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Scottish Parliament Petition to formally recognise PDA
  • Holly59
    Posts: 2,586
    http://www.parliament.scot/GettingInvolved/Petitions/PE01625

    Mary and I would be delighted if you would sign our Petition to get PDA formally recognised in Scotland. This would set the precedent to recognise in the UK then the World. We would greatly appreciate if you would submit written evidence of your issues getting a diagnosis or not!! If you need assistance there is an email and contact number on the page. The Staff at the Petitions Department are extremely helpful don't be frightened to ask.This evidence will be vital in the final decision making. Anyone in the World can sign and submit evidence.Please share and retweet the Petition.

    We wish to thank the PDA Society for supporting our Petition and helping us with the final draft . A very special Thank You goes to the Liberal Democrats for their outstanding support and guidance .

    We now have a number of Charities promoting our Petition. We had to pass the Scrutiny Rules proving we had tried every available avenue open to us first before they would accept submission of the Petition. I can assure you we did.

    Mary has a daughter and I have two sons with both Asbergers and PDA. Our journeys have been horrific for our children and our families therefore we wish to promote the awareness and recognition of PDA for everyone concerned.

    We are running a " Listen to the Parents" campaign tying in with World Experts Dr Christie and Ruth Fidler. Far too long have parents been ignored . It needs to stop .

    Patricia Hewitt and Mary Black Scottish Borders.
  • gerry
    Posts: 46
    I have signed the above petition but I'm not to good with technology. I've attached a copy of my comment.If I can be of any help to the two ladies please ask them to contact me.
    PDA PETITION TO THE SCOTTISH GOVERNMENT-COMMENT


    My daughter was the first child in Scotland to be diagnosed with PDA by Professor Newson in 1998. The clinicians at my local CAMH worked with the experts in Nottingham and gained a profound understanding and knowledge of the techniques and resources required to help my daughter. My local Consultant Psychiatrist put in place a support package where my daughter was helped through a combination of attending the CAMH one day a week and the local education authority took on board the advise from the specialists (after much hard work) and my daughter was supported in her local mainstream school by a full time special educational needs assistant til age 15. As a result of the early recognition of PDA by professionals and the correct support package my daughter went onto University to study English, Creative Writing and Journalism. She now owns and runs an internet horror channel. I am extremely proud of her, these children have unique talents and with the right support they can achieve so much. At the time of her diagnosis we were told that many of these children end up in prison or secure units or at best working a half day a week in Tesco. I implore The Scottish Government to promote a wider acceptance, awareness and recognition of PDA . My daughter is living proof that through the correct early assessment, diagnosis and treatment of PDA and the utilization of the correct education and handling guidelines these children can go on to achieve a successful outcome. Please support this petition by Patricia Hewitt and Mary Black so that children with PDA in Scotland can receive the appropriate services and treatment they so desperately need and rightly deserve to become happy and fulfilled individuals like my daughter.
  • Wow Gerry that is fantastic. So glad your daughter was so lucky. This petition will hopefully be a trigger for the whole of the UK, as many in England have also struggled with gaining recognition of their child's PDA. Without the accurate diagnosis, without the expertise and willingness out there, our children are doomed.
  • Holly59
    Posts: 2,586
    Hi,
    Thank you ever so much for your wonderful supportive letter. That's exactly what we need to prove that early intervention is essential for a positive outcome.

    Sadly in the Scottish Borders we are 30'years behind the times with absolute tragic outcomes. No one cares or wants to learn .

    There are a few of us working together fighting to get the awareness out there but it's such hard work.

    It was lovely to speak to you . Will follow up the information on Monday . Will keep in touch .

    Pat xx
  • You could print some flyers with details of the petition and leave it in libraries, newsagents etc.
  • Holly59
    Posts: 2,586

    PlanetAutism said:

    You could print some flyers with details of the petition and leave it in libraries, newsagents etc.



    Mary's already doing that . . Hopefully with the PDA Society backing us they will have important contacts and are on the case.

