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.

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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
Sibling.

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……

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.