ELLUMINATE OUR LIVES

Case extracts Real Life experiences of parents and children in crisis and urgent need of Elluminate

 

(These are from just those who found our facebook page in May 2013 – we are aware of many more in need)

 

“I told my child's H.O.Y. about Elluminate today - he did not appear to know about it; she will need home tuition for at least 3 months after her cancer treatment & apparently home tuition does not normally cover the length and breadth of GCSE subjects she is currently studying - she has already sat some GCSE modular exams as an inpatient on an adult oncology ward. W.E.L.B. - any advice will be appreciated. My child's school are fantastic and nothing is too much trouble - she is an A grade student and highly conscientious regardless of her illness”   (As per this child and many other child cancer patients and others with long term illness who want to connect with learning, we know schools are not offering Elluminate – as they should due to lack of knowledge and union action).

 

“I have been offline for a few days guys new crisis....as I told u my daughter is being given a statement soon and we were going to try phasing her into school at the end of this term (remembering she has been out for nearly 2 years) so she has now completely disengaged with her home tutor, who she had a good relationship with, had just got her sleeping settled a bit but she’s now back to wandering around at night and refuses to leave her bedroom. She’s bursting into tears and having more panic attacks and won’t sit in a room with her brother, sister and myself .....ahhhhh”

 

"I have 2 boys, in their teens and 1 girl nearly 11 (transferring to secondary school) all on the autism spectrum. All 3 are getting sick all the time. My wee girl has been out of school for some time due to anxiety and stress issues, had to change schools as she wouldn't go back and the boys got bullied left, right and centre. We are getting hunted by the EWOs with letters, visits and court. They claim they want to work with us on improving the attendance but so far the only suggestion we got is that my partner should bring them to school! I didn't even know about the option to de-register the children from school and home school them. Neither the EWS nor SEELB ever provided us with any information or other options for that matter".

 

“I need Elluminate! I have a daughter with ADD/ASD who is currently not in school as her social difficulties have brought her to the edge of a nervous breakdown. I have another daughter who has ME and who would have benefited enormously from Elluminate had it been available when she was doing her A levels, as it was she completely taught herself from home. I have a son who suffered a brain injury early in his A2 year. He recovered from the accident itself reasonably quickly but the residual effects of sensitivity to noise & light made return to "normal" life a gradual process. The school environment was too much for him and he was unable to return to school that year and has had to repeat the year. I also have 2 sons with aspergers syndrome and ADHD who manage in school. So I do know the difference between children on the autism spectrum who can cope and those who can't”

 

“My sons troubles began before age 5 too. I am with you in this. It is so hard to go through alone. We really need ways to link up and share our stories of the anguish of an ASD child who is being hurt by school. Only the parents see what is really going on. FB pages like this one help because I can see I'm not alone, everybody endlessly go's on about getting my child to fit in. I believe it’s the so called “normals” should be taught how to behave around my Autistic child. He's perfect he can't lie, and he's brilliant, the Autistic child is an amazing wee person and I would have 100 of them over the ”normals“ any day. Its good your explaining it as I am sure a lot of people genuinely don't know what these youngsters face...........or really imagine what sensory disorders can be like for some kids daily. And it’s the daily without a break that's the real trouble, not just having an off day.”

 

A father seeking info re Elluminate, for his 12 yr old son who has autism. "We removed him from school last October  after 8 weeks in school sitting in quiet rooms un supervised. The school was full of broken promises which led our son to become upset and withdrawn and even threaten his own life. I removed him of the school register and invited the EWO out to our home and social worker as well to show my son wasn’t a truant, he was learning at home, they were happy with this but offered no help. He is missing out in social circles, but that the way he is" I have just tried to contact the south eastern education board to ask about this resource. Firstly I had to explain what it was as the receptionist hadn't heard of it! I was put through to the Special Education/ Home Tuition Dept who again didn't know what I was talking about. I was then put through to Home Schooling and got a voicemail! I’m pursuing this to get answers. I've also phoned my sons school to see if they've heard of it and waiting to hear back from them. I’m not holding my breath!!!!

