28.9.15

Reaching for the Sky


Reaching for the Sky

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Today I was lucky enough to speak to Charlie Timbrell an inspirational young man who was diagnosed Autistic aged seven, has just achieved his life long dream of owning his own hot air balloon!
IMG_7128Charlie was keen to explain that in his words:
“ I felt since I have been become a hot air balloon pilot the only reason is because of my Autism, and I  would like to be able to tell my story to people that think their dreams won’t come true as i know for a fact that mine has come true.”
As a child Charlie had a fascination with balloons, their bright colours captivated him and a lifelong love was born as he explains here.
“ Well the balloons all started for me since the day I was born according to mum and dad but it caused problems as well with balloon , mum used to hate bringing me to parties and weddings  as I would just take all the balloons!
A lot of this i don’t remember but somethings like i used to steal balloons from shops to the point mum had to pat me down before we left the shop as my pockets would be full with balloons.
First school was amazing i got along with every one and teachers was great and and were very with intrigued with my balloons. Then middle school came along and the second people found out balloons was my passion things went down hill,  bullying started and I hated going to school. The autism centre was dreadful and never let me in there when i had melt downs,  every one just thought i was just misbehaving and I would end up running away from school running home and things.
Mum  thought i was just being naughty as well as she had to learn about autism her self and had hardly any help with it.
Then when i was in high school teachers used to tell me be more realistic as I said I wanted my own balloon decor IMG_7129company and to be a hot air balloon pilot and both of those things came true! I own a bunch of balloons and a hot air balloon and the thing is people telling me I couldn’t  do it or it was unrealistic just made me even more determined to become a balloon pilot.
Then collage came around the corner and every one was so helpful encouraging me to follow my dreams and I did and now i am here!
Each and every year on my christmas wish list was a hot air balloon but back in 2007 on August 8th at 8:30am my dad and I flew in a hot air balloon for the first time and that then was the point I knew I wanted to be a balloon pilot”.
In 2009 i was lucky enough to get in to the main arena of the Bristol  balloon fiesta and that was my first hands on experience with hot air balloons and of course I loved every second of it. That was also the first time i saw RC hot air balloons and I thought that was the closest I was going to get to owning a hot air balloon.
Last year ballooning really kicked off for me when I bought my first Rc hot air balloon and then from there I got into competition ballooning and just normal hobby ballooning and then now we have  reached  2015 and i am very close to getting my pilots licence and I own a full sized hot air balloon”.
Charlie let nothing hold him back, shrugging off others doubts  and reaching for his goal of floating in the sky, guiding his own balloon through the clouds and accomplishing what at one time others had deemed impossible.

