What next for our kids?

For once I am going to hand over to another writer;
this article when I read it causes me a shortness of breath. The kind of tight chest I used to associate with considering second level. Why? Because my kids fall into the group that cannot cope with the "eclectic" or state special school model. And even the school knows it.

After 5 years of home based ABA after school to try and supplement what the teachers CAN do in a disruptive 6 -1 setting we have had to accept defeat and stop borrowing to pay for it; because interest rates have pushed our mortgage beyond our reasonable means.

We are on a waiting list for a place in a school, 40 kilometres away, even though there is a perfectly good pre-school up the road that is waiting to be recognised and fully funded as a primary school for kids like mine.

We didn't choose to have the kids who fall through the cracks, we certainly don't choose to have the kids who actually break the system in the first place. Just imagine how it feels to have not one but two of the kids that make learning difficult for the other kids in outreach/eclectic schools?

And I say to the Department of Education; What do you want to do with kids like mine?
You have seen the suitcase of data that I collected doing my home program. You have seen the video I took of an ABA tutor teaching my daughter to imitate and then speak for the first time;
What do you want to do with them?

They are not coping in the "bits of this and that" setting of teacch/eclectic/special school setting. My son is still self injurious after 6 years, and my daughter is now medicated for her tantrums and inability to cope with any change. Everybody has tried their hardest in that setting; I don't doubt it; but they are not sufficiently resourced to cope with such high needs.
I suspect, you want to write them off. You want to go back to the good old bad old days when the institutions took over and nobody, not even the parents really understood what had become of those kids.

I won't stand for it. I believe in my kids. I will keep fighting for them.

Now, over to Adrienne Murphy in today's Irish Times:

State's failure to stand by autism families disturbing and shameful
Parents of children with autism are at war with the Department of Education. Adrienne Murphy explains why getting the right tuition is so crucial
As the a mother of a four-year-old boy with autism and a journalist who has been researching this issue for several years, my analysis is that the Department of Education is spinning inaccuracies in the autism debate.
The department claims that a combination of mainstream schooling and their "eclectic autism units" are enough to provide appropriate education for all children with autism. Parents fighting to secure the teaching method known as Applied Behavioural Analysis (ABA) for their children are portrayed as petulant whingers, unreasonable troublemakers demanding a Rolls Royce education for their kids.

What the department is failing to acknowledge is that autism is a spectrum disorder. Although many of the children on the mild "high-functioning" end of the spectrum do not require ABA, study after international study show that children on the moderate to severe end of the spectrum most definitely do need the intensive, scientifically-driven, evidence-based, individualised one-to-one intervention that ABA provides. Without it, their chances of leading anything like a normal life are severely diminished.
Autism is a perplexing, complex, bizarre and often hidden away neurological/psychological disorder. It's easy for the lay public to be led astray on the issue of what we need to do to help.
To get an idea of what it's like to have moderate to severe autism, imagine this: You have been dropped into the Tokyo underground system. By nature you are claustrophobic, easily over-stimulated and profoundly terrified of crowds. Many sights and sounds that "normal" people can handle are experienced as unbearably painful by you.
Ten years later, you still haven't found a way out of the Tokyo underground. You still can't speak or understand the language. You have made no friends. You can't even point to show you need food or water.
Imagine how frightened, confused, isolated and frustrated you would feel. Imagine how out of control your behaviour would have become. The authorities would most likely have restrained, sedated and institutionalised you by now.
This is the kind of fate that awaits children with moderate to severe autism if they do not get effective early help.

Children with autism are "locked in their own worlds". Many have profound problems with communication and social relations. They are unable to comprehend the world or the people in it. Many can't speak or understand language, make eyecontact, point or share joint attention with another person. Many can't respond to their own names.
Moderate to severe autism stops children from learning and developing. What is instinctive in typical children needs to be consciously taught to many autistic children. They are unable to learn from a typical environment. They don't know how to imitate. They have no urge to interact with others. They don't know how to play.
Unless they are specifically taught how to learn and how to communicate, these disabled children become increasingly isolated, confused and frightened. This leads to difficult behaviours. Children "disintegrate" before their family's eyes. Normal toilet-training has no effect. Destructiveness, screaming and extreme tantrum-throwing become commonplace. Through frustration and confusion, many children with autism start to injure themselves - repeatedly banging their heads or biting their arms and hands.
These distressing symptoms become more engrained as the child gets older. They have a heartbreaking impact on families. They can result in children being sedated and put into residential care as young as six years old.
Clearly, our children with autism need to receive a whole extra layer of specialised education and behavioural change before they can hope to start their learning their ABCs. I pray that some day my four-year-old autistic son, Caoimh, will be able to join his older brother in the local national school. But last month we had to turn down the place reserved for him for next September. Caoimh's autism has caused such a severe delay in his development that sending him to a mainstream school at this stage is unthinkable. It would be like sending an 18-month-old toddler to school.

