Welcome to Holland..You'll never leave.

Welcome to Holland!

"WTF! Holland? I ain't supposed to be in Holland?!"

"Where were you going love? Italy?"

"Hell no! I was going to Thailand. Me and my hubby. We were going to chill on sun kissed beaches, go to some full moon parties. We were gonna drink 80% proof whiskey out of a mini bucket and backpack around the islands. The locals are all very friendly, it's very chilled out you know?"

"Ah, gutted for you honey. Cus you're in Holland."

How the hell did I end up here? I must of blacked out during the flight! Maybe some one choked on a peanut and they had to divert...I'll just sit here until they call my flight again and then I'll be on my way...

What? I can't leave? But I don't know shit about Holland! I don't even know if it's Holland or the Netherlands?! Everybody says different! I don't speak the language. I don't know the culture. I don't like riding bikes! what am I gonna do in Holland?!

But if I've gotta stay in the land of the Dutch then so be it.

The first thing I noticed about the Netherlands is Dang, Holland is expensive! You put the words Dutch in front of anything you can charge triple for it, it's the law! Dutch clogs, Dutch tulips, Dutch weighted blankets..bang for your buck! Within 6 months of being in Holland I was bankrupt! 

Gotta downsize! But my gosh the houses in Holland are so slight that they're just not big enough to accommodate the 12ft trampoline and 8ft climbing frame!

So I seek out some help...I'll go see some Dutch experts to advise how best to live in Holland. Did you know the Dutch people are internationally renowned for speaking many languages and not a one I can understand! All the Dutch jargon had me baffled, it was quite literally a foreign language...I can just about manage dankeval and that's it! Making myself understood seemed an issue to so eventually I stopped trying!

I know, I thought, I'll immerse myself in the cultural highlights of the Netherlands! Historical figures such as Anne Frank (the worlds first historical Beliber!) and Van Gogh...but none of them seemed to reflect the people my newly Dutch children would be! I turned to the Dutch themselves, the people who were Dutch from birth...but they don't really wanna know if you're not Dutch yourself! So I'm a foreigner in my own land now!

Get out and see the tulips and windmills they tell me...but my daughter eats the flowers and Cody isn't keen on things moving by themselves so that's not a big hit!

Psst...they said, there is a way to leave Holland! You just can't eat the Edam anymore...how do you live in Holland and not eat Edam?! My family are destined to stay...

So we start to live like Dutch people...we ride bikes, we saunter down the canals, we smoke pot in cafes and put mayo on our fries but we never truly feel like we belong..

Until we stumble across other ex-pats! 

Welcome to the neighbourhood they say...our little corner of England tucked in the dyke's of Holland! We talk about our lives in our native country. we talk about the places we were visiting before we ended up in Holland. And as much as we appreciate all that Holland has to offer, it was never where we were meant to be. We will always have the photos out of our childhood, always perusing the holiday brochures. 

You see welcome to Holland is a great tag line...

And I like Holland most of the time, the pretty landscape, the cheese! But I will never really understand the language, never truly smoke pot like a local! I'll gaze at Anne Franks house, enjoy a Van Gogh but never really know how relevant they are to a Dutchman...I'll never know the importance of the tulips and windmills because I'm not Dutch.

It's where my children will grow up, they will be Dutch, have a Dutch passport and eat Edam but I will forever be the ex-pat who will never leave!


No Dutch we're harmed in the making of this blog.

He wants to put disabled kids down...

Shocking title. No one would say such a thing surely? No one would hold such beliefs that they would harm a child with disabilities? No one would even hint that they had those thoughts? No one out there believes that a disabled child does not have a right to live on this earth?

Well ladies and gentleman let me introduce to you the delightful councillor Colin Brewer.

When confronted with a disabilities charity at a conference Mr Brewer was in a bad mood. Mr Brewer was feeling poorly. Mr Brewer had had a hard day. So Mr Brewer said a bad thing to these people, who devote their life to supporting and campaigning disabled people. Mr Brewer told these good people, many who probably have a disabled family member that disabled children should be "put down at birth".

Wow Mr Brewer! That's one helluva bad day you were having! That's a vile statement you made. That's a disgusting attitude to hold yet alone voice. What with you being a councillor and all? Not the best opinion to hold, certainly not wise saying it out loud.

