Assumptions, sweeping statement and incorrect Assessments

That's it my last button is finally pressed!!! What feels like the one hundredth version of my sons Assessment of Need arrived and yes you guessed it full of assumptions, sweeping defamatory statements and factually incorrect information yet again, again, again.

My son has an acquired brain injury and is deaf so receiving and verbally giving communication is complex for him. He has a Dysphasia the definition of which is "difficulty in speaking and understanding spoken or written language, caused by brain injury or disease."

That in real terms for my son means his processing is impaired and language has to be presented to him in a format he can make sense of visual images are key to supporting him appropriately however how that translates into the prescriptive tick box on his Assessment to "he is not fluent in the English language" defies logic to me and is so negatively judgemental given the effort it takes for him to communicate. It completely does him a disservice on so many levels that you have to as a parent challenge its inclusion in the document.

So at the risk of being equally misjudged as an annoying parent I did and its now changed however its inclusion makes me question why professionals make such judgemental conclusions without question or evidence.

To put it into context for you I attended a lunch in France with friends all more fluent in French than me!! i had a smattering of French vocabulary and had studied French at school so listened intently understanding the gist of the conversation but struggling to contribute as by the time I have processed and translated the conversation and prepared my response everyone had moved on!! The net outcome was I came out of that luncheon with a banging head and blinding headache but with a deep underpinning awareness of what life was like for my boy and how exasperated I felt after all it didn't mean I was stupid and could not contribute it meant I needed understanding and support from those around me to "allow" me to contribute !!!! 

combine that with deafness which works in more subliminal ways at compromising an ability to hear language due to environment, peoples speech patterns and i was struck with the awesomeness of actually how clever my son actually is and gob smacked he has the depth of language and understanding he has confirming once more to me just how tenacious he is to rehabilitate and overcome his difficulties following his injury at birth. That should be acknowledged somewhere within his Assessment. 

You will note I said the word "allow"....... permit is another how arrogant and misguided are mainstream? Individuals like my son have no less right to opinion or comment on things they just need support in how to and it even being acknowledged they can do. Instead the articulate "take over" and ride rough shod over their decision making capacities never even empowering them from the onset to participate and be merely acquiescent bystanders in their own lives.

He completely sees him self as an orator shying away from using communication tools. Language was introduced initially using key words and a small vocabulary was used which has steadfastly been built upon and added to. Those working with him are given a list of words that his deafness and dypsthasia impacts on, words for example starting with certain letters sound different when my boys say them F, G, S, Th, P etc he is challenged by how those sound. Basic examples are Spoon becomes poon, long words merge so have taught him to break it down to Con-ver-sation for example he understands the word and when to use it in context never assume because he can't pronounce it the words meaning is lost to him. He also knows how to seek another word thereby problem solving so why is my son labelled in Assessments as unable to be fluent in language the deliverance is the issue not the ability!! How many more are being misjudged due to the lack of underpinning knowledge of the Assessor 

To have all that effort written off in one tick box exercise is such a negative and toxic experience for parent and child alike.

My boy had the support of a superb specialist teacher for the Deaf when a child and no price could be put on this service and the rehabilitation support if afforded my son. She showed us how he heard sounds and I am gob-smacked on that basis alone that he ever heard any language but my god imagine being trapped in that body and being unsupported in releasing the real you or maximising the potential you actually have. You would cling to anyone empowering you to be you wouldn't you and that is what being a good parent is all about :0) never stop fighting to ensure your child is not wrongly labelled and written off by a society that does not make itself more informed and discovers what in real terms it takes empower and support the person to maximise their true potential. 

I appreciate that has an impact on budgets however is this something we cap due to budgetary restraints what's more important the inane objects in life or the humanity towards others challenged by their disabilities and differences.  

SCBU

After a well deserved brew of tea and slice of toast (would have preferred a bacon butty and cafetiere of coffee myself) i was wheeled to see my boy in SCBU (special care baby unit) There he was in a glass fishbowl recovering from his ordeal. All seemed fine and off i went to get a well deserved rest :0) Mother and baby doing well...............

