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Changing attitudes- Setting an example

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  • dolfrog
    dolfrog Community member Posts: 441 Pioneering
    Hi @WestHam06

    I rediscovered this compilation of research links some of which you may find of some interest.
    They go back to when i was trying to help our sons when they were in the education system, trying to understand the wide range of issues, and how to explain their disabilities in relation to other issues.
    The compilation of links is at Bookmax 
    https://public.bookmax.net/users/dolfrog/bookmarks 
    Keep up the good work
  • WestHam06
    WestHam06 Community member, Scope Volunteer Posts: 1,396 Pioneering
    Thank you @dolfrog, I greatly appreciate all of the support you are giving me. I will be sure to take a look. Thank you. 
  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
    Hi @WestHam06 I just wanted to add that I thought achievement was not material things but living by our values and what makes us happy.  This varies from person to person doesn't it? 

    I also really admire your ambition of educating people about different bodies.  Education is so crucial to this and nipping in the bud non-disabled bias and privilege.  We need voices like yours out there so go you!! :)
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  • WestHam06
    WestHam06 Community member, Scope Volunteer Posts: 1,396 Pioneering
    Hi @Cher_Scope
                                How are you? It's great to meet you and thank you so much for your kind words, I greatly appreciate it. I agree with what you say about achievement, I feel society puts far too much emphasis on achievement being based on material things and how it is all about bigger and better. Some of my greatest achievements are what many people probably just take for granted. I think that because society is like this it can make many people feel like they are not good enough and will never reach what society perceives as being an 'achiever'. I appreciate that this is just my opinion and other may not agree but as you say achievement and what it means varies from person to person and I think that is exactly how it should be.  I am in complete agreement with you education is crucial as there are so many opportunities from this, I just hope I can make it possible, I am very determined too. I think for me it is ensuring I do it the right way and give it the justice that it deserves. Thank you. 
  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
    @WestHam06
    I'm good thank you,! It's likewise lovely to meet you.  I am very much of the same opinion.  Most of us grow up believing we should have things done by certain ages - houses, family, education but it really is fine to do things your own way, at your own speed.  The older I get, the more I learn that achievement is subjective and as long as we are content with our own path that's all that matters :)  
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  • WestHam06
    WestHam06 Community member, Scope Volunteer Posts: 1,396 Pioneering
    Hi @Cher_Scope
                                 Completely agree with all that you have said, I often describe myself as 'a leaf blowing in the wind' and when the time is right I will settle in whatever way that may be. I feel that I have rediscovered my passion and who knows this could lead to some really great opportunities. I have this saying 'My disability is how I am not who I am'. I want to ensure that I create memories along the way. Thank you. 
  • WestHam06
    WestHam06 Community member, Scope Volunteer Posts: 1,396 Pioneering
    Hi @dolfrog
                         How are you? Thank you so much for sharing your research papers with us, they are really interesting, I continue to read the abstracts of the papers. Please may I ask how do you carry the research out? Thank you. 
  • dolfrog
    dolfrog Community member Posts: 441 Pioneering
    edited August 2020
    Hi @WestHam06
    I have been going though quite a bit of stress in recent times, which is related to the lack of awareness and understanding of my families disability.

