Fingal ADD- ADHD 06_rev3

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Fingal ADD- ADHD 06_rev3 Powered By Docstoc
					              Children with
          ADD/ADHD
North Fingal ADD/ADHD Parents’ Support Group
A booklet to assist parents of children with ADD/ADHD

Our aim with this booklet is to take away the fear and uncertainty that parents
feel when they suspect that their child may have ADD/ADHD or when the child
is diagnosed as having such. We have tried to answer the questions that
parents would most often ask.
We hope that this information will be easy to understand and that it will
answer the questions you might have.
We have done our utmost to ensure that all the information in this booklet is
correct and up to date.
We would like to thank the National Lottery Grant Funding 2004 and Comhairle
for making it possible for us to produce this booklet.
We would also like to acknowledge the continued support of Co-operation
Fingal, (North Fingal Community Partnership) to the North Fingal ADD/ADHD
Parents’ Support Group.
Special thanks must go to Sarah Musharakh from Co-operation Fingal for all the
work and enthusiasm they have invested in this project.
North Fingal ADD/ADHD Parents’ Support Group.


CONTENTS
1. DEFINITIONS                                               2
2. WORKING YOUR WAY THROUGH A DIAGNOSIS                      4
3. OPTIONS FOR THE TREATMENT OF ADD/ADHD                     7
4. RIGHTS AND ENTITLEMENTS                                  11
5. EDUCATION                                                15
6. RESEARCH AND DEVELOPMENT                                 20
7. ADDITIONAL SUPPORT SERVICES                              24
8. NOW, WHAT CAN I DO?                                      25
9. TIPS FROM PARENTS                                        27
10. SIDE EFFECT RATINGS SCALE                               28
11. SUPPORT GROUPS AND CONTACTS                             29




                                                                            1
1. DEFINITIONS
What is ADD/ADHD?
ADD/ADHD stands for: Attention Deficit Disorder (ADD) and Attention Deficit
Hyper kinetic Disorder (ADHD).
ADD/ADHD is a neurological-based medical condition and is not caused by poor
parenting and diet.
ADD/ADHD is a genetic disorder that can co-exist to a greater or lesser degree,
with any one or other disorders (e.g. dyslexia, autism, learning disorder,
dyspraxia, conduct disorder, oppositional defiance disorder).
ADD/ADHD would seem to be more prevalent among boys than girls. Girls would
more often be diagnosed as having ADD. There is a belief though that many
young people with ADD often go undiagnosed because their attention deficit
does not present itself as outwardly as the hyperactivity/impulsivity that exists
in ADHD. Often these young people are the ones that sit at the back of the
class without disrupting it, but unable to participate fully as they have an
attention deficit.
For the purpose of this booklet we will refer to the child as him, his, etc.


What are the signs and symptoms of ADD/ADHD?
1. INATTENTION (ADD)
Symptoms of Inattention:
• Fails to give close attention to details or makes careless mistakes.
• Has difficulty sustaining attention in tasks or play.
• Does not seem to listen when spoken to directly.
• Does not follow through on directions and fails to finish schoolwork, chores.
• Has difficulty organising tasks or activities.
• Avoids or dislikes tasks that require sustained mental attention, such as
  schoolwork or homework.
• Loses things necessary for tasks or activities (e.g., pencils, assignments,
  homework copy).
• Is easily distracted.
• Is often forgetful in daily activities.




   2
Children with ADD CAN pay attention, they just don’t know HOW to pay attention.
One suggestion is when giving instructions to children, simplify the instruction
and break it down so that they can follow the instructions step by step.
Sam Goldstein, Ph.D. said “Children with ADD aren’t clue-less… they are cue-less!”
In other words, they know what they should do, brush their teeth for example, but
they can’t pick up on the cue to brush their teeth. They will go to the bathroom
but forget what they went there to do. The cue to brush their teeth didn’t kick in.



2. HYPERACTIVITY/IMPULSIVITY (ADHD)
Symptoms of hyperactivity:
These symptoms are generally more common in boys.
• Fidgets with hands or feet or squirms in seat.
• Leaves seat in classroom or in other situations where remaining seated is
  expected.
• Runs and climbs excessively when it is inappropriate.
• Is always on the go or acts as if “driven by a motor”. Often talks excessively.

Symptoms of Impulsivity:
• Blurts out answers before questions have been completed.
• Has difficulty waiting his turn.
• Interrupts or intrudes on others (e.g., butts into conversations or games).

The severity of the condition can vary i.e. mild, moderate or severe.
As mentioned above, ADHD can co-exist to a greater or lesser degree, with any
one or other disorders (e.g. dyslexia, autism, learning disorder, dyspraxia,
conduct disorder, oppositional defiance disorder).


How common is ADD/ADHD in Ireland?
It is estimated that 3.5% of the population of Ireland suffer from ADD/ADHD.
The preliminary total for the population enumerated on census night 28 April 2002
was 3,917,336. Therefore 3.5% of our population (Barkley 1990) = 137,106.76.




                                                                              3
2. WORKING YOUR WAY THROUGH A DIAGNOSES

How do I know if my child has ADD/ADHD?
Unfortunately, ADD/ADHD cannot be detected by means of a blood test or x-
ray. All children will be inattentive/impulsive or hyperactive at some time.
They’re children! If however your child’s behaviour creates a real problem in at
least two areas such as school, home or in social settings, and if your child has
been behaving like this for 6 months or more, then perhaps you need to look
into the possibility of your child having ADD/ADHD. Likewise ADD/ADHD is said
to exist from the time of birth, so it may be that your child has always been
displaying these symptoms.


