

You could say this is true of mainstream parenting – of course it is.
We also have two daughters, so I am speaking from experience.
However, with a child with Special Needs, the highs are higher and the lows are lower.
It’s definitely a bumpier ride.

A Mum’s Christmas Miracle.

My name is Jo and I’m a full time mum and housewife. My husband is a secondary school science teacher.  We have a son, William, who is 12 and has a diagnosis of severe, classic autism.  We also have two daughters, aged 11 and 5, who do not (I hate the term neurotypical!).
Life in our house is a very bizarre mash up of order and chaos.  As you can imagine, everything revolves around William and his routines and moods.  Ideally is shouldn’t, but in reality it has to.

William was diagnosed at three and a half, after he didn’t start to develop language normally.  Well he didn’t develop it at all.  Even now, he has great difficulty producing any proper speech sounds as he also has a diagnosis of verbal dyspraxia.

He really is the most charming boy and as you can see from his photograph, he is truly beautiful. 

Will has been in specialist education since reception and has been lucky enough to go to two fantastic schools.  He is now in Year 8.

I have chosen a Christmas theme for this piece – and I am going back 7 years to when he was in Year 1.  Rehearsals were well under way for the school nativity but none of the teaching staff would tell me the part that William was playing in it, other than saying it was ‘an important one’.  I just thought he was going to be the Angel Gabriel, because of his blond hair – it was a no-brainer.  I didn’t think any more of it.

When the day of the show arrived, I walked into school and was given the programme on the door.  I scanned down and couldn’t believe it when he was playing JOSEPH!

I must add here that our boy is not the best at sitting still.  Or following instructions.  Or wearing costumes.  I really could not see how this was going to work.  I think as an Autism Parent you do tend to expect the worst, so I sat there bracing myself for Meltdown Central.  But no, on he came; dressed up as the most angelic Joseph I have ever seen – complete with full costume and head-dress. My jaw was actually on the floor at this point.  Mary was played by one of the more able pupils – he held her hand tightly for the entire time and was unbelievably calm.  It was nothing short of a miracle for me.  Just a year and a half of a wonderful school and he had already achieved this.  I have never been prouder in my life.

Seven years later he is rapidly growing into a young man.  He will be 13 in February.  We do not know what challenges will follow.  We have good days, we have bad days, we have desperate days and days where we truly rejoice.  But we have learned to live life one day at a time, learn from the rough days and have hope for the future.

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The Giggle at a Funeral 

I absolutely love that line from the Hozier song and it just reminds me of my boy.  He’s never actually been to a funeral but you get my drift: he doesn’t live by social rules. And do you know what? I’m so jealous!
He’s the kid that in a room of strangers will run up to the most good looking woman 
and try and sit on her knee (yes this has happened a few years ago and she actually let him!) or ask a random shopper in the supermarket what they like to watch on TV (yes this actually happens too on a regular basis and it’s usually left to me to ask the question as his speech is so unclear!).  But seriously who wouldn’t want to do that? If he sees someone with a really cool afro hairdo, he will run up to them and touch it, or if he sees a cute baby he will stroke their cheek. Obviously this is where we start to run into problems….personal space. Hmmmm, not something that he understands unfortunately. And it’s usually me who ends up apologising and explaining about his condition, but on the whole people are really kind and understanding, so it’s usually all good.

He loves wobbly skin. You know the kind that older people get under their chins. My grandma, who is well into her 90s has it. He will go up to her and have a feel. She laughs. It makes us all laugh. She is not embarrassed, I think she actually quite likes the attention. The situation is turned around.

But basically he is doing what he wants to do, when he wants to do it. How good is that? How liberating is that? How much fun is that?

His random behaviour has broken the ice in an awkward situation so many times. It has brought so many smiles to so many people’s faces.

As I write this blog I’m sat in a hospital waiting room in my dressing gown with a group of complete strangers. We are all in a queue for dental surgery. Nobody has uttered a word. It is really
hashtag awkward. If my boy was here, he would’ve asked everyone what they were called, what they liked watching on TV and probably what they were doing next. This would’ve got us all talking and definitely made this pretty horrible situation a bit more bearable!

Of course I’m hoping that as he grows up he will learn a little more social etiquette, but I never want to take away the unique,  spontaneous and fun side of him. It’s a true gift. I wish he was here 💙

What’s the message?

Today is World Autism Awareness Day. We are all encouraged to ‘Light it up Blue’ to spread the message and educate folks about what it’s like to be on The Spectrum.  It’s a bit of a cliché, but every day of my life is an AAD.  I like to do my bit by educating everyone we come into contact with by being open and honest about my son’s autism and how it affects his life.  I’m sure it must get boring at times, but that’s just how I roll. And how I deal with it, I guess.

