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I keep forgetting what I am saying? Is that a jelibean thing?

Did I tell you that....................?
Oh and by the way......................
Did I remember to tell you.......................?
Um, er , um what was I talking about.............?
Now where was I ......................?

Senior moments? Um no I don’t think so, if they are then I really am going mad as my 15year old jelibean is as guilty as I am. We both have far too much ADHD.

Who in your family is telling you a tale about work one minute and then is in full flow about how cheesed off they are with etc, etc? Do you dread it when you know that you need specific information and quite frankly, it's easier to pull teeth than to get to the information.

My son was giving directions to a driver the other day, a local who was unsure of the new road system, a never-ending maze of roundabouts, one way streets and low bridges. Technically it should have taken no more than a couple of minutes. A flask of tea later, and a shake of a hand, the poor driver could have been to Land's End and back - we're over an hour away from there, if you’re wondering. Still he’ll never forget us in a hurry.

How embarrassing is it to start off a real good yarn, get interrupted for a millisecond and totally lose track? Now we've not covered this before have we? I won’t dwell on this for long but it is a real problem. This ridiculous short-term memory lark. Seriously, I even interrupt my own train of thought! Apparently I am reliably informed that marshmallows only do this if they are tipsymallows or sleepymallows. That’s correct folks, we jellybeans don’t have to be either!

Actually this only came to light very recently when it was pointed out by a marshmallow friend that she had never witnessed anyone go further off track than me and my eldest son, also gifted with ADHD. During a heated debate we each constantly interrupt our OWN chain of thought and can't get back on track. No one had bothered to point it out to us before.

Really, can’t you see it yet, how really irritating us jellybeans can be. Look at it in another light and actually it’s pathetically funny in a strange kind of way. You see we like to decorate everything, a bit like I’m doing now, coming up with regular new ideas that last a heartbeat before the next one knocks it out of line! Yes I know we like lines - conveying everything imaginable on our never-ending belt of thoughts and confusion.

This going-off-the-subject lark is another good reason to get yourself a top of the range EDIT program installed in your brain one under the guidance of an expert programmer: PREPARE, PAUSE and PARTICIPATE.

1. Think in your head about what you need to say, not what you want to say. Cut it down in your head, bullet points are good and if that helps you, great! Explain to those around you that it may be easier to talk in short sentences and ask them to bear with you. It’s a good way to learn and you’ll be both surprised and delighted by the reception. Cutting things down will give your memory a chance to store only the vital information, no point in fogging it up with rubbish that you should have chucked out with yesterday's takeaway.

2. Stop and think about the timing, is it appropriate to talk? We're about to explore this in a minute so for now take my advice and PAUSE.

3. PARTICIPATE, slowly and carefully, following the plan you had in your head. See? Easy peasy, and everyone understands you and you haven’t gone off the subject or added some pointless decoration – you haven’t put a cherry on top of the Christmas tree! Well done!

Again using pictures, we can teach our little jellybeans how to SEQUENCE.

Anyway getting back on track, oops, the early year picture and pop up books are very simple sequences. Spot the Dog, Spot goes to bed, Spot goes for a walk, Spot’s Birthday party. These books stay on track, and show us in very easy ways how to signpost ourselves to remind us where we are.

Create landmarks in your head, a beginning, a middle and end. Know where in the story you are, and it's easier to get back on track. How many of you forget which level of the multi storey you parked on, ending up getting very hot and bothered as you unravel the puzzle? If you had taken the trouble to CONSCIOUSLY remember landmarks you wouldn’t be er hmm um lost! These little incidents are just the same as conversation, think of it like a journey, navigate via bullet points

So it maybe that half of this article could be deemed repetitive or unnecessary, but hey I am a jelibean and finding editing for meaning and sequencing a tad tricky. So in answer to the question - YES it's a JELIBEAN THING :)

Can I catch AS? Is it curable?

I have been asked to write a little about something that may affect many of you directly or indirectly…..Autism Spectrum Conditions (ASC’s for short)….all seems so complicated, let’s make it easy. I am diagnosed on the spectrum as are my five children, so I have lived it, breathed it and studied it for years! I am a trained State Registered Nurse and have a Post Grad Cert in Autism (Children). There seems to be a bit of a mystery surrounding it all that maybe we can shed a bit of light on. Many parents have obtained a diagnosis only to be completely perplexed as to what it means and what they should do next!

Let’s get one thing straight before we begin, this is Jelibean's take on the subject…..the most recent academic research strongly suggests that ASC is GENETIC. So NO it can’t be caught, contracted or even caused by mercury poisoning or the MMR jab. I am glad I got that out of the way early. That said what is it all about?