I feel my child is displaying these symptoms. What do I do now?
If your child is not yet in school, talk to your GP about your concerns. It might
be useful to keep a diary of your child’s behaviour. Note down the things that
concern you and how often your child would behave in this manner. Also, make
a note of whether he is just like this at home or if this type of behaviour
persists in other settings also, such as in the supermarket or when you are
visiting friends.
If your GP feels that these symptoms need further investigation, he/she will
most likely refer you to the Mater Child and Adolescent Mental Health Service in
Swords.
If your child is in school, talk to his teachers about your concerns. You will be
able to help your child a lot more if you and the teacher can work together. If
you feel that your concerns are not being taken seriously or being
misunderstood, speak to the school Principle or again, talk to your GP.
If your child’s teacher agrees there is a problem, he/she will consult with you
and if you are in agreement, your child’s school will contact NEPS. NEPS stands
for the National Educational Psychological Service Agency. Your child will be
referred to NEPS for an educational assessment. An Educational Psychologist
will carry out this assessment. Nothing will be done without your consent and
you will be kept informed of what’s happening throughout the procedure. The
child may then be referred to the Mater Child and Adolescent Mental Health
Service.




   4
Who will I see the first time I attend the
Mater Child and Adolescent Mental Health Service?
You may see the following professionals:
• Social Worker
• Speech Therapist
• Psychologist
• Senior Social Worker
• Senior Registrar/Psychiatrist
These different professionals will work together as a team, discussing your
child’s progress and deciding, as a team, how best to help your child.


At your first visit to the Mater Child and Adolescent Mental Health Service in
Swords you may see a Social Worker and a child Psychiatrist. Please don’t be
scared or intimidated by these titles. These people are there to ensure that
your child gets the proper care and attention and advice he needs. Don’t be
afraid to ask questions. If you don’t understand something… ASK.
If your child is under 5 years he will most likely see a Psychologist and/or
Speech and Language Therapist.


What will happen at this first meeting?
You will be asked questions about your child’s home life, friends, and past
illnesses. This is to enable the people who are treating your child to make a
holistic assessment of your child. It’s important to get a picture of the child’s
developmental milestones.
The services available will be explained to you. You will be asked who first
referred you. How have you dealt with the problem so far? Do other family
members display the same symptoms? How have you coped with this and other
problems in the past? How do you normally resolve issues such as depression
etc.? Who and what helped? What, if any, other stress factors are there in the
family i.e. separation, money problems etc? How is your child with siblings,
peer group?




                                                                               5
Some of the above questions will be to establish where your strengths lie in
dealing and coping with problems when they arise. We all have strengths we
can build on.
After all that, you will be on the way to learning how best to help your child!
It is important to take your child for treatment. Without early identification
and proper treatment ADD/ ADHD can have serious consequences including
school failure and drop out, depression, conduct disorders and failed
relationships.


Why does it take so long to have my child assessed and diagnosed?
As we mentioned above, ADD/ADHD cannot be diagnosed through a blood test
or similar. A psychologist will have to eliminate other possibilities before he/
she will diagnose your child as having ADD/ADHD. You can appreciate that this
cannot be done in an hour or even a week. Unfortunately, these things do take
time. This could take up to a year.


I have been given a questionnaire to fill in. My child’s teacher has
also been given this questionnaire. What is this and what is it for?
This is called a Conner’s report. It contains a list of questions and answers.
These answers are graded 0 - 3. This will help your child’s doctor to see a
consistency of behaviour both at home and at school. This report will also help
your doctor to ascertain the level of difficulties your child is faced with on a
daily basis. This report will also give a baseline on which to grade any future
improvements on.




   6
3. OPTIONS

I’ve been told my child needs medication. What is this
medication?
The most common type of medication prescribed for the treatment of the
symptoms of ADD/ ADHD is Ritalin and Concerta. These medicines are
stimulants. They are not sedatives. They do not slow down a child’s mind. If
successful, they will “enhance” an inattentive child’s natural abilities.
Ritalin LA*: Ritalin will be administered to your child twice a day. It is a
short acting drug. It has been reported that the medication starts to show
benefits between 15 - 30 minutes after it has been administered. It stops
being effective after 3 - 5 hours. (*LA stands for Long Acting)
Dexedrine: Dexedrine affects the neurotransmitter Norepinephrine primarily,
and secondarily Dopamine, which is significantly different than Ritalin, and
can produce very different results for patients. Dexedrine is only similar to
Ritalin in that the same type of side effects can occasionally be seen.
Dexedrine also appears to stay in the blood longer than Ritalin reducing the
frequency of the dose. (www.adders.org)
Concerta XL: In February 2003, doctors began prescribing Concerta, a once a
day capsule. Concerta is a reformulation of Ritalin. Whereas, the effects of a
single pill of Ritalin last a maximum of four hours, a single dose of Concerta
lasts more than 12 hours in the body. Referring to Concerta, Fiona McNicholas,
professor of child psychiatry at University College Dublin, said: “ The real
winners with Concerta are the children who don’t have to worry about their
medication for the whole day and can enjoy after-school sports and do their
homework, just like everyone else.” (The Sunday Times, Feb 2nd, 2003)
Straterra: What separates Strattera (atomoxetine) from the rest of the ADHD
medications pack is that Strattera is the first non-stimulant medication for
Attention Deficit Disorder. Strattera is an oral capsule prescribed in a once or
twice daily dose, which also eliminates the need for school children to
medicate during the school day. Straterra would also be prescribed for adults.
This drug is not yet licenced for use in Ireland.
Parents have reported that some children are fine on Ritalin, some are fine on
Concerta. Remember that your child is an individual. One parent may tell you
how great life is now that junior is taking Concerta or Ritalin. You may find that
one or the other doesn’t work for your child. Go with what’s best for YOUR child.
The decision on whether or not your child should be put on medication will be
made after your child’s team of professionals or your child’s key therapist meet
and discuss the case.




