Thursday, August 22, 2013

Rearward or forward - that is the question.



Three years ago a dear friend of mine lay in a coma for thirty-nine days with a severe head injury, internal injuries and multiple broken bones.  He and his family had been hit head on by a truck that had crossed the centre line on a sharp bend, with the trailer fish-tailing as the driver tried to correct the fully laden load in wet conditions.  His wife suffered a head injury and broken arm, ribs and shoulder.  In the back of their vehicle had been their two sons, sitting in and saved by their booster seats.  Their story helped shape child car safety in New Zealand.  I am so very grateful that they all survived; they were lucky.  I was very proud to be selected to become a BRITAX Mumbassador recently and I want to share their new safety campaign with you regarding rearward facing car seats for younger children; although my friend's children were older at the time of the accident, since then I have been acutely aware of car safety and the safety of our children, no matter their age.

Now I remember my first car trip with N; she was barely 2 weeks old and we were travelling from Glasgow through to Edinburgh for my mum's birthday.  Buckled in to her rearward facing car seat, I hated not being able to see her when I turned round, fearing that she had choked or stopped breathing, that perhaps I hadn't strapped her in properly.  A mirror proved to be the simple solution - I could see her smiling at me or sleeping soundly.  Roll on ten months and I loved moving her to a forward facing seat and she loved it too; suddenly she was able to see the world passing by, I was able to see her and -reluctant as I am to admit this - it was so much easier to pop the dummy in...

Ten to twelve months is a common time to move your baby from a rearward facing to a forward facing car seat, but this is not the case across the world with rearward facing travel being recommended as being safer, directing crash forces more evenly in the event of a collision and protecting their vulnerable necks.  I couldn't imagine either of my children being comfortable in a rearward facing seat any longer than they were, their long legs bent up against the back seat; nor do I think I could have managed the worry of not being able to see their faces during long trips.  However, given that their safety is of the uttermost importance to me and not wanting to risk their precious lives, if a rearward facing seat had been available at that time and the evidence that exists now was made public, I would have no hesitation in buying a rearward facing seat.  It's a simple decision really - a rearward facing seat could safe the life of a child, just as the booster seats saved my friend's sons.






 
the MAX-FIX




Below I share some information from BRITAX regarding their new safety campaign and if you want to find out more about the rearward facing car seats please go to the BRITAX site; if you want help choosing the right seat or the answers to frequently asked questions, it's the place to go.




"BRITAX LAUNCHES SAFETY CAMPAIGN TO HELP PARENTS CHOOSE THE RIGHT CAR SEAT SOLUTION FOR THEIR FAMILY
There is an on-going debate about which is the safest way for your child to travel in a car, forward facing or rearward facing.  It can be incredibly confusing for parents and whilst safety is of paramount importance when choosing a car seat, we here at BRITAX know that every family is unique and has different concerns and practicalities to consider. 
Recently there has been a significant surge in popularity of rearward facing seats for children up to the age of four.  This is already the norm for parents and families in Scandinavian countries and recently the American Academy of Paediatrics changed their recommendations to say all children should remain rearward facing until the age of two years. 

Rearwad Facing - Facts


There is no doubt that rearward facing seats offer the best protection in the event of frontal collisions.  These are extremely serious and the most frequent types of accidents on the roads*.  BRITAX believes that parents should sit children rearward facing for as long as it is realistic for their child, car and family’s lifestyle and wholeheartedly supports the new Europe-wide initiative called ‘i-Size’ which dictates a child must be seated in an ISOFIX fitted, rearward facing car seat until the age of at least 15 months. 
However, it is important to state that safety cannot be defined simply by the direction a child is travelling in the car and is influenced by several factors, including the angle of the crash impact, the correct installation of the car seat, which car seat is compatible with your car and how many children you may have to accommodate on the back seats."
* Henary B, et al.  Car safety seats for children: rear facing for best protection. Injury Prevention 2007; 13:398-402.