The Tale of Two Ways


A Tale of Two Ways

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Way one:
It’s been one of those days! Your child won’t listen to a thing you say and refuses to get dressed screaming like a banshee when you try to put on their socks.
You get up and offer breakfast realising to late you’ve run out the holy grail cereal that your child HAS to have, screaming begins your day and your mood goes down from there.
You decide to take your little one out for some fresh air and then a half hour in the soft play area.
The socks WILL not go on! You literally end up sobbing in frustration while your child sits next to you chewing on his T-shirt.
Fine you decide.
No socks for today.
Your little one creates when you get their hand firmly and literally have to drag them out of the door to the park.
You wonder why the hell they are crying now?!
You waited till their favourite show was over, there’s no socks so what now?!
You get to the park and run about happily, your little one giggles and your feeling like a good parent for the first time that day.
Then suddenly they begin to chant something between a scream and a shriek repeatedly.
They cover their eyes, rocking.
You are dumbfounded, and the sound of the plane going over doesn’t help.
No soft play area now you decide so you coax them back to the car where the shrieking subsides and the babbling starts. You lean your head on the steering wheel.
Getting home they ask for their favourite cakes that are in the cupboard and you say no, in a while as you are just sorting them some lunch.
World War Two breaks loose and you end up screaming “Why?! What the hell do you want from me?!” Then you run from the room.
You run from the room.
Well done.
As many parents do not leave the room, some parents even end up putting their hands on their child as they do not know when that point has come to admit that enough is enough.
The need to have a minute, to regroup and maybe have a cry is very important. Your are human, always remember that.
You are trying, and you love your child.
You are nodding.
Now let’s look at how many times the word YOU is mentioned here.
Startling isn’t it?
Way Two:
It’s been one of those days! Those itchy horrible socks with the seams that sting are back and you are NOT putting those on!
You get up and your favourite cereal that you have everyday isn’t there! It’s the only thing you’re up eat, what will you do? You rely on that cereal to start of a very unpredictable day and you cry bitterly.
Your parent decides you are going out.
You don’t want to and again with the socks?! They hurt why can’t they see that or feel what you feel.
Ok now your parents making funny noises with water on their face again, you have a chew of your t shirt as an oral stimm to calm you after that sensory assault.
Ooh no socks!! No no no wait!! Your adverts on with no warning your leaving?! Where’s the sand timer for transition they use at play group?! Aarrgghhhh!!
Running now and parents being silly and happy rolling with you and skipping.
Suddenly there’s a change in the light, a shadow passes over in the sky, it’s a visual change startling in it’s unannounced arrival so you close your eyes and cover them, rocking  to balance your vestibular and doing the screaming stimm that calm you right down.
What? That’s a problem?!
Everything’s been so unpredictable that you decide you want one thing to be your choice, just one.
Cake!! No cake? NO!! That is not right.
Oh your parents angry and they’ve run off.
You sit down confused .
Conclusion:
  1. Always look at why. Why does your child not want the socks on? What could be solved there? Seamless socks? They make those?!
  2. Bulk buy the cereal.
  3. Socks and sensitivities see
  4. Your face when you cry can look very comical if your child does not associate tears and a sad face with a sad emotion. Cards and social stories can help here with teaching emotions.
  5. Chewing as an oral need to regulate, chewy sticks or a clean washcloth can help with this.
  6. Sand timers and a visual schedule will help with transitions.
  7. Tinted glasses can help with visual processing problems and oral stimms are done to regulate and self soothe and should be allowed.
  8. Give the child a cake. Lunch will take no less then ten minutes to prepare and they need the cake. Give them the cake.
  9. Leave the room. Yes you did right. Parents need space to and we need to breathe. If that means five minutes in the toilet singing “ I want to break free” by Queen then do that.
  10. Remember the parent who does not walk away? The one who does something they may regret. You cannot slap hit or throw your child so leave the room immediately if your feelings are out of control. Also leave if you are overly tearful as you will distress your child.
  11. Be happy, work together with your little autie and understand you are not alone. Your child is feeling what you feel to the exact same degree, but as in the title there’s two ways.

              Be a team.

22.9.15

Speaking without vocalising.


Speaking without vocalising.