    Pat xx :)] :-c =D>
  • gerry
    Posts: 46
    Pat

    As you mentioned there is a PDA training event running this Friday coming in Barrhead, which is within East Renfrewshire Council, the authority where I live. I would suggest it might be an idea to invite the two local newspapers who cover the authority along to the event. They could speak to both the facilitators and parents and they may be willing to run your story as the training is a local event and this might help to promote your petition.
    I will email you contact details for both papers.

    It might also be worth contacting The Daily Record, The Scotsman and The Herald newspapers. Also consider contacting both BBC Scotland and STV News.

  • Holly59
    Posts: 2,586

    gerry said:

    Pat

    As you mentioned there is a PDA training event running this Friday coming in Barrhead, which is within East Renfrewshire Council, the authority where I live. I would suggest it might be an idea to invite the two local newspapers who cover the authority along to the event. They could speak to both the facilitators and parents and they may be willing to run your story as the training is a local event and this might help to promote your petition.
    I will email you contact details for both papers.

    It might also be worth contacting The Daily Record, The Scotsman and The Herald newspapers. Also consider contacting both BBC Scotland and STV News.



    Webb and the Trustees could certainly arrange this, it would be an amazing opportunity to promote our Petition , the PDA Society , your story how early intervention and awareness has made a massive difference to her life , and yours, and basically we are no further forward all these years later.
    Your daughter is living proof that PDA Stratagies and early intervention is desperately needed.

    You have missed your Vocation as PR Guru. I am sure the Trustees would appreciate the contact details .

    We must get Political Parties to work together on this one. I know that's one heck of a challenge but it can and should be done.

    Thank you.

    Pat and Mary xx
  • Please if you can try to draw in all the threads of what is relevant to PDA and ASD, NHS failings, council failings as regards eligibility and provision of school support, school failings and unwarranted CP interventions. They need to know why lack of diagnosis/recognition is such a problem.
  • gerry
    Posts: 46
    I think with the backing of the PDA society these media institutions would perhaps be more keen to promote the petition as it has the backing of a nationally recognised charity. I hope someone at The PDA Society can take this forward for you both. Good luck.
  • gerry
    Posts: 46
    My comment hasn't appeared on the petition website for some reason. Perhaps it was too long or takes a few days to process. I've emailed the administrators directly and sent them a copy of what I posted. I asked them to ensure it is on the website and send me an email confirmation to this effect.
  • Holly59
    Posts: 2,586

    gerry said:

    My comment hasn't appeared on the petition website for some reason. Perhaps it was too long or takes a few days to process. I've emailed the administrators directly and sent them a copy of what I posted. I asked them to ensure it is on the website and send me an email confirmation to this effect.



    Thank you.
    The gentleman I spoke to and dealt with at the Petitions Department was amazing. He was so patient , kind , very supportive , he made some very helpful suggestions. I explained my dyslexia and other issues and he went far beyond normal expectations to help. A true gent.

    That should pose no problem whatsoever.

    Pat xx


  • gerry
    Posts: 46
    I've just had another thought there is an organisation called change.org where you can launch a national/worldwide petition and they disseminate to people who have signed previous petitions with a similar theme. I've signed a lot of their petitions to helps families in the UK,where their child with autism is held hundreds of miles away from home in psychiatric hospitals often for months or even years because there is no provision in their local area. They have had some amazing success and publicity through this organisation.

    I don't know if they charge for this or how you would go about it to link it to the Scottish Government petition website. But again perhaps the PDA society could look into this and offer you some assistance with how to go about it

    I've attached the website address for change.org and a link to one of the petitions I signed.

    https://www.change.org/

    https://www.change.org/p/help-my-son-get-the-autism-care-he-needs/u/16396061?tk=RnKyETgWCfpASX6S40aQvUwmNFGFOaW_RT32ZDHV0y8&utm_source=petition_update&utm_medium=email

    Good luck
  • Holly59
    Posts: 2,586

    PlanetAutism said:

    Please if you can try to draw in all the threads of what is relevant to PDA and ASD, NHS failings, council failings as regards eligibility and provision of school support, school failings and unwarranted CP interventions. They need to know why lack of diagnosis/recognition is such a problem.



