Well, after what seems like an eternity, we’re close to releasing the new site after our real world and virtual reorganisation. The membership will be receiving an email in a day or so requesting them to log in to re-affirm membership and to have a preview of the new site. Many articles have been edited, lots more have been added and several have just plain disappeared, never to return.

The biggest change is in the structure of the site, there is a new graphical user interface which will hopefully aid visitors in moving around all the information, representing the articles into logical areas (well we think so!).

We will still be using this blog site. We have a couple of members who will be adding to this area and hopefully more will take the plunge and share their thoughts and experiences. The new site will be offering more interactive features especially for the kids (a whole new site for them later in the year). Thanks for coming along, let us know what you think and as always, if there is more we can do please tell us.

Whatever ‘normal’ is.

The biggest buzz I get on a daily basis is seeing a worried face turn into a calm relaxed face. Many parents feel that it is JUST their child who is waking up every hour in the night and rooting through the cupboards for biscuits! Or perhaps it’s only their family who can’t book a holiday (many of us need a holiday like a hole in the head! It’s more trouble that it’s worth often!). Or maybe you can’t cope with any more calls from anxious teachers at school? Whatever the reason – its not just you and its not YOUR fault!

So when I nod my head, agree and look totally unsurprised at many of the stories I hear parents are naturally shocked but relieved at the same time! So this is where it’s at folks! Are you the proud parent of a jelibean who exhibits some or all of the differences beneath?

• Challenging Behaviour?
• Gets frustrated easily?
• Food fads/ Food binge or food refusing?
• Sensory differences/taste, touch, smells, sound, visual?
• Sleep problems?
• Need for routine/rituals?
• Difficulties socialising?
• YBN syndrome (Yeah But No syndrome)
• Duvet divers – when the going gets tough – retreat to bedroom!
• Stimming/picking skin, chewing jumpers, nail biting?
• Anxiety/panic attacks leading to meltdowns?
• Special Interests to the point of obsession? (I know someone who broke their bed with a massive rock collection!)
• Collections (pebbles, tickets, stamps, cards, traffic cones!)
• Thoroughly organised OR completely disorganised (no in-between!)
• Interest in bodily functions to your embarrassment?
• Few ‘friends’ and a bit of a loner?
• Has a friend/s but not the right kind?
• AIP syndrome = Ants In the Pants syndrome – are they ALWAYS on the go!
• Speech and language differences! Either doesn’t stop talking or aren’t talking at all?
• Balance and co-ordination problems – problems with holding a pen/cutlery/tying shoe laces/riding a bike/bumping into things?
• Always out and about getting into mischief?
• Staying at home holed up in their bedroom?
• Differences in perception and context?
• Logical literal thinkers?
• Flits from activity to activity constantly?
• Persevertative on certain activities.
• No money sense, either saving/thrifty (some may say tight!) or totally the opposite, spend, spend, spend…regardless of consequences?
• Fire lighters or fire fascinators?
• Preference to animals?
• Deep down, sensitive and lonely, desperate to be liked?
• Exhibits special abilities and strengths in many areas, often leaving you speechless?
• Loving and caring, just a bit of a handful?
• Misunderstood and frightened?

Now many people could say, well all children exhibit some of those differences? Yes they would be correct, but probably not so frequently, not so extreme: marshmallow (neurotypical people) will not be nodding their heads quite so vehemently as perhaps you are! In fact they probably wouldn’t even know this site existed as they would have no immediate concerns!

These are just a few of the characteristics that make a jelibean! Your jelibeans may not have ALL of the above but I am sure you will be able to recognise a few!  So congratulate yourself that actually you are not the only one out there, there actually are millions of jelibeans, all unique but the same! And if you weren’t nodding your head now, they wouldn’t be a jelibean! All these traits make us what we are!

One day maybe we will have tailored jelibean holidays, shops and activities so that all our differences can be taken into consideration. Nothing like a busy beach, social event to put most jelibeans into a spin! But rest assured we will deal with all the above topics and more in depth! For now rest assured you are not alone and welcome to the jelibean tribe!

