Closed doors - nobody seems bothered

Hi Bongo,

You may find this advice helpful. Not all of it will apply, but disguard whats not relavant.

Quote: 

With regard to people telling you 'it can't possibly be', I would ignore it all.

If your gut reaction as a mother or parent is that their is something wrong, then the chances are, you are right. Well meaning or dismissive comments from others can be very damaging in the long run and may cause you to second guess yourself. That generally leads to self reproach and a shed load of guilt for not following your instincts, which isn't helpful. Use your anger constructively and channel it into getting her the right support and diagnosis.

I've attached a links which maybe of some help. It's outlines a presentation by a female with the condition, surrounding Anxiety for children and young adults in the educational setting (43 min.)

http://www.youtube.com/watch?v=rPD_yzMHJls

In looking at the diagnosis element it's important to consider the 'whole Picture.'

I found it easier to write down what I witnessed. I never researched ASD beforehand, I just wrote what I saw and experienced when looking at my sons behaviours. (I have two diagnosed as on the spectrum.)

By everything I mean: How they hold a pencil, their dyslexia, how they sleep, their co-ordination problems (Fine and gross motor difficulties) Word finding difficulties, litteral interpretation, social interaction with others, obsessive interests, repetative behaviors, stimming behaviours, anxiety levels and triggers, auditory sensitivity, touch sensitivity, food intollerance, light sensitivity, extreme reaction to certain smells, health problems, orginizational skills or lack of them, obsessive behavours etc, etc.

This was all backed up by independant OT reports, Speach and Language reports, Ed Psych reports etc. In my experience waiting for LA support was a waste of time and I didn't realize that often the reports have a ceiling level. Meaning that they only go up to 16 years of age and then you have to move to an adult service.             This is a whole different ball game.

The truth is that by looking solely at the mental health element through CAMH's, you are probably only looking at a fraction of the issue. Many behavioral difficulties which are expressed have their roots in sensory processing and cognitive understanding. Looking at the cognitive element of a persons difficulties is important and will affect their behaviour, but managing some of the other issues would also be of a huge benefit.

Their is a great deal of relief that comes from knowing why we behave in a certain way. As a person myself who has only just been diagnosed in her 50's, It's brought me a tremendous amount of insight and made me realize that I can adopt other strategies as an adult to cope. If you want to afford your daughter that ability, I'd suggest an early diagnosis is key'

I've struggled for many years and life has been much harder than it needed to be and certainly harder than it's been for my children, who've had a good deal of support from early on.

It's likely that she will always find life difficult, however knowing, accepting and acting on that information has the potential to tranform her life. Be mindful also that Exams and education in general has a huge impact on behaviour. One of my boys challenging behaviour has been hugely impacted by the conclusion of his education. He still has meltdowns, but at least the volumn is turned down a little.

Write all that she experiences down in a case statement style document,(I cannot tell you how helpful that is during meetings, as I always walk out realizing I've forgotten something.) give each assessor a copy of that document (For openess and transparancy) and get her fully assessed by independant professionals who have no hidden agenda and will assess your child now!

You are doing great as a parent, so don't loose faith. If the LA want to assess her again in their own time, then all well and good, but most would admit that they would have to consider the findings of their peers in the field, irrestpective of whether they work independantly or not. From that point it often becomes a formality as so much eveidence is gathered.

If I can help you with any specifics please ask.

Regards

Coogybear

Hi Bongo,

You may find this advice helpful. Not all of it will apply, but disguard whats not relavant.

Quote: 

With regard to people telling you 'it can't possibly be', I would ignore it all.

If your gut reaction as a mother or parent is that their is something wrong, then the chances are, you are right. Well meaning or dismissive comments from others can be very damaging in the long run and may cause you to second guess yourself. That generally leads to self reproach and a shed load of guilt for not following your instincts, which isn't helpful. Use your anger constructively and channel it into getting her the right support and diagnosis.

I've attached a links which maybe of some help. It's outlines a presentation by a female with the condition, surrounding Anxiety for children and young adults in the educational setting (43 min.)

http://www.youtube.com/watch?v=rPD_yzMHJls

In looking at the diagnosis element it's important to consider the 'whole Picture.'

I found it easier to write down what I witnessed. I never researched ASD beforehand, I just wrote what I saw and experienced when looking at my sons behaviours. (I have two diagnosed as on the spectrum.)

By everything I mean: How they hold a pencil, their dyslexia, how they sleep, their co-ordination problems (Fine and gross motor difficulties) Word finding difficulties, litteral interpretation, social interaction with others, obsessive interests, repetative behaviors, stimming behaviours, anxiety levels and triggers, auditory sensitivity, touch sensitivity, food intollerance, light sensitivity, extreme reaction to certain smells, health problems, orginizational skills or lack of them, obsessive behavours etc, etc.

This was all backed up by independant OT reports, Speach and Language reports, Ed Psych reports etc. In my experience waiting for LA support was a waste of time and I didn't realize that often the reports have a ceiling level. Meaning that they only go up to 16 years of age and then you have to move to an adult service.             This is a whole different ball game.

The truth is that by looking solely at the mental health element through CAMH's, you are probably only looking at a fraction of the issue. Many behavioral difficulties which are expressed have their roots in sensory processing and cognitive understanding. Looking at the cognitive element of a persons difficulties is important and will affect their behaviour, but managing some of the other issues would also be of a huge benefit.

Their is a great deal of relief that comes from knowing why we behave in a certain way. As a person myself who has only just been diagnosed in her 50's, It's brought me a tremendous amount of insight and made me realize that I can adopt other strategies as an adult to cope. If you want to afford your daughter that ability, I'd suggest an early diagnosis is key'

I've struggled for many years and life has been much harder than it needed to be and certainly harder than it's been for my children, who've had a good deal of support from early on.

It's likely that she will always find life difficult, however knowing, accepting and acting on that information has the potential to tranform her life. Be mindful also that Exams and education in general has a huge impact on behaviour. One of my boys challenging behaviour has been hugely impacted by the conclusion of his education. He still has meltdowns, but at least the volumn is turned down a little.

Write all that she experiences down in a case statement style document,(I cannot tell you how helpful that is during meetings, as I always walk out realizing I've forgotten something.) give each assessor a copy of that document (For openess and transparancy) and get her fully assessed by independant professionals who have no hidden agenda and will assess your child now!

You are doing great as a parent, so don't loose faith. If the LA want to assess her again in their own time, then all well and good, but most would admit that they would have to consider the findings of their peers in the field, irrestpective of whether they work independantly or not. From that point it often becomes a formality as so much eveidence is gathered.

If I can help you with any specifics please ask.

Regards

Coogybear