#bath My boys ... just thinking about Autism differently: Day 5 #bath My boys ... just thinking about Autism...

#bath My boys ... just thinking about Autism differently: Day 5 #bath My boys ... just thinking about Autism...: Day 5 #bath My boys ... just thinking about Autism differently I changed my plan for tonight's blog ! I will start by sharin...

Day 5 #bath My boys ... just thinking about Autism differently

Day 5 #bath My boys ... just thinking about Autism differently

I changed my plan for tonight's blog !

I will start by sharing, I have had a really bad, autistic day in the house and by writing this piece instead it's helping me put things back into perspective.

Those that know me will tell you I am not one for the limelight, I hate talking on stage and most deffo in front of the camera so this is a mega deal for me to put our life out onto the big wide web, especially in the way I have … it just shows you how passionate I am about Autism and getting the world to think differently about my boys … and their autism, if just one person thinks differently then the time spent will be worth it, I will have gained my art work and hopefully changed someone’s path in life.

So in a way tonight's blog is really one of the most important parts of this #bath project, I am hoping that someone somewhere shares or reads this … I've had a bad day, to much to write about but lets just say that a person or family somewhere has more than likely had exactly the same sort of day or worse. They could be hitting rock bottom right now as I write, wondering where to go and who it is they ask those all important questions.

like …

Do you think my child has something wrong with them ?

Why is he not sleeping ? Why does he not look at me ?

I am his mum and I think my child has autism, will you help me ?

Am I reading to much into it ? Is it me ?

The first question I would answer … will you help me ! At my lowest point it was my husband and sister that had a hand in bringing me back … I listened to people saying how taking your own life is the most inconsiderate thing you can do to someone you love … I hear talk of 'how could they leave their family that way, they must not have cared for their loved ones'.

It's not about care .. love or respect its about being stood on that cliff top looking out to nothing, l call it crossing over to the unhinged side or in my case taking the car for a drive hoping to drive it straight at a tree, not one for drawing up a detailed plan me … I cared more than anyone will ever know, I cared so much that it made me sicker, I'd cared that much it put me in that driving seat.

Whether you are caring for an autistic child or not the most important reason to get up in the morning is you, if you cannot take care of yourself what chance has anyone else got with you on their side … As my mental state got to full blown panic attacks and the fear of hurting my children got to saturation point consuming my every minute, awake or asleep .. I put my hand out not for help but just to brake my silence, thankfully my family were there … I then took the next step and somehow mustered up the strength to put volume into my voice so that I could be heard and in a way I am still doing that volume thing right now.

So what have l learnt from the last twelve years … knowing my stress points and how too best deal with them … I will always have them, there will always be another battle for me ... from seeing some random person watching me and jumping to there conclusion to me jumping to my own conclusion about what they think of me and my beautiful children …my sense of humour helps to get me through, I mean who goes out in the wee small hours of the night wearing nothing but a nightie and had my plan worked, think of the poor ambulance crew .. they would have had a awful fright.

They say a wise person learns from someone else mistakes … my mistakes have been my path, if I had learnt to ask for help I would have been a lot wiser a lot sooner !!

Hope you enjoy tonight’s #bath picture. My boys … just thinking about Autism differently

#bath My boys ... just thinking about Autism differently: Day 4 #bath My boys ... just thinking about Autism...

#bath My boys ... just thinking about Autism differently: Day 4 #bath My boys ... just thinking about Autism...: #bath My boys ... just thinking about Autism differently Well I got them into the bath ... together !! but how in earth did I manage...

Day 4 #bath My boys ... just thinking about Autism differently

#bath My boys ... just thinking about Autism differently

Well I got them into the bath ... together !! but how in earth did I manage it, that is the question ?