Images from Britax



Disclaimer - I have been asked to be a BRITAX Mumbassador - a unique and exciting community of parenting bloggers who work closely with BRITAX to review their products, discuss topical parenting issues and to share fun family experiences with!  I have received no fees for this post but have written it because I believe in keeping our children safe.





There's something different about you...



Notice anything different about the blog?
Perhaps not.
Now look more closely...
Scroll down a little...
See there, over in the right hand column?
Yes, just below my profile...
A badge perhaps?
Yes, it is a badge!
I am proud to announce that I am a Britax Mumbassador!


I received an email about a month ago:

"Thanks for sharing your details with us at BritMums! Live last month – I wanted to drop you a line as we’d love you to become involved in the BRITAX Mumbassador programme!

As I’m sure you’re already aware, BRITAX is one of the world's leading manufacturers of travel solutions for children, with an impeccable reputation of creating safe and stylish products for families, including car seats, pushchairs, travel systems and more.

As part of our ongoing work with the UK’s most influential parenting bloggers, we have launched the BRITAX Mumbassador programme – a unique and exciting community of parenting bloggers who we work closely with to review our products, discuss topical parenting issues and to share fun family experiences with!"




Wow-wee!


I needed to pinch myself and check that it was me that they wanted; me with my perfectly imperfect family with a disabled child, living the life unexpected - could we possibly help them represent a very specialised population within the global parenting community?  Well, certainly!  I have many roles, wear many different hats and can turn my hand to most things, so I gladly accepted this new role and I look forward to working with Britax over the next year.



Friday, August 16, 2013

Learn to "Love Your Garden" - a letter to Alan


 
Dear Alan and Team
 
I know that my good friend sent you a letter - she told me recently - she wanted to help, she wanted to make a difference to our lives.  She wanted you to help to rid us of our inaccessible garden, to improve the clay soil and boggy grass, to clear the concrete the previous owner laid everywhere and to kill the ever present mare's tail.  She wanted you to help create a garden our children could access and play in, where fairies could come and go, with the ultimate goal of enabling us to enjoy family time in our garden - Snappie the powered wheelchair and all.
 
 
 
 





 
 
 
 
 
 
But you didn't knock on our door...
 
Love Your Garden began and D & I settled down to watch the first episode and the second and those thereafter too.  Tears fell as we listened to the heart-breaking and humbling stories of those selected for the makeover; their need for spaces to relax, their need for hope and joy, and then their amazement and gratitude as you presented them with these magnificent gardens.
 
You change lives.
 
You make a difference.
 
I'm grateful for all that you have done for these families, I really am; I just wish that you had knocked at our door, we could have done with your help...
 
Today, our garden gets a ramp so that my daughter can gain access to the house, so that she and her sister can come and go and play as they wish, with fairies by their side.  There's a long way to go to create a private and accessible garden which we can enjoy and sit out in, but we're starting and as we know, the first step is often the hardest.
 
So I have to thank, Charleston Girl for sending the letter - she wanted to make a difference, I know that - but we weren't lucky enough to be selected and so, on our own, we're striving forward to that dream garden, fairies and all. 
 
With Best Wishes
 
Ever H0pefulmummy
 
 
 
 
 

Thursday, August 15, 2013

From the rubble comes hope

 
 
It's quite amazing really:
From the rubble of the Christchurch earthquake in 2011 comes a Cathedral of hope.
A cathedral made of cardboard which should stand for fifty years or more.
A cathedral which can not be razed to the ground by an earthquake.
Amazing, quite amazing!
I stand humbled and hope one day to have the opportunity to visit and stand in all of it's glory - just as I did in the original Cathedral some years ago.




 
 
 
Christhcurch's Transitional Cathedral designed by Shigeru Ban   


 
 
 
See a further article on Shigeru Ban here.
 
 
 
 
 
 

Toast



I heard a song this morning on my way back from dropping the girls at school and it made me smile.
 
Why?
 
Because I can so relate to it!
 
