Wednesday, 6 November 2013

Bon Voyage....

After some serious consideration and lots of navel gazing I have decided that I've successfully reached the end of this part of my journey.


I will not be blogging again for some time. 


This is not a bad thing, in fact it's a very very good thing for me because it means that I no longer have any soul searching to do. I no longer have to beat out my troubles on the keyboard. My therapeutic computer counselling session is over...for now.


I didn't want to leave it without explaining my departure but I feel I've said everything I need to say and my focus is turning towards helping others and more importantly helping myself in a different way. Blogging has been fantastic for my path to acceptance but I'm comfortable where I am now and don't feel that writing any more would benefit me or my readers.


My dear supportive warrior readers. Thank you for holding my hand as I journeyed through the darkness and into the spotlight of acceptance. I hope that as I share old posts with you for a while that you recognise how far I've come but also how far you have come too. I hope that I've imparted wisdom along the way, that you maybe recognised yourself somewhere amongst the words, that you didn't judge me too harshly and that you are happy I got there in the end.


Because I did, and Lee has and my kids have been in that place for a long time just wanting for their mom and dad to join them. 


I look back now on my older posts and see how raw it all was. I see the pain, the anger, the confusion of the first few months. The jealousy, judgements and self doubt that crept in. The sad resignation of a year or so ago when I gave up on hope. And then slowly the dawning of a new era of acceptance.


I think the turning point for me was realising my children, regardless of their capabilities or challenges, still had a place in this world, still had reason for being. My job as their mommy was to help them reach that potential. It was time to leave to self pity party I'd been forced to go to and join them in their world instead of mourning for mine. If I gave up on my kids who would they have left?


Since that point the world has been a far far better place to be. Its not that my life isn't tough and the challenges this diagnosis bring not just to my kids but to me and Lee are overwhelming some days but my advise to anyone know would be sure, ask yourself questions but not "why me? why them? why us? why can't I?" ask yourself  "what is that behaviour trying to tell me?" Once you accept that everything is happening for reason you start to find why this has happened to your family.


To make you see more clearly what your purpose in life is. 


Potential. Theirs. And yours. 


Acceptance is freedom my friends.


Have a safe journey where ever you are heading and give your kids a hug from me. 



Saturday, 19 October 2013

The devil on my back...

Throughout my life there have been songs that I have connected with on a deeper level...you know, those songs that you put on repeat and scream your heart out to or dance around the living room losing your plot until you're all spent and can move no more. 

In my twenties it was "Survivor" by Destiny's Child. When I was post natally poorly it was "Numb" by Linkin Park (I even had the tattoo "more like me, less like you" written around my wrist to remind me how important those words were to me.)

Recently I've felt a deep connection to this...

Regrets collect like old friendsHere to relive your darkest momentsI can see no way, I can see no wayAnd all of the ghouls come out to play

And every demon wants his pound of fleshBut I like to keep some things to myselfI like to keep my issues strongIt's always darkest before the dawn

And I've been a fool and I've been blindI can never leave the past behindI can see no way, I can see no wayI'm always dragging that horse around

And our love is pastured such a mournful soundTonight I'm gonna bury that horse in the groundSo I like to keep my issues drawnBut it's always darkest before the dawn

Shake it out, shake it out, shake it out, shake it out, ooh woaaahShake it out, shake it out, shake it out, shake it out, ooh woaaahAnd it's hard to dance with a devil on your backSo shake him off, oh woah

I am done with my graceless heartSo tonight I'm gonna cut it out and then restartCause I like to keep my issues strongIt's always darkest before the dawn

And it's hard to dance with a devil on your backSo shake him off, oh woah

And it's hard to dance with a devil on your backAnd given half the chance would I take any of it backIt's a fine romance but it's left me so undoneIt's always darkest before the dawn

And I'm damned if I do and I'm damned if I don'tSo here's to drinks in the dark at the end of my ropeAnd I'm ready to suffer and I'm ready to hopeIt's a shot in the dark and right at my throatCause looking for heaven, found the devil in meLooking for heaven, found the devil in meWell what the hell I'm gonna let it happen to me

"Shake it out" Florence and the Machine.

Those are some of the lyrics and every word is so poignant to my families journey but most especially to me.

My regrets, my demons and their pounds of flesh, my ghouls, my past, my issues, my graceless heart....all those things that relate to where I was and who I had become. That heavy load that I carried round before and since the children were born. Those things that I linked with my children's diagnosis and the behaviour I exhibited after that. That horse that I burdened myself with. It is time to bury that in the ground.

