Meet the Jacksons
Chatting with Jacqui Jackson about her seven children is a surprisingly cheerful experience, full of funny stories and proud, parental laughter.
The things they do and say invariably raise a smile, and when she thinks of the chaos they sometimes leave in their wake, it is usually with the good humour of hindsight. Most of all, she laughs about herself, about her inadequacies and failures and occasional naivety. There is nothing hard-bitten about her. Certainly you would not mistake this Blackpool mum for a guerrilla fighter.
But listen to her vocabulary and the words suggest a different reality.
"Battle" comes up regularly, as does "struggle", invariably preceded by "lengthy".
Most common of all is the word "fight". It crops up repeatedly as she describes her children's careers, because it seems that every inch of progress has involved their mother in a fight. Yet she is able to laugh at that as well, if at times there is exhaustion behind the laughter. This is how it often is with parents whose children have disabilities. And if Jacqui Jackson seems more a more tragi-comic figure than most, then it's probably because four of her seven children - the four boys - have developmental difficulties.
Matthew, the oldest at 19, recently finished college, having learned to cope with dyspraxia and dyslexia. Then there's Luke, an appealing but obsessive 15-year-old whose struggle with the scary combination of adolescence and Asperger syndrome inspired him to write a book for fellow young sufferers last year. Freaks, Geeks and Asperger Syndrome, announced today as the winner of the National Association of Special Educational Needs TES Children's Book Award (see TES Teacher, page 15), is Luke's second book, published when he was 13; he had already written a guide to tackling his condition through diet.
Joe, a 10-year-old livewire, has severe attention deficit hyperactivity disorder (ADHD), and would happily head for secondary school next September with a dummy in his mouth if his mother took her eye off him for a second.
And last, but determined not to be least, is Ben, who has at last emerged from the silent, lower end of the autistic spectrum to become a kicking, flailing six-year-old. His statement describes his "flexi-schooling": half the week he attends a state special school for children with profound learning difficulties, where he has speech, language and physiotherapy. For the rest he is taught at home by Jacqui.
With such a challenging bunch of males to bring up, to say nothing of Rachel, Sarah and Anna (17, 16 and 13 respectively), it's a wonder that Jacqui, divorced and a single parent since Ben was a toddler (the children's father plays no part in their lives), has any time for reflection. But she has not only reflected on her chaotic life but has followed her son into print, crafting the chaos into a handbook for other parents and carers.
Jacqui's book is called Multicoloured Mayhem, a reference to the autistic spectrum and the many shades of development and disability with which she has become so familiar over the past two decades. And just as her conversation is laced with humour, so her book is positive and uplifting.
But ask her to expand on her occasional references to stubborn professionals and blinkered bureaucrats and her mood hardens. For the reality of bringing up four children with disabilities resembles a kind of warfare: a succession of battles fought, by and large, in the field of education.
As the saga of her children's schooling has unfolded, a pattern has emerged, a pattern which Jacqui believes will be familiar to countless parents whose children have serious special needs. First comes the reluctance of professionals to make a clear diagnosis, then comes the battle for appropriate placing, extra therapies and adequate support at school.
Early diagnosis, she points out, allows parents and children to access the support and services they desperately need. Those children whose disability is picked up in the early years - "a case of making yourself heard" - also fare better when they start school.
"If the child is picked up later, within the education system, or if you've picked them up yourself and haven't got anyone to take any notice, that's where your trouble starts," she says. "The problem is that nobody liaises with anybody. You're wanting a medical diagnosis and it's the education department that has got the problem, and ne'er the twain shall meet."
Reluctance by professionals to acknowledge that a child has a disability such as autism or ADHD is a recurring theme in Jacqui Jackson's story, and she finds it hard not to conclude that this reluctance is driven, in part at least, by the knowledge that resources to deal with major disabilities are already overstretched.