Jelibean would like to offer the facility for some to blog their experiences. If you would like to join us please do email us at the following address. This blog would we feel serve many purposes such as:

Providing somewhere to hi-light your particular concerns and to recommend some of your strategies and systems.

Providing somewhere for you to vent!

Reassure other families that they are not alone.

Please join us, you will be made to feel very welcome

You don’t have to use your own name and all copright will be protected.

Thank you.

For many of us on the Autism Spectrum, life is as perilous as walking a tightrope 1000 feet up in the air without a safety net! How much more scary can it be! And to top it all jelibeans are really scaredy cats but many don’t admit it whilst others are risk takers and leave you gasping!  To totter along this tightrope requires skill, understanding and someone to keep an eye on us ensuring we don’t wobble and fall off! This is where understanding and knowledge of what it is like to be a jelibean comes in very handy.

 Prepare yourself, we are going to walk the tightrope but using safety lines to ensure we DON’T drop into doom! Let’s get some safety equipment ready.

 THE SAFETY CHAIN

Being a jelibean means that we are not the bravest of souls at times. And often when we think we are brave, actually we are terrified. Every jelibean needs a system or a specific way they trust to be able to survive. Jelibean calls this system ‘IAMS’ – ‘I’ Arrange  My  Security

‘I’ is all a jelibean can think of! Other people? Who are they?

Arrange  –  find a way that is comfortable  and safe ……

My – it must come back to ‘self’

Security

Imagine a chain, a nice strong one with big links. We build them ourselves and very proud of them we are too! When we are building our chains we are intent on only one thing – to make it as strong as possible and the best. A nice big chain that is strong enough to hold our weight is the best ever. It makes us feel secure and that makes us feel good (we think!). So imagine our distress and frustration when one of the links breaks! Disaster, complete and utter devastation is what a jelibean feels when this happens. And rather than abandon that chain and find one that is stronger and can take our weight, we refuse only to take the whole chain apart to start from scratch. And as we all know a repair is always weaker than the original. So more often than not the chain will again break under the strain. But change for a jelibean is painful. We will prefer to go the old way rather than try something new. 

Teaching a jelibean to walk the tightrope of life safely is a challenge but it is one that can be done. It is possibly one of the most important lessons you can teach your jelibean.  There is a way to help and we will endeavour to show you stage by stage how to start. Enabling your jelibean to ask for help, take advice and initiate choice will enable them within society to walk the tightrope without wobbling to their peril. But at the same time encouraging their independance. It’s a fine line to keep them safe but to give them freedom too.

 We will discuss this  in the article

Fledgling – Flying solo

What makes us a Jelibean? What does it all mean? How do we cope?

Jelibeans, like the sweets are very unique and different – no one the same as the other. There are subtle the differences/flavours/colours, they are all a variation on a theme – crispy crunchy fragile shells, with gooey soft sweet insides. Some may be more palatable than others! The Autism Spectrum is no different to a bag of jelibeans! The beauty and quirkiness, eccentricity and differences we call Autism Spectrum Conditions or ASC for short. Ooh and by the way we prefer conditions to disorders! It’s a jelibean thing.

What does ‘Jelibean’ include as ‘the Autism Spectrum’? Quick answer to that is that we hope we can advise and support anyone exhibiting or struggling with ‘challenging behaviour’ in any form. Here at Jelibean we embrace all Autism Spectrum Conditions. Autism, Aspergers Syndrome, AD/HD and all the other labels that get thrown our way! That neatly brings us on to the topic of ‘LABELS’? How fed up do we all get with being ‘accused’ by others of ‘flagging up issues’, trying to ‘label’ our children’?

A ‘label’ is simply intended to be a ‘signal’. Would the parent of a child with other differences eg: visually impaired prefer we ignore that signal? Maybe we should watch silently as they fall off a cliff somewhere or walk into the path of an oncoming bus? As autistics we would prefer the correct signal as opposed to a label of: ‘disruptive’, ‘aggressive’, ‘naughty’, ‘badly behaved and raised’ and other such offensive titles. Give me the correct ‘label’ ‘signal’ every day. When parents get to Jelibean are often exhausted, frustrated, angry, scared, lonely and desperate. Most have been to numerous professionals only to get sent to another!