Someone once said to me imagine every "issue" you have is placed in a box. Every box you have is placed in your arms. Now hug the ones you love? You can't. Unless you place those boxes at your feet and step past them to reach others in front of you.

The devil on your back. 

I don't believe this is a religious or moral tale. I believe she sings about the moment I have come to in my life. I can not dance with the weight of the world on my shoulders. I can not sing with toxins in my lungs. I can not be clear of mind when I'm playing out an old story. Looking for heaven you are always going to find the devil in you. Looking for the positive you will always see the negatives unless you just let life "happen to you".

My Lee gave me the soundest advise the other day. My plans had been messed up. Cody was off "sick" (in quotes because he actually wasn't sick at all!) and he was spoiling for a fight. Beating the crap out of me which always takes me to such a dark place. (read I blame the mother... to explain my reaction to the kids being physically rough with me) I was so beside myself for some reason that I wept all morning. When Lee comforted me we talked about my new mantra "pain is inevitable but suffering is optional" and how I could look at this moment and think, well yes things aren't good but I don't have to dwell on it. He looked me in the eye and gave me his very Buddhist take on that mantra. "Donna" he said, "shit happens".

Yes, yes it does. 

And so, I can carry that shit around with me and spend the day wailing like a banshee. Instead, I took my son out for a lovely bit of quality time. Jesse was at school so he had some perfect mommy and daddy time and he loved it. He was as good as gold. Beautiful day. And when we returned home and he launched his usual attack on me I decided to put down my issues and try to see what was "really" happening because sure as hell he isn't "really" trying to kill me. 

As he kicked against me, I pushed back on his feet and he went still. Still applying pressure to my hands and I pushing back. He grabbed at my skin so I held onto his hands tight as he tried to pull away and he lent right back into the stretch. As he pushed his face into mine I rubbed my skin against his. As he threw himself towards me I gave him a massive bear hug squeeze and together we interacted like this for 30 minutes. I wouldn't have last 5 before. Each time he started I ended up shouting and pushing him away. Because I didn't like it or because I saw something totally different to what was actually going on. It's not what happens to you that matters, it's your response that colours that moment.

He has needs that I couldn't address because I was letting the devil pull me back from him. All he needs, all he wants is some deep pressure but until I could shake it out of me I couldn't see the woods for the trees. Sometimes you do just have to let it happen to you.

Cody has taken to listening to music quite intently... his chosen song of obsession at the moment? 

"Shake it out" by Florence and the machine.... 





Sunday, 6 October 2013

Positively Special

Hello and sincerest apologies for not blogging for yonks but I think you'll forgive when you hear what's kept me away for so long!



 I've been doing this....


and this....



and I've got this to do too...



So I ain't been shirking honest Gov!!?


A few months ago a dear friend of mine, someone I was truly inspired by when I started this journey introduced me over cyber space to a woman who had set up a support group at her mainstream school for parents of SEN kids. We hit it off. We both have mad hair so it seemed a match made in heaven! She's now a very special friend. She tapped into something in me and it seems I tapped into her psyche too and together we decided to create "Positively Special" a social support group for parents of children with special needs.


Our aim, to provide parents and families as a whole social opportunities. To befriend other parents in similar situations, to face challenges that other families would take for granted such as day trips and special events. To give the children a place where they can be themselves but equally as important as space for parents to be themselves too.


Many people have inspired me through this journey. People that then became wonderful friends. A friendship born through necessity that became a cherished relationship.


Often I would hear that saying "You'll meet someone in this journey that will change everything for you, your angel, your saint" and I used to think I haven't meet them yet. But I was looking in the wrong place, I was waiting for the professional to sweep in and make everything OK....I should have realised that I had saints and angels around me everyday. Warrior people that inspire me to make change. Parents that deal with challenges everyday but can still say something positive at the end of a bad day. Friends that taught me to view this journey differently, see my kids differently and embrace the world in an entirely new way. Without those friends, without those fleeting comments, that passion, the drive they have, I wouldn't be the person I am now...I'd be the person in was 18 months ago when I started writing.


When I look back on this incredible diary of emotions I realise just how far I've come. My gosh have I been to the floor of hell and back up again and I wouldn't have made it out unless I was surrounded by saints to shine a light out of there. So thank you all... 


visit www.positivelyspecial.co.uk to find out more xxx

Sunday, 15 September 2013

Cherokee rose..