 

“My daughter has been out of school for nearly 2 yrs now...problems with dyslexia, self-harm and camhs now suspect asd. I also think she has dyspraxia and she has dyscalculia. she has now developed panic attacks, insomnia and anxiety. she was given 6 hours home tuition which started in nov. the ewo threatened to take me to court, the vp has been rude and dismissive, the ed pyc told me there are lots of children with asd happily attending school. i found out last week that a statement is going to be issued soon and i have chosen a new school though i still cannot imagine her in a school setting as she is very sensitive to noise and crowds. who do i lobby to is it the local mla? i am so incensed by this life saving tool being in place but no one has mentioned it as an option. we have been made to feel that it is my fault for not encouraging and my daughters for not trying. please let me know who to contact to try to make a difference. my battle is far from over and this has affected all my children, not just my daughter. please excuse no capitals im just to tired and cross to put them in. thank u for bringing this to my attention” xx

 

“Hi. I was informed about your page and this resource by a friend who also happened upon it by chance! I am astounded to learn that this resource has been funded and available since 2011 yet parents are not informed about it. As the mother of a 16yr old son with Aspergers ..this would have been the perfect solution for my son. He has had difficulties being in the school setting since 2nd yr of grammar school. He missed so much school because of these difficulties which lead to depression, self-harm and psychosis. If I had known this was available to him I would have been fighting for him to have access to it and it may have prevented a lot of his problems. We were offered 6hrs home tuition a week which is totally insufficient for a child doing GCSE's ...the tutors were only going to cover maths and English so what about his other subjects?? Turns out it didn't go well with them as I was unaware and not informed by the board that these tutors are given NO information about the student beforehand. He had his first lesson which covered a very mired subject and lead to him being admitted to the adolescent mental health unit!! Even the school unit there did not mention this resource. Well now my son has reached the point where he tried school again and he just can't cope with it...it’s the setting and not the work. We are hoping to get him into Tech in Sept to see if that works better for him. I’m just disgusted that this resource is there but no one tells us about it!! It would have saved my son and I so much heartache.....instead he's leaving school with no exams and Im left to try to sort out his future schooling”.

 

"Hi ya, really great that you have brought this into the spotlight. I am really interested, as my son who is 14, and has a diagnosis of Aspergers, has been out of school for 3 years. All we got was 4.5hrs of home tuition and I have ended up having to pay for extra tuition privately as he was missing out on so much".

 

“As a mother of 3 school age boys, 2 of whom have missed school for several spells through illness, and whose needs or feelings were never considered at those times, I feel strongly about the urgency of providing Elluminate for all classes. I am currently halfway through a Modern Languages degree course with the Open University. Tutorials are in "online rooms" via Elluminate. These "rooms" can also be used for language practice or chat when there are no scheduled activities. Sometimes the sound can be slightly ropey, but mostly it's great. As Elluminate is only audio and whiteboards, I do not have to tidy my hair or room to attend!! If I miss a tutorial I listen to the recording later on whenever suits me. Without Elluminate I would not be able to complete this degree. I regularly converse with students in Cork, Cookstown, Wales, Switzerland and Spain, and am aware that many are educating themselves in quite challenging situations. Elluminate MUST be rolled out ASAP. It is the education authority’s obligatory duty, and a step forward in giving every single child an equal chance. Without Elluminate I would have missed so much. Our children too deserve fair play in education”.