    The research :-
    Back to the late 1990s our  sons were having problem in the education system, and after about 5 years of miss diagnosis one of our sons was diagnosd has having what was then called Central Auditory Processing Disorder (CAPD) one of the first children in the UK to diagnosed as having CAPD. I went online to find out what CAPD was to understand the issues so that we could explain them to his teachers, family, and friends, 
    I found a USA CAPD support group run by an audiologist, after a short while I realised that I had been living with CAPD all of my life, and it explained my life path. The only problem was due to the stigmer, no adults were willing to admit that they had CAPD or were willing to discuss their life long experiences. I later found out that the audiologist who ran the group also had CAPD. after being in the group for a few months i was explain to the other members the problems of living with CAPD, and possible ways of working around it.
    Some how UK researchers became aware of my activities and asked me to set up a support group so that the UK Medical Research Council (MRC) could get government funding for a 5 year (what was then called Auditory Processing Disorder (APD) the Central was dropped in 2000) APD research program. During this time I attended many lecture and presentation by leading UK Researchers and Consultants mainly by invitation. 
    I set up APDUK in 2002-2003 and the MRC got their funding in 2004. As part of my qualification for sunning a UK support agency I was assessed and diagnosed as having APD, which took well over half a day there were so many tests. One of which the Random Gap Detection Test, which measures the size of gap between sounds you can process, which at the time did not include a gap large enough to process, explained my dyslexia and why I have problems processing fast speech. 
    As part of running APDUK I was in touch with the leading MRC research team, and after a while (they sis not say this) but they got fed up with me asking which to them were silly questions regarding audiology. So they sent me come copies of their recent research papers. It took me 3 months to read the first paper, working out the meaning of the very new terminology, and how what was mentioned related to many other issues. They suggested I use PubMed and other online research paper libraries to find research to help explain these issues. So began to create my online PubMed research paper collections when say some one asked about some related issues etc.  
    A friend of mine in the USA who also has APD created an Wikipedia APD article and asked me to help provide the supporting international research to explain the various issues described in his article. ( due to my type of APD and dyslexia I am not very good at typing text that most see, but i can find the research based supporting information) So I became a Wikipedia editor (USER) during which time I added support research to many articles, and changed a few to include the correct information in line with the current international research. I spent about 5 years doing that. But it became too stressful as those marketing their preferred money making concepts became for me too discriminatory.
    Add to which a few so called leading UK researchers did not and still do not want APD to be recognised as it conflicts with their career marketing needs, one even denied that my clinically diagnosed APD existed at a committee meeting I attended, and another researcher has been marketing that APD does not exist on Twitter, until I found out about 2 years ago.
    So I have to use research to explain my families communication disability, and to prove the incompetence and negligence of some who only want to market their research and therapy program providing careers and deny the existence of my families disability. 
    Until I was in my 50s I did nor even know i could read research papers lol.

    You could have a look at My Pearltrees full research paper collections which are listed journal by journal, as useful starting point is the Auditory Processing Disorder page. There is also in the top menu an UP ARROW, which takes you  to the main page listing the journals 
    https://www.pearltrees.com/dolfrog/auditory-processing-disorder/id14354526 
    the papers cover a wide range of issues.

    Sorry to ramble on so, but it is what i do sometimes lol.
  • WestHam06
    WestHam06 Community member, Scope Volunteer Posts: 1,396 Pioneering
    Hi @dolfrog
                         Firstly, I am sorry to hear that you have had a stressful time in recent months, I do hope things start to improve for you, please may I ask do you feel that you receive any support? Wow, that is amazing and sounds so interesting. It is great that we have people like yourself who are willing to go out and there and try to find out more in order to be able to support yourself and your children to live the life you would like to live with the disabilities that you have. I would like to thank you for doing this and greatly respect you for it. Please may I ask, are you still in contact from the support group in the USA? I am keen to continue to read your research papers and learn about Auditory Processing Disorder as this is a disability I am not familiar with. I am also saddened to hear of researchers wanting to use marketing for the best financial gain as possible, to my knowledge and understanding, which I admit is very little, this is not what research is about. I am also sorry to hear of people denying this disability exists but please do continue to educate and thank you for sharing with us as this is an opportunity for people to learn and in turn help to raise awareness. Best wishes, thank you. 
  • dolfrog
    dolfrog Community member Posts: 441 Pioneering
    Hi @WestHam06

    My sleep pattern has completely gone, i have been going anything up to 30-40 hours without sleep, which is very much related to your first question.
    i thought it would be best for me to answer your questions one post at a time.
    So your first question "Do you feel that you receive any support?"

    Not really, the Medical Research Council (MRC) recommended a multi-discipline support team for those of us who have Auditory Processing Disorder (APD) made up of an Audiologist, a Speech and Language Therapist, and a Psychologist.
    Currently our local NHS Trust Audiologists, only want to provide hearing aids, the psychologists do not want APD to exist as it is the main underlying cause of the dyslexia symptom which they gain income from diagnosing as a condition.
    I have had some support in the last 2 years form a Speech and Language Therapist, who is still learning about APD.

