Guest Post - Syngenta Juvenile CP Squad - Guest Post

This month marks the one year anniversary of our first cerebral palsy football event.  Within that year we have gone from strength to strength gaining the support from the SFA and Scottish disability Sport.  Both of these are very exciting, but not as exciting as the players becoming the first ambulant cerebral palsy grass roots football team in Scotland. To celebrate our 1 year anniversary the players were presented with their Syngenta Juvenile kits representing full integration to the Syngenta Juvenile family. 

Our team is unique, every person involved understands the daily struggles involved with having cerebral palsy and during training sessions these difficulties disappear.  The focus here at little Kerse, where we train, is on ability, team work and recognising individuals strengths. Training involves working hard developing and learning new skills, learning about the clubs history, game practice and most importantly having fun.   There is fantastic skill and commitment demonstrated every month but most importantly there is always laughter. We may well have some future stars here and finally they have the platform to shine.


Anyone interested in finding out more about playing football with a "disability" should follow the appropriate link:

Scottish Football Association
Welsh Football Trust

For an overview of the various team structures together with details of teams throughout the UK, try disability football.  And if all you want to do is go watch football then the try Level Playing Field in England and Wales of the club direct in Scotland.

Friendships

As I’ve mentioned before, E will not being going to her catchment high school, which means none of her friends from school will be going with her.  Over this year, we are aiming to develop opportunities for E to create some new friendships with those she will be going to high school with.  The school and ed psych are supporting us in this and we hope to meet in the next few months to look at creating a link with a feeder primary school.  To supplement that, we are also looking into after school activities both in the community use part of the high school and other places attended by the cluster school kids. 

This has made me reflect a bit on friendships and the changing dynamics of those between children with additional support needs and those without.  Chatting to other parents, it seems many found  it relatively easy to create opportunities for children to play together and for relationships to develop.  Children always seem very open to this and accept whatever adaptations need to be made. 

As the children get older, and start to develop independence, things become more challenging.  Children start to enjoy the independence of playing without adult supervision, often outside on bikes and the like.  E wants to join in, but she’s slower and less independent than them.  She’s still included but the children have to adapt their activities more to make that happen.  It’s the same for after school clubs, many of which are based around physical activities which become harder to integrate as you get older.

There are other barriers too.   As E’s helper I am learning to give the support she needs while blending into the background at the same time.  Going to someone’s house is not as straightforward either as access is a bigger issue both for the wheelchair and E getting to the toilet.  She’s never had a sleepover other than with family as the difficulties of lifting and transfers seem to daunting.

 Now add into this mix the changes that all children around this age go through and the idea of building new friendships feels a real challenge to me.   I should say that E is a friendly girl who is confident that she has friends and has the personality and empathy to make new ones given the opportunity.

It would be good to hear from anyone who has successfully been through a transition like this and your own thoughts on the changing dynamics of friendships.

Switch Accessible DIY

We tried a new piece of equipment for E this week.  It looks very promising but once again the price is high and we will be touring the charities for help if our local services can't fund it.

It got me thinking though about how much disability equipment and adaptations cost.  I understand the high development costs for a small market is the main reason for this but I'm often struck that if the price was lower, the market would be bigger as the need to source outside funding for a purchase would be reduced.

These high prices are not sadly restricted to large pieces of equipment and often toys which are lower costs have prices increased by over 100% when adapted for additional needs.  So in this time of financial strains for everyone, I thought it worth looking into what we can do ourselves.

We were lucky when E was small, the team who supplied E with her switch technology had a great member who would happily adapt any toy for no cost to use.  Noddy was a great favourite and the switch adapted remote control Noddy car was a hit.

A trawl of the internet revealed a number of good resources on how to go about making adaptations to different types of toys, including the following:

Cause and Effect Toys

Battery Operated Toys

and all the necessary equipment can be obtained in  Maplin and other similar stores. 

You can also buy ready made kits for battery operated switch adaptations here.  

If even this is too daunting for you (it is for me) ask around, you may have family or friends who love this kind thing and would be only too happy to help. 

If you've adapted any toys yourself, or had adaptations done, I would be really interested to know how you got.

School Review Meeting

When I undertook training on inclusive education over 8 years ago, school review meeting were often viewed as horror stories for parents, where they were told about decisions rather than been involved in making them. 

Since then, things should have improved and a review of the legislation and code of practice for supporting children’s learning sets a very positive expectation.  Getting it right for every child (GIFREC) focuses on creating a common approach across all agencies aiming to deliver appropriate, proportionate and timely help as it is needed.  It also looks to take a holistic view involving the young person / family fully both in the assessment and the solution.  Enquire  have excellent resources, both online and by phone, to help with review meeting and all aspects of additional support needs in education.