I knew something was wrong from the way I carried my unborn child, knew I was having a boy, decided on his name from when I was about six weeks gone ... like I said I knew from the way he wasn't moving in my tummy. I talk to him now about the little slow worm slowly turning in my stomach and how I would tick it off the midwifes movement chart.   Knowing in my heart I was missing out on the experience of having that little shape of a foot or hand pushing out from the inside of my growing stomach telling me he was here and getting ready to say hello ...

The old saying is, "that a mum know's bests" .... "trust your mothering instincts" well that's until you get in front of a medical professional and they know best, they have all the textbooks you will ever need ... What has got me to this point in my life is my now strong mothering instinct which has grown from a unsure mother to a lioness with her cubs.

My first real memory that sticks out in my mind of how autism works ... I had told Liam to go, wash his hands in the toilet.  When I'm trying to explain my autistic family to people I find this is the best explanation I can give.   Not only was Liam washing his hands literally in the toilet and very sensibly using soap while managing to flush at the same time,  he had done exactly what I had asked him to do ... wash his hands in the toilet, the mental picture still makes me laugh now.

My first born ... brought me the understanding of the meaning of hitting the wall, with Liam you cannot go around, over, under or through .... so overtime I worked out how to take his walls down by picking and scratching at the mortar, taking each brick down one by one. Every day his walls go up,  over the slightest thing from being clean, to what he eats to how he touches food, clothes or his lack of caring about changing his clothes and that has nothing to do with being a teenager, I still have that to come. 

Then you have to experience 'the glaze' a look of complete and utter vacancy which over time I have learnt in Liam's case is his processing time ... figuring things out making sense and logic of what is being asked of him and as is shown with the #bath project taking the time to explain anything makes everything achievable. 

My son is such a bright kid, he just needs time to compute.

He says, "I speak autisticly friendly" and I say, "he taught me to speak autisticly friendly".

We hope you are enjoying the small window into our family.

 

#bath My boys ... just thinking about Autism differently: Day Three of #bath My boys ... just thinking about...

#bath My boys ... just thinking about Autism differently: Day Three of #bath My boys ... just thinking about...: Day Three of My boys ... just thinking about Autism differently  I am getting exhausted writing this blog and dealing with my day to d...

Day Three of #bath My boys ... just thinking about Autism differently

Day Three of My boys ... just thinking about Autism differently 

I am getting exhausted writing this blog and dealing with my day to day autistic house ... that is nothing compared to the feeling of exhaustion that my son experiences every minute of his day, he has the physicality of living with severe Ketonic hyperglycemia also his emotional exhaustion of dealing with his autism.

Let me introduce you to my son ... Kieran

Kieran was also a premature baby, my child that was determined to fight and achieve all his milestones and at the same time be extremely poorly, so much so that when I asked for help the doctors looked at me ... while they determined whether his illness was down to me or not, it was me that figured out how to best manage his condition and all the while knowing in my heart Kieran was on the spectrum too.

In total it took six long hard years to get Kieran's illness and Autism signed off ... a battle I neither wanted nor needed. People always forget that Kieran is autistic, my child that can hold it together especially in school ... he is the one that no one sees crumbling inside and out.

I can only describe our relationship as a roller-coaster ride as often when he's asleep at night l cry about our love ... hate relationship. I love that my boy gets this world and at the same time I hate that he gets it so well ... I know, very double standard of me !!

We are so together yet so far apart  and what keeps me going is knowing he gets that ....

He is my rule enforcer .....  
My "You said you were going to do that"  ..... 
My reality check ....
My mini me.

I know we have a very rocky path ahead of us, I'm hoping one day he will sit and read this, knowing I feel his pain and most definitely understanding his frustration with me.  I know how hard it was for him to be in this picture project and I hope he remembers the laughs and fun it turned into. 

... thank you Kiery for being you ! X

Day Two of #bath ... just thinking about Autism differently

#bath ... just thinking about Autism differently

When it comes to water my son has always had a dislike, I remember from a early age Owyn refusing to wash his hands, putting his toes in the sea or been unable to do the normal bath time rituals ...  it was always like going into battle with caged animal.