    My case covers all of those.

    I am sure once these case histories are presented as evidence as to the reality of the situation it will shock people into listening and finally recognising PDA.

    To understand PDA you have to understand Autism Spectrum first. It's been our experience that Autism Spectrum is not understood , there have been so many failings.

    At this stage we must press for awareness and recognition during the time the Petition is open.

    Thank you ladies.

    Pat and Mary xx
  • Holly59
    Posts: 2,586
    https://www.change.org/p/scottish-government-give-children-with-disabilities-the-support-they-need-in-school?tk=Z_LhwZ4ysjp_Cxm_lJ7rMNnMqpNg1w8v7fAh5Llu2wU&utm_source=petition_update&utm_medium=email

    There is a Petition at present by a mum with an additional needs child . Her story has been in the press recently.

    Unfortunatly the response from the SNP was to contact Enquire and Govan Law Centre if you had issues at school.

    This is why Mary and I have started this Petition. That's exactly the response we have had. We need to make aware talking round a table, with written evidence presented to them , that the Stratagies and Polices do not work and with no formal recognition of PDA the massive impact it has . We need formal guidelines in writing that are accepted.

    Your submission is spot on evidence of early intervention and recognition does work.

    Pat and Mary xx

  • gerry said:

    I've just had another thought there is an organisation called change.org where you can launch a national/worldwide petition and they disseminate to people who have signed previous petitions with a similar theme. I've signed a lot of their petitions to helps families in the UK,where their child with autism is held hundreds of miles away from home in psychiatric hospitals often for months or even years because there is no provision in their local area. They have had some amazing success and publicity through this organisation.

    I don't know if they charge for this or how you would go about it to link it to the Scottish Government petition website. But again perhaps the PDA society could look into this and offer you some assistance with how to go about it

    I've attached the website address for change.org and a link to one of the petitions I signed.

    https://www.change.org/

    https://www.change.org/p/help-my-son-get-the-autism-care-he-needs/u/16396061?tk=RnKyETgWCfpASX6S40aQvUwmNFGFOaW_RT32ZDHV0y8&utm_source=petition_update&utm_medium=email

    Good luck



    Gerry would really appreciate you signing this related one (involves autism, PDA, educational and NHS failings and unwarranted SS): https://www.change.org/p/edward-timpson-mp-make-brighton-hove-city-council-cease-illegal-section-47-ss-investigations

    The comments do take a few days to appear I think as I haven't seen mine up yet either.
  • Holly59
    Posts: 2,586
    Just had a suggestion from Webb , add the Petition link to your emails .

    Simple but effective.

    Thanks xx
  • Emails to who?
  • Holly59
    Posts: 2,586

    PlanetAutism said:

    Emails to who?



    On the bottom of my email it has my name and email.
    Add it on there, so when you send emails the link for the Petition is included.
    Pat xx
  • Holly59
    Posts: 2,586

    gerry said:

    I think with the backing of the PDA society these media institutions would perhaps be more keen to promote the petition as it has the backing of a nationally recognised charity. I hope someone at The PDA Society can take this forward for you both. Good luck.



    Yesterday evening I received a personal email from Geraldine. Bless her, she has sent a very emotive email to many of her relatives, friends and people who have helped over the years in the support and care of her daughters education . she has explained Cara is living proof that PDA Stratagies do work , we must promote the awareness of PDA and how all these years later there has been so little progress .

    It take that one " Special Person" to listen and stand up and fight for what is right in the World.

    Thank you Geraldine and Cara for sharing your experience and giving us hope.

    Pat and Mary xx

  • Sometimes a few of those one special persons are all there is, when the charities are all standing back silently.
  • gerry
    Posts: 46
    My daughter was the first child in Scotland to be diagnosed with PDA by Elizabeth Newson in 1998. I helped organise the the first PDA Contact Group Conference with another mum who started the support group Jan Seabourne. We also set up the forerunner to this website. I check the website every now and again but have only previously posted on one occasion. But when I saw the petition to the Scottish Parliament to raise awareness of PDA I wanted to contribute.