The H0pefuls are HUMUNGOUS toast fans - well, to be honest we are fans of bread and all things carbohydrate in general really... 
 
Toast is THE staple food of my life:- I'm not proud but it is sooooo delicious!  And here it is, the toast of my life:
 
Early 1980's: Toasted cheese on a Saturday night, watching the A-Team - man! I had such a crush on Face! - waiting for dad to come back from rugby.
 
Early 1990's: White bread with lashings of butter, hot or cold, supported me through my days as a junior doctor (and also later through my early pregnancies at work): but then they banned toasters in the wards because of the fire risk and multiple attendances by local fire brigades - the cheek of it!
 
2000: Wholemeal toast with avocado, tomato and black pepper became a favourite in New Zealand and eating it alfresco with a freshly brewed coffee made it even more delicious and decadent.
 
The Late Noughties: The beautiful Duchess of Bedford enlightened me to the fact that one of the most healthy breakfasts was indeed wholemeal toast, Nutella and fresh strawberries; I was utterly convinced but I think that we were deluding ourselves, Duchess!
 
And now? 
Pure and simple. 
Unadulterated. 
Toast and cheese.
E.V.E.R.Y.   T.I.M.E. 
A.N.Y.   T.I.M.E.
 
 
I love you, toast!














Wednesday, August 14, 2013

First Days



First Days and a resounding thumbs up from both my (not so) wee girls!
But this morning Eilidh said, "Do I have to go to school? It's sooooooooo boring!"
And then we had an argument about what clothes she should wear!
Oh, Eilidh, you are so ready for school: it's me that needs some time to adjust...







enthusiastic P1






 
 
and not so enthusiastic P2!
 
 
 
 
 

Tuesday, August 13, 2013

School time, SMArty pants!






I'm not ready for her to go.
How did this happen so quickly?
It feels like only yesterday that she came into our lives.
It feels like moments since SMA turned our lives upside down.
It doesn't seem so long ago that she was starting at nursery.
And now?
The next chapter; tomorrow she starts school.
 
It's been a bit of a rollercoaster as we had wanted to defer her for a year, feeling that she wasn't ready, that emotionally she was immature and her speech was a little delayed.  She's a January baby, you see, so she starts school at the tender age of 4 and a half.  No one bar her community paediatrician shared their concerns.  The Headmaster did offer a deferred entry but there was one problem; her nursery - her brilliant fun and supportive nursery! - was closing to over 3s so it was natural - and he totally agreed - for her to move with her little group of friends.  With the decision made, we registered her for school.
 
We still had our concerns, even Dr Neuron wondered if it was the right decision, "Oh, but I'm sure she will fly when she gets there!", but we were coming to terms with her going, her speech was improving and the extended transition between nursery and school began. 

And then the unthinkable happened and the local authority u-turned on their decision because of a lack of nursery places for the over 3s and Eilidh's brilliant nursery was staying open!  The news spread through the jungle drums and it came to me as playground chatter, not directly from the horses mouth as it should have done.  I was bubbling with anger and so was D; we both wanted another year for her speech and her confidence to grow before embarking on her school career - we just didn't think that she was ready.  Nursery were surprised by our anger - "but we thought you were happy with her going this year?" - despite our concerns being raised at every multi-agency meeting we had had for Eilidh over the previous year.  Our anger dissipated and turned to disappointment: disappointment at the nursery for not communicating with us; at the local authority for their lack of transparency- and poor planning - regarding nursery provision; and at ourselves for not making the decision to defer her based on our own parental concerns.  The bottom line, however, was that we had made our decision, her transition period had begun and she was going to school come August - we were sticking to our decision, despite it being against our better judgement.
 