The legend goes that as the Cherokee tribes were being removed from their lands the mothers wept for the children amongst them. They were scared for their childrens futures, unsure and uncertain the little ones would survive the harsh journey ahead. Frightened they would not. 


The elders knew the fate of the children were in the hands of their mothers. Their survival depended on them so they prayed to the gods to send the women a sign, something that would lift their spirits and give them hope for the future of their children. Something to give the women the strength to carry on.


The next day there grew a beautiful white flower where the tears of the mothers had fell. The women saw the miracle and they knew they could face the future with a blossoming sense of hope for their children, their families. From that point their ablity to overcome adversity strengthened and with belief in their hearts they continued their walk towards a new but uncertain life.


The white of petals of this beautiful flower symbolise the tears the women had shed for their children. The vine is strong and supportive like a mothers soul, holding the flower upright to face what may come. A delicate blossom that can withstand the harsh challenges life throws at it. 

The cherokee rose grows along the trail of tears to this day.



Sunday, 8 September 2013

Parent spectrum disorder...

You will meet many parents through this journey who don't respond to autism the same way you do. I've written before HERE that even though you are seemingly in the same boat you are still very different people and this leads to many different "truths".

I'm trying to change myself in small steps. What I'm desperately trying to understand now is that the opposite of your truth is also true. Just because they have a very different truth to you does not make them wrong. It merely makes it "their truth".

It's a hard fact of life that not everyone is going to view life as you do. So not everyone is going to view autism as you do. Even those supposedly travelling down the same path are having very different experiences on an emotional level. They have to be. Our upbringing, parenting and emotional well being all speak through the people we are. We are all at varying cross roads and a diagnosis in a child impacts on a different level in us all. So, though one person may appear to be at the same stage as you in time or space they will fundamentally be in a different place emotionally.

I've written many times about my perception of other parents and cast my judgement on them. HERE with what I referred to as a namby pamby positive attitude and HERE when I discussed the "poor me" or what I later heard called the "Martyr Mom". I'm not known for holding back in my writing and you can clearly see that. Yet at certain points in the last 2 years I've been in all of these categories and probably a few of my own unique ones too. You can not read twitter or facebook without your blood boiling over something you've read! But it's time for me to stop reacting.

This is how I view myself, I am a proactive parent. I'm a child lead parent. I'm a hands on parent. I'm an entitled parent. My children I believe are flourishing because of the way me and lee parent. It works perfectly...for us. That's my truth. Your truth may be very different. You may be quieter than me, you may not like to cause the trouble I've been known to cause services and professionals alike. You may follow a more rigid routine because that suits your children better. You may not apply for everything just because you can. My truth isn't better than your truth. My way isn't necessarily the right way, nor is it wrong. It's just another way. Your truth works in your home, with your children and its perfect for you just as my truth is perfect for me. You may not do things the way I do but I am OK with that, because that's your truth and I will not judge you for that as I, or anyone else, may have done before.

Too often I read parents telling others they are "doing it wrong". That their truths are false. That their story is a lie. That their lifestyle is wrong. I've been on the receiving end of this many many times and I've written about it even more! Personally, the judgements I made on others came from a place of fear. Honestly. If I look deeply into the root of my emotional response to others it comes from the belief that maybe I was actually doing something wrong. I would criticise the actions of others and when I was criticised in turn I would be deeply hurt by their opinions. I thought it was simply a matter of "who are they to judge me" but on a deeper level it was because it questioned the very essence of who I am. It tapped into my darkest fears that I may be wrong. My response was anger, sadness, confusion, self doubt or criticism of them.

Though people may say to you "I'm right and you are wrong" I believe what they are saying is..."If you are not doing things like me then maybe that means that I'm not doing right. I need you to validate my "truths" by making them yours too." And if you are like me you will respond with "I will justify to you why I am right and you are wrong so that I can feel more confident in my choices" or slip into a deep seething despair cloaked in anger.

If I had more belief in myself, my truths and my lifestyle I wouldn't need to judge or justify to others. Nor would I be overwhelmed by other peoples judgement of me. Pain is inevitable. What people say can hurt us. There are bad things happening and bad people out there. But suffering? Suffering is optional. We can hold onto that emotional response and therefore delve further into our fear or we can accept that that is their "truth" and that's fine, I will not judge them back, I will not dwell on the pain, as I have my truth and I am comfortable with that.