You didn't really see the bad in that statement though did you Mr Brewer? You told the national, and international, press you were playing devils advocate. You were being facetious. You wanted a rise out of them. You deserved a kick on the nuts! But, Mr Brewer, what you haven't really gathered from people's appalled attitude is that under whatever circumstances you don't say those things to people. Especially not those people. In fact Mr Brewer, your average person of average intelligence doesn't even THINK those things yet alone utter them!

You left your position and the world breathed a sigh of relief...the nasty man has gone. But now you're back, and by god have you gone to town on this and said some idiotic things again. I didn't think you could be any more monstrous than you already are but now you're giving an interview to a disabilities newspaper and daring to compare killing disabled babies to putting down a deformed lamb at birth! You're bemoaning the state costs of looking after a disabled child when there are public toilets closing down! God damn it people Mr Brewer needs to pee and your special needs child is getting in the way. People are transient according to Mr Brewer, we all die eventually he says..so I guess it doesn't really matter to him if a few people die before their time so he can enjoy his ablutions anytime anyplace he feels like.

But, Mr Brewer, my kids aren't physically disabled. So does that count? At the moment they don't have complex physical care needs? You couldn't tell in uterus there was anything 'abnormal' nor could you tell at birth so what would happen then? They didn't show signs of being autistic until after 2 years of age...but now they are costing the state dearly...using resources for two places at a special school. They cost the NHS medically in tests and assessments. They get DLA benefits...jeez they may even need a spot in residential care..maybe a nice one down by the sea, say in Cornwall. So Mr Brewer..what shall we do with these drains on society now they're not babies anymore? Do you want me to bring them to you to do away with or are you expecting me to do it myself? Maybe you can open up some sort of death camp in all the public toilet buildings you're going to have down there?

In fact, isn't your health in decline Mr Brewer? What if one of those strokes that you claim make you say awful things about good people is so bad it lands you in a wheelchair, with physical care needs, taking up societies resources in a care home? Or is it only babies you want putting down Mr Brewer? I'm confused where this ridiculous notion stops. Because some of your constituents, those wonderful doctors and farmers that hold similar views to you. Those constituents who line the streets to shake your hand. Those 300+ people who voted you back in as councillor maybe they will get sick, or disabled. They are obviously "lucky" enough not to have the burden of a disabled child in their family otherwise they'd "smash it against a wall like a deformed lamb....bang!" (sadly I am quoting from his interview there) but what if one day their son or daughter gets MS or a brain injury (say, from a stroke?!) and ends up needing complex care? What then Mr Brewer? What then constituent?

You really haven't thought this through have you? You ridiculously tried to justify your despicable logic on murdering disabled babies. But after you have finished your Herod like mass culling, well you're going to need to move on to school age children, teenagers, adults and the elderly? They cost too don't they? I mean heaven forbid anyone should escape your mass genocide.

The issue is though Mr Brewer I love my kids dearly. And who's to say they can't contribute? I have dreams for my children. I had them before they were even born. And who's to say a severely disabled person can not do great things with their lives? Two words Mr Brewer, Stephen Hawkins. But of course, his electrical voice box and power steering would be too expensive for your liking, might mean you have to do without a few bins on your hillside walks.

I've tried to treat your comments with the contempt they deserve Mr Brewer. But the truth is, it's heartbreaking to think that anyone can value a toilet above someones life?! Its incredulous to me that you express these views so willingly and try to justify them by saying "other people share your view"...that doesn't make it right?! It just means there are more loathsome people walking the streets of this country than I care to imagine.

I would like to say you are a vile pathetic individual Mr Brewer but I won't. I don't know you personally, but then again you don't know me or my children or the millions of other families you have insulted in such a grotesque way but you're OK with saying nasty things about them so why should I hold back?

I hold back Mr Brewer, because one day in the near future I can guarantee you are going to wish those words had never passed through your insignificant little brain. A shit storm full of your own undoing is coming Mr Brewer, and you're right in the centre of it. You have rattled the cage of a large community with your lack of empathy. You have woken the grizzly poppa bears and there's nothing fiercer than a lioness protecting her children. We are warrior families raised with fight in our blood. And the attention of the whole tribe is turned towards you right now.

Let battle commence my friends......

Thank you autism.

Psst....you. Yeah, you. The one I'm pointing at... You wanna know a secret? Well, you know I wrote sometime ago about namby bamby positivity? Yeh? Well guess what? I'm...errr...feeling...err..a bit, well, positive..yeh, alright, I know! So don't go telling anyone though, right? Cus it's a secret!