    The problem is that our three sons my wife and I all have a clinical diagnosis of having Auditory Processing Disorder, and post diagnosis we have very little or no support from the so called medical professions who should be trained and qualified to understand, explain the issues, and provide support to those of us who have Auditory Processing Disorder, but for most of the time we have only come across medical professional negligence which causes high levels of anxiety and stress, and the feeling that they do not want to even begin to understand our life long communication disability. 
  • dolfrog
    dolfrog Community member Posts: 441 Pioneering
    edited September 2020
    Hi @WestHam06

    Your second question "Are you still in contact from the support group in the USA?"

    The USA group that I  joined back in the 1990s no longer exists, in 2000 there was a USA symposium which changed what had previously been called  Central Auditory Processing Disorder (CAPD) to Auditory Processing Disorder (APD) to help explain the wider range of issues that research was identifying, that can cause the brain to have problems processing the sounds that the ears hear. 
    Although the symposium created a wider and  better explanation of the causes of the problems causing the brain to have problems processing the sounds the ears hear. The research which created this wider explanation was done by different  research bodies around the USA. 
    And not all USA audiologists and other support professionals were willing to accept the new wider definitions and assessment tests as there were new overlaps with other related areas such as dyslexia and speech and language issues.
    And for some these  USA based reasons the groups support professional were not able to agree regarding the new definitions and explanations of APD.
    However I still have contact with some who were members of group.

    I did start an adult APD support group on Yahoo back in 2000, the OldAPDs which had adult members who had APD and also some international researchers interesting in understanding living with APD including audiologist, speech and language researchers and psychologists. 
    During the 2000s the some of the group members participated in an online APD research program investigating living with APD, run by an Australian Psychologist, Damien Howard, and two of the resulting articles "Controlling the Chaos" and The Trouble with Strangers" can be downloaded from his web site at 
    http://www.eartroubles.com/articles.html (half way down the page) 
    Yahoo made some structural changes to all of their groups at the end of 2019, which made the group APD unfriendly by deleting all of the post history and the information folders. So we deleted the group earlier this year.

    I currently have a Facebook APD support group, which i started in 2009, the membership includes adults who have APD, parents of children who may have or have been diagnosed as having APD, audiologists, teachers, speech and language, psychologists etc. 
    Currently there are just over 16,000 members of my Facebook APD group.
  • dolfrog
    dolfrog Community member Posts: 441 Pioneering
    Hi @WestHam06

    your third question was "I am also saddened to hear of researchers wanting to use marketing for the best financial gain as possible, to my knowledge and understanding, which I admit is very little, this is not what research is about." 
     
    It is not what research should be about. However research has to be funded, and some of those who provide the funding can have a specific a marketing interest. 
    Some research regarding therapies and programs is funded to demonstrate and explain how a therapy / program can help a specific group of individuals. Unfortunately there was a program related to my disability which was funded and marketed in this way. 

    There was some initial research done to explain that it could help those who have APD back in the 1990s, however the university where the research was carried out decided to market the program with more positive research, and even having students telephone marketing the program; the university benefited financially which it used to radically improve its facilities, new buildings etc. The program when assessed by international researchers using Gold Standard "Randomised Control Trials" failed to demonstrate to provide any long term benefit for those who have APD.  

    And another program provider used its own marketing department to create what it called International "Disability" Association to support those who may have that disability and recommending its program as the best form of support. 

    However International Research now has a new Gold Standard "Randomised Control Trails" which require in depth research structures to investigate the effectiveness of a program, unfortunately it also requires a great deal of funding.  

  • WestHam06
    WestHam06 Community member, Scope Volunteer Posts: 1,396 Pioneering
    Hi @dolfrog
                        Thank you for answering my questions. I am sorry to hear of your recent struggles with your sleep pattern, how are things now? I will definitely read the two articles by Damian Howard that you kindly shared with us and will continue to expand my knowledge on APD. If you don't mind, this may involve me asking you questions if I please may. Thank you.  

Brightness