 

“One of my children is currently "out of school". She has ADD with Asperger traits and has never been able to fit in at school. I have watched her struggle to belong, and have felt every rejection and every cruel remark as a knife to my own heart. In the end she coped by isolating herself - from when she went out the door until she got home she talked to no-one and no-one talked to her. Her self-esteem was so low that when a teacher would insist that a group include her in some task or other, she would come home & say to me - "but it's not fair on them having to take me". She dreads school & after years of making her go the result is a cowed frightened child who has to see a psychiatrist. What have I done to her? I have come to my senses - Enough already! The education system is not only failing these children - it is torturing them. It is time there was something else”

 

Many parents report horrendous suffering due to failure of services and lack of understanding of autism. Such as one parent of an 11 yr old autistic girl recently taken to court by an EWO as her child could not cope with school and became very ill. Both the EWO and the Judge admitted they had no knowledge of autism.

 

Many parents relate to this poem submitted to us by a mother whose autistic teens could not cope with the school environment who need and want Elluminate to work

 

Beautiful Intelligent Kind Young Girls

 

Submerged.

Huddled in a corner,

Hugging knees

Tears flowing.

 

'I wish I was normal

I wish I had a friend

I wish I could do things

Other girls my age do

I wish I had been able

to stay at school.

 

So much I cannot do

I hate myself '

 

Frozen

In communication difficulties.

Surrounded by vast black holes

Of understanding.

Children self harm, meltdown, isolated,

vulnerable, misinterpret.

Sensitive to touch, sound,

Confused on what is said

Or the tone,

Frantic about - what's next?

Trapped by what they cannot say. Lonely, bored, distressed,

Deserted by a system

That exploits their silence,

Their need for confidentiality.

And their families exhaustion

And need for privacy.

 

Met with nothing.

Silenced by their struggles.

Invisible by their ordinary looks.

Not physically ill,

Or physically disabled.

Nothing obvious at all.

Hidden too

In the system.

Buried under years waiting lists.

Lost

Unheard as no services to hear.

Referred to a "substantial list'"

With no triage of need.

No answers, no phone calls returned.

No staff, no skills, no training.

No money, no funding.

Not meeting criteria

Not ticking a box

Not the right referral pathway

Not the right report

No adjustments -as no understanding and no one to explain

No one listening, no one hearing

No time

Abandoned

Alone

To cry, to fear, to feel

Acute depression, acute anxiety,

Obsessions, rituals and routines.

Stuck in black and white thoughts,

Trapped, invisible, silenced.

Pretending to be normal.

 

What is this?

This is autism

In Northern Ireland

 

And who am I? I'm just Mum

What can I do?

Who do I tell

About the neglect,

Harm, damage, abuse

Of the system?

That fails, misjudged,

And abandons?

It's child abuse -I know.

Where do I report it?

To the same system that fails?

How do you measure

These depths of despair

Confusion, distress

and heart ache?

Quantify the years

Or qualify the pain

And damage in

beautiful unique humans

And in a family?

Count the cost to humanity

As we fail to support them

To develop

Their brilliance?

 

Who's job is it to end

The dysfunctional,

Disordered service?

The ignorance?

The discrimination?

So schools can include

Celebrating different abilities

Instead of destroy ?

 

I'm just a mum

Ignored

Dismissed

Not believed

Left outside the door

When 'the experts' took my child

And told me nothing

While they

Misdiagnosed

And Misguided all of us.

 

Left outside

While they met

As 'professionals'

To decide on

What they knew nothing about

To advise my child and each other

On what they cannot see

And do not know.

 

Powerless mum

Threatened

Watching as the

System assaults us

Tired of trying

To make a broken service work,

Locked up and tied up

In systems, 'good practice'

'Guidelines' - that suits

Only the system.

That destroys

Gifted young lives

Mothers

And Families

 

And leaves

 

A trail of tears

Scars

Illness

And

broken hearts

With missing beats.

Alone. Hopeless.

 

Tired of trying,

So striving to accept

This system failure.

Have to let go of hope

For help and all my exhausting

Efforts to get what is not there.

 

To enable me

Just to survive

As a 24/7 carer.

 

When no one else

 

Understands, or Cares

-enough to help

 

My beautiful intelligent kind young girls.