This does not mean that I am a pushover. That I will not respond if I see or hear something that does not agree with my "truths". Of course, it's only natural you won't like everyones opinions or you will emotionally react to something. But at this point I will strengthen my resolve by questioning myself  "OK, you don't agree. You are angry or upset but is it appropriate for me to say something? Will it be beneficial to the OTHER PERSON (not for my own gain/relief) if I say something now? Where in me has this response come from and why? Is it kindness that encourages me to speak or something else?"

Ultimately that all I want. Kindness. Surely every parent, whatever their truth only has their children's well being at heart? Trying to be the best version of themselves they can be? When they don't act in the interest of their children that may be the time to speak up. Until that point you may cause someone else hurt and upset by speaking out. You may be destroying someone else's truth and we all know how that feels.

So now I just have to live like that. Why? Because in the end I want to be the best I can be. Not by other peoples standards but by my own. I don't want to live with the fear anymore and I want my children to be free of that too. I want them to have strong beliefs in themselves, to know and be confident in their truths and I am making a start by leading through example.....wish me luck!






Thursday, 29 August 2013

My kids can....

They can. I didn't think they would but they do. I wrote them off but they've come back fighting and now they can. And now I know they can.

This blog is a memoir of emotions. It's not a journal of my life or my children's lives. It's a week by week account of my feelings through this life. So I don't often write about what we've done or how things went unless I have an upsurge of feelings on the matter. But this doesn't mean that those things aren't important to me. It doesn't mean that I'm not observing my children or their achievements. It doesn't mean that because the last two posts have been full of anger or upset that life isn't sweet.

Life is very sweet. We are almost through the school holidays and regardless of a few meltdowns I can say its been a joy to be around my children. To get to take them on outings, interact, create activities for them to participate in. I have really enjoyed reconnecting with them in a way I don't get to do when they are at school all day. I'm exhausted but content.

Maybe because of that I've noticed more about them? Maybe it's the book I'm reading (The Spark by Kristine Barnett) about a mother nurturing the talents her autistic child had that has me thinking about that untapped potential? Cody and Jesse can do so much that a year ago I couldn't see. It wasn't that they couldn't do these things a year ago I was just in a very different place, an area in my life that obscured the little lights from my view.

But I'm not in the place the majority of my time now and I can see clearly now the rain has gone. My children can do so much. They have a place in this world and as their mother, as their parents we have to believe in them so earnestly to help them reach that place.

I remember reading a statement by a mother over a year ago that spoke of her son. She said that as an adult with autism he still lived at home, couldn't do his washing or cooking but he was a lecturer at the university he had attended to gain a degree in his passion subject. He had obsessed on his passion since an early age, studied it to masters level, written papers, books and became a lecturer the subject sharing his passion with others. He had a place in this world and although the fundamentals of life were still supported he found his calling.

It really struck a cord at a time when I was finding it difficult to see my own way through this new life yet alone my children's.

But now I can see my children start to develop their own path in life. And therefore I can see mine. 

Its early days, very early days but I can see now how I can help them. More than the best schools, the best therapies, the best toys...I can nurture their passions. 

Focus on what they CAN do, not what they can't do.

Because they Can do so much.



Sunday, 11 August 2013

The problem isn't the problem...

There's a meme doing the rounds with the wonderful visage of Captain Jack Sparrow. The meme reads...

The problem isn't the problem. The problem is your attitude to the problem.

And then it probably says something quirky like "Savvy?" or summat!

And yes Captain, I do savvy. I savvy exactly the point you are trying to make.

We've just come back from a fabulous week away at the Grandparents caravan. It was wonderfully chilled. The children were ecstatically happy. Lee and I got some desperately needed down time and it was indeed the closest thing to a "normal family holiday" we have had so far.

And then we came home.

No one likes coming home from holiday, least of all (apparently) my kids. Jesse was vile about being in her own home again and why wouldn't she be? Theres no sea, sand, club house, arcades, swimming pool. This place sucks and she was gonna show us just how much she hated being home. Which is a lot!

Cody wasn't much better. He embarked on a series of mini meltdowns of epic proportions. 10 minute eruptions that started at level 10 and got worse. He didn't want to be out of the house and Jesse didn't want to be in it. And throughout the day both children made the whole experience worse by trying to tear their way under our skin using their own bare hands.