                                                                             7
Before your child is placed on medication he may need to have blood tests
done and also an EEG brain scan. This is to eliminate the possibility of other
conditions, apart from ADD/ADHD. These tests will be carried out either in
Temple Street Children’s Hospital or the Mater Hospital.
If you have concerns about putting your child on medication, go back to your
prescribing doctor with a list of questions. He/ she will appreciate your
interest in your child’s well being.
Feel free also to talk to your local pharmacist and ask about any side effects
to your child’s medication there may be.
Remember that taking medication relieves the symptoms of ADD/ADHD but
that’s only part of the picture. The feeling that your child gets when he knows
that you love, accept and appreciate him does not come in a pill.
It should be noted that some over the counter medicines should not be taken
while being treated with methylphenidate. These include decongestants such
as pseudoephedrine and phenylephrine, which are common ingredients in
cough and cold medicines and sedating antihistamines such as
chlorpheniramine and diphenhydramine, also included in cough and cold
medicines as well as some hay fever and allergy medicines.
The action of methylphenidate on the brain can be enhanced by these
medicines which, in the case of the decongestants, can lead to over-
stimulation and reduced effectiveness of the drug in ADHD, as well as a
potential raising of blood pressure and, in the case of sedating antihistamines,
a lowering of the seizure threshold in individuals subject to seizures.
Prescribing and dispensing of methylphenidate prescriptions is governed by the
Misuse of Drugs Regulations 1988 - 1993. These regulations outline the strict
requirements applying to the writing and dispensing of prescriptions for
methylphenidate.
Of relevance to parents of children taking methylphenidate medications are the
following:
1. A prescription cannot be dispensed before the date specified on it or later
   than fourteen days afterwards.
2. A doctor cannot write that the prescription is to be repeated for a period
   of time or on a number of occasions. The doctor, however, can request that
   the prescription be dispensed in instalments. In the case of instalments,
   the first instalment cannot be dispensed later than fourteen days from the
   date on the prescription and no instalment can be dispensed later than
   two months after that date.




   8
3. Doctors must write all details on a prescription in their own handwriting.
   The preparation of the drug, the strength of the drug, the dose to be
   taken, and in both words and figures, either the total quantity of the drug
   or preparation or the number of dosage units to be dispensed.
In the case of prescriptions for a total quantity of drug intended to be
dispensed by instalments, the doctor must specify the quantity, the number of
instalments and the intervals to be observed when dispensing the instalments.
Whether to medicate or not is a question that only you and your child can
answer. Get advice and make a well-informed decision.


What about Complimentary Approaches?
A growing number of people are trying complimentary medicine in all walks of
life. Some parents have experienced positive changes in their children by using
the following:

FISH OIL helps maintain eye and brain function which is important for anyone
in a learning environment. It contains essential fatty acids necessary for brain
function and may be beneficial for individuals with ADD or ADHD.
Again, you should discuss this with your doctor, remembering that every child
is an individual.

QUANTUM TOUCH is a gentle non invasive hands-on energy healing method
that has been described as a “SIGNIFICANT BREAKTHROUGH IN HANDS-ON
HEALING” in the Alternative Medicine Magazine USA. The Practitioner uses
breath and body awareness techniques to raise the vibration of their hands to a
very high frequency, the vibration of the person receiving the healing also
naturally rises up to match or entrain to that of the Practitioner, allowing
healing to take place on a very deep level, it allows the body to heal itself.
Quantum-Touch is highly effective with Scoliosis, Hernias, ADD/ADHD, Burns,
Migraine, Sciatica, Stress, Sinusitis, TMJ and much more…
For an appointment or to enquire about Quantum-Touch workshops please
contact
James Laverty on:
Phone:   042-9329082
Mobile: 087-9966151
E-mail: jaslaverty5@eircom.net
Web:     www.quantumtouch.com




                                                                           9
Bi-Aura Therapy (also known as Bio-Energy) is a non-invasive, totally holistic
energy healing method. It reactivates the body’s own capacity to heal.
Ailments that have responded favourably to this therapy include Stress,
Tension, Insomnia, Depression, Hypertension and many more. For further
details contact Berni Manning at (01) 837 3243, or visit the website at
www.bi-aura.com.

BEHAVIOUR MANAGEMENT TECHNIQUES
Mark Harrold formerly of St. Michaels’s House & Mark Mulrooney from St.
Michael’s House Psychology Department have put together an excellent booklet
entitled “Challenging Behaviour”. There are some great tips in there to help
you deal with your child. You can call Mark Mulrooney on 01 - 8840200 and he
would be only too glad to send you a copy of this booklet.
The Mater Child and Adolescent Mental Health Service in Swords occasionally
runs a Parent Plus Programme at different times throughout the year. This is
for any parent of a child between the ages of 4 to 10 and 11 to 16 years of
age.
The course is open to parents from all backgrounds. It is also open to carers,
grandparents and whoever else might be caring for children.
For more information contact the Mater Child and Adolescent Mental Health
Service, the Health Centre, Bridge Street, Swords. Telephone (01) 890 7151.
Always remember that what you say to your child will have a great influence
on him. Your child will have something in his life that he does really well.
Encourage your child to develop this talent or ability or interest. We all love a
pat on the back and to hear how well we’re doing!




   10
4. RIGHTS AND ENTITLEMENTS

What are my child’s rights?
Under the Education Welfare Legislation Act 2000, children must be educated
until the age of 16. If your child has been expelled or suspended from school,
ask for written confirmation stating the reasons for the school’s action. You
should then contact the Vocational Education Welfare Board at (01) 873 8626.
• Your child has the right to a full and detailed assessment of needs at the
  time of diagnosis.
• The right to an education geared to the potential and abilities of the
  person.
• The right to training and to meaningful work where appropriate.
• The right to be free from discrimination and from economic, sexual, or other
  forms of exploitation.
• The right of people with disabilities, their parents, guardians and siblings to
  participation and consultation in the formulation and implementation of all
  policies which affect the lives of people with a disability.
• The right of people with disabilities, their parents, guardians and siblings to
  elect their own representatives onto the boards of all service providers,
  including all statutory agencies, to ensure effective representation.
• The right of parents, guardians and siblings of people with a disability to
  counselling, support and respite care when needed, and to information and
  consultation about the needs of their child, irrespective of age.


What are my entitlements?
You MAY, at the discretion of your local Health Service Executive be entitled to
the following:

DOMICILIARY CARE ALLOWANCE
The allowance for the domiciliary care of severely physically or intellectually
disabled children is a monthly cash payment to the mother/father or guardian
in certain circumstances, of such a child between the age of 2 and 16 years.
The age limit may be extended from 16 to 18 years if the child is still




                                                                           11
attending school. Over 16 years of age, an individual may apply for a Disability
Allowance from the Department of Social, Community & Family Affairs,
Government Offices, Ballinalee Road, Longford. If the Disability Allowance is
granted, any further payments of the Domiciliary Care Allowance will cease.
Recipients of a Domiciliary Care Allowance may also be eligible for Carer’s
Allowance or Carer’s Benefit.

