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Everything posted by freebird

  1. Thanks guys, I feel so sad that of course Martin's dear Fam have lost their loved one, and they will need all their strength to support each other right now at this very sad time. And it goes without saying that this community on here has also lost a dear, caring and helpful campaigning brother x Jan, I've messaged you hun x
  2. PLEASE RE DIRECT THIS TO THE APPROPRIATE THREAD GUYS, THANKS. I was so sad to read my emails this morning. I haven't posted for a while because Family life took over etc. When I first joined this forum I was at my wits end, not knowing which way to turn and Martin and you regs, helped me no end in so many ways and I will be for ever grateful to Martin and this forum. Please convey my good wishes to Martin's dear Family at this sad time. (((X))) I live in Liverpool so if anyone from the Forum is going to Martin's funeral, I am happy to join you or indeed go on my own. Please DM/PM me if I can join you in remembering such a sound, caring guy x Glen, Liverpool.
  3. I was saddened to read my emails this morning to hear this very sad news about Martin. I send my good wishes to his family and prayers for you all to get through this very sad time (((XXX))) I live in Liverpool and if anyone is going to Dear Martin's funeral please DM/PM me. Love Glen in Liverpool
  4. sorry for the delay, family illness again... Yes if you have a reasonable relationship with him/her. Any professional who we think are on the same wave length as us, would be a good person to initiate the TAC. Good luck and stand your ground. We and our children are entitled to this way of working... x
  5. Freebird..... Lynyrd Skynyrd YouTube - FreeBird-Lynyrd Skynyrd-Lyrics Included
  6. I just wanted to start a thread to explain how we go about getting an effective Team to work around our children with disabilities. I've struggled, still am. Especially with my little'uns traumatic transition into Junior School having 3 different ESA'a introduced to her in 1 week. ( I'm on their case and heavy dialogue is ongoing ! ) The Government is intructing all Children's Service Teams in LA's to work in a Team Around The Child way. Using Person Centred Plans and Person Centred Reviews. You and your child can initiate this and set a team up. Choosing a Key Worker who's role will be to ensure that any action required by professionals attending the TAC meeting, is carried out. The Team will jointly make sure that our children's needs are met and professionals who are in out child's team will be accountable. You firstly need to talk with which ever professional you are in contact with, who has a good attitude and feel comfortable with. Then discuss with them, the setting up of a Team Around Your Child. I do everything by email now to keep as evidence of dates, actions, requests, replies etc. ( My LA hate me ! )but I don't give a stuff as after years and years of battling, like yourselves, enough is enough now. They totally let my 23 yr old son down, and I'll be dammed if they're going to let my littl'un down too. When the Team kicks in it should ease some of the constant battling we have with every service, Ed, Health and Social. We will still have an input and nothing is done without ours or our childrens consultation and approval. But the theory is that everything will be done with our child in the centre of their own plan and / or review. We can set the agenda, select the venue for the meeting and invite who we and our children would like to be on the Team. I'm in the process of doing all this. A professional has volunteered to be our Key Worker and we have chosen a team so we are now organising our first TAC meeting for my little'un. Owing to her high needs, Down Syndrome, ASD/ADHD, as with her past few statement reviews, I will just ask her to attend the last 5 minutes of this next meeting so that she will be included. As she gets older, hopefully she may stay longer and have some input ! We struggle so much on our own, banging at doors and being labelled as the difficult parent and very often having partners or spouses who don't offer much support or are in denial of our children's needs. For our children who are in mainstream, inclusion isn't a cheap option and as they are closing down so many special schools and are forcing Parents to choose mainstream, they have to put in the resources and training to make it work. With Team Around The Child they will have various professionals working with a common goal to have our child's needs met and as a Team they will have more 'clout' to GET THINGS DONE. Get on board all the professionals who your child needs a service from, here's an example of the Team I have set up. Me, Key Worker..