Roll on a few months and the school uniform is bought and the school bag chosen.  Eilidh's speech has improved although remains unclear at times and her confidence has grown. She's ready for school; ready for the next chapter and new challenges, ready to see her friends old and new and ready to be near her sister once again - or at least that is what she says now!  But I'm not ready...  I thought that I was; I thought that I was coping remarkably well and then it hit me yesterday morning and the tears fell, "I'm not ready for Eilidh to go to school...  She's not ready... She's my baby... My baby... "  And my mind wanders on, silencing my voice, "Will they (her teachers, her PSA) look after her?  I have to learn to trust them; I trusted nursery and they loved Eilidh, they would have done anything for her, but will her new teachers?   Will they care about her and nurture her and protect her?  Will she be able to concentrate and listen?  Will she be able to write and draw without assistance from technology?  Will they remember to do her physiotherapy?  Does a new school mean new bugs, illness and coughs?  Will they make her feel included?  Will the children accept her and Snappie?  Will they bully her?  Will she run over and injure anyone?"  Do I have the answers to my questions? No. No one does.   I have to trust her teachers; I am sure that they will do their best by Eilidh (or I at least hope that they will...).  Moreover, however, I need to trust Eilidh, little miss SMArty pants herself; she will show us what life at school is all about and she will do it her way and in her own time too.  I , for my own sanity's sake, have to trust my very able, intelligent, funny and independent little girl to forge her own path in this unexpected life we are living, arming her with the tools and skills to take on the world as she finds it.

So sleep tight, baby girl, for tomorrow is your first day at school.

I love you lots, Eilidh Bear

xxx

 
.

All out to sea



image by Davina Wilson




Eilidh was floating,
goggles on,
a smile on her face,
but drifting.
Her class safe at the edge of the pool
and Eilidh in the middle,
alone.

She was beginning to struggle:
the pool was full of splashing,
Eilidh calm but all out to sea
and tiring,
her head starting to fall below the water.

I panicked, my heart full of fear.
I turned my back on her -
just for a moment -
looking for her teacher,
"She should not be on her own. Ever! "

I can't remember her reply;
I remember my concern,
my spiralling anger,
my overwhelming feeling of loss of control.
I remember my reply:
"Did you actually pause to think before saying that?
Next time try the ten second rule!
Think then speak!
Next time try to imagine yourself in my position!"

I turn away,
towards Eilidh,
and the tears began to fall;
each single tear adding to the
pool of tears
keeping Eilidh buoyant and safe but
all out to sea.

And then I wake,
the worry present, 
palpable
and real;
who will look after her
when I'm not there?




Sunday, August 04, 2013

SMA Screening - the voice of a doctor

 
 
To Whom It May Concern: UK National Screening Committee (UK NSC),
 
 
I understand what you do.  I do understand.
 
 
You advise the government and the NHS about all aspects of screening.  You look for research evidence and assesses this evidence against a criteria which looks at the condition, the test, the treatment and how effective and acceptable the screening programme is.  You also evaluates the cost of the programme with the ultimate goal of ensuring that the programme does more good than harm and at a reasonable cost.
 
 
As a Doctor of Medicine, I understand better than most the evidence, the criteria, the effectiveness and acceptability of a screening programme.  I can read your expert's opinion, even marking the time spent reading the report as continuing professional development because I can learn from it, reflect, change my practice and teach from it.
 
 
The salient points that I take from the report are as follows:
 
You advise the NHS of the four countries of the UK and therefore your paper should be looking at the evidence for a carrier screening programme for SMA in the UK and not just in England.
 
SMA is the second most fatal autosomal recessive disease (after cystic fibrosis) and yet few people, and that includes health care professionals, outwith the SMA community know anything about this disease but know much more about CF.
 
Carrier prevalence estimates are between 1 in 76 and 1 in 111, lower than the 1 in 40-50 I expected.
 
The clinical progress of SMA is highly variable but with many complications possible, SMA has a significant impact of the quality of life of the child and their family, but also on the NHS and society too.
 
Overall survival is improving which is wonderful but at the same time this means an increasing burden of care - emotional, physical, financial - on the family and on society.
 