CARERS ALLOWANCE
Carers Allowance is a means tested payment for carers on low income, who live
with and look after people who need full time care and attention.
For information and forms, apply to your local Health Service Executive, or
contact Swords Information Centre. Tel: (01) 840 6877
Application forms are available from your local Health Service Executive.

CARER’S BENEFIT
To qualify: You must have at least 156 PRSI contributions paid (Class A, B, C,
D, E or H) and
(a) 39 contributions paid in the relevant tax year or
(b) 39 contributions paid in the 12 months immediately before the start of
    Carer’s Benefit or
(c) 26 contributions paid in the relevant tax year and 26 paid in the relevant
    tax year prior to that.
Conditions: You must leave employment temporarily to look after someone in
need of full-time care e.g. a person with a disability or a child for whom the
Domiciliary Care Allowance is being paid. You must have been employed for at
least 34 hours a fortnight before starting full-time caring duties. You may be
able to avail of Carer’s Leave which allows you to retain your employment rights
while you are caring and to return to your job or a similar job when you finish
caring.
It will be paid for up to 15 months and increases will be paid for child
dependants. If you are looking after more than one person an additional 50%
will be payable. The conditions about full-time care, living with the person
being cared for and taking on part time work are basically the same as the
conditions which apply to the Carer’s Allowance.




   12
Apply to:
Carer’s Benefit Section, Social Welfare Services Office, Government Buildings,
Ballinalee Road, Longford.
Tel: (043) 40087 or (01) 704 3000

LONG TERM ILLNESS BOOK
You may be eligible for free prescribed drugs and medicines under the Long
Term Illness Scheme.
Application forms are available at General Practitioner’s surgeries and at Health
Service Executive local offices. If you or your dependant is deemed eligible you
will be supplied with a Long Term Illness Book. This book lists the drugs and
medicines to which you or your dependant will be entitled to free of charge
from your retail pharmacist.




                                                                            13
WHAT I’M GREAT AT...
Make a list of things that you’re good at in the top left box. In the other boxes, as
other people (your teacher, your parents, your friends) to put down what you’re good at.

WHAT I’M GOOD AT:                                          3 ......................................................

1 ......................................................   4 ......................................................

2 ......................................................   5 ......................................................


WHAT ................. THINKS I’M GOOD AT:                 3 ......................................................

1 ......................................................   4 ......................................................

2 ......................................................   5 ......................................................


WHAT ................. THINKS I’M GOOD AT:                 3 ......................................................

1 ......................................................   4 ......................................................

2 ......................................................   5 ......................................................
5. EDUCATION

What will happen to my child at school?
If your child is displaying learning difficulties, he may be assigned a Learning
Support teacher. These teachers used to be called Remedial Teachers. This
teacher will take a group of children who need that extra bit of help. Your child
may be assigned a Resource teacher. This teacher deals with your child on a
one to one basis but sometimes may teach a group of children together.
Another alternative is a Special Needs Classroom Assistant [SNA]. The Classroom
Assistant would act as your child's “reminder” for example, helping him to stay
focused on the task at hand.
The school Inspectorate will inform your school's Principle of the number of
hours with one of the above-mentioned your child has been allocated.


What is the role of NEPS?
National Educational Psychological Service
The National Educational Psychological Service agency (NEPS) was established
in 1999 to develop and provide an educational psychological service to primary
and secondary schools. The NEPS mission is to “support the personal, social and
educational development of all children through the application of
psychological theory and practice in education, having particular regard for
children with special educational needs.”
The service provided by NEPS has four main strands
•   Casework with individual children and young people
•   Consultation and support for teachers and parents
•   Project work in schools
•   Promotion of mental health in schools


Private assessments
Those primary schools which do not yet have access to NEPS may commission
private assessments under a scheme administered by NEPS. Each school may
commission a number of assessments - broadly one assessment for every 50
students. Under this scheme, individual psychological assessments may only be




                                                                           15
administered by psychologists whose names appear on a panel compiled by
NEPS. The Regional Directors of NEPS also have a limited discretion to meet
exceptional needs. The contact details for the NEPS regional offices,
information on the commissioning of individual psychological assessments and
NEPS publications are on the Department of Education and Science website:
www.education.ie
If you have any queries regarding your child's assessment etc. they should be
submitted to National Education Psychological Service (NEPS) in writing. Mark
your queries for the attention of Principal Psychologist.
National Educational Psychological Service,
24-27 North Frederick St., Dublin 1.
Tel: (01) 889 2700.
Under The Education Act 1998, the Government is obliged to make appropriate
education available to everyone, including people with disabilities and those
with special needs. In practice, this means that children with disabilities are
entitled to free primary and secondary education and are entitled to compete for
and access third level education places on the same basis as others. Adults with
disabilities are entitled to education services on the same basis as other adults.
Students with specific learning disabilities may be able to get an exemption
from some of the usual academic requirements - for example, if you have
dyslexia, you may be able to get an exemption from the general requirement to
study Irish and/or a continental language; this however, has proven to be very
difficult to gain. Special arrangements may also be made for sitting
examinations. For more information about these exemptions speak to the
Principle of your Childs school.


Legislation
The Education for Persons with Special Needs Act was passed in July 2004. The
aims of the Act are:
• To make further provision for the education of people with special
  educational needs
• To provide that their education takes place, as far as possible, in an
  inclusive environment
• To provide that they have the same right as everyone else to avail of, and
  benefit from, appropriate education
• To help children with special educational needs to leave school with the
  skills necessary to participate, to the level of their capacity, in an inclusive




   16
  way in the social and economic activities of society and to live independent
  and fulfilled lives
• To provide for the greater involvement of parents of children with special
  educational needs in relation to the education of their children
• To establish the National Council for Special Education
• To confer certain functions on the Health Service Executive (HSE) in relation
  to the education of people with special educational needs

What is the role of the National Council for Special Education?
The role of the National Council for Special Education is
• To make available to parents of children with special educational needs
  information relating to their entitlements and the entitlements of their children
• To access and review the resources required in relation to educational
  provisions for children with special needs.