( Ex clynical psycologist from the Autistic Pathways ) School SENCO ESA ( when we finally get one !) Comm Ped Occupational Therapist Ed Psyc Speech Therapist Parent Partnership, Parent Forum Co-Ordinator Social Worker This can be adapted to fit your own requirements and you invite who you think would be appropriate. If your child is very young an Early Years Practitioner would be good. Enquire as soon as you can because the sooner we get these Teams set up the sooner we can de-stress a bit and not feel that we are alone in our plight to have our children's needs met. If school's an issue, phone Parent Partnership in your area, as they will know all about Team Around The Child and how you can initiate it for your child. A Good Health Visitor should know too. Thanks for reading this long post, I just wanted to share the TAC idea with you all. Freebirdx
  7. I'm wondering if it depends on the Local Authority, but as far as I'm aware, warm front and similar grants can only be given to house owners. Teneants of local housing authority or any other social landlords don't qualify. I just thought it was woth mentioning because I went down that route as we had noe heating in our house for many years with just one gas fire in the living room to heat the whole house and even with disabilities the grant making companies would not help us, as we live in a Council house. Luckily we had heating put in two years ago and I honestly don't know how we lived with out it for all those years. Problem now of course is the bills...... with all this rainy cold weather it's been on and off when the weather changes.. Little'un has very poor immune system and is frequently ill so need to keep house steady temperature etc. I think that there is some help with bills this year, I'm looking in to it.
  8. Emma PM me with your contact info I'm in Liverpool too. Don't post it here though. Freebird x
  9. Cidergirl, Do you remember when your son was 11 and the LA statemented him, for having learning difficulties and behavioural problems, what did the statement say about him receivng support from a learning mentor/Educational Support Assistant. Was his statement reviewed every year. Were there ever changes made to it to accomodate your son's needs ? I am just curious why they never assesed him for ASD/ADHD when he was 11 or anytime between then and 17 ? I'm also curious what the statement was given to him for. Do you feel that having the statement helped him in any way. I get so mad with schools when they let our children slip through the net because of their attitudes and complaicency. We ask them for help and say that we know that our children need help but they don't listen. It seems like there needs to be a review of the Statement, especially as there has been a dual diagnosis. It looks like your sons needs now are much greater and different than when the Statement was first written. The Governement has told Local Authorities that they have to work in a more person centred way with children and young people and they are instructing professionals to work in a Team Around The Child. This way a person centred plan or a person centred review can be done for your son. It can be very informal and your son can choose who attends the meeting. Everyone looks at your son's needs, what your son like and dislikes, what he would like to do with his life, and who he would like in a Team to help him to meet his needs. You and your son are very involved but it's then up to the professionals to make sure that your son's needs are met. You can request for a person centred review of your son's statement. You need to discuss all this with someone who you feel, listens to you. maybe a health visitor, social worker, youth worker, some one in school, the SENCO perhaps. They will all be aware or person centred planning and the Team Around The Child. Does he have a connexions advisor, because they will be able to initiate this for you. Print this off and take it to them, they can get the ball rolling. You need some support with this. I went through it with my eldest son with cannibis and he only came off it when he saw his friends really ill and getting locked up etc. It shocked him in the end and when he realised it could be him,he gave it up. But we had 5 years if hell before that. He was permanently excluded from school and I need pages to tell you it all, but believe me, now he has a job, partner and two gorgeous 2 yr old twins. He still struggles sometimes but he's getting there slowly but surely. There is light at the end of the tunnel. I struggle now to have my youngest daughter's needs met. She is 8 with Down Syndrome/ASD/ADHD, so I truly know where you are coming from. Hope this helps freebird x