The genetics of SMA are now better understood, however they are complex and limitations exist when applied to carrier testing.  It is also impossible to determine the type of SMA a couple deemed carriers may have, so counselling them with regards to the quality of life and prognosis for their child would be impossible.
 
There is no treatment or cure for SMA although research is ongoing, specifically in the area of managing the severity of disease, with treatment potentially being possible during the early course of the disease - this in itself, however, suggests that pre-natal or at least ante-natal testing would be necessary if such a therapy comes to fruition.
 
There is no evidence of sufficient hierarchy to support that a screening programme for SMA would reduce mortality or morbidity.
 
That you have not taken into account any of Dr Felicity Boardman's work on the psychological impact of carrier screening seems to be rather a large oversight on your behalf.
 
This review should not have been aimed at ante-natal carrier screening (CVS or amniocentesis) but at women contemplating pregnancy who, through the improved education and subsequent awareness of the general public about SMA, should be allowed to make an informed decision regarding pre-natal screening of themselves and subsequently, if their status is positive, their partner.
 
 
 
The conclusion that I draw, that is screaming out from within the lines of the report, obvious to me and probably to many others, is this:
 
At this time a screening programme for SMA is not recommended, however, increasing the public's knowledge and awareness of this genetic disease is paramount, enabling further resources to be made available and directed towards the research of  the complex genetics of SMA; the development and implementation of a sensitive and specific carrier genetic screening test; and the advancement of an evidence-based effective treatment.  
 
A pre-natal screening programme should be considered in light of ongoing research into treatment which can manage the severity of disease (and, perhaps slow the progress of disease?) so as to not discriminate those with the more severe forms of SMA, allowing treatment to begin early.
 
The burden of SMA - physical, psychological, and financial - on individuals, families, communities and society should also be considered when evaluating the cost-effectiveness of screening: to do this a period of transparent public consultation must be considered.
 
 
 
To finish; I understand what you do, UK NSC.  I understand the conclusions that you draw.  I understand as a Doctor, but I also understand as a mother to a child who has SMA 2 and this is the bottom line:
 
 
The SMA community needs a louder, more dominant public voice; we need to be heard.  We need to increase the public's understanding of what SMA is and how it affects lives.  And above all we need more money and resources injected into the research of the genetics and treatment of SMA. 
 
 
 
 

Kind Regards
 
A doctor and a mummy
 
 
 
 
 



SMA Screening - so what is it all about?




Screening?
What is screening?
What does it mean?
Let's get back to basics, using language that we all understand.
 
 
 
 
 
 
 
  
Screening is the process of looking at a group of people who is thought to be at risk from a condition in an attempt to identify those more likely to have or develop the condition; in these people, some form of  treatment would be possible.
 
As an example, in the case of cervical screening - and as a woman I understand this! - women between the ages of 25 and 64 are invited to attend for smears.  The smear is done with the aim of identifying abnormal cells and allowing treatment to be done before cancer develops.
 
So, it sounds simple, yes?  Well, no, not really; apply it to a condition as complex as SMA and it becomes difficult.

OK, we know that ultimately we want to prevent a condition which causes some degree of harm to the individual, but during my training I discovered that a lot of information has to be gathered and research evaluated before screening could even be considered, with many hurdles to be crossed, loops to be negotiated and boxes to be ticked, and then the real process of working through the information, which takes time, is done.

   
 
 
 
 


 
 
The UK National Screening Committee have the important job of, on a very basic level (and with out explaining their role in full), approving whether a screening programme  is appropriate or not.  Their criteria is based on the Wilson Criteria (1968) which emphasises the important features of any screening program:
 
 
  • the condition should be an important health problem
  • the natural history of the condition should be understood
  • there should be a recognisable latent or early symptomatic stage
  • there should be a test that is easy to perform and interpret, acceptable, accurate, reliable, sensitive and specific
  • there should be an accepted treatment recognised for the disease
  • treatment should be more effective if started early
  • there should be a policy on who should be treated
  • diagnosis and treatment should be cost-effective
  • case-finding should be a continuous process
 
 
Personal accounts and stories of loss and hardship are not taken into account.  The committee do not see those affected; the Eilidhs, Beatrices, Estellas, Rowans, Eythans, Georges and the thousands of other children with SMA in this world.  They are not there - however much we wish they were - to lend a listening ear or to offer sympathy - although I am sure that on an individual level those involved in the decision making are empathic.  Their job is to provide the government and the NHS an impartial, scientific and cost-effective recommendation on whether screening for SMA should be offered to the general population.
 
