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,
U.K. Ireland and E.U
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?
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.
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.
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?
The National Institute of Mental Health (NIMH) says that the symptoms of ADHD are
Focusing deliberate, conscious, attention to organizing and completing a task or learning something new is difficult.
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.
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.
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.
Behaviour Change Consultancy