Will autism break love?

I know I risk laying myself and my husband bare here but I can't help thinking this is extremely important. I want others to know its not just them.
The plain truth is not many relationships that involve special needs children make it the whole nine yards.

Before we became parents, Lee and I were loved up to the max. We were soul mates, true soul mates. I was searching for someone and he was waiting to be found. Our wedding was exceptional for how loved up the bride and groom were! We had teething problems but we very rarely shouted and screamed at each other once we'd found our groove. I can count on one hand the amount of full blown arguments we had. We wanted to be the best person we could be for each other. Like Jerry Maguire he "completed me".

We knew being parents would put a strain on that blissful lifestyle but we weren't prepared for what happened after the marriage. Miscarriages. Difficult pregnancies. Postnatal psychosis. Mental health diagnosis. Autism regression. Assessment and diagnosis for both kids. Bankruptcy. Alcohol dependence. Aneurysm and life threatening illness. A extremely destructive bout of MRSA. Massive hernia to fix and finally another mental health issue. You can read the drama HERE and HERE.

We've both seen counsellors in our time and both have wondered how on earth we are still standing. We are not really standing, more leaning heavily on each other now. And despite what we've been through we have been there for each other...even if we haven't always said the right thing at the right time! When I became very ill post natally Lee took leave from work to care for us all and when the children were diagnosed he had to leave work altogether as their behaviour became more regressive. So we have been together 24/7 for the last 4 years. We like it like this.

Though we are strong together the cracks do show now. We moved through the acceptance process at very different speeds. A couple in our position very rarely feel the same emotions at the same time. One is ready to move forward as another one dwells on the past. One has a glass that's half empty while the others is half full. We were lucky neither of us were in denial over the diagnosis and we both wanted the same things practically for the kids but that starts to interfere as we move forward. Differences start to show. You start to lose reason with each other. Decisions become difficult. Debates turn into arguments. Who does what? Who does more? Guilt sets in as things don't work out how they should. Blame leads to resentment.

We haven't got this bad just yet but I'm acutely aware of the direction we could be going if we don't accept that the stress of this life, the monumental decisions you have to make regarding the care of your child, will take their toll on our relationship if we let them.

There are fundamentals you have to accept. You must work together. The same as with your children you have to pick your battles. Sniping is pointless. We've started getting frustrated with each other. We got no one else to vent to. We lost friends along the way so we have no one to turn to, but each other. That pressure is huge. How do you cope with that? 

Taking breaks is the answer but we do not get that opportunity. We would love to take time out just the two of us but with the two kids that's a lot of responsibility to give to someone else. 

But I dream that one day Lee and I will be able to spend a weekend together. To get to know each other again. Not to have to advocate, to assess, to monitor, to argue, to mother, to parent, to hold our tongue, to attend meetings after meetings. But to be together as simply Donna and Lee. Lovers. Soul mates. And friends again.

Reinforcers assemble!

It appears I may be raising little hooligans according to some interesting facts on challenging behaviour I learnt from a course I attended?

Autism broke me...

Autism broke me yesterday. It took my already fragile mind and smashed it to pieces. It took my emotional state and shook it until in crumbled to nothing in front of me. Autism broke me and left me scarred.

cont...

There is a big difference between what people see and what is actually happening. If you take what you see or get told out of context it leaves a very different impression to the truthful one...here's why:

It is what it is...

It is what it is...these words ran through my mind on continuous loop yesterday, like a form a verbal water boarding.

It is what it is...we went to the safari park. All was fine along as long as we didn't see, feed, or encourage any animals within 2ft of the car. It is what it is.

It is what it is...we spent £20 on wristbands for the fun fair as last time Cody wouldn't come of the train. This time he wouldn't go near it. It is what it is.

It is what it is. The funfair operators watch as we talked Cody off the floor where he had laid in a puddle in defiance. It is what it is.

It is what it is.

Rainbows and Jigsaws..

So Tuesday was autism awareness day as part of autism awareness month, April...I'm just going for the one day as most of my months are spent with creating autism awareness so to exhaust all my options on one month seems over zealous!

And there begins my blog subject today folks..Autism Awareness Day. Who is it for?

Here's my advice..for what its worth!

