It couldn’t be simpler, good luck!

Please play fair and bid honestly, there has been some hoax bids, which isn’t big, and isn’t clever!

Steven Reid with his Millwall shirt ready for auction.

Like most people, Steven Reid (Millwall, Blackburn Rovers, QPR, West Bromwich Albion and Rep of Ireland footballer) didn’t know about Nystagmus until it affected his family – Steven’s son has Nystagmus.  After coming to terms with the diagnosis, Steven sought out the Nystagmus Network, and yet again the charity came up trumps with information and support.  Steven has attended a couple of open days and he and his family are now much better equipped to support their little man as he grows and learns not only to live, but to thrive, with Nystagmus.

Like many others, Steven wants to give something back to the charity that has helped him out so much.

Steven is auctioning one of his Millwall FC shirts, with the money raised going straight to the Nystagmus Network to help them continue the good work they do.  If you want to bid for the shirt, all you have to do is contact him by Twitter (either an’@’ reply or a DM) with your bid.  The highest bid wins.  Simples!

The auction ends 8pm Tuesday 7 February, so if you want the chance to win it, you don’t have long to be in it.

We were told that James would be entitled to 15 hours of free nursery from the age of 2.  We had arranged an extension to his current nursery provision, altered working hours, and told grand-parents that they could have their week-days back.  Everything was set up.  Then we were told he wasn’t entitled.  Then some departments said he was, and some said he wasn’t.  Then some admitted they knew nothing about the provision.

So it was up to us* to fit all the jigsaw pieces and fight for James’ entitlement.  And this is what we found out…

The Children’s Act 1989 defines a child as being a ‘Child in Need’ if:

(10)For the purposes of this Part a child shall be taken to be in need if—

(a)he is unlikely to achieve or maintain, or to have the opportunity of achieving or maintaining, a reasonable standard of health or development without the provision for him of services by a local authority under this Part;

(b)his health or development is likely to be significantly impaired, or further impaired, without the provision for him of such services; or

(c)he is disabled,

and “family”, in relation to such a child, includes any person who has parental responsibility for the child and any other person with whom he has been living.

(11)For the purposes of this Part, a child is disabled if he is blind, deaf or dumb or suffers from mental disorder of any kind or is substantially and permanently handicapped by illness, injury or congenital deformity or such other disability as may be prescribed; and in this Part—

“development” means physical, intellectual, emotional, social or behavioural development; and “health” means physical or mental health.

If your child has a Certificate of Visual Impairment, or is under Local Authority services like speech therapy, occupational therapy, Team Around the Child etc, then your child is classed in the eyes of the law as ‘Child in Need’.  It is also fair to say that the vast majority of our Chromosome 18 children are unlikely to achieve or maintain, or to have the opportunity of achieving or maintaining, a reasonable standard of health or development without the provision for him of services by a local authority.  Whilst there is a legal obligation for Local Authorities to maintain a register of disabled children, there is no legal requirement for them to register Children in Need.  You will need to push this yourself with Social Services.

So what can this mean for you?  Well, I guess that depends on where you live and what your Local Authority has to offer, but in Lancashire (and probably more counties) it means that a child is entitled to free childcare from the age of 2.  The paperwork is raised by the Social Care staff under a scheme called Free Early Years Education (FEYE). To qualify your child must meet at least one of the criteria below:

Known to LCC Children’s Social Care Services and defined as one of the following:

a.    Child Looked After;

b.    Child on a Child Protection Plan;

c.    Child in Need;

There are other criteria but this is the one that concerns us and our children, so I’m not going to re-publish the whole FEYE guidance on the internet.

And there you go.  Depending on where you live you could get free childcare for your 2 year old under the FEYE scheme.  Depending on where you live there might be, many more things your child is entitled to.  And, it seems, key to unlocking these things is being recognised as a ‘Child in Need’.  Just don’t get confused with Pudsey.

*I say it was up to us to find out for ourselves, it wasn’t.  It was Helen who did all the digging, I just egged her on.  So it wasn’t up to us at all, I hardly lifted a finger!  Thanks to Helen x.

