nellie Report post Posted December 9, 2005 ASD information booklet to give to parents at time of diagnosis. Hi folks, I need your help please. Our ASD parent groups are hoping to produce an information booklet to give to parents at the time of diagnosis. With your wealth of knowledge and experience I think you?re the right people for the job, I would value your input. What information would you like to see in an information booklet / pack? All suggestions gratefully received. If you do make a suggestion, could you say if you're happy for me to use it. Many thanks. Nellie xx Quote Share this post Link to post Share on other sites
elun1 Report post Posted December 9, 2005 Hi Nellie When our ds was diagnosed 2 yrs ago we got a brilliant folder which was put together by our parent support group. It has all sorts in it. Foreward is by the Paediatrician who gives diagnosis in our area, followed by a general overviw of ASD's and some of the challenges they may bring. Other sections include useful websites and addresses, local and national contacts for support plus a lot of other useful stuff. It was a lifeline in the weeks following diagnosis. If you want me to photocopy and send it I'd be more than happy to. You could email me a suitable address to send it if you like. Elunx Quote Share this post Link to post Share on other sites
annie Report post Posted December 9, 2005 (edited) Hi Nellie, I think a note explaining that parents will go through the emotional roller-coaster when their children are first diagnosed, and to let parents know that this feeling is normal.......grief, anger, self-blame etc. Leaflets explaining AS/ASD/Autism. Jargon Buster - so many letters ie. EP/LSA/DLA etc. get thrown at parents, nobody explains to parents what these stand for or what an EP does. Contact details for NAS/ACE/IPSEA (always handy ). Contact details for Parent Partnership, explaining what they do and how they can help parents. List of helpful books/websites. Hope this helps. Annie XX Edited December 9, 2005 by annie Quote Share this post Link to post Share on other sites
oracle Report post Posted December 9, 2005 Brilliant Idea Nellie And one which we have been exploring ourselves, although parents here do get a booklet, which has got lots of contact numbers etc and is pretty comprehensive. What our booklet lacks, in my opnion, are the things that parents of newly diagnosed children may never have heard about. The one thing that most parents who call me know very little about are the sensory issues. I feel that as this can be a HUGE part of the condition it should really carry some information with it. Of course this is just our area and other areas may include information on sensory issues. Also what has happened here since the booklet (the product of the Out Reach Team) was given to parents, is that they ALL appear to ring the local support group, so that they can speak to another parent and ask the questions that they may not be comfortable asking the professionals. So possibily as list of number and contact timesn (really important to include this) for parents willing to spend some time just talking to the parents. Carole Quote Share this post Link to post Share on other sites
Brook Report post Posted December 9, 2005 Hi Nellie, Great idea. I think I would suggest a section on how best to explain to other family members who may have a hard time understanding, it would also help with the new dx for the parents. This is not through personal experience as I was very fortunate that all my family had a degree of understanding, but on reading others posts some are not as fortunate and it can create rifts and upset in families which obviously is the last thing you need when you have so many emotions to deal with. Maybe a section for this would be good, or an accompanying leaflet for them to pass on to family members. Brook Quote Share this post Link to post Share on other sites
Kazzen161 Report post Posted December 9, 2005 Brief description of DLA, Carers Allowance and Family Fund. Also that DLA/CA can affect your IS/tax credits. Where to get the Code of Practice from. Parent Partnership contact, if they are any good. Support Group contacts. I've done a sheet of useful websites re: ASD, other associated SEN, Education advice services, jkp site, how to fill in dla form, etc for our group. Karen Quote Share this post Link to post Share on other sites
Suze Report post Posted December 9, 2005 Just send them to Krism ............. ..........A list of good books to read, reading about the condition helped me. Quote Share this post Link to post Share on other sites
phasmid Report post Posted December 9, 2005 I'll dig out the paper I wrote last year on the importance of home/school relationships. I'll let you decide if it is any use to you or not. Quote Share this post Link to post Share on other sites
Lesley Report post Posted December 9, 2005 Something for siblings & carer support contacts Lx Quote Share this post Link to post Share on other sites