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After hearing one too many times from a parent that they are amazed to think that autistic  individuals who are non verbal are of the same intelligence or even higher as someone who is verbal, I decided to take action.
I know two wonderful Autistic women both of whom use alternative means of communicating other then verbal speech, and they were more than happy to help me lift the myth on non verbal Autism and a lack of intelligence that seems rife in the neurotypical community.
I believe it’s important for non verbal autistics to show neurotypical people in particular parents of non verbal children that their child, although they do not verbally communicate have the same thoughts, values, interests and opinions as a verbal child.
It’s unusual to me that they would doubt it or think otherwise.
IMG_7114First I spoke with LaVonnya Gardener, an autistic mother to an autistic child who is also registered blind and has only 30% hearing in one ear. LaVonnya makes videos on YouTube demonstrating communication software and applications and uses a communication device. I asked LaVonnya what it was like for her growing up in a verbal world when she herself has great difficulty with articulating speech and would have found it hard to communicate her needs and feelings.
“ As a young child I knew that I was a girl. But I didn’t necessarily know that I was a child. I wasn’t told this. So, I never knew. But I did know that I was a student. I went to the school for the blind. We were called students. So I was a student girl. That’s who I was. That’s what I was.
I did not know that I was blind.
I did not know that I was deaf.
I knew that some students at the school were blind. I wasn’t given the reason for learning sign language or Braille. To me it was fun. So I did as I was told.
I knew that I thought differently than most of my classmates. The kids that I was in the dorm with,  none of them liked me. I knew they knew things that I did not know.. I knew that but I was there for 17 years.  There was only one kid who liked me. He’s now my fiancĂ©. He was my constant at school. He was always around and always pulled me out of stuff. Often literally. Out of closets, boxes, especially boxes. Trashcans and out from under beds. Often I would get myself under these things are into these things because I wanted to see if I could fit. You see I didn’t know any better. When he wasn’t doing that he was pulling things out of my mouth. Sadly for him I’m still putting things in my mouth. Haven’t exactly worked out what should go in there and what shouldn’t.
I played with any and everything I could get my hands on. I would chew on whatever I could get my hands on. If the door happened to be open, I would run out. I didn’t even start questioning why these things happen until I turned about 16.
I started reading about why I did the things that I did.
And then I stood on a psychiatrist desk and demanded to know answers. Well I’m 6 feet tall. So of course they told me. I cleared the desk and demanded to know why I was the way I was.
They told me that I am autistic.
Well it matched everything that I had read in the book, so I believed in them. I have no idea what it meant. And I haven’t met anybody else who had told me that they were too. I will still quite confused and couldn’t study this until I became an adult. I couldn’t deal with computers back then, and we didn’t have iPads back then. As far as my vision hearing, I thought that everybody could only hear out of one ear. . So I didn’t even question those. Maybe I should have. They were calling me stubborn in school because I wouldn’t comply with what they wanted me to do.
Oh, and the communication devices that they had back then really sucked. I definitely preferred sign language then. I still do today, but the technology has improved so much that  I really don’t mind so much using my iPad. It’s just the technology can die on you, where as your hands don’t. I tell people all the time that I can walk and sign, but I can’t walk and type. And I definitely can’t walk and find a picture.
I was never told about graduation so I didn’t understand that and I never understood things as they were coming because no one really explain things to me.
Music has always been my thing and I’ve always been able to sing even though speaking is not something that I was very good at though I was thrown into the oral program. Although  I could say words I could never communicate and I cannot hear my own voice. So my words wouldn’t come out clearly and I could not carry on a  conversation.
So yes I can speak but my voice would come out either way too loud or way too low or way too jumbled. So like most people who are hard of hearing or deaf, I either sign or type. If I’m in a situation where I’m forced to speak I will use what is known as SYMCOM which stands for simultaneous communication. Signing and talking. In school they would try to force me to speak it would never work for them. They would try to take away my communication device but because I was always taller than the teachers I can always get to them before the teachers could.
Most of my life was spent at school. At  home it was completely different I wasn’t accepted  at all. They  didn’t quite know what to do with me. Speech was forced and I never knew what anybody was saying.  I had to guess constantly and I would try to read lips which I can do but only 30% of what is said verbally can be read so I would misread or misunderstand it ”.
I asked LaVonnya about her communicational aids which she explained to me here:
“ I use mostly the symbol and text-based version of Proloqro. They are the easiest to program. They’re the most user-friendly and I don’t have to have somebody there when I can’t think of a word because they have predictive text. So if I can’t spell a word, it pretty much gives me the word. If I really need pictures because for some reason my brain is an processing the words at the time, I can just switch over and grab the app that has the symbols. Which is really good if I’m going to for instance McDonald’s my favourite place to eat. Because instead of grabbing a menu, I can just show the waitress because sometimes it’s way too loud. But some of the drawbacks are that they try to read the screen instead of listening to the voice which takes away my voice.
Another thing they like to do with him look at my caregiver or my family member instead of me and won’t talk to me.
That makes me really upset.
I’m raising a daughter who is Autistic. I’m trying to teach her to advocate for herself, but when she sees that others are speaking for me because the people are insisting on talking to my caregivers she is already hiding behind my caregivers because she doesn’t think they will listen to her either.
She’s afraid to use her device because she doesn’t think she will be heard.
My device speaks with a very clear voice so there is no reason why they would not be able to understand it. I like using it. I’m very good at using it and I put a lot of hard work into programming it.”
Below are some links to LaVonnya’s videos which are highly informative and very helpful.
The fact that people often speak over the heads of non verbals and completely disregard them in favour of the accompanying verbal caregivers is in my view blatant discrimination. It plainly affects confidence and self esteem as they are trying to communicate yet are ostracised repeatedly and portrayed as having no voice as they do not vocalise.
Next I spoke to Em Scott, Em is an admin in my Facebook support group for Autistics and parents of autistic children and was featured in my ABA article.
IMG_7113“My name is Em. I am 31 and have severe autism with mild intellectual disability.
I have two to one support and live in a home for people with mixed but complex disabilities.
I was non verbal up until the end of my twenties when I got sectioned in a intellectual disability acute hospital for four months.
As a child I communicated in just behaviour which left other people around me very frustrated and left me depressed and full of hatred towards people.
As a teen I echolalicaly spoke in singular words but I preferred to be non verbal so I rarely spoke,i didn’t feel connected to people so didn’t feel a need to talk,i made a lot of sound though through stimming.
As an adult,i speak but all my sentences are built on echolalic memory so it isn’t free speech as such but it allows me to have conversation.
I use Makaton and PECS to back up my speech,i have used both of these since a teen, I also used AAC for years until my favourite AAC software became unusable on current windows.
I prefer to use Makaton as my main communication, I instinctively do it first before my brain translates its imagery into language.
I believe verbal communication shouldn’t be pushed because it causes a lot of stress for us and for people who have been non verbal their whole life its expecting them to change their world, to take on another way of life.
Being non verbal isn’t a bad or upsetting thing,its freedom in a way as we don’t have the stress of language but at the same time its not good when people don’t think we can communicate in other ways such as typing and treat us like babies by speaking for us.
I’d still rather be non verbal-my life is so less complicated and difficult without the use of my mouth.”
Now after reading both these accounts from two autistics who use a variety of means to interact including Picture Exchange Card System, Makaton / American Sign Language and communication devices it should be clear to anybody reading this that verbalising is not the be all and end all of interaction.