What is signalong?

Signalong is not like traditional British Sign Language (BSL).  BSL is a fully recognised language in its own right.  Signalong is a supportive system for English.  It can best be described as ‘sign supported English’.  The spoken word is as critical in signalong as the accompanying sign.  So signalong uses English as the main language, with the key words of a sentence supported with a sign.

Children start speaking using key words with the full syntax and grammar coming along in the fullness of time (so a child may say “Mummy, drink” as opposed to “Mummy, please can I have a drink”).  This means that if a child knows the sign for ‘Mummy’ and ‘Drink’, he can get his message across pretty easily.

Why should I use signalong?

Your child wants something, you don’t know what.  Your child starts crying.  Everyone gets stressed.  Sounds familiar doesn’t it?  Add on to that the developmental needs of Chromosome 18 children and communication can be a major cause of stress and frustration for a child and his parent.  By using signalong, communication can be achieved far earlier in a child’s life, and the supportive nature of the signs encourage vocalisation and the development of the spoken language.

Will my child’s speech suffer if I teach him signalong?

In short, no.  In fact, quite the opposite.  Once a child knows the signs, they can be linked to words and the child can be encouraged to use the words as well as the signs.  If anything, using signalong can improve speech as a lot of the frustration in early communication is removed.

James is 27 months old, and knows only a few simple words.  Yet just two days I was able to have this conversation with him.  I have marked all the words we signed together in bold so you can see how the conversation developed.

It was first thing in the morning

James: “Breakfast?”

Me: “Let me change your nappy first, then we’ll go for breakfast, OK?”

James: “OK” We went downstairs and I put James in his chair.  I started to pour some porridge oats into a bowl.  He cried.

Me “I’m making breakfast, James”

James “Not hot breakfast, cereal”

Me: “Oh, OK, cornflakes it is then!”

Everyone was happy.  Not a “real” word was spoken by James, but by using signs, me talking, James sounding and signing we were able to have a really good conversation about what was about to happen and what he wanted for breakfast.  Amazing, isn’t it.

Where can I find out more?

If you have a specialist health visitor or a speech and language therapist, speak to them. If not, trying ringing your local health visitor or children’s centre.  Signalong have their own website with details on how to contact them

In our family we have dark secret.  A curse. The Rogue Ginger Gene.  You can’t tell it’s there (unless I grow a beard, but it isn’t ginger, it’s bronze, alright.  BRONZE!).

I don’t have ginger hair, and neither do my children, which is a blessing I count every time I comb every single precious hair on their head.  My brother does, but his children don’t either. Will their children?  Will my grandchildren be carrot topped?  Why am I so pre-occupied with the ginger ninjas?

If I really put my mind to it, I could raise money and start a charity into fundraising for those afflicted by Daywalker Syndrome.  Those poor Rangas could be researched and maybe one day a cure could be found for flame brain.  Maybe one day Duracell Boy could be released of his affliction and be given lovely blond hair.  Released from the shackles of the matchstick.  It might take billions to source the gene, isolate the cause and introduce a therapy, but it could be done.

One day, one of my Hi-Viz Hair friends let me know just how much all the name calling and ridiculing upset them.  To the extent that he shaved his hair really short so that he looked like um, a matchstick.  So he shaved it all of and we called him Baldy instead.  He was happy with ginger hair.  It was his genetic make-up, it was who he was.  Who was I to evangelise about turning him blond?

Genes are like lego bricks, they are our foundations, they make us, us.  We are genes and genes are who we are.  Should we try to change the genetic makeup of people just to conform with society, or should we embrace genetic diversity and educate the world that ‘different’ doesn’t equate to ‘wrong’.

You can see where I’m going with this.  James has 18q-, a chromosome disorder resulting in the loss of some of his genes.  I’m coming more and more to idea that my energies shouldn’t be concentrated in genetic therapy, ‘cures’ or ‘fixes’.  James is his genes and James’ genes are him.  I love him for who he is and don’t want to change him.  I don’t want to swap his yellow 4-er lego block for a red 6-er.  The house wouldn’t look the same.  Instead, I want the world to embrace genetic diversity, to recognise that ‘different’ is just that.  A world of ‘similars’ would be a boring world indeed.