    Apologies for long post but I want to give all you AMAZING parents something to hold on to. This poignant phrase got me through some really dark days when I was at the bottom of the abyss.
    "Where there is....HOPE-all things are possible.

    I would like to republish these 2 very special items that appeared in PDA News Issue 3, June 2001. I had just finished a life changing course called “Partners In Policymaking,” which is a leadership development programme designed for disabled adults and parents of children with disabilities. The aim of the course is to increase social inclusion and achieve social justice. It specifically aims to do this for people who are at risk of social exclusion due to labels of disability. I came across the first article during the course. I know exactly how the parents who are members of this forum are feeling because I too have been where you are now and there are still days when I am still in that place and I'm definitely not saying everything in the garden is rosy today (excuse the terrible pun!). But please when you are feeling disheartened, disillusioned,frustrated,exhausted and tired of fighting read and then re- read the last 2 lines. I have also republished the poem my daughter wrote aged 9 as a "rembrandt." We never corrected the spelling to this day. In the same newsletter on page 4- "The Experience of a full time LSA" was written by Cara's (Mary) first special needs assistant. (See under resourses).

    WELCOME TO HOLLAND

    by
    Emily Perl Kingsley.


    I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

    When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

    After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

    "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

    But there's been a change in the flight plan. They've landed in Holland and there you must stay.

    The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

    So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

    It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

    But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

    And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

    But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

    Rembrandts.

    THE SOLAR SYSTEM BY CARA (aged 9)

    Really far out, away into space
    There lies our great galaxy, a really cool place.
    First there is Mercury a dead sunbaked rock,
    Then there is Venus that really is hot,
    Earth is the only one that is not dead,
    And marvoulous Mars is rocky and red,
    Jupiter has a great red spot,
    If you landed on Saturn you would way quite a lot,
    Uranuses rings go spin in the sky,
    While little blue Neptune gose passing by,
    And Plutos the planet that’s smallest of all,
    That sits in the sky like the tiniest ball.







  • Holly59
    Posts: 2,586
    Wow , where there is HOPE all things are possible. You have proved how very true that is.

    We need inspiration to carry on. Thank you Geraldine and Cara , you have shown us real hope for the future. You are absoluty amazing .

    Pat xx

  • Thank you Gerry. My youngest, she of the extreme behaviour, is a really fabulous creative writer too.
  • gerry
    Posts: 46
    Thank you both.

    To PlanetAutism - Cara'a behaviour was also "of the wall" but she went on to uni to study English, creative writing and journalism but pretty much did it from home. Her writing is unbelievable. I would say to channel your daughters writing talents as this is where Cara has excelled and found her niche. She owns and runs an Internet horror channel (horror being one of her obsessions/passions) and she writes all the blogs and stories featured.

  • Holly59
    Posts: 2,586
    I am delighted to announce that Jane Sherwin has signed our Petition and is spreading the word. Without reading her book I would have never worked out the PDA .

    Jane is also trying to promote awareness in her area , check out her blog.

    https://understandingpda.com/about/

    Pat xx
  • gerry
    Posts: 46
    Petition just reached 100 signatures. Awesome!!!
  • Holly59
    Posts: 2,586

    gerry said:

    Petition just reached 100 signatures. Awesome!!!



    Yay !!

    Susan Walls is a Policy Maker for Contact a Family in Edinburgh , Euan Robson was a previous MSP for the
    Borders who was the absolute " Star " in his dedication helping with the Petition. Explaining Asbergers and PDA is not the easiest thing to do. He has done a lot of reading and listening and Research .
    Jane Sherwin , the author and not forgetting yourself and your amazing daughter and Dr Hilary Dyer a leading authority and researcher on PDA.
    PlanetAutism bless her faithful as ever behind the scenes .

    Thank you all

    Pat xx
  • Brilliant, you are currently on 103. It's suddenly jumped up. Long may it continue. A one-woman (well, two-woman!) army starting all this.
  • Holly59
    Posts: 2,586

    PlanetAutism said:

    Brilliant, you are currently on 103. It's suddenly jumped up. Long may it continue. A one-woman (well, two-woman!) army starting all this.