Education for Persons with Special Needs Act 2004
This act has not yet come into full effect. The National Council for Special
Education is to make a report to the Minister for Education and Science,
outlining what needs to be done so that each provision of the act is
implemented. Each section may have a separate commencement date. It is
believed that Section 8 of the act, “Preparation of education plan at direction
of Council” will be implemented before the end of 2005.
National Council for Special Education,
1-2 Mill Street, Trim, Co. Meath.
Tel: (046) 948 6400

What is the role of the Special Educational Needs Organiser (SENO)?
If you and your Childs teacher feel there is a need to you can speak with the
Special Educational Needs Organiser (SENO). The Special Education Needs
Organiser is required to prepare a plan for the appropriate education of the
child, once the Council has been informed by the school that the child has
special educational needs. A group of persons, referred to as a team, provide
advice to the SENO in relation to the preparation of the plan.
The team can include
• The parents of the child (unless they wish to opt out),
• The principal or a teacher from the child's school,




                                                                              17
• A psychologist,
• Any other person whom the parents or the SENO consider appropriate.
• The child in question may also be part of the team if the SENO considers it
  appropriate.
The SENOs will be responsible for co-ordinating and facilitating delivery of
educational services to children with disabilities at local level. In particular, the
SENOs will be a focal point of contact for parents/guardians and schools, and
will process applications for resources for children with disabilities who have
special educational needs. This will also involve regular and detailed
engagement with organisations such as health authorities and the Department,
including administrative divisions, the Inspectorate and the National
Educational Psychological Service (NEPS).
In other words, they are there to help you. They will advise you on what best to
do in order to help your child reach their full potential. Speak to your child's year
head or principal about how you can contact the SENO assigned to your school.
N.B. The Education for Persons with Special Educational Needs Act 2004 has
not been fully implemented as yet. {Jan 06}


Secondary [post primary] Education
Children with disabilities may be educated in mainstream second level schools
or in special classes in such schools or in special schools. The policy is to
provide mainstream education where possible. Funding is available for the
technology needs of individual students with special needs at second level. The
school may apply to the National Council for Special Education's local Special
Education Needs Organiser for these funds.
Resource teaching posts, special needs assistant posts and additional teaching
hours are allocated to second level schools to cater for special needs pupils.
Each case is considered on its merits and additional allocations are made on
the recommendation of the psychological service. There is an independent
appeals board for teacher allocations to second level schools.
When a child who has been assessed as having special needs is about to leave
primary school, the parents may take the psychological reports themselves or
may authorise the school to send them to the relevant post primary school.
There is no automatic transfer of such reports from one school to another.




   18
My child has turned 16, what now?
From the age of 16, children are often referred to the Adult Psychological
services. We would advise you to discuss this with your Doctor/Social Worker as
the child approaches the age of 16.


What happens if my child is suspended or expelled from school?
If a child is expelled from school a parent can appeal the decision to the
Department of Education and Science (DES). A phone call to the Post Primary
Administration Section in Tullamore gets this in motion. You can call them on
(0506) 243 31. If the appeal goes ahead, an arbitration panel meets both the
parents and student as well as the school Principle and Chair of the board to try
and come to a solution. If the school won't take the student back and no other
school can be found the DES can sanction HOME TUITION until a suitable school
is found. When a child is absent from school for a total 20 days, {not necessarily
consecutive days} the Education welfare board must be notified. The school is
required to do this, however you may report the child absent from school.
The school have to notify the Education Welfare Board if the student is
suspended or not in school for a period of 6 days or if they has been told not
to attended as a request been made from the school, for any reason. When
Welfare Officers have been appointed it will be the responsibility of the Welfare
Officer to deal with and resolve issues such as this. Don't be afraid to contact
the Social Worker attached to your child's Doctors team and speak to them
about any difficulties your child may be having.
National Education Welfare Board
16-22 Green Street, Dublin 7
Ph 01-8738600
Further information on all aspects of education for people with disabilities is
available from:
Department of Education and Science,
Cornamaddy, Athlone, Co. Westmeath.
Tel: (090) 648 3600 or (01) 889 6400
Website: www.education.ie




                                                                            19
                 6. RESEARCH INTO ADHD
                    AT TRINITY COLLEGE DUBLIN

Background
The ADHD research group at Trinity College Dublin has been investigating the
genetic and behavioural aspects of the disorder over the past decade, led by
Professors Michael Gill and Michael Fitzgerald. Both the genetic and behavioural
studies have been very successful in furthering our understanding of ADHD. The
genetic studies have identified subtle genetic changes that might increase the
genetic risk for ADHD. The behavioural studies have investigated how children
and adults with ADHD differ from other people in attentional control, timing
estimation, spatial perception and reaction time. We have combined the genetic
and behavioural studies to investigate how children with ADHD with particular
genetic make-ups differ on the different behavioural tasks. The ADHD research
group's work is world-leading. We are advancing our understanding of the
interaction between genetics and behaviour, which will help in the future to
better tailor rehabilitation strategies (both pharmacological and behavioural).


Researchers
A number of different researchers have been involved in the behavioural work
over the past few years.
Current research staff include Dr Aisling Mulligan, Ms Louise Butler, Dr Edwina
Barry, Mr Redmond O’Connell, Dr Katherine Johnson, Mr Michael Daly and Ms
Aoife Dáibhis. Dr Mark Bellgrove is now based in Melbourne, Australia but he is
still involved in our research.
Previous research staff included Dr Celine Mullins (pursuing acting career), Ms
Marie Cox (studying overseas), Ms Catherine O’Kelly (travelling overseas), Dr
Gina Joue (working overseas).