littlenemo Report post Posted December 9, 2005 mention anxiety in BIG capital letters somewhere - it needs to be taken seriously and parents need to know it is serious Zemanski Quote Share this post Link to post Share on other sites
phasmid Report post Posted December 9, 2005 (edited) Comes strolling into thread....(coughs loudly and gets into tune, la la la la la la la la la) "Tonight Matthew I am going to be that bloke from that film, the one about the russian jews with him from Starsky and Hutch in it and...." "Shut up! Just ell who you're going to be and what you're going to sing!" "(Flustered) Er....well...right....yes. Tonight I will be Topol and sing a reworded song from the film: Fiddler on the roof." Cue smoke and wavy TV type efffects..... "TRANSITION! TRANSITION.................." "Arghhhhhhhhhhhhhhhhhhhhhhhhhhh......THUD!" (Trapdoor opens and Phas plunges to dark depths below stage) Anyway, silliness aside I have also sent you stuff i have cobbled together regarding Transition....Oh, and if you were wondering the song from the film was actually called 'Tradition!' Oi! Whadya all mean I can't sing and shouldn't have bothered...my mate Simon Thingy off the telly...............(walks off muttering to myself about Oscar nominations and record deals.......oh sigh!) Edited December 9, 2005 by phasmid Quote Share this post Link to post Share on other sites
Kathryn Report post Posted December 9, 2005 Post 16 information. Quote Share this post Link to post Share on other sites
smiley Report post Posted December 9, 2005 Phas Quote Share this post Link to post Share on other sites
Elanor Report post Posted December 9, 2005 Local information - the clinics, the specialists and how to access them, the schools team - EPs, communication teams, autism specilaist units. In our area there's lots of teams and units for this and that, each with their own referral system, and they don't talk to each other, and the parents don't know they exist. Quote Share this post Link to post Share on other sites
Lesley Report post Posted December 9, 2005 DLA info! I only found out about this from another parent! Lx Quote Share this post Link to post Share on other sites
phasmid Report post Posted December 11, 2005 I have been giving this some serious thought. Would it not be possible to put together a full blown parents guide? Obviously things change as new laws and so on come in. The way around this might be to do this 'file-o-fax' style so that sections could be updated as needed...an ongoing resource! Quote Share this post Link to post Share on other sites
Ian Jordan Report post Posted December 11, 2005 feel free to use anything from any of my books re visual aspects - will happily supply copies if wanted Will be happy to write simple background for parents (vision causes many problems in ASD and sensory integration difficulties - a lot of them unsuspected by parents!) There is a phenomenal amount that can be done from my pespective, sadly I can't see many children, but empowerment can be really helpful for parents. Ian Quote Share this post Link to post Share on other sites
smallworld Report post Posted December 11, 2005 errmmm ? www.krism.org.uk ? that should do wac Quote Share this post Link to post Share on other sites
poppy Report post Posted December 11, 2005 We really need some sort of "Guide" book and I think the best people to give parents the hope that there is a future is other parents who have been through it. Our local group had started a parents helpline ,but I wouldnt want to ring and have a winge as I know there is always someone worse off than you!!!!!!!!! Must admit feeling pretty fed up with being an Asperger family at the moment. Dont know which is most stressing son being at school or at home. Quote Share this post Link to post Share on other sites
oracle Report post Posted December 11, 2005 Hi Poppy We have an unofficial parents line in our Authority (my number) I may sometimes have to call parents back but don't be put off calling them. Parents often ring me to winge and I in retun ring them if I need to winge. We don't always have the answers for each other but we do have an understanding and that is priceless. It works well for all of us Carole Quote Share this post Link to post Share on other sites
Kathryn Report post Posted December 12, 2005 We really need some sort of "Guide" book and I think the best people to give parents the hope that there is a future is other parents who have been through it. I agree with this as we really felt on our own, especially after having had a private dx we did not know how to tap in to any kind of support or information source. I realise how invaluable the internet has been in helping me through absolutely everything - I think any booklet must take into account parents who do not have this resource. Quote Share this post Link to post Share on other sites
