Home educating your Autistic child.

Home educating your Autistic child.

Posted by: Emma Dalmayne

More and more parents are withdrawing their children from school be it specialist or mainstream and choosing to educate them otherwise, ie home education.

This path is being chosen as many children are being let down by the schooling system. Adequate support is not put in place, sensory breaks IEP’s and ECHP’s are not being honoured or followed. Children are floundering in a socially hostile environment, suffering sensory overload from noise and overcrowding with no sensory breaks or 1.1 support.

Sadly children are also suffering bullying to the extreme of having self injurious thoughts and extreme anxiety.

If your child is refusing to go to school, crying, melting down and attacking you when you pick them up they are trying to communicate something. That something is that they are unhappy and overwhelmed.

Obsessive lining up when they get home, more then they would normally do or scattering then becoming distressed when these are moved are signs that your child is controlling their environment as to them everything else is out of control.

Likewise of obsessing over a particular object then getting overly distressed if it’s not there or their sandwich being cut in the ‘wrong’ way. It’s all loss of control, the last thing they thought they could control had been take and they are devastated by it. This is a build up of anxiety and expectation that crashes around them causing a meltdown of epic proportions.

They have held in everything that has set them off during the day be it sensory overload from the lighting in the dinner hall mixed with the smell of the dinners and the jostling they received in the queue to the fact they cannot control their environment.

They may be being bullied and not have the language to explain it and this still relates even if your child is fully verbal.

They may even assume you know. To them you take them there and pick them up and in their mind they know, why wouldn’t you?

Being able to vocalise does not automatically mean they can communicate.

A school that provides this support if your child attends one should be treasured and a good supportive teacher is worth their weight in gold, sadly it’s rare to find this.

If you are having these problems, getting threatening letters from the school boards for non attendance and have a child that’s vomiting and having attacks of running to the toilet or alternatively holding their bowel or urine. After ruling out all medical possibilities you may find this is due to anxiety.

You may be having to literally drag your child to school with them begging not to go, and you may well be going home an emotional wreck.

You don’t have to do this.

I am advising from the UK so can only go by our educational system, and here you can de register your child to home educate them.

Under section 7 8.6 of the Education Rights Act you are allowed to educate your child otherwise. It’s the parents responsibility to educate the child, most parents think this automatically means you must place your child into a school to do so. This is not the case. You are not required to follow the National Curriculum though if you wish to you can purchase the packs. Most of the contents can be bought separately in bookshops.

To deregister you write a letter to the school and/or email them this:

Dear (headteacher),

As from this date (chosen date) please  remove (child’s name) from the school roll.

They will now be educated otherwise.

Yours sincerely

Some parents choose unschooling which is allowing the child to learn from their environment with little to no parental direction. Games on the computer are encouraged for promotion and cause and effect, reflex and if online social network interaction. Strategising and maths are learnt in this way. Screwing is a common practice where the parent leaves books, puzzles and work for the child to do of their own accord.

Some children require a period of unschooling , the damage done by the school enviroment may take some time to recover from.

I unschooled for six months such was the damage done to my sons psychological wellbeing.

Others choose the more typical route of workbooks, printed worked sheets (try Twinkle, beautiful sheets for free), Khan Academy online tutorials and Reading Eggs/Math Seeds tutorial. The beauty of home education is your child works at their own pace, learning can be done anywhere be it  in the front room or on a blanket in the garden.

Learning can be done anywhere at any time. Libraries and museums are free, documentaries  are great for learning.

Reading stories and writing them is literacy, a play on the radio is drama.

Playing with cars, little figures and tracks is small world play, messy creative time is sensory play.

Painting and drawing is Art, running and jumping in the woods or swimming and cycling are physical education.

Walking to the shops with a list with you be it visual or written and help nt pay is life skills with budgeting.

Home education meets and play at the park is socialisation.

You do so much more then you realise.

You don’t need to drag your child to school and cry walking home. Not all education in a school will suit every child.

The Power Of Why

The Power Of Why.

Posted by: Emma Dalmayne

You are waiting on a platform for the train and it’s twenty minutes late.

You are anxious and need to get to your destination so you go to the nearest ticket guard and enquire as to WHY it’s late?

A beautiful piece of art sculpture catches your eye in an art gallery, it’s stunning and is made from an unfamiliar material. You are curious, and ask the guide HOW it was made?

A wonderful unfamiliar taste fills your mouth when you try a new dish in a restaurant and you ask the waiter WHAT the recipe is?

Your car breaks down so you pick up your phone, dial the garage number and ask CAN they come out to you?

The power of being able to inquire, to question and decipher is extremely important in reciprocated speech and interaction.

It allows us to find out what, where, how and why things happen. It allows us to question our fate and ask for help.

Today my daughter who is undiagnosed autistic asked her sister why she could not go into her bedroom. My older daughter was tidying her room and had told my little one to come back later, and little asked “ Why?”.

Now to most mothers I see in the supermarket walking around pushing a trolley the word ‘why’ can seem to provoke a myriad of emotion. I see a spectrum of responses in my minds eye that range from patient answers to the yelled pained “What? No!”.

To often I’ve seen the children reprimanded for questioning ‘WHY’.

Why can’t they run into the road?

Why can’t they eat sand and why can’t they have that toy?

‘Why’ allows children to make sense of their boundaries and often to push them.

To make informed judgments about their rights, to question the cycle of  time to allow themselves to transition to the next activity.

Why do they have to finish playing now?

Why is it raining and is that why they have to wear a raincoat?

What will happen if they do not wear one?

Can they wear their new Wellington boots?  

You get the picture.

For my daughter ‘why’ opens up a whole new world that while not completely free from frustration will at least make a little more sense.

People’s responses have been mixed on hearing that my little can now say why have been varied but most commonly has been “Oh she won’t stop now!”.

I hope she never does.

I hope she exercises the right she has to question why as often as possible.

Eventually she will ask ‘how?’

How does an aeroplane fly?

How do they do that?

How can we get there?!

I can’t wait to hear ‘What?’.

What is this?

What made that and what did you say?

My daughter is three years old next month, and until today has never questioned anything.

She has been frustrated and angered, saddened even in her limited vocabulary.

She now has a world of discovery and the power to demand answers.

And she will get them.

She can now ask why, and I can now answer.

Reaching for the Sky

Reaching for the Sky

Posted by: Richard Johnson

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!

Charlie 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 company 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

Posted by: Emma Dalmayne

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.

Speaking without vocalising.

Speaking without vocalising.

Posted by: Emma Dalmayne

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.

First 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 fiancé. 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.

“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.