    It's the front line stress from this army that no one outside in the real world understands. You have to " live " with Autism to understand it. No amount of reading books , degrees , Doctorates, Seminars , statagies will give you an understanding of the reality.

    Pat xx
  • Holly59
    Posts: 2,586
    Fantastic news we are now up to 152 signatures. Keep spreading the word, don't forget Partners, Husbands, Aunties , Grannies can sign also.

    We need comments on how it affects the person, their families , education , the appaling lack of understanding resulting in terrible vile court cases instead of the support and understanding we need.

    Pat and Mary xx
  • Holly59
    Posts: 2,586
    The Petition is going extremely well. Lots of huge developments behind the scenes . Mary has lots of paper based signatures as well .

    Just to mention that if you post a comment it won't show up immediately . It has to pass scrutiny rules like the actual Petition.

    If you need any help with your comment if you wish to post , just email the Petitions team, they are fantastic , very helpful.

    Thank you to all who have posted so far and keep spreading the word about awareness. We must find these children and young people not yet recognised , recognised but not yet diagnosed and diagnosed so we can help with Stratagies and support.

    Don't forget in Scotland under the Additional Support for Learning Act in Education you do NOT need a diagnosis.

    Contact Enquire or LEAD Scotland for further advice. The latter is extremely helpful from personal experience.

    Pat xx


  • Holly59 said:

    Fantastic news we are now up to 152 signatures. Keep spreading the word, don't forget Partners, Husbands, Aunties , Grannies can sign also.

    We need comments on how it affects the person, their families , education , the appaling lack of understanding resulting in terrible vile court cases instead of the support and understanding we need.

    Pat and Mary xx



    Speaking of terrible, vile court cases, have you seen this: http://michelledaly.blogspot.co.uk/2014/09/warrior-mum-finola-moss.html
  • Holly59
    Posts: 2,586

    PlanetAutism said:


    Holly59 said:

    Fantastic news we are now up to 152 signatures. Keep spreading the word, don't forget Partners, Husbands, Aunties , Grannies can sign also.

    We need comments on how it affects the person, their families , education , the appaling lack of understanding resulting in terrible vile court cases instead of the support and understanding we need.

    Pat and Mary xx



    Speaking of terrible, vile court cases, have you seen this: http://michelledaly.blogspot.co.uk/2014/09/warrior-mum-finola-moss.html


    It's a terrible blatant thing to say but nothing shocks me anymore, I have been left devasted broken hearted over the events with my children. I have apoligised for the despicable inhuman treatment they received by so called Professionals.

    We must encourage Political Parties to listen to our stories and come to the only positive solution , recognising PDA and encourage people to listen and learn about both the Autism Spectrum and Mental Health. We can't ignore these issues. They won't go away. A few tablets won't solve the overall problems . We have to think of the amazing knowledge that comes with Autism Spectrum , we are now seeing that Computer Companies are realising the WOW factor in their abilities. With a few adjustments , tweaks how the 16% employment rate could and will go up. It's down to education and getting people to listen and work together.

    One day soon it will happen. It's going to take years to get the right facilities and education systems and training everyone in place but as parents we can explain that the one system in Education does not fit all. All emergency workers, NHS , Social Services all must be trained. We can't live in the past of ignorance , we know best Society.

    As it was stated at the Glasgow Training Session , " The most rewarding experience was to see a PDA child get through the education system and succeed.

    It's the people who want to learn and help your children they are so so special .