So how would Caoimh fare in the "eclectic autism units", the only other option that the Department of Education is willing to offer autistic kids subsequent to the Ó Cuanacháin ruling, in which parents Yvonne and Cian Ó Cuanacháin failed to get the State to pay for their son Seán's ABA education?
The Government's autism units comprise six children to one teacher. In the eyes of parents and autism experts, the teachers heading up these units are insufficiently trained and experienced in the education of moderately to severely autistic children.
If Caoimh were in a classroom with one teacher and five other children on the moderate to severe end of the spectrum, the following chaos could well occur in a typical five-minute period:
The teacher is encouraging a four-year-old boy and girl to say rudimentary words like "biscuit" or "open". The other four children in the class - all strong boys - are unable to listen: their autism makes it impossible to receive instruction unless it is delivered one-to-one. Nor can they occupy themselves by playing with the toys in the room, because they haven't been taught how to play.
Immersed in his own world, one boy spins round and round in circles; another runs about disruptively, making strange noises and flapping his hands; another goes into meltdown because he is desperately thirsty and hasn't been taught how to communicate his need for a drink.
A large boy of six manages to remove his protective headgear. He starts screaming and banging his head hard against the wall. It requires the teacher's full attention to try to stop him. The girl and boy who had been attempting to learn words drift away, crying in distress at the sound of the headbanging boy. The spinning five-year-old (who, like other kids in the class, is not yet toilet-trained) takes off his clothes and defecates on floor. The child flapping his arms is fascinated by gooey textures. He scoops up the faeces and smears it on the walls.

People with a first-hand knowledge of autism know that the damage-limitation "babysitting" scenario I've just described is neither sensationalist nor exaggerated. Even with a special needs assistant present in this "autism unit" classroom, how much could the children possibly learn? What data-based evidence could the teacher show to prove that the children were acquiring skills in awareness, concentration, imitation, communication and compliance, and achieving life skills like toileting, feeding, dressing and washing? How could the teacher hope to decrease the children's self-injurious and other challenging behaviours without the thorough knowledge of the science of behaviour change that ABA provides?
This is the essential difference between an expert one-to-one ABA programme and the "eclectic" six-to-one model. ABA provides a teaching method based on continuous monitoring, charting, analysis and subsequent adjustment to each child's individualised educational programme. It provides hard scientific evidence of progress, where the eclectic model does not.
The Department of Education has tried to get around this by saying that the the eclectic model contains elements of ABA. For children on the severe end of autism, this is like offering someone falling through the sky a small portion of a parachute with which to try to land.
Last September - mercifully - Caoimh's name came up on the waiting list for one of the 12 existing State-funded ABA schools. For two years prior to that, Caoimh's dad and I had struggled and fought and fundraised for ABA intervention for our son, first in our home and then in an ABA school set up by other desperate parents, called Achieve ABA in Donaghmede, north Dublin.

While we still experience days of exhaustion and despair - usually caused by Caoimh's tantrumming behaviour in public and our fear that he may never learn to talk - we are convinced that ABA is a life-saver for our child and for our family.
When Caoimh was two, he was so withdrawn he was like a zombie. We could barely take him out of the house because his behaviour was so extreme. But with two years' ABA under his belt, he is bright and alert and tuned into his surroundings. He's exceptionally loving and affectionate. He smiles directly into our eyes. He partakes in family life and outings, and enjoys the presence of other children, though he doesn't yet play interactively. At his ABA school - which he loves attending - he's trying really hard to learn to talk, and is communicating brilliantly using a combination of eye-contact, indication, word-approximations, sign language and many small removable pictures that he can hand to us from his Pecs (picture exchange communication) book. He is toilet-trained. And since Caoimh was taught through ABA how to hold hands and "walk this way", we can at last walk down a street without fear of him bolting under a car.
The Department of Education is currently fighting with the parents of 150 children - Seán Ó Cuanacháin is one - who are trying to add a further 12 ABA schools to the 12 "pilot" schools already being funded by the State. Their autistic children have been assessed by independent educational psychologists as requiring ABA. Some of the ABA schools set up by these parents have been operating for several years - yet the department continues to reject their applications for funding. Parents are having to raise enormous amounts of money (it costs about €250,000 per year to cater for six children), adding massively to the stress and strain that their families are already under.

Meanwhile, more and more of the parents using the Department of Education's woefully inadequate "home tuition" allowance to provide ABA education for their children at home, or pooling it to fund schools, are having this grant taken away from them. Once that happens, many parents can no longer afford ABA, and have no choice but to send their children to the department's inferior "autism units". The whole atmosphere is one of harassment and coercion.
From my perspective, the shocking and disgusting treatment of the Ó Cuanacháin family - who now risk losing their home to pay for court costs - amounts to systematic State persecution of the most alarming and reprehensible kind. What should have been an open-and-shut case about one particular boy was turned by the Government into a drawn-out test case with terrible direct consequences for at least 150 other families whose children have the kind of autism that requires ABA. It sets a terrible precedent for families coping with autism in the future. Rolling back on previous landmark special needs cases, the Department of Education can now officially ignore professional independent assessment of all "special" children's needs, offering instead what it deems as "appropriate" education.
Mental torture and severe financial punishment now threaten parents who try to fight for their children's rights to ABA education through the courts.
The message coming out loud and clear is this: If you dare fight for justice for your autistic child, you will be viciously hounded, to the point where you and your family may be wrested of your possessions and made outcast and homeless.

By refusing to pay for ABA for the children who need it, the State is inflicting extreme suffering and financial deprivation upon hundreds of families already going through the pain, grief and stress of trying to cope with autism.
And in the short-sighted process, the State is creating a whole new generation of autistic people destined to become dependent on the taxpayer for the rest of their lives, because they are being denied the one intervention that would maximise their potential as independent human beings.
It is dangerous, disturbing, heartless and insane.
© 2008 The Irish Times

This story is universal.
There are parents fighting for evidence based therapy for their kids in every english speaking country. There are some pockets of the world where it is paid for, like Carlow and Canada, New York State, and Kill, County Kildare. But not in Sydney, or Sussex or Newcastle Co. Wicklow, (if you are over the age of five)
There and everywhere else they have beg, borrow, deny themselves basic luxuries and sell whatever they have to pay for it. But once they have seen what is possible, they do not give up on it. They risk all, but they know they stand to gain everything; having their children learn.


For Yvonne, Cian And Sean.