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I am a mother of 3 children with numerous
disabilities and suspected of having a genetic syndrome such as
fg syndrome.
My 6 year old has adhd, mood disorder, language delays, anxiety
disorder, defiance disorder , disruptive behavior disorder.
My 5 year old has O.D.D., craniosynostois, post operative repair,
mood disorder, adhd, sensory deprivation, communication
processing and language delays, complex partial epilepsy.
My 2 year old has parent-child relational problems (defiance),
and a mild mixed developmental delay, and mircocephaly.
I have received many recommendations for parent management
training.
We have been to 29 doctors, therapist, and psychologist.
We have even been written a letter that said they have an organic
neurologic disorder and that we needed to move to a large city
and try research studies/medication.
There is nothing more wonderful than the hopes that we could one
day go to a movie, store, or church as a family (and stay for
more than 5 minutes without being restrained or interrupting a
social function).
I don't want to appear desperate-but I am.
I have been referred everywhere in an attempt to "keep us busy
medically" since they say "your family is out of our
realm."
Thank you for anything you may be able to offer my
family,
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Home Visits
U.K. Ireland and E.U
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Dear Mrs. Xxxxx,
Thank you for your letter, I have taken the time to respond to it
carefully.
Let us look at some of the problems that you mention with your
children.
suspected of having a genetic syndrome such as fg
syndrome
As you probably know, this syndrome often results in the
following behaviour
"busy" and wilful children with much mischievousness,
impulsiveness and great affability, who are very demanding of
attention, occasionally aggressive, excessively hyperactive,
impatient, gregarious and competitive."
If your child does not have this syndrome then this type of
behaviour is consistent with the relation-based inappropriate
behaviour that I work with.
Your 6 year old has adhd, mood disorder, language delays,
anxiety disorder, defiance disorder , disruptive behavior
disorder
I speak about these in more detail below.
Your 2 year old has parent-child relational problems
(defiance), and a mild mixed developmental delay, and
mircocephaly
Did the professional tell you that your child "has" "parent-child
relational problems" , or is this your word. Either way this is
significant. The professional should have made it clear that
your a child can not "have" this. This professional was telling
you that you that (from what he or she had seen so far) the
problem was associated with your techniques for interacting with,
and handling the behaviour of, your child.
I don't know if the "defiance" in brackets was the professionals
word or yours but this is not an appropriate word to use for a
two year old as it suggests that your will (your need) at a
particular time should to be understood and complied with by a
two year old baby. This is not reasonable and for many families
this belief has lead to great difficulties with behaviour. The
behaviour of a two year old is not difficult to control if you
can find ways of giving them what they want, but under your
terms. It can be very difficult to respond correctly if you
think they are just being "defiant". Too young to be
naughts?
and mircocephaly
The symptoms of this do not have a mirror in the more usual
behaviour management problems so are unlikely to be behaviourally
based, if you decide to look at the possibility of my help I
would need to know some detail of the symptoms and if the child
still has them.
Your 5 year old has O.D.D., craniosynostois, post operative
repair, mood disorder, adhd, sensory deprivation, communication
processing and language delays, complex partial
epilepsy
complex partial epilepsy
You will need to tell me more about this - how often does this
child have seizures now? I understand the key factors are
1. medication (as you probably know time needs to be taken to get
the right medication for the individual child) where this is
necessary and
2. behaviour management to train the child to recognise the pre-
seizure state and to
3. manage their behaviour to avoid high emotion conflicts and
maximize relaxation.
It follows that if there are serious behaviour management
conflicts in the home this will tend to make this condition
worse.
Oppositional Defiant Disorder
The symptoms of Oppositional Defiant Disorder I am told are
1. Often loses temper
2. often argues with adults
3. often actively defies or refuses to comply with adults'
requests or rules
4. often deliberately annoys people
5. often blames others for his or her mistakes or
misbehavior
6. is often touchy or easily annoyed by others
7. is often angry and resentful
8. is often spiteful and vindictive
These exactly mirror the behaviour of children of parents who
come to me in need of help with their behaviour management.
craniosynostosis
As far as I am aware, this should not effect a child's
behaviour.
post operative repair
I am not sure of the significance of this since after any
operation a child has to go through a period of recuperation.
Operations for craniosynostois, if this is the operation that
you are speaking about, usually, I am told, present no
difficulties for the child or the parent.
mood disorder
Was your child was actually diagnosed with a mood disorder? I
would need to know which one? Perhaps you were told that he might
have a mild form of mood disorder? How long did they
professional observe? Did the professional explain to you what
the key factors were that led them to this conclusion?
ADHD
The National Institute of Mental Health (NIMH) says that the
symptoms of ADHD are
Inattention
Focusing deliberate, conscious, attention to organizing and
completing a task or learning something new is difficult.
Hyperactivity
People who are hyperactive always seem to be in motion. They
can't sit still. Like (named child in their example), they may
dash around or talk incessantly.
Impulsivity
People who are overly impulsive seem unable to curb their
immediate reactions or think before they act. As a result, like
Lisa, they may blurt out inappropriate comments. Or like (named
child in their example), they may run into the street without
looking. Their impulsivity may make it hard for them to wait for
things they want or to take their turn in games. They may grab a
toy from another child or hit when they're upset.
But NIMH also say:-
The fact is, many things can produce these behaviors. Anything
from chronic fear to mild seizures can make a child seem
overactive, quarrelsome, impulsive, or inattentive. Or, for
example, a formerly cooperative child who becomes overactive and
easily distracted after a parent's death is dealing with an
emotional problem, not ADHD.
I find it strange that they do not also mention Behaviour
Management issues since if emotional problems can produce exactly
the same symptoms as ADHD, then so can deficiencies in behaviour
management technique.
Why? Well because it is well documented that where behaviour
management involves frequent family crises this can create
emotional problems for the child (and the parent). Therefore
behaviour management issues should, in my view, be stated clearly
by NIMH as an area that can also mimic these symptoms.
sensory deprivation
The fact that you put this down on your list without explaining
what is meant by it suggests that just like the "parent-child
relational problems" you feel that this is something that your
child "has".
As far as I am aware "sensory deprivation" has usually been the
result of an infant being in an institution or environment where
they received insufficient interaction from an adult or parent at
an early stage. I would need to have some more information on
this. Perhaps it was intended to suggest that your interactions
with your child were deficient in some way. If this is what
they meant then they might have been suggesting that your
interaction skills and/or your behaviour management techniques
were an issue.
communication processing and language delays
Delays in talking, again as far as I am aware, are often not that
significant. If you are waiting for a bus so that you can go to
the shops and it is delayed you still get to the shops when it
comes, it just takes a little longer.
Similarly, if your child's ability go process communication
information (spoken and written) is (or was) delayed and has
since, or will fairly soon, arrive then this will have little
effect on behaviour but may imply the need for some individual
teaching help to catch up. Is your 5 year old gaining language
reasonably now? If he has reasonable language skills, as far as
I am aware, this should have little effect on behaviour.
"Organic Neurologic Disorder"
Some general questions of mine
Is there a history of difficulties that might be genetic within
your - or their father's family? Have any of the professionals
ever told you the statistical
likelihood of all three of your children having the difficulties that
they have?
You have been to see 29 doctors, therapist, and psychologist; did
any of these professionals give you any practical
behaviour-management advice or training?
You have "received many recommendations for parent management
training". Effective help in this area is very hard to find so
you would have found it difficult to follow up these
recommendations; were you able to?
If you would like to look into the possibility of my help, please
reply to any points that you want to clarify.
Warwick Dyer
Behaviour Change Consultancy |