Next Event - Please see Calendar section

2006 February

Survey - What would you like BAPG to do?

Do you know something really useful?!

BAPG Calendar 2006

The calendars have been a very successful money raiser. At last count, BAPG has received over £230 in donations for them. Thanks to everyone who made a contribution! Back to top

Survey - What would you like BAPG to do?

Thanks to all those who have completed a survey form. They're really helpful in understanding what we all want BAPG to do. The main themes in the responses so far are that there's a lot of interest in BAPG setting up a Kids Art Club (to run next to Parents Meetings), a Holiday Club and in providing more help around emotional support for parents. If you haven't completed the form yet, please do! Make your views known. It'll just take a few minutes. If you need another copy of the form, please contact any of the Steering Committee. Back to top

Teen Art

New Street is looking for a teenage-friendly picture to front a new leaflet they're producing. They'd very much appreciate it if any of the older children in the group would like to produce something. You might like to know that their new corporate colours are teal green and burnt orange, so something that would complement these would look great. Please send your pictures to Eleanor Ingram at New Street Child and Adolescent Unit. Back to top

Financial Entitlements.

Did you know that you may be able to claim Disability Living Allowance for your child? It's not affected by your savings or existing income, and it is intended to apply to children with Aspergers (i.e. not just those with physical disabilities). And if your claim for DLA is successful, you may then be entitled to Carer's Allowance.
Receiving these entitlements has made a real difference to a number of families. For some it has enabled them to reduce their work commitments so that they can provide better support for their children, and others use it to pay for activities they might not otherwise risk. For example, they'd take the child to a restaurant even though there's a high risk that they may have to leave before the meal's finished, or buy equipment for a new sport even though there's a high risk the child may stop going (sound familiar?!).
And don't forget BAPG parents have been offered direct access to a Senior Welfare Rights Officer, Susan Oliver of Barnsley Welfare Rights Service. (Knowing how best to complete the DLA form is difficult, you're best getting some advice before tackling it). Sue can be contacted on 01226 775656 or susanoliver@barnsley.gov.uk. Sue has already been able to help a number of BAPG parents renewing DLA claims. Back to top

Respite Care.

Another "did you know "! Barnsley Social Services, Child Disability team is able to refer families to the NCH for Respite Care. This may be just 2 or 3 hours per fortnight, but it could make a big difference! Back to top

Do you know something really useful?!

Each family in BAPG has a highly individual experience with getting help for their child. It?s easy to think that because your family has learnt something (e.g. about services in Barnsley) that everyone else must know about it. But we probably don't! Each family often stumbles across information that other people remember to mention, or think might be useful. Thus we all have a patchy understanding of what help is around!
That's where BAPG can help! If you've found out some useful local information, service or help etc., then please let BAPG know. We'll then make sure other families can use this information. A quick email or phone call from you could make a real difference to other helping families. Please contact James or any of the Steering Committee (contacts below). Back to top

Parents Meeting 18th January

Our planned guest speaker was unable to join us due to ill-health. Her talk has been rearranged for next month.
Instead, we held a group discussion about parents' dealings with professionals. We were lucky to have with us Andrew Charters and Ruth Coppard (for those who don't know, they are Consultant Child Psychiatrist at New Street, and Psychologist at the Keresforth Centre respectively) to hear their perspective on what works in such meetings. It was a very positive discussion, with lots of good ideas about how to approach meetings with professionals. The main points and suggestions raised were:
· Try to recognise that the first time that you meet a particular professional that they may not have a clear agenda of what will happen. Different parents have different expectations, and the professional will be trying to judge what help you're looking for.
· So that means - parents have more power than they might realise. You should feel free to speak out to say what you're trying to achieve.
· Try to think about what you're trying to achieve before you go to the meeting.
· Think and plan about the time in the appointment. Check how much time you are being given. Decide how many questions you want to cover. Outline these at the start of the session to give the professional a chance to plan their responses and cover all the points.
· Make a list of what you want to cover. It's easy to forget in the meeting. If everything is covered, then you're more likely to feel satisfied with the meeting.
· Feel free to take note in the meeting if you want to.
· Be happy to ask about jargon. It's easy for a professional to use a word that?s very familiar to them that you don't understand. It's also common for a professional to use a commonly used word but which has a precise (e.g. medical/educational) meaning to them. Don't let yourself be unclear, ask them to explain.
· Try to learn some of the jargon, as this can earn some greater respect from some professionals.
· Remember that you're paying for this service!
· Aim for a collaborative approach: let's work together to solve the problem (even when you're unhappy with the service). This is likely to get a better response than a complaint.
· If a professional isn't providing you with the service you'd expect then it's not personal to you (or highly unlikely to be!). It's much more likely that they're constrained by the system they're working in. So equally try not to blame them as individuals, they'd probably like to see the system improved as much as you.
· You can try escalation - if you're working collaboratively with an individual but something isn't being done (that you're think should be) then try contacting the head of the organisation to get things moving. (This can be particularly useful on matters of policy, or where the organisation's departments aren't co-operating - issues that the individual professional may be powerless to influence).
· Read between the lines - professionals often feel that they cannot be negative about another professional or organisation. So listen to what they're saying that's positive, and listen out for what they're not saying!
· Enter the meeting in a positive frame of mind, as you're more likely to achieve things.
· If the meeting isn't going well then say so! Say that you think the meeting is not on productive ground.
· Don't assume that the professional has remembered all the key facts (e.g. from a previous meeting). Be prepared to repeat (i.e. in a non-judgemental way).
· You're there to help your child. You want to do your best. So no question is too stupid to ask.
· Use the professionals - use their knowledge and contacts in the system to help with wider problems.
With respect to schools in particular:
§ Try to understand the basics levels of help (school action, school action plus etc).
§ Try to know your school - who does what, SENCO, Special Needs Governor etc.
§ If the school doesn't recognise or understand the child's problem then can take in an independent person to school meetings
§ Feel free to apply to move schools, as this is quite easy to do in Barnsley.
§ But how do you judge whether the new school will be any better? Ask the views of other parents (particularly those with AS kids), go meet the SENCO and ask how they'd deal with a child with AS, do they have a good attitude / understanding of the issues?
§ Parent Supporters - you may or may not want to take them with you to a school meeting, but could at least least try "buddying up" with other parents, to rehearse arguments etc.
§ Alternative curriculum- If a subject such as French is causing a real problem to your child, can they do an alternative? Do they really have to take the subject? Or can it be taken in a different way (child reading or doing own path of work)?
§ If presented with a block, remember the question "Who do we need to talk to change that policy?"
§ Present a possible solution to a school. They'll probably welcome the idea!
§ Think about a situation from the teacher's point of view. What are they trying to achieve? What impresses them? Find something to praise them for. (We all go to schools with our complaints, but less so with our praise. Trying saying well done or thanks. It will help build a more effective relationship). Back to top