I have been thinking to myself – what exactly is this ‘message’ I want to spread? What do I want the world to know about my boy? Well firstly that he is amazing.  He is beautiful.  And he is clever.  But also that autism makes certain things so hideously painful for him that it breaks my heart.  That he doesn’t have recognisable language, yet he has the best memory of anyone I know.  Here’s an example.

The other night, just before bedtime at 9.50 pm he began to point to his bedroom and communicated the words ‘McDonalds box’ to me. My heart sunk a little, as I was more than ready for a sleep myself, so the thought of searching through the hundreds of books and toys in his room at this time of night wasn’t an appealing prospect.  But, because I knew that he wouldn’t be able to wait till tomorrow and he wouldn’t settle, we set about starting our mission.

His room is jam packed full of books, magazines and random photos and clippings that we have carefully saved from the twelve years of his life. It’s his own Aladdin’s Cave of randomness.  But to be honest, I didn’t think that there were any McDonald’s boxes in there.  So I began to prepare myself for a big, violent meltdown.  However, we carried on with the search.  And after about ten minutes of him pointing where I needed to look, sure enough two McDonald’s Happy Meal boxes were found, under a pile of jigsaws.  He was a happy chappy again.  I inspected the boxes and they were from 2007 and the one he was most excited about featured some little known Pixar film that didn’t exactly set the cinemas alight.  However he remembered the names of every single animal character on the box when I asked him.  Amazing stuff.

In stark contrast, last week I was telling someone (who has only recently got to know William) that he eats the same thing for tea six days out of every seven. He has my home-made chilli and pasta Sunday through till Friday, and then he has a take-out treat of chips and garlic bread on a Saturday.  He has done this for as long as I can remember.  It’s just what he does.  And I don’t mind as I can add fresh veg and he doesn’t realise.  The person I was telling asked me how he knew what day of the week it was.  This really shocked me.  And offended me initially, if I’m honest.  Although he has major problems with language and even the simplest of social concepts confuse him, his understanding and love of time and routine is second to none.  He even knows what days of the week it is during the Christmas break, when nobody else can remember!  For someone to think he was unaware of what day of the week it was, was just totally laughable.  So I explained to the enquirer and politely set him straight.

One of my son’s school pals who is also on the spectrum has recently revealed his amazing aptitude for spelling – it just comes effortlessly to him. Who knew? I think it even shocked his mum!  Our children are just full of wonderful surprises and who doesn’t love a surprise?

All this helped me to decide that my message for Autism Awareness Day is this – never underestimate my boy. Never judge him.  Just because he cannot talk does not mean that he doesn’t understand.  Talk to him – get to know him – if he’s doing something bizarre – ask me what he’s doing – I’ll explain.  Gladly.

Get to know someone with autism. I promise you that your life will never be the same.



Different Love

​People say ‘I love all my children differently’.  I totally agree with this.  It’s not that you love one more or less than the others, but you love them in different ways and for different reasons.

As well as our son, we also have two daughters.  I love my eldest daughter because she is kind, dependable and reliable; because she is creative, clever and sensible.  Because she is mature for her age and she is a natural carer.  I also love her because she is the mirror image of my husband and when we watch trashy TV together we laugh at the same stupid things and do simultaneous *eye rolls* at irritating people.  

I love our younger daughter because she is my baby.  Because she is the third child I so desperately wanted and we took a big risk having her, because of our son’s autism (our first daughter was already born before our son was diagnosed).  Because she is a little bit wild, like her crazy curly hair that is never neat.  Because she is a natural risk taker and likes to shock people to get a reaction.  These lists could go on and on….I’m sure you get my drift.

When you have a child with additional needs, the love you feel is different again.  It is a love that takes your breath away, quite literally.  It is a bond you cannot even begin to describe to anyone unless they are in the same situation.  I’m not saying it is stronger than the love you feel for your other children – it is just totally and utterly different.  Why?  Because it has to be.  Because it is a love that will push you to your boundaries both mentally and physically, right to the end of your life.  Because it is a love that will require you to make every decision for your child.  Because, in my case, it is a love that requires me to be my son’s voice.  And that is huge.  Massive.  All consuming.  That’s why it has to be different.

A Love Hate Relationship

I think it’s fair to say that some days I hate autism. I mean I really, really hate it.  Today is one of those days.

For the past four days our family has had the dreaded yearly sickness bug. It usually strikes around the October half term and this year has been no exception.  It has worked its way around the children one at a time, starting with the girls and ending up with our boy.  Obviously it is awful watching any of your children being ill, but with the girls, they can understand what is happening to their body and know that after a while, they will start to feel better and things will get back to normal.