 
SO what does the UK NSC have to say about SMA Screening?  They asked an expert and the report titled "An evaluation of carrier screening for spinal muscular atrophy against the National Screening criteria" was completed in November 2012 and brought to the public's attention recently.  What does this say?  The doctor in me will answer that question here in the next post.
 
 
 

In Control: the planning - ideas, adventures and paperwork

 
Following on from here and the workshops...
 
 
£200 to spend as we wish, to improve the days to day lives of our children - and our family - over the summer holidays...  As a group we had previously pondered, deliberated and cogitated, sharing our thoughts, ideas and wish lists:
 
 
a swing
a hammock
a bolthole to escape to 
a CEA card
a place to go when it's raining
an extra pair of hands
a holiday
a day trip
improvements to the garden
drama lessons
swimming lessons
more hours at summer club
 
 
 
D and I took the discussion home, asking N and E what they would like to do with the money - after all, this was to benefit them - and it was unanimous - they wanted to go camping.  Having never spent a night under canvas with them, I was a little reluctant to go straight out, spend the money on a tent and head for the hills.  Instead we borrowed a tent from a neighbour and set up camp in N's room.  We nestled down around the campfire (a night light) and read by torchlight under the stars (fairy lights) until the girls fell asleep.  N spent two nights under canvas - she was converted!  E on the other hand wasn't too sure, but that could have been something to do with her sister's snoring!
 
 
 
 
 
under canvas by torchlight
 
 
 
 
Now with that decision made we had to do some investigating: camping with children and a powerchair, is it feasible?  We decided quickly that we did not want to spend the money on equipment - if it wasn't a success then the money had been wasted.  So, thinking a little "out of the box", we came up with the option of looking at fixed tent sites and glamping.
 
 
 
glamping
 
 
"Going camping, but with glamour. A combination of the two words. It's like regular camping , but with nicer things than usual, being warmer, and more comfortable. Glamping isn't done by usual outdoor types who climb mountains."
 
 
 
 
Yes! Yes! Yes!  This was much more us!
 
 
Decision made - glamping! - it was now time to look at sites and check out accessibility and the ability to charge a power hungry snappie overnight.  After a number of emails and tweets - oh! the power of social media! - we narrowed it down to Feather Down Farm Days and Jolly Days and then decided upon Feather Down Farm Days for affordability and the ability to charge snappie.  As I hit the "confirm" button, I was excited and smiling - oh, what fun was to be had!  The tents themselves aren't accessible and may be a little difficult to navigate with a snappie, but we have ramps, a manual chair and we are lucky that we can still lift E comfortably and safely.  We had to try this, go exploring and enjoy the adventure.
 
 
Filling out the paperwork from In Control wasn't too bad at all, we needed to show how we were going to use the money and why we had chosen to do  what we had, using  SHANARRI to help define the outcomes we want to achieve for our family. 

How did we do this?  I can't remember verbatim what I wrote on the form but it would have included some, if not all of these points:

We wanted to camp safely, with suitable facilities for Eilidh, allowing for lifts and transfers.
Camping in the great outdoors, surrounded by beautiful countryside and vast amounts of fresh air; what could be healthier, I ask you?
An active holiday - this certainly covers this objective!
By holidaying as a family we are able to nurture our bonds as a family but also on an individual level and perhaps on personal one too 
We wanted to respect our children's ideas, thoughts and wishes; they want to go camping, so let's try to!
Teaching Eilidh that the world around her is as inclusive as it can be is important to us: if she wants to camp, she can!