What we understand so far
ADHD is a complex disorder. We think there are a number of genes that are
involved in the disorder and there may be a complex interaction between




   20
particular genes (gene by gene interaction) and between particular genes and
the environment (gene by environment interaction).
Some recent findings
Genetics: An association has been found between ADHD diagnosis and a
common genetic variation in a gene related to serotonin formation. Serotonin
is a hormone in the brain involved in a variety of functions including attention,
sleep, memory and learning, locomotion, aggression and anxiety.
Behavioural: An association has been found between performance on a
sustained attention task and possession of the dopamine transporter gene
(DAT1) in children with ADHD. Dopamine is a hormone in the brain involved in
a variety of functions, including attention, movement, pleasure and motivation.
Previous work had found an association between possession of a common
genetic variation in the DAT1 gene and ADHD. Children who possessed two
copies of the DAT1 performed the sustained attention task with more errors
than children who possessed only one or no copies of the risk allele.


Some upcoming projects
Movement control in children with ADHD
We are interested in seeing if children with ADHD are able to control their
movements as well as other children. We have a digitising tablet with a special
pen that we bring around to people’s houses to test how well the children can
move the pen in response to a computer display. This experiment is good fun
for the children.
Functional magnetic resonance imaging of children with ADHD
We have recently installed the much-anticipated FMRI scanner into the Trinity
College Institute of Neuroscience building on campus. This is a high-tech
scanner, with which we will be able to image a child's brain as s/he performs
attentional and movement tasks. This procedure is extremely safe. The child
will come away with an image of his/her brain.


Would you like to take part?
We are seeking children who meet the inclusion criteria below who would be
willing to become involved in our studies of ADHD. The exact study that your
child would become involved in would depend upon the number of children
that we have already recruited for that particular study. At this stage, we would




                                                                           21
ask you to return the attached form if you are willing to be contacted regarding
research into ADHD. The exact study that we would request your involvement in
would be explained to you at a later date once we have received permission to
contact you. Naturally, returning the attached form in no way obligates you to
participate in the study, it just indicates your willingness to discuss the matter
further.


You will find some answers to some common questions below.
Q: Where will the research be conducted?
A: Most of our research will be conducted in your home using portable
   computers. However, on occasion we may request that your child come to
   the Department of Psychology at Trinity College Dublin. This is particularly
   important for the fMRI experiment as this equipment is not portable. If we
   ask you to come into TCD then we would reimburse your travel costs.
Q: How much time commitment will be involved?
A: In most cases the research will be conducted over two sessions of 2 hours.
   If the research is expected to take longer than this, then we would advise
   you in advance.
Q: Will my child need to be with withdrawn from their regular medication?
A: In most cases we would ask you to withdraw your child from their regular
   medication 24 hours prior to meeting with our researchers. Since we are
   interested in how the brain might be affected in ADHD we need to see your
   children in an unmedicated state, since the medication may correct the type
   of underlying problem that we are trying to investigate. If, however, it is
   impossible for you to withdraw your child from medication, then this will
   not exclude your child from participating in our studies.
Q: What Are The Inclusion Criteria?
A: The inclusion criteria are:
   • A clinical diagnosis of either ADHD or ADD
   • Aged between 6 and 16.
Q: Are There Any Exclusion Criteria
A: Yes, if your child has any of the following conditions then they would be
   ineligible to participate.
   • Epilepsy
   • Fragile X
   • Foetal Alcohol Syndrome
   • Tourette’s Syndrome




   22
   • Autism
   • Aspergers’s Syndrome
   • Any history of psychosis.
Q: Will there be any benefit of this research to my child.
A: As many of you will be aware, there is rarely any immediate benefit to the
   participants of any research project. The long terms goal of our research is
   to understand the brain mechanisms that are involved in ADHD in the hope
   that we can develop treatment programmes for the disorder. Having said
   this, we are able to provide your family with feedback from the testing that
   we conduct with your child. Since many of the tests that we will administer
   are standardized tests, this means that we can tell you whether the
   performance of your child on these tests is average, or above or below
   average for their age. This would include assessments of Spelling and
   Reading, of Achievement (often assessed using IQ tests) and of Attention.
   In the past we have found this type of feedback is useful to families.
If your child, or children, meet the above inclusion criteria and do not have
any of the associated conditions that are listed under the Exclusion criteria,
then we would welcome their involvement in our studies.
If you are happy to be contacted regarding research into ADHD then please
complete the attached form and return it to Dr Katherine Johnson in the
stamped self-addressed envelope. Subsequent to receiving this letter Dr
Johnson will contact you to discuss your involvement in our research further.
In the meantime, if you have any questions please do not hesitate to contact
Dr Johnson on 01 608 8569.
On behalf of the ADHD Research Team, we thank you for your continued
involvement and support.
Katherine Johnson, PhD.




                                                                            23
7. ADDITIONAL SUPPORT SERVICES

Youth Advocate Programme (YAP)
The mission of YAP Ireland is to provide in-home and neighbourhood-based
programmes for young people in crisis.

YAP Ireland staff use a family-focused approach to working with young people
with very complex needs. Each young person and their family participates in the
development of an individual service plan. Staff organise a community team of
experienced people to support the family to move forward. A team may include
the social worker, teacher, coach, neighbour, friends, relatives, tutor etc.

Advocates are recruited from the neighbourhood where the young person resides.
The advocate is a paid trainer and well supervised worker who is matched with a
young person and family according to shared interests and strengths. The
advocate will spend an average of 15 hours of face-to-face contact with the
family each week. The average length of stay in the programme is six months.

• YAP Ireland maintains a “no reject, no eject” intake policy
• The programme serves 25 families at any given time and 50 for the year
• Staff work closely with the social workers, teachers, parents and anyone
  involved with the young person.
• All referrals must go through the Principal Social Workers of the Health
  Service Executive.




   24
8. NOW, WHAT CAN I DO?