I wasn't sure I wanted to write the overly patronising "letter to new mothers of special needs kid" thing but as I contemplated what my letter would entail I thought I'd got as much right as anyone else to force my opinions of what their journey will consist of so I thought I'd give it a go!

And I don't wanna miss a thing....

Every now and again your children will do something that makes you so so proud!

I don't want to miss those moments and not mark them!

LEAVE ME THE FECK ALONE!

SERIOUSLY!! 

Stop blaming me, the mother, for my children's disabilities ..seriously! If I hear it again I'm gonna lose the plot! I've already written about it HERE (I blame the mother) and HERE (I still blame the mother) but once again these shit hole explanations come back to pound me! Every bloody time the bomb of guilt explodes, I scramble to my feet to be blown onto my ass again. I can't cope with this relentless mommy bashing.

Autistic days...

Some days my kids are autistic but some times they have autistic days.
Some days I wake up and I go about my business and my kids have autistic traits...they are picky eaters, or they stim when happy. And I go to bed knowing my kids have autism but life continues as normal.

Then other days like today are autistic days, where you realise just how bad autism can be. Just how disabled your kids are. Just how abnormal life is. Those are days that make me sad. Make me despair. Make me blog.

It starts with the non verbal. When you'd desperately love them to tell you why they are screaming. Cody made lee walk around the block twice yesterday. Screaming at the front door and then walking aimlessly around the road until lee had to carry him home hysterical. Couldn't tell us what he wanted but you can't just ignore it. He's desperate for you to read his mind. And a failure on your part is normally followed by a spew of autism.

If I could turn back time...

Cody's latest obsession is monster trucks and pixars "Cars" so he spends most of his free time viewing his favourite videos of monster jam on you tube. We don't mind, it's great learning style for Cody as its media orientated like his films and TV and he spends time acting it out and verbalising lots. 

What parents want to hear!

I've seen many many lists of what NOT to say to a parent of autistic kids so I thought I'd do my list...

WHAT PARENTS OF AUTISTIC CHILDREN WOULD LOVE TO HEAR!

Sound of a slap..

I've gone my whole life without getting into a fight. No physical rough ups, no cat fights, no bitch slaps. I've survived till the grand old age of 34 without experiencing the sting of a slap.

When it finally came I didn't expect it to be my 4 year old son who delivered the blow. He proper lamped me. The sound reverberated round the room as his palm met my cheek when I tried to dress him. It couldn't have landed more perfectly to produce the biggest pain response. I expected when that moment came I would scream out, lash out but I didn't.

I can't believe she said that!

Here's the truth of it...some days, I don't like my children much...and no, I can't believe I've actually said that out loud but there you go...

Not often do I feel hatred towards them but resentment, anger, sadness, frustration and dislike..? Yeah, sometimes truth be told yeah I do feel like that.

VOTE FOR ME!! VOTE FOR ME!!!

hello my lovely readers, youre looking fabulous today and may i say whata lovely blouse you're wearing?!

yes, i want something from you!

i want you to vote for my bloggyness in my first ever blog competition!!

oooo controversial!

"do you mean when i use the word "muggle"? its a reference to harry potter, where it is used by jk rowling to distinguish between the characters who live a certain way (with magic) and those who live a different life style (muggles or non magic folk). its a term of endearment in the book and i use it to show the difference between my main characters and those who dont live the same way as we do. 

What a load of crap!

That's what i feel people would have said to me had i been the parent of a muggle child (non magic folk).

I really truly don't think id have been a very good mother! i have to clarify this is for ME PERSONALLY and not a reflection of what i think other parents are like! This is me reflecting on the person i was and the person i am now and i don't think i'd have been that good! And here's why...

i am a warrior mother!

So I'm sat here on a lazy Saturday night watching "the matrix". I'm watching the female character, Trinity, kick the ass of the agents ably accompanied by Keanu Reeves and my mind starts wondering...as it does!

So, what have we learnt here?!

There's a long list of life lessons my children have taught me....feel free to add to my list!

Yes...but is he as bad as rainman?

Now, I've never been one for competition. I didn't pursue my dream of becoming a famous actress because the scene was too competitive for me! I guess I've never really lived what others would consider a "normal life" so that my daily movements couldn't be compared to others. So no, I don't like comparison or competition.

And yet I find myself in a strange race at the moment. I can see it taking place all around me and I can feel myself being buffeted along to the start line. I'm gonna call it the "rainman" race.