(not all the objectives need to be included - on this occasion we didn't include achieving and responsibilities)


With the paperwork complete, and after meeting with our social worker, who needed to talk through the form with us, £200 was transferred to our account to spend on our glamping extravaganza!  Let the fun begin...
 
 
 




See the links to the other In Control Pilot posts:

In Control - taking the first steps


In Control: the planning - ideas, adventures and paperwork
In Control: the fun - budget spent = fun, fun, FUN!
 
In Control: the experience overall - the good, the bad and the ugly

 
 


In Control: The Workshops - information overload and mnemonics



As part of the pilot we attended two introductory sessions to find out more about this "modest proposal"; relatively little work had been done in Scotland on children, young people and self-directed support, so how about helping people to go through the process of self-directed support with the family benefiting as a whole?
 
 
Now I am the first to admit it; I often see wealth in terms of financial wealth and material belongings"  These workshops, however, were an eye opener and an opportunity to look at the "wealth"- or if you like, the simple every day things that I'm grateful for and often overlook! - that surround me.  As The First Steps Spring 2013 Newsletter states "when we make decisions about what we and our families do, how we live, who looks after us and our children, we draw on all the resources we've got": I think that we do this without even thinking about it, forgetting that we do have valuable resources at our fingertips, overlooking what is right in front of us and forgetting to be positive about what we ourselves can offer our own family. 
 
 
So what resources do we have at our fingertips?


People: our loved ones, families and friends but also our colleagues, neighbours and community

Access: to our home and neighbourhood with all it's local resources (shops, GPs, dentists, schools, sports centres)

Assets: our monthly income, benefits and savings

Skills and knowledge: our strengths , knowledge and abilities

Resilience: our personal well-being and inner strength; the force that keeps us going when life is tough and, for some, our faith.



We were asked to look at our own family's resources and this is what our resource "scribble" looked like:






 
From here we were asked to look at our good days, best days and bad days, listing what makes each one different.  From this I realised that our good times involved family and friends; new experiences; laughter, smiles, and fun; ice cream and cake; sunshine and water.  Our bad days were brought on by tiredness, lack of sleep, illness (physical and mental), lack of support, the feeling of isolation, and were generally just "I can't cope!" days.  We didn't concentrate much on our bad days really though, it was more a process of reflection with the aim being to realise what makes a good day great with the resources that we already have available to us day to day.






 
 



Finally, we were told of a useful tool (which we would later use in our planning); SHANARRI is a mnemonic (or a tool to aid information retention) for outcome indicators which are part of the Getting It Right For Every Child Framework.  This framework tries to ensures that anyone providing the support a  child or young person – and their family –  as they encounter a life unexpected and all its challenges.  This framework tries to ensure that these key people are at the heart of  decision making, encouraging a level of trust to develop between local authorities and families and allowing a sense of control - which families living with children with additional needs often feel that they have lost - to grow.  Ultimately, GIRFEC allows for proactive support throughout the course of the child's and family's journey rather than reactive in the time of a crisis.

 
 
So, SHANARRI, what does it stand for?


Safe
Healthy
Active
Nurturing
Achieving
Respect
Responsibilities
Inclusive


These titles are used to form a realistic plan of a families needs which in turn will guide the decision regarding a workable level of support being offered by the local authority to benefit the family as a whole but while keeping the child central to the planning.


Overall these introductory sessions were informative and useful and, I think, were about arming us with the knowledge and skills, enabling us to make the best decision possible to direct funds with the ultimate goal of empowering ourselves, our children and our families to take control and live a better life with the resources and funding available to us.


With all this said and done, it was time to move on to the next step - the planning...






See the links to the other In Control Pilot posts:

In Control - taking the first steps
In Control: the workshops - information overload and mnemonics
In Control: the fun - budget spent = fun, fun, FUN!
In Control: the experience overall - the good, the bad and the ugly