However for our boy, his autism means that not only is he feeling really poorly, but also his world is turned upside down. His beloved, ridged routine has been well and truly turned on its head.  He is not eating or sleeping at the same time, or doing any of the things he usually does, to make himself feel safe and secure – making him anxious and confused.

This morning when he was starting to feel better he had a big panic attack, shaking and running up and down and asking over and over what is coming next. This is why I hate autism today – because it makes a hard situation even harder for him, it just doesn’t even cut him a bit of slack when he is feeling ill.

I always feel a little awkward saying that I hate autism, as it is a part of my boy, who I could not love any more if I tried. However, it is something that makes his life so much harder in many ways and stops a very clever child from being able to communicate his wants, needs and ideas.  Surely that is a good enough reason!

What’s the flip side then? Why do I love autism? I love autism because it makes him the individual that he is. It makes him clever, creative, quirky, brave and beautiful.  It makes him innocent, selfless and gives him the purest heart of anyone I have ever known.

Never alone

When you’re a parent of a child with special needs, social media can be both a blessing and a curse. Whilst it can be fantastic to hook up with a friend who is in the same situation as you at 2am in the morning and have a cry on each other’s virtual shoulder, it is equally heart breaking to be constantly bombarded by photos and updates from others with (seemingly) ‘normal’ children – doing things that would be impossible for your family to do, because of your child’s disability.  Holiday time is especially hard for me, as I realise that it is more than likely that all five members of my family will never be able to take a family holiday together again because of my son’s autism.  His desire for routine, sameness, and to sleep in his own bed, combined with his extreme anxiety issues, mean that it is just too stressful for him.

My son is in Year 6 now, so will be moving up to secondary school in September. This week, my friends with children the same age as him are busy posting about taster days at their children’s new secondary schools and how their children are having to take the bus to school for the first time.  Initially this made me really sad.  Pondering over which secondary school we would have chosen for him and which subjects he would have been good at.  After a while and reading more of my friends’ posts about missed buses, kids getting off at the wrong stop and other dramas, I actually started to feel quite relieved.

My son has been traveling to school on a bus since he started reception at four years old. He has always had the same lovely transport assistant that has helped him every day.  At no point in his school career will I have to let him walk to school on his own, or get on a bus on his own.  He will never be on his own – and this is my point.  He will never have to ‘go it alone’.  And do you know what?  This gives me a whole load of comfort!  When you enter the Special Needs World you will meet some truly amazing people.  And my wish is that my son will always be surrounded by amazing people that love him (almost) as much as I do.

When I’m out and about and I see an adult with severe autism and learning disabilities with their carer, it does make my heart hurt – I cannot lie. Thinking about the future of your child is perhaps one of the most painful things about being a special needs mum.  But I have trained myself to stop feeling sad.  It doesn’t always work, but I try.  I make myself look again at the adult with special needs and their carer.  Do they look happy?  Are they having fun?  Does the carer look kind?  And more often than not, they do look really happy and the carers do look kind!  But more importantly, the adult with special needs is not alone.

My son will never be sat on his own in a café. Or catching the wrong bus.  Or getting lost in a foreign country.  Or wondering around a scary big new school on his own.  September will bring new challenges and changes for my son, but he will not be doing it alone.


The S Word

Deciding to write a blog post on sleep when you’re wide awake at 2.30 am with your child probably isn’t my smartest move ever. But here goes.

Sleep. A basic human right, yeah? Not for us Special Parents. Most of you reading this who are parents, will probably know something of sleep deprivation and what it does to you mentally and physically. But that usually ends at around three years old, if you have a mainstream child (and I can say this with some confidence as I have two mainstream children too). However, for various, often very complicated mental and physical reasons, most children with special needs have issues with sleep.

Our son has had major issues with his sleep pattern since the age of three. Because of the high anxiety issues associated with his autism, even at eleven years old and using two kinds of medication, he is still unable to go to sleep by himself. He still needs me to lie with him every night (yes, that’s every single night folks) and perform his strict nighttime routine with exact precision. I will not bore you with all the intricate and bizarre details of this, but it is a lengthy process. Even if I have a night out, this routine still has to be performed from scratch on my return.

Last night was particularly bad as it is half term and anxiety is higher, as he is out of the comfort zone of his regular routine. It was around half eleven when the routine had done the trick and he was asleep. Obviously resulting in me not having any kind of child free down time, that all parents crave (and actually require for their own sanity).

At approximately 1.45 am he is awake again and asking to watch YouTube. Ten minutes later he is playing Mr Tumble re runs in my ear and an hour later, here we are still. Being a Special Parent is a tough gig, but this particular part is the toughest.

Technology does help: it’s lovely to log onto Facebook and find friends in a similar situation and have a little on line natter. However it can also be incredibly lonely and desperate. Knowing that the majority of eleven year olds and their parents are fast asleep and pondering why you have been denied that particular human right. For years.