I was in utter despair. My heart was made of lead. I couldn't cope with the rapid change from bliss family time to excessive grief and upset. Everything I tried to do to make the situation better was wrong. I turned to social media for support, ironically the one place that can make you feel so isolated. 

All my life I've wanted close friends and it takes a day like yesterday to realise just how alone you are. I felt hated by my kids, my friends, my family, my husband and myself. I felt useless that I couldn't help my kids. That we were alone. That we hadn't been with friends enjoying ourselves. I felt forgotten about. And I grieved that my kids would never have the friends they deserved either. That they never got the help they needed today.

Its mind numbingly irrational I know and I spent the day in tears. Sobbing, body racking tears. My god I hated myself for being so emotional about how awful the day had been but problem after problem after perceived problem piled on top of me until I literally could not take anymore.

Then I thought of Captain Jack Sparrow. The problem isn't the problem. The problem is my attitude to the problem. I still let autism and all its challenges stress me out. I still regard every meltdown as a catastrophe personally aimed at my heart. I still cling to that life that I wished I had. I observe others with jealousy. I take everything on board. I wish for things to be different. The problem isn't the problem. The problem is my attitude to the problem.

Do I ever think I'll be able to separate my emotions from my problems. I doubt it. I wish I could but right now I think I'm still too raw to view things at more of a distance. I want to bring positivity into my family home but sometimes the black dog of depression lurks at my heel and I pay him too much heed. 

I know that my upset yesterday was exacerbated by me. I didn't need to make everything so traumatic but I think I learnt several lessons through my sorrow. Things just are what they are. No amount of personalisation is going to change anything and its most certainly not going to help anything. If I can learn to view the problem with a different attitude then maybe I can learn to heal myself. Because I still have a lot of healing to do. There are shadows of my past cast across my present. Not everything is my fault. 

Yesterday, I should have looked at the meltdowns and taken them for what they were. A reaction to coming home rather than a personal attack on me bringing them home. I should understand that I'm strong enough to cope with bad days without needing the affirmations of others. I doubt myself and I shouldn't.

But Captain Jack, until the day that this becomes a natural process for me just stick around so your pretty face can remind me. 

The problem isn't the problem. The problem is your attitude to the problem. Savvy?



Thursday, 1 August 2013

Fight the good fight.

Your child has autism.

Here's your rainbow pack, a leaflet on the main autism charity in your area. Here's some information on family fund. Oh and here's your boxing gloves, your body armour, your chainmail vest, your lance and your cavalry horse for when you do battle. Hope you've got room in your boot?

"Prepare for a fight" everyone said. 

Now you might not believe me but I'm not really a confrontational person! I can tell it like it is and I can give as good as I get but I won't go looking for a fight. However, in the space of a year I've found myself in two official complaints procedures and taken on at least four other 'crusades'! Not out of fun neither! Contrary to popular belief I don't like being wound up over things it's not good for my bipolar! Yet here I am, insides churning from yet another round of "tell it like it is" to another load of 'professionals'.... And guess what, it's upsetting...

It's soul destroying. You daren't ask for help because you know the chances of you getting it without having to raise your voice up an octave is slim to nothing. I'm upset that once again I have to argue the toss with self proclaimed experts who have met my child for all of 10 minutes on who exactly is the knowledgeable one here? I'm tired of wasting my energy that is in short supply and desperately needed for raising my children on jumped up jobs worths protecting a pot of money that's no good to anyone if they don't spend it on those that need it.

And my children need it. I never ask for a thing we're not entitled to. Its not about getting freebies or getting rid of the children for a bit or settling for something because it would be easier. If its in the best interest of my child and they are entitled to it, they're bloody well gonna have it or do it and I'll tear you another one if you tell me different.

Trust me when i tell you...I don't want to fight. Its exhausting, stressful, upsetting and it's all encompassing. I shouldn't know the complaints team by first names. I shouldn't need to email the head of service if I need support on something. But that's what it comes to. And after all the upset I go through I'm sure they mutter under their breath that I'm a damn trouble maker instead of asking what's wrong with the system that I have to keep complaining to get my families basic needs?

I lost my cool in a meeting yesterday because of the jobs worths. I don't like losing my cool, it affects me for days and I've still been distressed today because of this meeting. I'm overwhelmed with the lack of compromise some of these services can make. At the very least do me the courtesy of empathising. Remove your head from your criteria and realise that our lives are not "black and white". There are far more than 50 shades of grey! I have to say on this occasion I was close to apocalyptic at the sheer lack of understanding on these so called professionals part.