Then followed cards, flowers, a stream of rellies all actively participating in the joy a newborn brings. Laughter filled the room as the nurses brought me this wonderful contraption to ease the pain of the bruising to my lady parts!! (to much info???) the down side was i had limited access to this gift from heaven and no amount of cajoling the nurses could gain me unlimited access......bummer wonder if they take bribes......desperate times call for desperate measures. 

We weren't out of the woods but the room smelt of optimism to only be dashed within days as my boy took a dramatic down turn. 

From elation to despondency within hours. From the moment the doctor walked into my room and imparted the news that my son had suffered a fit and was very poorly (they thought bowel infection) and that i needed to phone my husband to immediately come to the hospital  the bubble of euphoria was burst. 

With trepidation and unsure of what to expect i followed her down to SCBU he was very ill...............soon to become the sickest baby they had ever had in the unit now that's a claim of fame we could have done without. 

HE dutifully arrived and we sat holding hands and clutching at straws listening to all we were being told.......He had contracted septicemia (E Coli) and the next 24 hours were crucial.....the next 48 hours were crucial.........he was struggling but boy what a fighter.....seemingly boys give up the fight easier than girls but not my boy he fought like a bloody trouper for life. Sitting watching him and seeing his tenacity to live was emotionally overwhelming..............All my natural instincts as a mother kicked in Christ like a lioness with her cub the desire to protect took me completely by surprise it was an emotion so powerful, so all invasive everything else took a back seat including HIM. 

They made us a room up alongside SCBU so we could be close and on hand, making the decision to restrict visitors was easy to do i allowed my sister he his sister and they were dealt the onerous task of updating people. That way was easier and meant we could focus our energy on little one..........also somewhere in the back of the mind was that if their was to be a loss of life fewer people would have bonded and would be less hurt if he lost his fight. 

I remember standing looking out of the hospital window down onto the scene below and realised that whilst my world had come to a dramatic and grinding halt the rest of the world were just going about their business. A tear trickled down my face i wanted to scream stop this is important .............

perhaps the feeling of isolation started then but i know it put my situation into perspective in that we were merely a small dot in the scheme of life...............and what would be would be. 

So with best face on and seeking positives amongst all the negatives I took a deep breath and watched over my boy..............offering reassurance were i could the little fella would clutch my thumb in his tiny fist............the bond was there we were ready to fight the world.............come what may BRING IT ON 

making an entry into the world

I enter the hospital maternity unit in a flurry with staff fussing and checking on me - the department is very busy and having me transferred down has impacted on their coping abilities although all are to polite to say so clucking and reassuring when necessary. They run checks on me, strap me up to all kinds of monitoring equipment and a drip and decide mother is going to have baby naturally - bustling out of the room as quickly as they entered. 

The drip is driving me mad and i have the urge to raise my pert butt of the bed and walk around - not allowed it seems - gosh there was me thinking it was the natural thing to do it certainly felt like the natural thing to do - contemplating my navel and having time to imagine what passing a football was like was not something I wished to dwell on  and i needed a change of scenery badly not only that having to make small talk with him who shall not be obeyed was always challenging at best. 

After what felt like an eternity midwifey popped in to tell me mother was now going to have an epidural........ to slow things down.........slow them down!!! I wanted this experience over ASAP but hey the anaesthetist will be down to perform the task soonest .....soonest turned out to be some two hours later seemingly he was busy in theatre well that's alright then not going anywhere I'll just hang on here then. Small talk defo getting thin now...........to the person who ever decided it was  good idea to have men in the birthing room  I ask the question.........are you out of your tiny mind!! 

Irritatingly at this time my legs took on a life force all of their own and kept annoyingly dropping off the side of the bed which HE seemed to find humorous as he had to keep lifting them back on as I had no feeling in them. perhaps on a different day and them being someone else's legs I would have been gripped by the funniness of it today was not that day ........ 

Time drags so I suggest to HIM that he goes into town for a Chinese (an excuse to get him out of my hair). With every contraction I am thinking of ways to de-assemble his body without anaesthesia. 

After much appreciated respite suddenly HE returns with a take away wafting sensory smells to wet my palette and proceeds to scoff the lot ........ ever sensitive the male species.