What can I do to help my child?
Become acquainted with the condition. Find out all you can about it. Educate
yourself about the medication. Speak to your pharmacist about side effects.
Developing effective behaviour management techniques works wonders. It’s
important to be aware of the things your child CAN do. If you need to take
something away from the child as a means of disciplining him, try to leave him
with the things he is competent at and take away other things.
Children with ADD/ADHD often have a keen sense of Justice. They will notice
and protest if a brother or sister is allowed to stay up later for example. Be
careful to be fair with the treats and privileges!
If you’re having problems in the homework department, if he just wants to go
out to play instead of doing his homework, use homework as the key to
freedom - Do your homework and then you’re free to play.
The greatest thing you can do for your child of course is to LOVE HIM! Don’t
ever underestimate the power of a cuddle! You’re his safe haven when his
feelings have been hurt and he’s feeling unloved by his friends and
schoolmates.


How does the future look for my child?
We cannot emphasise enough how important it is NOT to ignore the fact that
your child may have a condition that he needs help with. It’s not shameful and
your child is normal. Some people don’t hear well, some don’t see very well,
some people have an attention deficit. If you can have your child assessed and
diagnosed early, your child can have as good a future as anybody else. The
important thing is to ACT NOW!
Stop and think for a moment what a great kid you have. Here is a list of 25
good characteristics your child possesses:




                                                                           25
25 GOOD THINGS ABOUT ADHD
1. Lots of energy
2. Willing to try things and take risks
3. Ready to talk, and can talk a lot.
4. Gets along well with adults
5. Can do several things at one time
6. Intelligent - Smart
7. Needs less sleep
8. Good senses of humour
9. Good at taking care of younger children
10. Spontaneous
11. Sees details other people miss
12. Understands what it is like to be teased or to be in trouble therefore can
    be understanding of other children
13. Can think of different and new ways to do things
14. Volunteers to help others
15. Happy and enthusiastic
16. Imaginative - creative
17. Articulate - can say things well
18. Sensitive - compassionate
19. Eager to make new friends
20. Courageous
21. More fun to be with than most children
22. Great memory
23. Charming
24. Warm and Loving
25. Cares a lot about families




   26
9. TIPS FROM PARENTS

Been there! Done that!
Here are some tips other parents have passed on:
• Be consistent!
• Keep a diary of your child’s behaviour. Is there a pattern there?
• Write down anything you think may be of interest to the various
  professionals and take it along to the next appointment with you. Continue
  to do this.
• Give ONE command at a time and then praise your child when the task has
  been accomplished.
• Don’t ask your child to do something you know he can’t do or complete.
  This just leads to discouragement.
• If he’s doing a task, check from time to time to make sure he’s sticking to
  it.
• When something goes wrong (and it will), try to be patient, warm and
  maintain your sense of humour!!
• When applying for various grants etc. include a COPY of the child’s birth
  certificate. This could save time in getting the application processed.
• Draw up an Education Plan each year with each new teacher. Agree on
  strategies for constructive punishment should school rules be broken by a
  ADD/ADHD child. Where possible, include the child in the planning of such
  strategies.
• It is recommended to give the school a photocopy of the medication leaflet
  issued with prescribed medication for their reference. This would make it
  easier for the teachers to access relevant information should the need arise.




                                                                          27
10. SIDE EFFECT RATINGS SCALE

Name: ................................................................................................................................

Date: From: ................................................              To: ..........................................................

Please rate the severity of each behaviour/symptom from 0 to 10, for example:
• 0 means you have noticed the behaviour/symptom during the past week, but
  didn’t think it was too bad.
• 10 means that you have noticed it and believe it to be either very serious or
  to occur very often.

BEHAVIOUR                         None                                                       Very Often COMMENT:
Insomnia                            0      1      2      3      4     5       6      7      8      9 10
Nightmares                          0      1      2      3      4     5       6      7      8      9 10
Talks less                          0      1      2      3      4     5       6      7      8      9 10
Loss of interest                    0      1      2      3      4     5       6      7      8      9 10
Decreased appetite                  0      1      2      3      4     5       6      7      8      9 10
Irritable                           0      1      2      3      4     5       6      7      8      9 10
Headaches                           0      1      2      3      4     5       6      7      8      9 10
Emotional                           0      1      2      3      4     5       6      7      8      9 10
Anxious                             0      1      2      3      4     5       6      7      8      9 10
Unusually happy                     0      1      2      3      4     5       6      7      8      9 10
Tics                                0      1      2      3      4     5       6      7      8      9 10
Dry mouth                           0      1      2      3      4     5       6      7      8      9 10
Constipation                        0      1      2      3      4     5       6      7      8      9 10
Rash                                0      1      2      3      4     5       6      7      8      9 10
Dizziness                           0      1      2      3      4     5       6      7      8      9 10
Any other                           0      1      2      3      4     5       6      7      8      9 10
                                    0      1      2      3      4     5       6      7      8      9 10
                                    0      1      2      3      4     5       6      7      8      9 10
                                    0      1      2      3      4     5       6      7      8      9 10




     28
10. CONTACTS
Are there support groups in the area where I can go and be with other parents
who know and understand how I feel so we can exchange concerns and share
tips with each other?


YES THERE IS! AND HERE’S WHERE YOU CAN FIND THEM:
North Fingal ADD/ADHD Parents and Adult Support Group
Contact: Noreen Colgan (Community Development Co-ordinator)
or Sarah Musharakh (Disability Project Co-ordinator)
BEaT Centre, Stephenstown Industrial Estate
Balbriggan
Co. Dublin
Tel: (01) 802 0484

Drogheda ADD/ADHD Parents Support Group
Contact: Geraldine Lennon
Drogheda Disability Resource Group
Workspace Unit 7
Mayoralty Street
Drogheda
Co. Louth
Tel: (041) 984 6614

TRADD (Tralee & Regions Attention Deficit Disorder)
18 Shankill
Monavalley
Tralee
Co. Kerry
Tel: (087) 756 7998

Finglas Cabra Partnership
Contact: Pauline Hazel
c/o 27/28 Annamoe Terrace
Cabra
Dublin 7
Tel: (01) 868 3806




                                                                         29
Which social groups in the area could cater for my child‘s needs?
Remember Us
This is an integrated social group for children with special needs, their family and
friends. It comes highly recommended by some support group members.
Contact: Nora Roban
Tel: (087) 250 8642 / (01) 841 1470
Contact: Maurice O’Connor
Art Club Development Office
Tel: (087) 917 4562
www.arthclubs.com