Fantastically Autistic


Fantastically Autistic

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Fantastically Autistic

An exciting new charitable organisation is blooming that promotes autistic rights, helps families with advice and therapeutic aids and I am proud to say I am on board!

I caught up with creator Dominque Burnett who’s brainchild got the ball rolling on what looks like will be an amazing venture which will benefit many a family and autistic individual.
I asked Dominique what gave her the idea and incentive to start of this remarkable venture.

“ Being a mother of 3 autistic children I have gone through more than my fair share of struggles just trying to find services. Trying to find useful information and aids that promoted a happy healthy life for my children. Everywhere I turned, I was slammed in the face with how wrong my children were for being themselves.

After joining a wonderful support group on Facebook, I learned so much. I was finally surrounded with “My” people. Those who understood and recognised the true blessing of autism. Once I was full immersed in this community I learned I was not the only one who struggled. So many families could not get basic needs met for their children. Adult autistics were stuck in abusive situations because there was nowhere else for them to go. No one offering helpful resources for them to live independently or at the very least in assisted living”.

This charity I believe is badly needed, starting of in its planning stages in the USA where the only charitable help is given by organisations promoting ABA and cure propaganda this venture will be different in that there are autistics on board with neurotypicals and we will stand for a positive fully inclusive ethos with the following mission statement.

Fantastically Autistic

Mission statement:

We recognise that autistic individuals are not supported as strongly as they should be. Autistics  are not accepted or included when it comes to their care. It is our mission to provide support, aid, advocacy, sensory aids, protective gear, and resources for families and autistic adults. Education is the key to acceptance and inclusivity.

Our main focus points

   Small grants directly to families in need.

   Sensory aids offered at no cost

   Support groups

   Adult advocates

   Resources

   Helpful information

   Computer and tablet donations

   Educational tools for parents

   PECS

   Advocacy in any capacity  that we are capable

Aims

Our aim is to improve the overall quality of life for individuals on the autism spectrum. Improving the way individuals on the spectrum are perceived,by listening to those very individuals and having members of the board represent the autistic community by being autistic themselves. Remove the stigma and make way for success, inclusivity, and acceptance.