Around midnight I notice the monitor and instinctively feel that something is not quite right and instruct him to make himself useful and go off and find midwifey and alert her.........he duly carried out his mission and landed back with midwifey who clucked reassuringly and disappeared to return and invade the room with the A team. All hell broke lose at a single moment............  

 I was told to push and he was recommended to dampen my brow and cluck more reassurance and encouragement in my ear how that translated into slopping a wet flannel on my brow and semi drowning me I do not know but the list of parts that were going to be removed physically from his body increased dramatically at that moment. I think I politely suggested he cease...... well that's my memory :0) 

I was told to push with every contraction......what contractions I thought I had little sensation of them at this point as the epidural seemed to have done its job.........baby was struggling and the decision to do a high forceps delivery was decided upon he was well and truly settled in and not wanting to come out. The forceps were duly placed and she tugged with all her might, they were replaced and she tried again and i was told when to push it seemed like forever before my babies head appeared. HE unbeknown to me had moved to the operational end which greatly surprised me as this was a guy who was squeamish and nearly fainted at the sight of his own blood......mind you he didn't stay there for long quickly returning to encourage me to push like my lady parts depended upon it. Out popped my battered and bruised little 4lb 1oz bundle of joy.........but no cry for what seemed like an eternity, they whisked him away and gave him oxygen and massaged him and I could tell from their faces they were concerned..........1 minute 2 minutes and then after a goodly time he cried..........its the best sound in the world for a mother to hear..................the journey had started............

thought of the day

Having listened to George Osbourne and Ed Balls (and its clear he has  none) this morning on TV going on about welfare reforms (under the guise of austerity measures) i have an urge to bang their heads together and drag them out of the bubble they live in and into the real world!!!

this cavalier attitude towards the real lives of individuals with severe and complex needs does my tits in (can i say that - well i just have) They are juvenile prats scoring points on the back of others miseries and difficulties

In the beginning

Can i really do the journey justice and capture all the emotions and feelings that have been stirred? Well here goes and remember SHIT HAPPENS and it could happen to you tomorrow so be prepared and put in place what you would have an expectation to access and receive

April 14th 1989 a day that was to change my life for ever and on so many levels it started out as such an inconspicuous day.

I remember the spring sunshine streaming into the cottage and feeling good as i basked in the sunshine happy that the warmer weather was on its way. I was extremely fit and healthy 33 yr old and 33 wks pregnant and the only cares i had that morning were how long i could rest in bed before i felt guilty! Zorro my faithful Collie and partner in crime was streched out close by and keeping an eye on me whilst my partner was up and hard at it preparing for a function in the adjacent hotel he managed.

Deciding i better shake a leg rather than remain rooted under the duvet I rose walking into the ensuite to run a hot bath prior to waddling off to the wardrobe to select an outfit to wear that supported me disguising the bump whilst simultaneously removing feelings of being beached whale look alike!  a challenge in itself. Still full of the joys of spring and completely oblivious i had a sudden urge to go to the loo however immediately i sat down to relief the sensation it felt different more of a gush than a trickle (is that tooo much information) plus a gloopy discharge something i did not expect at this stage. Sensing something was not just quite right i decided to seek the advise of my sister who was busy working in the hotel bedrooms, she'd had two kids so to me was potentially more worldly in such matters.

I dressed quickly and trundled off on my mission to locate my sister.  I did not want to alert my partner or any of the staff to my suspicion that i had started labour early and luckily for me hubbies focus was on ham and beef joints and they were all busy with tasks. i wandered round the maze of corridors located sister and divulged my suspicions she confirmed she felt i may be right and off we went to alert hubbie who was gob-smacked and very concerned about his ham!!

Leaving him to sort out his culinary creations i went off to phone my doctor who instructed me to go straight to the Maternity Unit and to phone them in advance of my arrival. I hung up phoned, packed a bag and off we went the journey had begun.

We arrive at the Maternity unit apprehensive but excited at the same time knowing it was early than expected but feeling secure we were in the right place........after a few checks i was left to get on with the business of labour by 5pm with a cervix playing up i was whisked to RNLI by ambulance clutching at the air/gas full of trepidation.