  10. Sharan, my daughter has Down Syndrome/ ASD/ ADHD, so I have an idea where you're at. If you look in the thread about Statements of SEN you will see all the stuff I wrote about the Team Around The Child and this should ideally be initiated in early years. Contact the numbers below and see if Wigan has an Early Years Team who you can talk to. I got these numbers of people in wigan who might be able to help you also, ( worth a chat anyway ) Wigan, Shirley - Tel:01257 421302 or Steve and Josie Brodrick 01942 748301 - Wigan, Lancashire Wigan, Ann, PARENTS IN NEED, Tel:0800-917-6790 - Wigan, Lancashire Sure Start Opening Hours 8:45am - 5:00pm, Monday to Friday Phone Number 01942 206205 Children and Families Service (0-11) Gateway House 7 Worsley Terrace Standishgate WiganWN1 1XW Hope this helps a bit. Freebird x
  11. Hi Lesley. all good advice here so far... LA's are reluctant to give out statements for various reasons but my own cynical view is that a statement is a legal document and if they do not deliver the services stated, they can be sued...... We all know that they frequently don't deliver and the anguish caused through legal action, delays, jargon, lies and bad attitudes is set to wear us down..to make us give up.. Of course that's my cynical opinion from personal experience. Here's another option. The Government is instructing LA's to work in a Team Around The Child Way. I'll cut to the chase. You can request that a Team is set up around your child. You can choose the Team with your son . You can choose a Key Worker who will pull the Team together and make sure that they work together to meet your child's needs. You and/or the Key Worker can initiate a Person centred Review of your child's progress. This might not be the answer to your Statement request but it should be an effective way of getting a good Team of people working together around your child, to meet his needs. A good place to start would be to talk to which ever professional in your son's life, you feel a connection with. Health Visitor, Speech Therapist, Teacher, SENCO, Social Worker, School Nurse, Comm Ped, ...any one from your local Parent Partnership, or Early Years Team...... Have a think who you feel shares your concerns re your son's needs. I'm a Parent/stakeholder on our local Team Around The Child College and we deliver training to profesionals, working with our children. We train them to work in a Person Centred, Team Around The Child way. They will all have to, so this concept is not unknown to professionals they just need to put it in to practise. When you get a key worker and the Team Around The Child set up, it will take some of the stress off your shoulders, having to chase everyone and sort everything. You will still be part of the Team but professionals will be accountable to you and services will be more needs led for your son rather than service led. I hope this helps. Freebird x
  12. Jan, which Theatre was it? If you don't want to post for legal reasons, PM me. Would you be prepared to copy in North West Disabilty Arts. NWDAF - North West Disability Arts Forum - Disability and Deaf Arts Organisation I know Ruth Gould one of the Directors there and Ruth delivers disability awareness training. Ruth is their creative director and I feel sure that she will be interested to know about this discrimination and also their disgusting attitude.. Have a look at their web site, Jan. They are such a good organisation and promote arts for people with disabilities, through out Liverpool and the North West. They are based in the Bluecoat.
  13. Sharon, Seftonview offered some good advice there. Your health visitor or GP are the best, but if you really want to chat with other women there are forums to do this. I am not in a position to say if these forums are good or not but to save you searching here are a couple you could try. Pregnancy after miscarriage : Discussion Board soFeminine - 31 August The Miscarriage Association - introduction Look after yourself and rest. don't make yourself ill with all the worrying. Freebird
  14. George from past experience, when my Mum had her car vandalised several times motability made her pay for the damage when she took it back. Consequently I've opted twice now to purchase on motability finance for my daughters car and pick up the bills myself. Two smashed windows, I claimed on insurance for paying the excess. But someone recently told me that motability are now more flexible with leased cars and you don't have to pay for damage when you take it back and also the mileage allowance is higher too. I'm going to check this out, but not in a position to swap cars just yet.