Would I be more upset if my child was ginger.  Does having the Rouge Ginger Gene stop me from wanting more?

So why am I so concerned about this afternoon’s meeting with the geneticist to get our results…?  What if the Professor says we have micro-deletions and a high likelihood for more 18q- children?  Why should it make a difference?

Facebook Group

Alongside the Facebook page, we have now created a group to for you to join.  Hopefully the group will grow into a place where we can all share our stories, requests, our moans and our successes with our children.  As with all things, we only get out what we put in so please join the group, say hello and start the conversation!

Chromosome 18 Charity Evening

Cheryl is still looking for crackers for the charity evening on 16 december, and I’m sure she’d happily accept any other decorations you’d like to donate for the evening.  the plan is simple – keep the costs down and raise as much money as possible.  Please get in touch with Cheryl if you have anything to share, either via Facebook or twitter (@Ring18Syndrome).  Talking of fundraising…

Kirky’s Progress

I am deep into my winter training plan with my running – the end result being a run across Hadrian’s Wall next June.  I have just completed a race which was 8.45 miles and hilly as you like, even the start line was on a hill!  I am a quarter way to my target, but hopefully I’ll smash £1000 easily and just make as much money as I can for the Nystagmus Network and the Chromosome 18 Registry and Research Society

Or…

You unlock the car door.  You sit in the seat.  You make sure the door is shut.  Key into the ignition.  Put your seat belt on.  Check the car is in neutral.  Start the engine.  Not too much throttle.  Mirrors – are they OK?  Check the fuel gauge.   Does the rear windscreen need de-misting?  No.  OK.  Check the mirrors again.  Foot on the brake, depress the clutch.  Select first gear.  Raise the clutch a bit, is it biting?  Do I have enough gas? Where’s the handbrake…

Two statements describing exactly the same thing.

Sometimes you just know what to do.  Do you remember every bit of your drive to work today?  Can you recall everything you did to sit down and read this post?  Probably not, you just knew what do without thinking about it.  You are unconsciously competent at using a computer, a smart-phone, or driving a car.

There is a model out there called the Four Stages of Competence.  It states that everyone goes through the stages as they learn something new.  It may be how to drive or it may be a new role at work.  It may be learning about new conditions our children have – Nystagmus, Chromosome Deletions, Autism.

The stages are:

• Unconscious Incompetence – The individual does not understand or know how to do something and does not necessarily recognise the deficit. They may deny the usefulness of the skill. The individual must recognise their own incompetence, and the value of the new skill, before moving on to the next stage. The length of time an individual spends in this stage depends on the strength of the stimulus to learn.
• Conscious Incompetence - Though the individual does not understand or know how to do something, he or she does recognize the deficit, as well as the value of a new skill in addressing the deficit. The making of mistakes can be integral to the learning process at this stage.
• Conscious Competence – The individual understands or knows how to do something. However, demonstrating the skill or knowledge requires concentration. It may be broken down into steps, and there is heavy conscious involvement in executing the new skill.
• Unconscious Competence – The individual has had so much practice with a skill that it has become “second nature” and can be performed easily. As a result, the skill can be performed while executing another task. The individual may be able to teach it to others, depending upon how and when it was learned.

Do you recognise these stages?  Do you remember when you knew nothing about your child’s conditions?  You were living in blissful ignorance.  How did it feel when you first started to learn about the condition, and all you knew was that you didn’t know enough.  You were consciously incompetent. Or do you know enough about your child’s needs to challenge the health professionals with what they say?  Are you consciously competent in your understanding?  Do you know it all inside out – can you help others come to terms with the news that their child needs help?

Charities like the Nystagmus Network, the Chromosome 18 Registry and Research Society, and hopefully our own Just James, can help you move along the journey as you come to terms with the realisation that your child has a condition and needs help.