To my understanding the focus of these meetings is everyone working together to deliver the right support at the right time.  Unfortunately, looking through other blogs, discussion with other parents and even my own experiences, things can still go wrong.    I thought it worthwhile to reflect on what makes a review meeting work for me, and what supports me when things don’t go to plan

I’ll be honest and say that I’m quite proactive and assertive in review meetings.   I will usually have a list of items that I need covered and will have touched base with the therapists prior to the meeting to ensure that their actions and input is being submitted if they cannot attend.   I appreciate this is not for everyone but I do think having key issues written down beforehand helps keep me focused and at times less emotional.

Having someone on your side in a meeting is really important I believe.  For me, I know there are a couple of key therapists and the ed psych who understand what the overall outcome we want for E and will work to help achieve that.  They can be very helpful in communicating an idea or action in a more technical way than perhaps I can.  They also act as an extra pair of ears.  Your supporter does not have to be someone within the team, you do have the right to bring an advocate with you. 

I strongly believe that a review meeting should contain no surprises.  It’s difficult for anyone to come up with ideas, agreements or solutions if they are not aware of a problem beforehand.    Obviously the key to this is communication and this does take time to build up from everyone’s perspective.

As E moves up through school, and especially into high school, the people and level of involvement of the people at these meeting will change.  I would be really interested to hear your experience of review meetings, positive or otherwise, to help maintain and further improve the effectiveness of such meetings.

Out and About – At the Theatre

So for those of you living close to Edinburgh you will know that the Festival and Fringe is upon us so I’m taking the opportunity to look at theatre provision.

Ticket Costs

The policy for tickets in the major theatres appears usually to be wheelchair and companion get tickets at cheapest available price.  During the Fringe and Festival, the ticket policy is left to each venue and many will give either a free carer ticket or tickets for everyone at the lowest ticket price.    

Wheelchair Accessibility

These are based on our personal experience, if you can add to this please comment either in the post or on the facebook page.

MacRobert, Stirling. 

The wheelchair seating in the main auditorium is at the front of the rear seating this gives a clear unobstructed view from a standard child height wheelchair.   There is companion seating and other seating in the same row, or the one behind for a larger group.  Their space has removable seats at the front so restricted access.

Festival Theatre, Edinburgh. 

The wheelchair seating is at the back of the front stalls and is spread across the row, meaning that companion seats are available.  We’ve been as a group and had others sitting both beside us and in the row in front which worked well.  There is a slightly raised platform which helps with the view but for children in a standard height wheelchair  you will still need a boost in seat height.  The theatre do not have booster cushion but were able to supply some cushions.

Churchill Theatre, Edinburgh

The wheelchair seating (space for 3) is at the front of the back stalls, in the middle with companion seating at the sides.  If you are in a group you may end up slightly separated.  The seating is slightly back from the front stalls and right in the middle which really helps to avoid obstructed views.  However, one wheelchair space is a bit low for a standard height child wheelchair.  Again they do not have a booster cushion but were able to supply blankets.

The Playhouse, Edinburgh

Wheelchair seating is at the back of the grand circle.  It is set back from the main seats and this gives a clear unobstructed view from a standard child height wheelchair.  A companion seat is available and there is seating in the row behind for larger groups.

New London Theatre, London

The wheelchair seating is at the back of the seating.  Access is via the stage door and uses at least one odd shaped lift so is not suitable for all wheelchair sizes.  The seating is slightly raised but for children in a standard height wheelchair  you will still need a boost in seat height.  The theatre have booster cushions available.

Autism Friendly Performances

Thank you to The National Autistic Society Scotland for the details on autism friendly  performances available.

Cinema

Cineworld, Picturehouse and Odeon cinema groups have autism-friendly screenings throughout the UK, as do independents like Eden Court in Inverness, MacRobert Stirling,  the Glasgow Film Theatre (GFT) and Glasgow Grosvenor.

 

Theatre

Disney’s The Lion King Playhouse Theatre, Edinburgh  on 24 November 2013.

The changes being made at this particular performance include modifications to booking process, performance and the theatre environment. The theatre’s foyer will have designated quiet and activity areas, staffed by autism experts throughout the performance should anyone need to leave their seats. There is also an autism-friendly website and booking system has been set up specifically for this performance

Glasgow Giffnock's Eastwood Theatre are currently planning an autism-friendly performance  of Children's Edibles by Grinagog Theatre for December 18th. NAS Scotland is currently awaiting further details, but it's expected to be a non-verbal performance for a young audience of up to 25.

Her Majesty's Theatre, Aberdeen are planning a 'relaxed' performance of Cinderella on January 3rd 2014. NAS Scotland has not worked directly with the theatre on this production. For further details please contact the theatre directly.