Professional "Everyone in this room agrees with me."Me "I don't, my husband doesn't.."Professional "Every professional then..."Me "How am I not a professional in my own children?"Professional "Well, you're not a health professional."

And for the record not every professional agreed with him either. But it's this arrogance that distresses me the most. The pig headedness. The refusal to see it from our point of view. The broken promises. The feigned interest. The contradictory information. The false hope that these people install in you and then wonder why you are so upset when they disrespect you, your family and your needs.

But then of course you're not allowed to get upset. You're not allowed to talk over those who are talking crap. You're not allowed to become emotional (yes I've even been accused of turning on the waterworks!!) They take your time, your sanity, your emotions and then get on with their daily lives like nothing has happened. To me its like a virus that lives under my skin for weeks after its all over.

What do they want from us? We are parents. Fighting. For our children's needs. Asking for help. Needing some answers. And most of the time we are simply being let down.

Just once I would love to contact a service, ask for their help and receive it.

Until that point...

Once more unto the breach, dear friends, once more;...But when the blast of war blows in our ears,Then imitate the action of the tiger;Stiffen the sinews, summon up the blood,Disguise fair nature with hard-favour'd rage;Then lend the eye a terrible aspect.....Now set the teeth and stretch the nostril wide,Hold hard the breath and bend up every spiritTo his full height....The game's afoot:





Tuesday, 23 July 2013

What do you see?

I can't work out if I'm different or something? 

Its becoming more apparent that I tend to allow things to happen that other parents wouldn't. I've got stick before now for it. I've had eyebrows raised at me. Comments made to me and about me. 

I'm the one that "lets her kids do things".

Wednesday, 17 July 2013

To be or not to be? That is the question.

When I first entered this world of parenting I had a vision of what my life as a mother would be. I had a dream, I had need. We would laugh about lying in bed and seeing our little toddler waddling up the corridor to our room, huge saggy nappy and bottle in hand. 

Monday, 8 July 2013

Less supermom, more Daddy Pig!

We all have heroes that we look up to. We all have parental inspiration.


 So today i'm taking the time to explain why Daddy Pig is my hero!

                                                  

Sunday, 30 June 2013

Nothing to see here...

So I haven't posted for over a week which is pretty unheard of for me in the whole year I've been blogging.

So I was rattling my brain for drama I could write about? What's awful that's happened? What terrible emotions can I release on the unsuspecting passer by? What anger and hatred is bubbling below the surface waiting to erupt? But I couldn't find anything traumatic to write about??

Wednesday, 12 June 2013

Poor me...

I was going through a terrible period in life about 10 years ago. Very traumatic experiences had genuinely happened to me and I had every right to feel sorry for myself. What I didn't realise was how long I continued to let this dictate a section of my personality as it did. Until someone called me on it.

Sunday, 2 June 2013

Dear Professional...

I write to you as a mother. As a mother of children with a disability, special needs, learning difficulties, physical and medical issues, brain injury, challenging behaviour, sensory processing disorder, epilepsy, downs syndrome, fragile X, cerebral palsy, autism. My child could be any of these but the simple fact is I write to you as a mother asking for help.

Tuesday, 28 May 2013

Groundhog days!

There's a saying I like to use...We get bored alot faster than they do! They = kids!

Sunday, 19 May 2013

Welcome to Holland..You'll never leave.





Welcome to Holland!

Sunday, 12 May 2013

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?

Friday, 10 May 2013

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!

Saturday, 4 May 2013

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.






Monday, 29 April 2013

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?

Tuesday, 23 April 2013

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.

Monday, 15 April 2013

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:

Saturday, 13 April 2013

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.

Wednesday, 3 April 2013

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?

Sunday, 24 March 2013

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!

Wednesday, 13 March 2013

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!

Friday, 8 March 2013

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.

Sunday, 3 March 2013

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.

Wednesday, 27 February 2013

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. 

Sunday, 17 February 2013

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!

Friday, 8 February 2013

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.

Tuesday, 5 February 2013

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.

Wednesday, 30 January 2013

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!!

Monday, 28 January 2013

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. 

Sunday, 27 January 2013

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...

Saturday, 19 January 2013

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!

Sunday, 13 January 2013

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!

Tuesday, 8 January 2013

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.

Tuesday, 1 January 2013

the dirty word!

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

Sunday, 23 December 2012

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?!