smiley Report post Posted December 12, 2005 I agree with the file idea - but it's a fine line between really helping and completely overloading parents, especially if they didn't see the dx coming. I've been trying to think of what would have helped me. A very straight forward and easy to read explanation would be good. So many people on here find out that our children can have a high pain threshold, can have huge sensory problems.... A little bit about things that can be comorbid... Tony Atwoods book should be free on prescription How many of us have sat and read that one just after dx saying....'Mine does that....and that....AND that!! And definately Krism! Speaking to other parents is increadably helpful. Quote Share this post Link to post Share on other sites
elaine1 Report post Posted December 12, 2005 I would like details of groups, email and phone numbers. perhaps some kind parents who would be willing to speak to others and share their experiences too would be a help. also the numbers of any mediation services to liase with schools etc would bea great help. good luck with it Quote Share this post Link to post Share on other sites
nellie Report post Posted December 15, 2005 Wow, thanks for the input. Some great suggestions. Elun, Thank you for your support, I hope to access that information soon. Phasmid, Not sure if you mentioned transition? The way around this might be to do this 'file-o-fax' style so that sections could be updated as needed...an ongoing resource! My hubbie and I have produced a 120 page factfile in a 'file-o-fax' style for our local autistic society and the local authority has produced similar factfiles for children with special needs. The ASD Parent Group are thinking of a smaller version with specific information which can be given to parents at the point of diagnosis, parents who may not be ready to join a group or a society. I think one of our priorities is to signpost parents to support. We have a website, telephone contact and meetings. Phasmid, not sure, did you mention transition? Thank you Annie, I hadn't thought of the emotional grief that parents may suffer. Brook, I think I would suggest a section on how best to explain to other family members who may have a hard time understanding, it would also help with the new dx for the parents. I'm not sure how this can done, but I think it's a brilliant idea. I will give it some thought. Thank you. Ian, I'm still working on getting your message across I knew you were the right people to ask. Thank you. Nellie xx Quote Share this post Link to post Share on other sites
phasmid Report post Posted December 15, 2005 (edited) Now then....what was it I mentioned... Transport? Nope! Trans-siberia railway? Nope! Tran'sen'dental Meditation? (not a splelgin mistook...feeble joke attempt) Ohm Nope.... Come to think of it, it might have been (cough, la la la la ) (Oh no's rumble around the thread.....'he's not going to sing again is he? Please Noooooo...') "TANSIT...." Ow!! Oi! If your'e going to throw tomatoes, please take them out of the tin first Edited December 15, 2005 by phasmid Quote Share this post Link to post Share on other sites
sis9098 Report post Posted December 15, 2005 I would like to see something that helps guide parents in how to discuss this with their child. My son is only 7, but not daft. He has only just been diagnosed but he is picking up that there is something going on. Don't misunderstand, I know what level to pitch information to him, but not the terms and language. I have always been honest with my kids, but I could really do with just a starting handle on other peoples experiences of introducing their kids to the subject. That would really help! xx Sarah Quote Share this post Link to post Share on other sites
Valiant_Skylark Report post Posted December 15, 2005 Something to say that you may spend the next few years wondering if the dx is correct! A note to say that the "experts" can't agree on what Autism/ASD/AS is/are so try not to fret if you get lost and confused too. A note to say that "co-morbidity" really means "talk to everybody, listen to everybody, wriggle around in it, and, if the cap fits...wear it". Take from the muddle of information that which seems closest and seems to work. A note to say that if your DLA claim fails... try, try, and try again. A note to say that NTs can, arguably, be "disabled" in their inability to understand the world of Autistics. VS xx Quote Share this post Link to post Share on other sites
barefoot wend Report post Posted December 15, 2005 and something to tell you how lucky you are. Quote Share this post Link to post Share on other sites
phasmid Report post Posted December 15, 2005 Perhaps end it with a comment about keeping your sense of humour...you'r e going to need it! (sorry if my somewhat 'jokey' responses upset anyone - perhaps its my copping mechanisim!) Quote Share this post Link to post Share on other sites