And it's between parents of special needs children.

the dirty word!

im soooo tired of the overuse of the dirty "P" word...positive thinking!

tis the season to f"ck off!

where were you when the shit hit the fan? tell me that eh?

you don't get to wander in here when you see fit, stare at my children and disappear again. you don't get the right to call them darlings and dissolve into the background when the sun ain't shining? you are here for the duration or not at all. you don't get to pick and chose...we don't so why the hell should you?!

I've become so numb...

My husband is in hospital again. He's just come out of surgery. He's bleed inexplicably somewhere and has just had part of his stomach removed in the hopes that will help. I've written before about my soul mate and my feelings on not having him here but I have to write tonight too.

happy birthday part two!

Autism and Love is 1 year old tomorrow! As part of my birthday celebrations this week im looking back on my blogs over the past year...

the two id like to point out today are from earlier in the year...

Happy birthday to Autism and Love!

yes folks...this week, on the 11th December i will be one year old!

im taking this time to search back through my blogs and upload 1 or 2 a day...starting early in the year till present day.

ramblings from my head!

I don't want to be around my children today. There I've said it. I'm a terrible awful mother but I've had enough today.

This is dedicated to the one I love...

Its 3am on Sunday morning. My husband is not with me tonight. He hasn't been with me for 2 nights now. He's in the hospital. An emergency arising from the stress we live with has taken him away from his family for the foreseeable future. 

the unspoken truth...

I didn't know if I'd ever write this blog because of, well many reasons really. Personal circumstances. Other peoples opinions and general trolling from insensitive people but I feel that my readers now understand my point in writing an honest blog and most, in fact nearly 99% agree with many of the sentiments in the blog.

And your chosen subject is?

A favourite phrase you hear often once you receive a diagnosis is "you're the expert, you know your child better than anyone else."

No I bloody don't! I haven't got a sodding clue what the hell theyre doing most of the time! Why on earth should people assume that you are suddenly an expert in autism once you get that diagnosis?

Top 10 sentences....

In the historic tradition of the woman's obsession to make lists I present to you...

Top ten sentences you hear in my autistic household! Naturally most of these will be said by myself or husband as in the main the kids are non verbal..I think you'll spot the kids sentences...

Lions and tigers and bears...oh my!

I had the opportunity to take the kids to a Halloween party at the clubhouse on the caravan site we visit. I was excited. I'd picked out costumes. I'd imagined myself taking Jesse onstage in the fancy dress competition dressed as Mr tumble. I'd imagined...

Wise words...from rocky balboa?!

Rocky balboa:  "Let me tell you something you already know. The world ain't all sunshine and rainbows. It is a very mean and nasty place and it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain't how hard you hit; it's about how hard you can get hit, and keep moving forward. How much you can take, and keep moving forward. That's how winning is done".

No woman No cry...

Gather round children mommy wants to tell you a bedtime story...

Once upon a time mommy one, daddy one, boy one and girl one were ready for bed so they bundled up the rickety hill and settled into their obligatory bedtime routine until boy and girl one were all sleepy head and tucked up in bed! Mommy one snuggled down and fell asleep in front of the crime and investigation channel and daddy one went to shoot at imaginary men on his Xbox.

am i autistic?

so went to see a consultant geneticist today as we are investigating whether Jesse has underlining issues caused by a "syndrome" due to certain facial features.

whilst there the consultant went through our family history to determine whether any other family members had autism. so this got me thinking...am i autistic? and the results might surprise you...

Beauty is in the eye of the beholder...

The sun is shining, the birds are singing, the dogs are frolicking on the lawn and today feels quite peaceful. It's unnerving! Why is everything and everyone so quiet and..what's this, actually quite..happy?

Welcome to my world...

So you've got a normal child? Congratulations you must have done something right!

What's life like for you then? Got dreams and aspirations for you kid? Going to school are they? Got a nice big group of friends maybe? Do you have sleep overs? How wonderful for you and your child! Bet you read together don't you? Or help with home work? Do you watch them enjoy sports and hobbies? Bet sometimes they have tantrums and you pull your hair out at how cheeky they can be? Tsk...damn kids! 

i was born to make you happy...

this is the toughest area for me at the moment. how far do you go to make your children happy? 

my answer to that would be in direct correlation to how guilty you feel about whats "happened" to your kids?