It’s really hard for us to smile and sympathise with parents of toddlers when their children are teething or poorly, when sleepless nights are regular part of our life. And will be for the foreseeable future.

Tomorrow is a school holiday and I’m taking the girls on a day out. So I’ll need to be full of energy and enthusiasm. I’m sure I’ll manage it, as I’ve had eight years to perfect the art. But by the time it’s tomorrow evening I’m sure I’ll be flagging.

Well I can sense a change in my little fella’s breathing and it’s looking like he might drift off to sleep, so I’ll sign off and hopefully catch some zeds myself. Oh no, scratch that. He’s awake again……


D Day

I can remember the day well – July 17th 2008.  Our boy was three and a half years old.  Finally all the months of observations and assessments had come to an end.  The wonderful paediatrician to which he had been allocated had enough evidence to give him a formal diagnosis.  By this point I knew in my heart that he had autism.  At first I was adamant that it was verbal dyspraxia, as he ticked all the boxes for that (actually he has only just received a diagnosis for this condition too, some eight years later) but as time progressed it was quite clear that he was autistic.

To be perfectly honest, it was a relief. It was actually ‘nice’ to have a word to explain why my boy didn’t talk.  Why he flapped.  Why he threw tantrums and did all his other bizarre things.  Something to say to the random strangers staring at him in the supermarket.

Now I was in the club. I could join the groups, meet the mums, the Specialist Teachers and all the other children just like my son.  And that truthfully felt good.  The more I threw myself into it, the more comfortable I felt with having a disabled child.  There was a whole world out there for him, for me as a mother and for our whole family.  And I was off to find it.

Shortly after his diagnosis, I took him along to a group for autistic children and their families. They were showing a film from a visiting mobile cinema.  I walked into the hall and there were around fifteen children watching the film, lounging around on bean bags.  Then all of a sudden one of them would jump up and flap with excitement.  Just like my boy did. Then another would run up and try to touch the screen…..and nobody batted an eyelid, not even the siblings.  Because it was what they were used to.  What they lived with.  What they had grown up to accept.  I was so happy I could’ve cried.

For years I had watched my boy do his quirky little things, make his noises and dip in and out of his own world. I had really struggled to send him to mainstream nursery with children who were speaking fluently and maturely and joining in socially with their peers.  Despite the best efforts of the staff, he stuck out like a sore thumb and that really did hurt.  It clearly wasn’t the right environment for him.  But now he had the diagnosis,  it was the passport to special school and so much more help and therapy.  It was the start of his journey.

Welcome to the jungle

Let me tell you a bit about our boy and his journey.  He was born at 40 weeks after a textbook pregnancy.  We conceived him straight away and his birth was quick, natural, and I did it all in four hours flat without pain relief.  I was literally the proudest woman on earth and when I met our 8lb 10oz bundle of joy, I could’ve literally popped I was so happy.  In fact I cried happy tears for about three weeks afterwards – I have never felt love like it.  He was a happy baby and fed well and slept through at three weeks old (which is totally ridiculous given the problems with sleep he was to develop later in his life!). I know others struggle in those first months, but in absolute honesty they were the happiest of my life – I really felt that this was what I was born to do.  I know how smug this all must sound, but that was truthfully how I felt.

He breast fed well and reached all his physical milestones on time, or even earlier.  He was an extremely attractive baby and was born with his trademark mop of blond hair.  Things were all going great guns until his peers started to develop language at 18-24 months. He just never seemed to want to communicate through speech.  It didn’t really worry me until his two year check with the Health Visitor.  She put him on recall because of his lack of language and also because he was not interested in the building blocks or jigsaw puzzles she had brought.  He was always a book worm and loved nothing better than sitting with his huge pile of books and studying them in great detail.  I really didn’t think anything of it – I just thought he was going to love books like his dad.

The weeks and months passed by and still no words emerged.  He did actually start to produce a couple of animal noises, as toddlers do, but this was very short lived.  He started to go to a local play group, which he seemed to enjoy.  But still no language appeared.  Then after playgroup one day, the leader mentioned to me that she was quite concerned about his lack of speech.  I was hurt initially, but I know deep down that it was the best thing that she could have done, and because of her early intervention we were able to start to look into it. And for this I will always be grateful to her.

The Health Visitor did more checks and referred him through to speech and language therapy and eventually to a paediatrician.  The deep seated sick feeling that perhaps my beautiful boy was not ‘normal’ was gradually rising up in my belly each day. He had several long assessments at a Childhood Development Centre.  Basically a team of professionals would watch him play, whilst noting things down on their clipboards.  It was hideous and I hated every minute.  They were all lovely, kind and understanding but I slowly felt that I was being sent somewhere I really didn’t want to go – the Special Needs Jungle.