Objectives

Adult services

Providing autistics over the age of 18 with resources to live independently.

Life skills training courses that will provide skills necessary for independent living.

Outreach to local businesses to find successful employment for ASD adults.

Community courses educating neighbours, family, and future employers on skills to provide a healthy, empowering environment.

Links to adult services geared towards autistics.

Provide sensory tools that allow autistics  to self sooth and manage through stressful situations.

Computers donated to individuals that will allow them to further their education and effectively communicate with necessary resources.

Teen Services

Develop a autistic teen peer group, where teens can meet and get to know others like themselves.

Provide links to counselling to better prepare them for adulthood.

Provide information on reliable, effective parent advocates for IEP and 504 meetings.

Sensory workshops with a licensed Occupational Therapist.

Coping equipment offered at no cost, e.g., ear defenders, weighted gear, protective gear.

Social workshops focused on improving teens confidence in social situations.

Adolescent Services

Sensory workshops with a licensed Occupational Therapist.

Help with local resources in recreational settings.

Computer donation for homeschooled ASD families.

Coping equipment offered at no cost, e.g., ear defenders, weighted gear, sensory bins.

Monthly grants given to families in need for vital necessities, e.g., transportation, respite care, therapies.

Parent Services

Educational material focusing on promoting a healthy self image for your autistic child/children.

Resources for local support groups in your area.

Workshops on how to help your child through a meltdown and how to help prevent them.

Literature on understanding autism and acceptance leading to empowerment.

Sensory workshops with a licensed Occupational Therapist.

Outcomes

Improved knowledge of autistic people

Adult individuals on the spectrum receive vital resources for independent living

Autistic households are better equipped to provide healthy aid for autistic individuals within the household

Unity within the Autistic community

Continuing growth in proper education about the Autism Spectrum

Preventing damaging and life threatening procedures through education and support.

Keep your eye on Fantastically Autistic,  the future gleams bright!

Emma Speaks on Ben TV


Emma Speaks on Ben TV

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11.9.15

Leonard’s Healing Space.gone


Leonard’s Healing Space.gone

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Leonard’s Healing Space.gone

After continued efforts and reporting to trading standards, exposure in the Mirror newspaper and a BBC regional news special I am pleased to report that after yet another tip off by a member of the public who does not wished to be named to Wix websites it has as of 7th of September been permanently shut down! This is cause of great relief to myself and everyone campaigning to stop the MMS quackery treatments he was selling.
As far as we are aware he does not yet know as he’s on a course with Jim Humble and will I’m sure be horrified to learn his website which sold MMS which is for those not aware Chlorine Dioxide bleach which he recommends to cure the neurological difference Autism and diseases such as Cancer, Ebola and Hep B.,  enema kits and baby bottles is now gone.
Let’s celebrate for now and our thanks to the person who made a comprehensive in depth file and sent it to Wix.

After Leonardo was exposed in the One Show then again on BBC Regional news after I contacted them in May this year I’m so happy to see his websites down, I also contacted the Trinity Mirror group who ran an article on him exposing him for the charlatan he is.
Let’s hope he stays down awhile though I’ve noticed bad pennies have a habit of turning up.