The main problems these parents and families would seem to be encountering:

• Serious lack of knowledge in Autism Spectrum Conditions.
• Severe difficulty in obtaining specialist advice/support locally or nationally.
• WBS – Wicker Basket Syndrome = being passed from one professional to another without establishing anything positive.
• BWS – Brick Wall Syndrome = parents spend ages talking yet getting seemingly nowhere.
• When diagnosis does come often it is unexplained and unsupported.
• Some diagnosis may be incorrect or misleading.
• Other diagnosis may be missed entirely.

Why is it this difficult to get any help?

From what we have experienced within Jelibean so far is that there are simply not enough people on the ground qualified in Autism to meet with the ever increasing demand. To get someone specialising in Autism Spectrum, the reality is that you may have to travel miles. Out of county referrals are becoming more difficult to obtain due to the severe lack of funding. So where does that leave many of us? Answer – in a pretty bleak place.

Is it that simple?

Sadly yes

So what does a parent do? WHAT ROUTE? Is there a route?

Most commonly parents appear to go one of two ways currently.

1. Family Doctor
2. School

What can you expect?

General Practioner (UK) /Family clinician/Doctor

For some parents it can be very traumatic visiting a doctor to say ‘something is wrong with my child’ but I don’t know what! It’s hard too to admit that actually you as a parent cannot cope with your little darling. What does it say about our parenting skills? Family clinicians are generally doctors who although they may have specialised in certain areas, will be generalised in their knowledge. For specialist referral this family doctor will usually refer you on.

But for jelibeans it’s not that easy. There are NO general AUTISM SPECTRUM CONDITION specialists that cover the whole spectrum. So failing this we have a choice – Paediatrician or Psychiatrist. Grab your coat we are going on a journey! But you may have to wait a very long time for that referral (if it even happens!).

From the initial consultation with a ‘specialist’ who may or may not have any knowledge of autism you can expect to be referred on YET AGAIN. This time it could be anyone you will be asked to visit. For example Speech and Language Therapists, Psychotherapists, Psychologists, Occupational Health Therapists, Special Needs Advisors, Parent advisors, Teachers and the list goes on and on and on!

Did you know?
FOR EVERY ONE CHILD SUSPECTED OF BEING ON THE AUTISM SPECTRUM THERE ARE SIXTEEN PROFESSIONALS TO SEE?

And even after all this you may still not get a diagnosis or support! No wonder parents and families are spent by the time they get to Jelibean.

SCHOOL (UK specific)

Making the first step via this route is normally either making an appointment with the teacher OR the teacher making an appointment with you!

There are a number of ways a school may react. Simply putting in a strategy that they believe will address concerns. These could be:

School Action
School Action Plus
Statement of Special Educational Needs

For the former two these are arranged WITHIN SCHOOL at the discretion of the Special Needs Co-ordinator or Head teacher.

A Statement of Special Educational Needs requires the Local Authority carrying out an assessment of Special Educational Needs from an Educational Psychologist. This is often a long laborious route which often does not end in receipt of SEN. Often parents will go to many lengths including tribunals to oppose any decision already taken.

And that is just the tip of the iceberg. We will explore who is who, who does what in the next article!

Parents often describe the whole experience as a ‘MINEFIELD’, and they aren’t joking. But with Jelibeans help we hope we can help you safely through that minefield with minimal damage! We will attempt to take you through the process and teach you how to stay safe!

While our main site is the repository for general information we would like to impart to readers, this category on Jeliblog is the first step on route to the main site. Here we will be presenting information which you may find useful we can all discuss the content to make it more so. Those granted JeliBlog privileges (please email one of us for details) will be able to present their own information or information requests in this area.

If you’d like your own blog on Jelibean please send us an email. we want to hear from all our members and anyone else who has something constructive to say. Your blogs will of course need to be vetted but within reason you may use this platform to say anything you want.