Future Meetings and Events

Friday 3rd Feb.

Conference: How does it feel?- Another way of thinking about Autism. To bring together people with personal and professional contact with people with ASD. Aim of promoting an open dialogue on how difficult it may feel when one comes up against autism.Location: Tavistock Centre, London. Organised by Autism Users Group of the Tavistock Clinic. Cost: £25. Further info: 020 8938 2548, events@tavi-port.org.

Sat. 4th Feb.
Funworld, Mapplewell (behind the Co-op), 4:30pm to 6:00pm. The kids launch themselves into the play area for 1½ hr, barely looking back at the parents. We get a chance to sit back, have a coffee and take it easy for once! It's a great chance to talk with other parents about the problems (and successes!) we've been having. It's open to all the children of BAPG parents and their friends. £2.50 per child. The normal height restrictions don't apply for this private event. Please note that parents remain responsible for the children they bring.

Friday 10th Feb.
Steering Committee Meeting, 10am to 11:30am, Wellington House. Please contact any of the Steering Committee if you'd like an issue raised or would like to come along. You'd be very welcome!

Saturday 11th Feb.
Seminar: Asperger Syndrome ? (1) Chris Mitchell's personal experiences of AS; (2) Speech and Language Therapists from specialist ASD service.Location: Hexham, Northumberland. Organised by: NAS Parent Seminars. Cost: £25 for professionals; £5 for each parent; free to individuals with ASD diagnosis. Further info: 0191 226 3614, marie.russell@nas.org.uk

Wednes. 15th Feb
Parents Meeting and Kids Computer ClubParents Meeting: Guest Speaker (postponed from January) - Rose Clark, Barnsley VAB - How to deal with professionals?. Having a child with AS means having to deal effectively with several organisations. At times this can be about quite difficult or emotionally charged situations. Depending on the individuals you meet this might go very well, or not! How best can parents approach such meetings to help make sure that our children get the support they needs? 6:30pm to 8:00pm Priory Campus, Barnsley. Kids Computer Club: Supervised club for children at Priory Campus held in parallel with Parents meeting. Intended for kids who are already able to use a computer. Each child uses one of a group of networked laptops. They can play as they wish: join in computer games across the network, website building, or follow their own interest. Places are limited so please call James on 01226 792571 to book a place. 6:15pm to 8:15pm

Sunday 5th Mar.
Seminar: Growing Up and Puberty ? Geoff Evans, Senior Lecturer in Autism, Sheffield Hallam University.Location: Oldham, Greater Manchester. Organised by: NAS Parent Seminars. Cost: £25 for professionals; £5 for each parent; free to individuals with ASD diagnosis. Further info: 0161 998 7860, suziefranklin@nas.org.uk

Wednes. 15th Mar.
Parents Meeting and Kids Computer Club

Friday 17th Mar.
Steering Committee Meeting, 10am to 11:30am, Kirk Balk School.

Wednes. 19th Apr.
Parents Meeting and Kids Computer Club

Friday 28th April
Steering Committee Meeting, 10am to 11:30am, Wellington House.

NB. All BAPG meetings are held at Priory Campus, Lundwood unless otherwise stated. Back to top