ASC’s are a neurodevelopmental difference, that’s all. We are not brain damaged or disabled we are ‘different’ and there are millions of us about! For this article I would like to concentrate on the high intelligence autistics if I may. These are the children who are in mainstream schools right now, struggling to cope and often failing. These are the children who are being missed and let down most. ASC’s are invisible unlike many physical disabilities or Downs Syndrome which is clearly recognisable. Many children on the spectrum are cherubic looking with no easily recognisable differences to the majority….but to an expert eye they are often there.

ASC’s present with differences and some weakness in communication and sensory issues in particular. That is why some of ramble on forever about what WE want to talk about! Favourite topic being OURSELVES. Some prefer to keep quiet for most of the time, often feeling awkward in others company.

All of us have trouble in processing all five senses together so if we smell something, we can’t talk about something else…it distracts us. Fabrics and certain clothes may bother us to the point we end up cutting out labels and choose to wear the same garment over and over!! If I could live my life in pyjamas I would!

Or maybe we have to wear sunglasses in winter as the light is too strong. Many of us are very picky eaters….takes me hours to feed my brood, everyone wants something different! So imagine sitting in a classroom having to listen to a teacher and understand it AND then write it down? Impossible for many on the spectrum.

Most people simply look at ‘children’ as being ‘autistic’….but Autism has been around a long time so where are the geriatrics and MY generation (I am 52, can’t be the first surely?). So let’s stop pointing the finger at our children and take a sneaky look at ourSELVES! It takes a JELIBEAN TO MAKE A JELIBABY. The diagnosis of Aspergers Syndrome only became official in 1993 before then it may have been wrongly diagnosed as another psychiatric condition such as Schizophrenia or Borderline Personality Disorder. AD/HD although diagnosis has been around since the 1940’s, gets easily confused with Bi-Polar. So you see we are still learning heaps.

It all sounds horribly scary, but actually when you understand it and embrace the spectrum it becomes like a parachute jump – exhilarating, unique and exciting! Don’t be scared be empowered! We will help you understand. And we will endeavour to keep you smiling all the way through! A sense of humour is essential!

And a cure? We are not disordered? We are not ILL! We are DIFFERENT......WE ARE WHAT WE ARE! It's a wiring issue that's all.........Our family wouldn't change who we are for the world. we like being  jelibean's now we understand our many  differences :)

Autism, Aspergers Syndrome, ADHD – where it all started!

 


Back in the 1926 a Russian neurologist called Eva Ssucharewa wrote a research paper where she described a ‘schizoid personality disorder’ in children. The paper was later translated by Sula Wolff and it became clear that what Eva Ssucharewa was describing were the same core deficits of autism that Leo Kanner and Hans Asperger were to write about some 20yrs later (Ssucharewa 1926, Wolff 1995).

 

In the 1940’s Leo Kanner emigrated from Austria to the USA. He worked as a child psychiatrist in Baltimore and noticed in a small study of only eleven children that they appeared solitary and withdrawn (Kanner, 1943). Unaware of Kanner’s work Hans Asperger a paediatrician from Vienna was using the same word ‘Autism’ for his studies of only five children in Vienna (Asperger, 1944). The word Autism is derived from the Greek word ‘autos’ meaning ‘self’.

 

In 1798 (yes that long ago!) a Scottish physician Alexander Crichton made some interesting observations in children exhibiting hyperactivity and the inability/difficulty to concentrate. He described a similar state to what we now know as inattentive ADHD a ‘mental restlessness’. Sir George Still in 1902 presented three lectures describing a study he had completed involving 43 children who had serious problems with sustained attention and self regulation. They were also described as aggressive at times, defiant and resistant to discipline. These children however were excessively emotional or passionate. Often they did not learn from the consequences of their actions although their intellect was appeared normal.

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Criteria for Autism, Aspergers Syndrome and ADHD are found in ICD-10(WHO 1992) and DSM-1V (APA 1994).

 

Jelibean embrace ADHD as part the Autism Spectrum. We feel we must however point out that there is still much discussion from academics and researchers regarding this subject. It is our belief that no-one is any ONE condition purely but that we are all completely unique and have a wide range of complexity of differences. This we believe is what makes the Autism Spectrum as beautiful as it clearly is.

 

So that being said, what actually does it mean? How does it present? We will explore that further in other articles.

 

 

 

 

 

What's normal for a Jelibean

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!

Is an autistic brain bigger than a 'normal' brain?

That a jelibeans brain is bigger than a marshmallows? Makes sense, I can never find a hat to fit!

Again there is plenty of research, just google autism brain size, and take your pick!