    Thank you

    Pat xx



  • Holly59
    Posts: 2,586
    I want to show people the difference with some thoughtful adjustments to a course , there is not a lot of money involved , dedicated staff with very basic training from me and a lot of reading and listening on their behalf , often it can be just the information for teachers on the resources on this site, but I am sure the teachers who attended the PDA courses at Glasgow and Edinburgh over the past weeks it gives a true insight into the difficulties from both sides.
    This is a comment from one of my sons Tutors . It's the first time in 15 years of the Education System my son has been truly happy. It's hard work for him and me every day but to get to this stage takes teamwork , thinking outside the box, imagination, but this proves like the young girl all those years ago, what an insirational mum she had nothing to really support her she was the first in Scotland to be given a formal diagnosis by Elisabeth Newson
    .My son has been recognised as having PDA , there is no formal diagnosis because the area I live don't recognise PDA. Utter Madness . It's the first time this College has had a PDA student.

    I am a college lecturer and have worked with a PDA student this academic year and last. It was only towards the end of his first year studying with us that his condition was properly diagnosed, and he therefore did not benefit from any properly targeted extra support or appropriate arrangements. That he was able to complete the year and come through all the assessments is a tribute to the extraordinary perseverance of his mother, and the many sacrifices she made, to ensure his attendance. Now there is some properly targeted support in place, in the form of subject-specific one-to-one tutorials, he is making really significant progress. However, the support is only possible because his mother is paying for it every week. It is another example of the lengths to which she is prepared to go to give him every possible chance of success. If more support of this kind could be funded, as it surely should be, it would make a tremendous difference. I absolutely support the efforts to raise awareness of the syndrome, and hope that all relevant organisations will recognise the importance of investing in strategies which actually work.

    I don't do anything any other PDA parent would do. The team including a lovely caring thoughtful music teacher outside of College who gave me the first clues in PDA after a comments she made and the events and facts she told me did not make sense . I felt like Miss Marple solving a Medical Mystery but basically that's what it's been.

    Had previous teachers bothered to refer him and ask " Why " he was having issues we should have had the Autism diagnosis at THREE not SEVENTEEN. That way we would have saved the other young man from a tragic outcome which was preventable.

    Remember what Phil Christie and Ruth Fidler quote, " Listen to the Parents". You also have to listen to your child. Ask them what they find really difficult . I was surprised at the way he could explain. You must also be very truthful and honest with the Education staff. You must tell them immediately if something does not work, don't let the anxiety creep up with the possiblitly of School refusal . It's only taken 15 years to find the right place for him. Don't forget you can always return to College as a Mature Student in late twenties , thirties. Every day the awareness is spreading .

    I believe it's made a huge difference not having a specific mentor with him at College. That way he has been able to make friends. He does not like people only " Musicians" . Each child is unique what works for one won't work for the next. One system does not fit all. Education Ministers should start realising that their GIRFEC , Get it right for every child Policy does not work in their present system. It has to be really flexible to support each child. Every child is an individual and should be respected.

    Pat xx

    PS numbers are creeping up Its up to 186 last time I looked. Fantastic news. Thank you xx


  • Wonderful.
  • HarHer
    Posts: 346
    Hello Holly,

    Your post is so encouraging for me. My own son is experiencing a few difficulties at the moment and my hope for him in the future is that, if he wishes, he will take up an Access course and realise his dream to go to university to study in the field of Environmental Sciences or Meteorology.

    Sometimes I do despair that schools and colleges will not take a chance with my eldest or provide sufficient flexibility to help my youngest to access something more meaningful than the 'package' he is getting at the moment. However, once they have matured and recovered from the system, I can really see the potential for them in the Lifelong Learning sector.

    It is fantastic news about the petition.
  • Holly59
    Posts: 2,586

    HarHer said:

    Hello Holly,

    Your post is so encouraging for me. My own son is experiencing a few difficulties at the moment and my hope for him in the future is that, if he wishes, he will take up an Access course and realise his dream to go to university to study in the field of Environmental Sciences or Meteorology.

    Sometimes I do despair that schools and colleges will not take a chance with my eldest or provide sufficient flexibility to help my youngest to access something more meaningful than the 'package' he is getting at the moment. However, once they have matured and recovered from the system, I can really see the potential for them in the Lifelong Learning sector.

    It is fantastic news about the petition.



    Hi,
    It was his individual instrumental teacher who first raised concerns . Had she not spoken out and I had not seen Mary's press article I would never had worked out the PDA.