Together we can support each other and learn from each other.  We can tackle the pre-judgements and mis-conceptions out there in educational settings and the workplace.  Only by working together, sharing ideas and being advocates for our children can we move everyone who comes into contact with our children from a state of unconscious incompetence to unconscious competence.

If you have any thoughts on this article, or if you have anything you’d like to share, please leave a comment below or post something on the wall of our Facebook page.

George’s parents, Cheryl and Olly are great fundraisers for the Chromosome 18 Registry and Research Society (Europe) and are in the middle of organising a charity ‘Neil Diamond Evening’ for him on the 16th December, at Urmston Masonic Hall, but they need your help.  How?  I’m glad you asked….!

We want your crackers.  Especially unusual crackers.  Are you travelling abroad any time soon?  Can you get us a box of crackers from another country, with different contents to the usual plastic moustache and joke about Santa’s favourite pizza*?  If you have any crazy crackers you can donate, please get in touch with us, or contact Cheryl directly via our Facebook page (look for Cheryl George Donlan on our list of likes and inbox her).

If you can donate anything else to make the evening a special one and help Cheryl and Olly raise lots of money for the Chromosome 18 Registry and Research Society (Europe), then please get in touch as well.

Thank you for your help!  If you want to read any more about George, and Cheryl and Olly’s fantastic work so far, take a look at their Virgin Money Giving page.  You can also follow Cheryl and Olly on Twitter

* The joke?  you don’t know it?  What is Santa’s favourite pizza?

One that is deep pan, crisp and even.

BOOM BOOM!

Have you ever wondered what Nystagmus looks like?  If you haven’t ever seen somebody with Nystagmus before, have a look at this old blog post from our other site Kirky’s Progress.

Let me spend a minute trying to tell you why we have created this site.  James is our son, and he has Nystagmus, and a rare chromosome disorder called 18q- (or to be accurate, Chromosome 18q23 Distal Deletion Syndrome).  You can read a lot more about Nystagmus and 18q- on some other pages within this site.

Recently, Helen and I went to the Nystagmus Network Open Day.  This was a fantastic day held by the very good people of Nystagmus Network for people affected by Nystagmus and professionals to come together and share experiences.  I’ll write a separate piece soon all about the day, but suffice to say it was brilliant.  Anyway, in the morning there was a parents session, with around 30 parents all sat in a room discussing their children with Nystagmus.  We talked about schooling and statements, help with the medical and benefits side of things, what we as parents can do to help our children, and just how wonderful our children are.  The session could have gone on all day – if it was the one things we did that day then the trip down to London would have been worthwhile. Just talking to other parents helped us realise that we are not alone, and that the problems we had have been experienced by everyone at some point and to some degree.  I think everyone in the room felt collectively stronger and that go me thinking…

Just James

For all his challenges, James is James.  Just James.  And all the other children are just children, living their lives and loving it nonetheless.  I thought about how we could bring parents together, how we could provide a resource for parents of children with either Nystagmus or a Chromosome 18 disorder.  And that’s when I hit upon the idea of Just James.  Just James will be a site for parents of children with Nystagmus and Chromosome 18 disorders.  Just James will also have a Twitter feed and a Facebook page.  The aim of Just James will be:

To act as a hub for parents, providing information, networking with other parents, and signposting to charities and organisations who can help us help our children.

We already do quite a bit of fundraising for two charities, the Nystagmus Network and the Chromosome 18 Registry and Research Society (Europe).  We will continue to raise funds for these organisation.  Eventually, maybe we can raise funds for Just James and use those funds to provide materials to nurseries, schools, care settings and so forth.

I have run a site for while now, Kirysprogress.wordpress.com.  Originally, it was a site for my running.  I used it to upload training plans, details my races and generally blog about my life.  Once I started fundraising the site developed along three lines: Running, Fundraising, and James.  It was getting a bit messy to me, so I thought I’d separate and simplify things, into just-james.org, and kirkysprogress.wordpress.com.  Kirkys Progress will focus solely on my running and how I am raising money doing so.  Particularly, at the moment, by running across Hadrian’s Wall.

If you’d like to see something on this site, please leave a comment and let us know.  It will be constantly developing!