Until a child's bizarre behaviour at home spills over into the school day, she says, schools can make parents feel they are being paranoid or overprotective. In the introduction to her book, she makes a heartfelt plea to professionals. "You can help our children most," she writes, "by listening to us as parents, by taking us seriously, and by accepting that we know our children and what is best for them."
Jacqui Jackson is certainly worth listening to - she is the parents'
representative on Blackpool local authority's autism working party, which is drawing up policies for schools based on the National Autistic Society's guidelines. And she's a good listener too, working as a volunteer on a telephone helpline for other parents of autistic children.
In between - when she isn't preparing gluten- and casein-free meals for Luke, Joe and Ben - she is researching children's sensory issues for a doctorate at Coventry University (she recently gained a first-class degree in social science from the Open University).
The Jacksons have also been approached to take part in scientific studies aimed at identifiying hereditary factors in autism and other developmental disorders. "I speak to hundreds of families on the internet, and the bulk of those with a number of children have more than one on the autistic spectrum," says Jacqui. "I could name 30 families off the top of my head who have one severely autistic child and one with Asperger syndrome, or one with dyslexia and one with autism. In fact, I can't think of a family with just one, apart from those with a single child."
While she believes that many professionals remain shockingly ignorant about developmental disabilities such as autism and ADHD, she is generous in her praise for those who know and care. Blackpool LEA has a team of teachers who liaise with schools and families of children with autistic spectrum disorders; they are a tower of strength and "know their stuff", she says.
Mick Connelly, who heads the team, worked for 20 years at Britain's first special school for children with autism (Sybil Elgar in Southall, west London), latterly as its head. In 1995, Mr Connelly says, there were 19 children diagnosed with autism in Blackpool and the surrounding areas.
Today, he has 161 on his books from the town alone.
While this increase is mirrored nationally and internationally, Blackpool has a greater prevalance of diagnosed autism than many other LEAs, a fact that Mr Connelly believes is partly due to the effectiveness of the "complex learning difficulties" team the authority set up in the mid-1990s.
The team brings together paediatricians, educational psychologists, clinical psychologists and special educational needs officers, plus Mr Connelly.
"As soon as there is any concern about a child's development from any of those different services, that child's name is taken to a monthly meeting and from there we will work out a plan," says Mr Connelly. "We certainly don't look at the resources and then make our decisions; we make our decisions around an individual child. And the parents must be involved. We have a saying in our team that the parents live in the real world and we don't." He knows of only two or three similar services like this elsewhere in the country.
Mick Connelly and his colleagues in social services are currently considering how Blackpool might implement strategies outlined in the Children's Green Paper, which sets out a vision of seamless services for children with disabilities. "I fully support the Green Paper, and that's the way we wish to move forward, but there's a lot of unpicking to be done before we get there," he says.
The key to progress, Jacqui Jackson insists, lies in straight talking and openness on the part of all the agencies involved. Of the teachers she has met in her sons' eventful school careers, she has most respect for those who seem able to empathise, "regardless of whether they have been on a course or not". She remembers a conversation with one woman who taught Joe.
"She said to me, 'I just can't get through to him. Whatever I do it goes straight over his head, and I know there's so much more in there, but I'm not reaching it'."
"I really admired her for that. Rather than telling me that the boy needed more discipline or that everything would be all right if only I would read to him every night, she seemed to be saying, 'Come on then, give us a clue'. And I thought, 'You and me both, we're in exactly the same position."
Multicoloured Mayhem: parenting the many shades of adolescence, autism, Asperger syndrome and ADHD by Jacqui Jackson andFreaks, Geeks amp; Asperger Syndrome: a user guide to adolescence and A User Guide to the Gluten-FreeCasein-Free Diet for Autism, Asperger Syndrome and ADHD, both by Luke Jackson, are all published by Jessica Kingsley at pound;12.95.National Autistic Society: www.nas.org.uk. NAS helpline: 0870 600 8585. Luke Jackson has his own website at www.lukejackson.info