    It's the first time I have come across such an amazing team who really wanted to learn and help my son achieve his potential.

    Music has been inspirational in his life.

    Hope you get your sons education sorted soon. If I can help in any way please PM me. Only too happy to help.

    Met some awesome teachers at the PDA training day at Barrhead Glasgow. Absolutely inspirational .I felt humbled listening to the amazing lengths they went to to help PDA children and students . We need experience like this to be shared throughout the teaching proffesion.

    Pat xx



  • You're on 197 now, let's hope it keeps climbing into the thousands.
  • Holly59
    Posts: 2,586

    PlanetAutism said:

    You're on 197 now, let's hope it keeps climbing into the thousands.




    https://mobile.twitter.com/PDASociety/status/802421822834835456

    Radio 4 next Tuesday programme about PDA, another WOW.

    Superwoman Mary has managed to get some of our American friends to sign , she has been busy getting paper signatures with Hannah's help and then enlisted other folks to help tonight. Xx

    One lady I know was emailing folks at 3.30 am , bless her. Absolute Star xx

    Thank you once again.

    Pat and Mary xx
  • Holly59
    Posts: 2,586
    Exciting , another famous name has just signed Julia Daunt , inspirational PDA woman.

    Thank you !!!

    Jane Sherwin , Dr Hilary Dyer, Contact a Family Edinburgh, LEAD Scotland , Borders Carers, PDA Society Trustees , Julie Daunt ,just a few of the brilliant folks now involved .

    Yippee

    Thank you to everyone who has signed. Some of the comments are inspirational . We need your experiences .

    Thank you to everyone , please keep sharing .

    One of my lads was proper poorly at 05.00 am , ambulance had to be called. Ambulance crew went away with Clinicians Guide, leaflets and Petition info. Nurse 24 has the PDA lecture as did GP on call. He will need a weeks TLC , bless him he was so brave , gave mum a proper shock ., yet never miss an opportunity to spread the awareness.

    Each day brings its own challenges that's for sure .

    Mary and Pat xx
  • 212 signatures, that's fabulous. You are what someone has recently described to me as a 'force of nature' Pat.
  • Holly59
    Posts: 2,586

    PlanetAutism said:

    212 signatures, that's fabulous. You are what someone has recently described to me as a 'force of nature' Pat.



    Two signed from New Zealand , one Australia , one South Africa. Mary is getting some Americans to sign up.

    The message is certainly getting through, it's such a window of opportunity, please please support us.


    Pat and Mary xx




  • Yes, people have to remember that the pressure put on Scotland will filter through to other parts of the UK and other countries, it will be a global impact if the numbers go high enough. Some countries have not even heard of PDA, but the more this is shared and spread around the more will. The amount of parents out there crying out for an answer for their child's immense difficulties and extremely challenging behaviours alone is worth it, it's a huge relief to know what it is. The diagnosis must be validated everywhere.
  • Holly59
    Posts: 2,586
    Unfortunately the link for the Petition is not working at present, looks like a server fault. I am phoning the Parliament Petitions Section at 09.00 am .

    Will post an update soon.

    Pat xx
  • Holly59
    Posts: 2,586
    Petitions - Getting Involved : The Scottish Parliament
    https://www.parliament.scot › petitions
    Due to a requirement to carry out maintenance, the Public Petitions website will not be available from midnight on Saturday, 26 November until 8am on Sunday 27 November. ... Email: petitions@parliament.scot.

    It's obviously an issue at present . Most inconvenient and frustrating as we have some Mega Important influential people wanting to sign and comment.



    Pat xx
  • Holly59
    Posts: 2,586
    Just spoken to Petitions Department. Technicians working on fault. Apologies they can't give a time frame when it will be operational again , hopefully not too long.

    Pat xx

    Yippee it's working again.

    Pat xx
  • Holly59
    Posts: 2,586
    https://mobile.twitter.com/ALLIANCEScot/status/803643308102688768

    For so many of us it's too late. The Stratagies and Policies as they stand are ineffective . Good point raised about going across the board to other departments like Education, Social Services.

