Attention please!

For some parents the beginning of the scholastic year may mean a break from their children. But for the parents of children diagnosed with Attention Deficit/Hyperactivity Disorder, or AD/HD, it's often the beginning of another stressful term. Claudia Calleja learns how, for such children and their parents, school is full of obstacles... that can be overcome with the right help.

Come October, parents of children who suffer from AD/HD prepare to start a routine of repetition, revision and reminders in an attempt to help a child, who just cannot sit still, to concentrate and focus.

Sarah and Becky* are two mothers whose children are diagnosed with the disorder and, for them, school brings with it a struggle to ensure that their sons maintain that much dreaded, yet indispensable, routine.

Children with AD/HD find it very difficult to concentrate and things become boring very quickly. For them, doing the normal everyday things is a big deal and they have to be supported continuously until they reach a level of maturity that allows them to go off on their own, the two mothers agreed.

"The challenge is to convince the normal everyday person, including sceptical teachers, that it is not something these children want to do but something they can't help doing. So, at the end of the day, it's: 'Please help these children, and help the people who want to help them'. Everybody needs support," Becky said.

Unfortunately, in Malta, once the child has been diagnosed there is no one to tell parents what to do. There is a need for professional back-up to help parents learn to cope with this disorder and pass on information to worried parents regularly.

AD/HD Family Support Group Chairman Tessa Anastasi also recognised that there is a problem with the lack of parenting skills tailored for coping with children who suffer from AD/HD.

"There is a lack of home support and a lack of psychological help for the children, their siblings and all the family. Appogg offers help to those children who are referred to it. So basically it's a crisis management situation in which only a child in a dysfunctional family, who is then referred to a social worker, gets the help needed," Ms Anastasi said.

Sarah and Becky have been members of the support group for a few years and recognise that, although the group provides a space where parents can learn from each other's experience, there is a lack of professional back-up especially when one takes into account that AD/HD affects one child in every class in Malta on average.

"Sometimes I go to a meeting during which nothing new to me is said, but I feel so good when I leave the meeting, because I know that others are going through what I am going through and some may have it worse. That's where the support comes in," Sarah said.

The two mothers recalled the helplessness of learning that their child suffered from AD/HD.

Sarah, whose son is 12 years old, recalled how despite the individual attention she gave her son, an only child, he kept getting bad results at school. This child was then moved to another school were the disorder was immediately picked up. "He was about seven at the time. I went to a doctor who told me to contact Tessa from the support group and being a very panicked mother I did just that.

"Now things are better. He's older and aware that he has AD/HD. I've always believed in honesty so long as it's age appropriate. When he was younger I told him that his mind works really fast so he cannot do exactly what it tells him. As he's growing older the behavioural problems have decreased," she said.

Whereas Sarah, having one son, could not detect the disorder as she had no other children to compare him to, Becky realised that there was something different in the way her two sons behaved.

"My son was always a sweet child and school was very tolerant of his actions. This may have delayed the diagnosis. I realised that he was everywhere during lessons and, as he moved to secondary school, the days got longer and the struggle to concentrate became harder.

"I recalled an article on the subject I had read some years back and started looking up information about AD/HD and that was when I traced the support group."

Both parents know how important it is that their sons are handled in a professional manner which takes the disorder into account, while they are at school. Schools are the most important thing for these children who spend six to seven hours a day away from the watchful eye their parents.

"When a teacher does not accept that the child has a disability it makes the parent even more desperate. If teachers adopt that attitude it may take longer to put the child back on track. Don't forget that they spend from the age of two till when they are 16, the formative years of their lives, in school," Becky said.

Ms Anastasi emphasised that it is extremely important that teachers are trained to know how to behave with such children.

"If handled badly, children with AD/HD will develop other psychiatric disorders, conduct disorder, oppositional defiant disorder, depression, low self-esteem and the outlook in adolescence and adulthood will be grim," she said.

She explained that although the awareness of AD/HD was increasing, there is still room for improvement. Sarah and Becky agreed.

One of the problems with schools is the administration of medication to those children who need to take it during school hours, the two mothers said.

Under Maltese law teachers are not covered by an insurance and therefore, strictly speaking, they are not allowed to administer medication. If the school has a nurse or a doctor it's fine but not all schools do and a solution needs to be found.

Another problem, faced by children with AD/HD, is with the exam concession board when it comes to 'O' Levels.

Currently a 10-minute break every hour is allowed and the time spent outside the examination room is added on to the two-hour exam time. Some children are allowed to sit for exams in a distraction-free room.

But, the mothers argued, sometimes such children are slow writers and might require some extra time, which is not conceded to them. They stressed that the board ought to allow concessions according to the individual needs of the child as not all those who suffer from AD/HD have the same needs.

"This would not be giving the children an unfair advantage but it would mean putting them on the same platform as others," the mothers added.

*Names have been changed to protect identities.

A real disorder

Some people stubbornly insist that AD/HD is not a real disorder, but is something made up by the psychiatric community and that the children diagnosed with the condition are merely troublemakers.

Apart from being incorrect, this myopic approach can be very damaging to a child who suffers from the disorder.

Psychiatrist Joseph Cassar explains that AD/HD is a neurobiology-based disorder estimated to affect between three and 10 per cent of children and adults and is characterised by problems with attention, impulsivity and overactivity.

Although its exact cause is still shrouded in uncertainly, scientific evidence suggests that the disorder is genetically transmitted. What is known, Dr Cassar said, is that it is a neurobehavioral disorder, which means that its pathophysiology is related to chemicals in the brain.