The Confusion Between Autism and Co Morbid Conditions


The Confusion Between Autism and Co Morbid Conditions

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I was asked today by a member in my support group what the differences between autism and learning difficulties are. They had been informed by a well known autism charity that autism is a learning difficulty. This is not the case at all and I felt the need to break down exactly what autism is and how other co morbid conditions that can come with it can be  intertwined with it.
Autism is a communication condition, a neurological difference that can affect a persons speech and ability to express and recognise feelings. Some of us have no speech and are considered non verbal though we may be able to vocalise noise. We may also display echolalia speech where we will echo the end of a question asked of us or vocally replay a favourite advert or phrase for comfort and an attempt to communicate.
For those of us with no or limited speech we can communicate given the right tools to use, we can be taught to use sign language, communicational apps and picture exchange communication card system ie PECS. We can if able write, type or draw to communicate as well.
We are often accused of having no empathy which is wrong, many of us have an abundance which can affect us strongly. We are thought in some cases to not have any or little when we react to things inappropriately, ie laughing when some is hurt or crying at a happy event.
That does not  mean we do not have empathy, it means we have difficulty appropriately displaying our reactions. An autistic child may find a sad or angry face funny and so laugh when they hurt someone or are being reprimanded. It’s simply finding the right way to communicate with us. Visuals and timetables help to show us what will be happening as we may have anxiety over plans or show extreme displeasure when plans or routines are changed.
Routine is important to us, we need boundaries and clear plans to base our days on.
If our plans are changed we find it hard to accept and can become distressed.
Some  children  like to scatter items everywhere in a seemingly random fashion, others will make intricate patterns and lines becoming distressed if they are moved.
That is because these lines or random scatterings are our way of controlling our environment. To us as long as those lines or piles are there then we can try to cope with everything else.
We also may have meltdowns. Some display these externally becoming loud and violent , tearful and self injurious. Others may sob silently internalising all the explosive emotion within. Meltdowns are normally caused by misconceptions or a build up of frustration, plans changing or anxiety related situations.
We will often collect and become quite consumed by items, subjects or people of Interest to us. We find great joy within these hobbies and unless injurious to ourselves or others should be encouraged.
Replaying of events is another thing we involuntarily have, be it a song, a situation we were in or something visual. We can experience the exact same emotion we had at that time with vivid intensity which can be distressing if it was an unpleasant experience.
You may notice your child begin to laugh for no apparent outward reason, chances are they are experiencing a memory of something very funny to them.
Sleep can be challenging as we do not produce the required melatonin to alert us it’s time to sleep. Incontinence can be an issue if the introceptive sense is affected.
Dyspraxia also called Developmental Co Ordination Disorder.
A condition that affects balance and co ordination. Someone with Dyspraxia will walk with a heavy tread to gain priopreceptive feedback from the floor.
They may come down the stairs one tread at a time, as depth perception is affected.
2D vision is another sign and lack of social awareness, often bumping into things and tripping over nothing apparent to the naked eye.
Fine manipulation is also affected so a difficulty with buttons, zips, laces and cutlery.
A person with Dyspraxia may also tire easily.
Learning Difficulties.
These can display as mild, moderate or severe. A difficulty with literacy and maths, a person with learning difficulties can usually learn but at a delayed rate and with lots of input and support. The more severe the harder it will be. Learning difficulties can affect all aspects of of a child’s education and they should be given a good plan possibly with a 1.1 to help them.
Sensory Processing Disorder.
People with sensory problems can have auditory, olfactory, visual, oral and tactile challenges. They may need ear defenders or ear plugs to help them cope with noise, they may need tinted glasses or a wide brimmed cap to help with visual challenges is bright lights and colours. We may get nauseated from certain smells and tastes. Some sensory seek orally by chewing or sucking and a chewy or clean cloth if they prefer can aid this.
Sensory seeking behaviour like emptying contents of bottles and flooding the bathroom are not intentionally naughty and can be helped by redirection to structured sensory experiences.
Sensory overload can occur when all the senses become inflamed at once and the sufferer may need to find a dark cool space to recover, it can be nauseating and extremely painful, best described as a migraine with vestibular disturbance, noise sensitivity and visual sensitivity. A weighted blanket and peace and quiet will help.
Someone suffering an overload may also have a shutdown where they sink to the floor, to gain priopreceptive input. The floor is solid and dependable when everything else rushes and spins around you, and they should be allowed to remain there until ready as forcing them to get up before they are ready can cause a meltdown.
ADHD
A child with ADHD may have difficulty sitting still and may fidget. They will be impulsive and have little sense of danger, they will have hyperactivity and being able to focus will prove hard. They will be adventurous and probably love climbing running and jumping.
They can however concentrate for a good short periods and learn with ease.
A child with ADHD will have trouble getting to sleep and may have difficulty awaking.
There is to date no cure for autism as it’s not a sickness or disease.

Brit parents with autistic children paying thousands for 'scam dolphin therapy'

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