    It's all talk though. The massive investment is not there . My experience of CAMHS , utterly clueless. They are not preventing mental health issues but causing it.

    It needs a Department set up for specifically for Autism. We are still working through issues and finding new issues that need a diagnosis for my boys.


    https://www.change.org/p/scottish-government-give-children-with-disabilities-the-support-they-need-in-school?tk=Z_LhwZ4ysjp_Cxm_lJ7rMNnMqpNg1w8v7fAh5Llu2wU&utm_source=petition_update&utm_medium=email

    Answer from Scottish Governemt to lack of Support. Go through the complaints procedure, ask at Enquire then Govan Law Centre.

    Children's Human Rights do not exist. GIRFEC. Absolute joke, should prevent mental health issues not cause them due to lack of proper support.

    What utter waffle this woman comes out with. It took THREE months for someone to return my call. Would like to know why CAMHS only diagnosed One out of Six issues between my boys. The list is ongoing as we learn more.

    I have a lot of people to Thank for trying their utmost to fob me off, including threats, because there was a one million per cent more effort to cover up than to recognise and diagnose the issues in my boys. Because of their attitude and behaviour the Petition to Parliament evolved.

    Horrendous does not even begin the horror story.

    Who is going to look after my boys once I am unable to or have died. Shall I put your name down Minister?

    It's just too damm late .

    http://www.bbc.co.uk/news/health-38146394

    Same in England. One in four anaeroxics are Autistic. Another enquiry but it never changes. Councils blame Government , just goes round and round .

    Families utterly destroyed. I have been reading some of the families comments on PlanetAutism
    latest blog about Social Services , CAMHS , Judges, absolutely heartbreaking. Autistic children taken from loving parents because of a disgraceful lack of understanding of the Autism Spectrum.

    We have to get people to listen to our stories and get PDA formally recognised. There are too many lives being destroyed and it could be so different with the correct support and Stratagies as we have heard about the girl in 1998 with such a brilliant outcome. We parents need support as well . If it had not been for this Forum and Jane Sherwin amazing book I would not have the answers and Stratagies I have now.

    Please please continue to spread the awareness about PDA and help us it formally recognised in Scotland . We need your evidence to show the Committee the true facts.


  • Holly59
    Posts: 2,586
    http://www.bbc.co.uk/news/education-38145058

    It does not explain about School refusal and Autism Spectrum due to severe anxiety. Try explaining sleep depravation to a teacher who does not understand, the sensory overload at school and the pressure cooker effect. The list goes on forever. With teamwork and understanding how different it can be.

    Delighted another parent has signed from the United States after learning about the issues of Asbergers and PDA.

    Writing about the Petition in my Christmas Cards, never miss an opportunity!!

    Thank you to everyone who has supported us . It's been an extremely difficult week for both Mary and I for different reasons , it's knowing that people out there understand what we as parents and most of all our children have to cope with every day.



    Pat and Mary xx
  • Holly59
    Posts: 2,586
    http://www.bbc.co.uk/programmes/b083p88h

    Hope you listened to this programme, if not it's a must !!

    Fabulous awareness .

    Pat xx
  • Holly59
    Posts: 2,586
    http://www.positiveautismsupportandtraining.co.uk/laura-kerbey

    Laura Kerbey from Positive Autism Support and Training has posted a fantastic submission emphasising diagnosis for Children, Teenagers and ADULTS.

    Where can an adult get a diagnosis!!

    A sincere Thank You.

    Don't forget Laura Kerbey has training days arranged in Perth Scotland end of January. The parents Carers session is very reasonable at £60. Lots of others around the zcountry including Northern Ireland.

    http://www.positiveautismsupportandtraining.co.uk/training-dates-and-booking-info

    Just recognised another name from Contact a Family Edinburgh.

    Thank you and please please keep spreading the awareness .

    The signatures and comments do take a wee while to come through, don't panic if you don't see them immediately. They may be a tad behind after the Computer maintenance at the weekend into Monday.

    Pat and Mary xx

    Thank you to a special lady who helped behind the scenes . xx

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