Distinctions are made between three types of AD/HD which are referred to as the inattentive type, the hyperactive type and the combination type.

Children who suffer from the inattentive type have little or no trouble sitting still or inhibiting behaviour, but may be predominantly inattentive whereas those who suffer from the hyperactive type may be able to pay attention to a task but lose focus because they may be predominantly hyperactive-impulsive and, thus, have trouble controlling impulse and activity. Children diagnosed with the combination type have significant symptoms of both types.

Children who do not show the hyperactivity component of AD/HD tend to be overly passive, lethargic, prone to daydreaming and some-times anxious. As children with such behaviour frequently go unnoticed, in comparison with other more disruptive behaviours, it is important that schools are vigilant to ensure that their needs are recognised and catered for.

Clearly, the first step in dealing with AD/HD is getting a diagnosis.

Dr Cassar explained that the first people who usually diagnose AD/HD in children would be the teachers; parents, very often, feel that the children do not have problems.

"If, in my clinical opinion, the child does suffer from AD/HD then I give them a rating scale which has a teacher and parent component. You can't have AD/HD at school but not at home so, if the child has the disorder, the rating scale ought to tally," he said.

Diagnosis is mainly based on symptoms and rating scales since medical tests are still under research and the existing ones are very expensive.

Once a child is diagnosed with AD/HD most parents instinctively surf the net to look up information on the subject. Dr Cassar emphasized the importance of being informed but cautioned parents to only go for official sites.

One such site is the Chadd (Children and Adults with Attention-Deficit/Hyperactivity Disorder) www.chadd.org - which is the site of a US-based non-profit organisation serving individuals with AD/HD and their families.

Chadd explains that: "Getting appropriate treatment for AD/HD is very important as there may be very serious negative consequences for persons with AD/HD who do not receive adequate treatment. These consequences can include low self-esteem, social and academic failure, substance abuse, and a possible increase in the risk of antisocial and criminal behaviour."

Dr Cassar explained that treatment is divided into three major components: the school component, the parent component and medication. Treatment starts by addressing the school and parents by providing tips on how to deal with such children through, for example, behavioural and educational intervention.

Focusing on the school component, he said that there are some amazing teachers who can establish an immensely beneficial relationship with a child, not only by understanding the child but also by giving him/her special attention.

Unfortunately, however, there is still that odd teacher who does not recognise AD/HD as a real disorder and may still feel that it is something invented. Such teachers perceive children who suffer from AD/HD as disruptive troublemakers and use a punitive technique.

"When you do that you are not recognising a condition. This is like if, for example, a child who suffers from diabetes eats a sweet in class - it could be life saving. So you should not punish without first asking why."

School success may require a range of interventions. Many children with AD/HD can be taught in the regular classroom with minor adjustments to the environment. Some children will require additional assistance using special educational services such as a facilitator.

"What we do need to understand is that children have emotions and with AD/HD a lot of the kids have a very low self-esteem. They might not understand why there is an adult sitting with them in class and this may make them feel different. Therefore we must be careful and understand the child and not impose a facilitator when one is not really needed."

Dr Cassar stressed that, if a child with AD/HD has the right help at school through a teacher, facilitator or medication, the child can follow the normal curriculum so long as s/he does not have a learning difficulty which is not related to AD/HD.

"These children are normal children and their IQ variance is like everyone else's."

Asked if a child can ever overcome the disorder Dr Cassar replied "You cannot overcome an actual neurochemical condition. What could happen is that the child learns how to live with it. A child could learn that, if a certain episode gets him to lose friends, s/he can modulate his/her behaviour,"

The bottom line, he said, is that you can learn to live with AD/HD.

Support and guidance

The AD/HD Family Support Group was set up some nine years ago by a group of parents who were frustrated at the lack of knowledge and information in Malta.

Its aims are to disseminate information among professionals and parents, provide moral support to parents as well as advice and the latest research updates, to organise seminars and lobby to create changes in policy. It provides all the above at no cost to parents who are already suffering enough.

Earlier on this year the support group issued a booklet entitled AD/HD: Information and Guidelines for Schools, which was distributed to all schools, as the greatest concern parents had was the lack of knowledge and know-how in schools. Now teachers have no reason to plead ignorance.

"Schools have a duty to identify pupils who are experiencing difficulties in learning and behaviour and to attempt to help children with such difficulties, whatever the cause... The needs of AD/HD pupils are best met with good teaching and classroom management techniques that have relevance to all pupils and teachers ought to adapt the learning environment," the guidelines state.

The group has a committee who organise meetings held once a month in the evening for parents. There is also a resource library for the use of parents, professionals, sibblings and sufferers.

The group functions on a yearly membership and random donations. The membership usually hovers at around 60 but there is a 20 to 30 per cent turnover in a year.  

The support group offices are located at Malta Resource Centre, 33, Cannon Road, Hamrun. Anyone wishing to contact the group may call 2123 3749 (answering machine) or e-mail nastas@waldonet.net.mt. 

What parents can do

¤ Parents of children diagnosed with AD/HD can help create a school and home environment that improves the child's chances of success. The Chadd website (www.chadd.org) offers guidelines to parents to ensure their child's success at school.

¤ Become an effective case manager. Keep a record of all information about the child such as copies of relevant documents and contact details.

¤ Take an active role in forming a team that undertands AD/HD. A thorough understanding of your child's strengths and weaknesses will help develop an appropriate and effective programme that takes the disorder into account.

¤ Learn all you can about AD/HD and your child's educational rights. Knowledge is power.

¤ Become your child's best advocate as you may have to represent or protect your child's best interest in a school situation, both academic and behavioural.