Fit For Fun
Contact: Paul Barnett
Tel: (01) 841 1061
     (087) 411 1406

Cryptic Youth Service (Balbriggan)(over 12’s)
This is a social group for all children. Activities include social nights, “War
Hammer” club and summer activities.
35 Dublin Street, Balbriggan, Co. Dublin
Tel: (01) 841 5135
Fax: (01) 841 6382




USEFUL CONTACTS
CITIZENS INFORMATION CENTRE                   HADD (Hyperactive/Attention
58 Dublin Road                                Deficit Disorder)
Swords, Co. Dublin                            Family Support Group - DUBLIN
Tel: (01) 840 6877                            Carmichael House
Fax: (01) 840 9714                            Nth Brunswick Street, Dublin 7
Email: swords.cic@comhairle.ie                Tel/Fax: (01) 874 8349
MATER CHILD AND ADOLESCENT                    DYSLEXIA ASSOCIATION IRELAND
HEALTH SERVICE                                Suffolk Chambers
Health Centre                                 1 Suffolk Street, Dublin 2
Bridge Street                                 Tel: (01) 679 0276
Swords, Co. Dublin                            Fax: (01) 679 0273
Tel: (01) 890 7151                            www.dyslexia.ie




   30
ASPERGER SYNDROME ASSOCIATION            SPECIAL EDUCATION NEEDS
OF IRELAND - ASPIRE                      ORGANISER (SENO)
Carmichael House                         National Council for Special Education
Nth Brunswick Street, Dublin 7           c/o Pobalscoil Neasáin
Tel: (01) 878 0027                       Baldoyle
9.30am - 12.30pm Mon to Fri              Dublin 13
Fax: (01) 873 5737                       Tel: 01 816 7732
www.aspire-irl.com                       NATIONAL EDUCATIONAL
IRISH SOCIETY FOR AUTISM                 PSYCHOLOGICAL SERVICE (NEPS)
Unity Building                           Frederick Court
16/17 Lr. O’Connell Street, Dublin 1     24/27 Nth Frederick Street
Tel: (01) 874 4684                       Dublin 1
Fax: (01) 874 4224                       Tel: (01) 889 2700
www.autism.ie                            Fax: (01) 889 2755
                                         Email: neps@education.gov.ie
THE DYSPRAXIA OF IRELAND
69a Main Street, Leixlip, Co. Kildare    DEPARTMENT OF SOCIAL,
Tel: (01) 295 7125                       COMMUNITY AND FAMILY AFFAIRS
www.dyspraxiaireland.com                 Social Welfare Services Office
                                         Government Buildings
DEPARTMENT OF EDUCATION                  Ballinalee Road
AND SCIENCE                              Longford
Malborough Street, Dublin 1              Tel: (01) 704 3000 / (043) 45211
Tel: (01) 889 6400                       www.welfare.ie
www.education.ie
                                         HEALTH SERVICES EXECUTIVE
YOUTH ADVOCATE PROGRAMME (YAP)           Northern Area Head Office
Contact: Fiona Duignan                   Swords Business Campus
Programme Dirtector                      Balheary Road
1st Floor Offices,                       Swords
43-44 Lower Dorset Street, Dublin 1      Co. Dublin
Tel: (01) 887 9745                       Tel: (01) 813 1800
                                         Fax (01) 813 1870
Other sections include:                  Email: nahbcommunications@erha.ie
APPEALS UNDER SECTION 29 OF THE          DR. STEEVENS’ HOSPITAL
EDUCATION ACT 1998                       Tel: 1800 520 520
(Refusal to Enrol, Expulsions &          Email: customer.services@mailf.hse.ie
Suspensions)
Appeals Administration Unit              BALDOYLE FAMILY RESOURCE
c/o Dept. of Education & Science         CENTRE
Portlaoise Road, Tullamore, Co. Offaly   1 Seapoint Avenue
Tel: (0506) 24377                        Baldoyle
(open Mon-Fri 10am-12.30pm,              Dublin 13
2.30pm-4pm)                              Tel: (01) 832 6115




                                                                          31
ASSOCIATED WEBSITES
www.adhireland.com                                   www.samgoldstein.com
Irish ADHD website. Community                        Dr. Sam Goldstein in America is one of
forum for issues surrounding ADHD.                   the leading speakers on child
                                                     development, ADD/ADHD and
www.addresources.org                                 neuropsychology.
Attention Deficit Disorder Resources
helps people with ADD or ADHD                        www.adders.org
achieve their full potential. This is an             A U.K. website on Attention
American website.                                    Deficit/Hyperactivity Disorder.
www.addresource.com                                  www.chadd.org
An American directory and search                     An American website on Children and
engine on ADD/ADHD and Learning                      Adults with Attention-
Disabilities.                                        Deficit/Hyperactivity Disorder.
www.rollercoaster.ie
An Irish website with a special needs
section.

ACKNOWLEDGEMENTS
We would like to acknowledge the following for the time they have taken to
help us out with advice, tips, talents and information:
The 4th year students of Loreto Convent Balbriggan for their wonderful poetry
and illustrations.
The teacher of these great students: Yvonne Laffey.
For all the Support Groups, locally and nationally, especially Drogheda Support
Group, North Fingal Support Group, Ballyfermot Support Group and HADD.
Mark Herrold, formerly St. Michael’s House.
Vincent Cronin, Cronins Pharmacy, Balbriggan.
Antoinette Cavanagh on the Dr. Steeven’s Hospital help line.
Noel Kelly from Northside Partnership.
Andrew McCann and the staff in the Citizens Information Centre, Swords.
Declan Coogan. Senior Social Worker, Mater Child and Adolescent Mental Health
Service, Swords.
Co-operation Fingal.
Special thanks must also go to Ellen Guild & Cathy Gaffney for their hard work
in researching and designing this resource booklet. Without their tremendous
commitment this resource would not have come to being.
Information contained in this booklet is compiled for reference purposes only, and is correct at
time of going to press.




   32
                               TheDesignStation - (01) 847 7397




North Fingal ADD/ADHD
Parent & Adult Support Group

				
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