He would describe the feeling of water on his skin in a upsetting and negative way ... he would cry and shout out at me with tears rolling down his checks "it's painful, the water hurts me" with every drop from our shower head he would tell me it is like being hit with a sharp needle piercing into his skin. 

It's the one image that is used over and over again, a mother getting their child out of the bath and rapping them in a big soft bath towel .... not in my house, the water and towel hurt, it's labels cut out of clothes, socks and underpants inside out, mum l cannot wear that it doesn't feel right on my skin. I have lost count of how many different pairs of shoes he wears, some days he will wear one black shoe with a blue trainer and other days he will wear one blue trainer with a green one ... that's just the world according to Owyn.  

So over the years I have battled with his loath of water until one day stripping off his clothes and putting him in a bath full of cool water to get his temperature down, we hit gold...Cold water and the colder the better.

That light bulb moment, the thinking outside of the box about his Aspergers had arrived ... not saying it was the answer to all my prayers, every second is a challenge but the temperature change opened up my mind to so many other things he founds hard, like his hair being cut.  Yes I told you my bath is our families lifeline ... sitting Owyn in the cold bath water I was able to cut his hair, not to well l must confess but beggars can't be choosers. Thankfully we have moved on from using our bath to going to a hairdressers. Of course I did have to see if she was willing to learn how to cut his hair using water while he sits back to front.  Its not the normal way to get your hair cut but it works for him and that is all the matters. 

Getting Owyn to think about #bath was like the times I try to keep the dog away from the cat, stupidly l always try to protect the cat by picking her up, she returns the favour by sinking her claws into my arm, and of course its a painstaking task to remove each claw one at a time .... well that explains Owyn in the bath with his brothers at the same time. Anyway, what I am trying to tell you is, this little mans journey to get his picture for our bathroom wall has been the hardest of all my boys.  We still have days when I could put a peg on my nose and would really like to take a scrubbing brush to his nails but then I know l would be going against everything I am striving towards. 

Do you know what makes me smile? everyday Owyn, trying to overcome his sensory overload by him understanding me and what I ask of him ... when he comes and says, "next time Mum I would like to try and sit the right way around in the hairdressers chair and hopefully we won't flood the floor again" this is when I know I have taught my boy to think differently about his Aspergers.

Hope you enjoy our project #bath ... just thinking about Autism differently 

My boys ... just thinking about Autism differently

I am hoping by the 2nd of April you will have an idea of why I wanted to share our bath time with you, it's not just a roll top bath picture with three little ducks nor is it a staged picture .... Autism is a way of life for us.                                                                   

Every picture I am about to share with you resulted in many meltdowns and not just from the boys at points I even thought about just giving up, I would say, "Claire its just a silly idea, you are never going to achieve what you want". Then I would stop and listen to myself telling other people to think outside of the box about Autism. I pride myself on teaching my boys to think about this world and everything in it differently !

I had this desire for a picture of all three boys in the bath together to hang up on the wall in the bathroom, my bargain bath that I won of eBay in the early hours of yet another autisticly sleepless night, to everyone else they see a luxury roll top bath, but I knew this bath would be my families lifeline. 

Can you tell I worship the bath, .... this bath will eventually allow us to get lifting equipment in, relieve a little of my sons discomfort a break from the pain and give my other son the ability to bath without me worrying about him overheating. You see I am not just a mum to three boys on the Spectrum, they also have other rare medical conditions to boot !!

Why am I sharing ... well I would like people to have an insight into how hard it can be at times, autism can be so over powering and time consuming for my boys and me, I am hoping by sharing you will appreciate what it has taken for the boys and myself to gain our perfect image to hang on our bathroom wall.  

Come, find me and my boys on Facebook Get together-Cornwall or on twitter under Claire Finnegan-Vyse and you can look up my story on www.gettogethercornwall.org.uk