  15. Great resource this thread, thanks. Here's a few more: grants for disabled children fAMILY fUND help with , holidays, washing machines etc..... Contact a Family - for families with disabled children: information on rare syndromes and disorders signposting, campaigning, info, resources etc. http://www.cerebra.org.uk brilliant news letter with all sorts of info, grants, and very helpful with DLA http://www.edcm.org.uk campaigning, empowering parents etc. JOIN UP Fledglings » Welcome to Fledglings! help finding equipment etc... CRELLING HARNESSES harnesses, seat belts etc for children/adults with disabilities/SEN Down Syndrome Education International useful resources for differentiating lessons/curriculum and general info on education for children with DS I'll add more when I have time Freebird x
  16. Jan, that doesn't surprise me..... I'll pm you with something I'm organising with the manager of the new aquatics centre, for children with disabilities..x S/V I'm quite an active Parent, campaigning and pioneering when I can. I am now the SEN Governor in our school and I've been 'making waves' for 18 months now. 4 years ago I found out that they were changing my daughter on the floor of the nursery with just a changing mat, but in the same room as the other children. I made it my mission to make changes and that's what I've been doing ... We now have a ground level toilet, which is suitably adjusted etc. We now have entrance ramps and rails etc at entrance to school. We are just completing a sensory room. All perimiter gates are locked and we are having a new security system installed. School trips and visitis are now better planned taking in to account children with disabilities and SEN. Lessons/curriculum is now differentiated to meet all abilities....... I'm not saying I was responsible for all of this but continuous chipping away is paying off and people's attitudes are changing for the better. I'm also involved with lots of other voluntary groups re disability too. I realised a long time ago that the World is too much for me to take on, but if I chip away when and where I can, I will effect some change hopefully.
  17. just for the record here's a useful link Baywatch Campaign - Home Page
  18. Firstly, well done for taking on a Fat Cat and winning, regardless of the amount involved or conditions( that's your business) You chose to share it with this group and you join others in giving inspiration to posters who may want to claim them selves. Thank you. Everyone is entitled to an opinion of course but if they choose to post on a particular topic they should have some knowledge of the topic or at least have an open mind and learn from people with personal experience and living knowledge. On other forums I have seen heated debates re, politics/religeon/football etc.and all posters contibute with their own personal opinions and loyalties. Providing it stays respectful it can be healthy banter. Disability is another issue entirely and although well informed opinions can add to a debate, personal views from people who are not disabled should remain respectful. Only when you ar some one close to you , lives a life of disability, can you say if you feel discriminated against. Fom mine and my daughter's personal experiences of disability, discrimination is not usually a one off event. It can be institutional, and ongoing. Myself and my daughter were born with impairements but it is society and the environment which disables us. The whole debate about buildings/companys/schools makiing 'reasonable adjustments' is a joke and the Government should quantify the word reasonable instead of pussy footing around Fat Cats. ( Our school made a 'reasonable adjustment' they put in a disabled toilet........but you have to go up 3 steps to get to it! ) Locally we have a Tunnel which goes under the River Mersey. If you have a blue badge you can get a fast tag which is electronically picked up going through a barrier. This system allows you so many toll free tunnel journeys. Supermarket chains could use 1 million of their huge profits to put in a similar sytem affording tag holders 52 or so visits. It wouldn't take much for all the chains to get together to implement this between them. Designate the bays, put a barrier up, issue tags to blue badge holders. They DO have the room and if not they just buy it as they do when they want to extend..to add a garage, or cafe, or clothing section.....they have the bl--dy profits lets pressure them to using it. A £30 billion supermarket chain made an underlying pre-tax profit of £2.8 billion. I don't need to say which one, but it's one of the biggest 3. this particular Chain is also a member of this body Direct Enquiries - Feedback To Companies You are invited by them to leave feedback re disability polycies etc. this is a link to my local supermarkets who have signed up to the directenquiries but if you click on the link, althouth 1 of the big three chains is supposed to have registered, they have not given any acsess info ? Direct Enquiries - Search Results: You are searching for 'Supermarkets' in 'Liverpool'.
  19. Okey Doke, I was de pinked after falling off line with IT probs, and how ! So I wasn't available to help out much. Between the IT probs and family health it's been a stinker of a year to be honest. But I'm gradually getting back, up and running x
  20. Don't despair Mirien, this site is brilliant and someone from the site team will pick up your thread and help you out, just hang on in there chuck. Don't make yourself ill with worry, you'll get it sorted Freebird
  21. SSL were you pink when I was pink ?
  22. Hya SSL has that always been your name or would I know you as another name ? Freebird x
  23. Hya again Martin and well done on your stamina mate. 3 muskateers eh. I'm only just catching up on posts and it's taking me for ever reading everything. Looks like you've been through the mill again, pal, Chin up you're inspiration to us all Freebird x
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