Planning for Transition - A school visit

So all the school visits are complete.   The questions I prepared were really useful but I was surprised by my emotional reaction to each visit.  I don’t suppose any parent truly knows if they have chosen the right school for their child but the choice was narrowed to one school

With the concept of “nothing about us without us” an integral element of inclusion,  an appointment was arranged for E to visit the school..  E admitted to being a wee bit nervous but didn’t show any of that on the day.  She was keen to see some classroom and specifically art and home economics.  She travelled round looking at everything, even subtly attempting to join in the art class.  She seemed interested and confident and asked questions as we went.  In every case, the responses from those we met was welcoming and friendly.  . 

All going really well I thought until E’s parting comment of what she thought:

  “Not for me mum”

Over a few days we have discussed why and it seems that size is the biggest factor, although she also thinks it’s way too early to even consider high school and she will miss her friends. 

There is a conflict between the need for the people who will make her schooling happen to have the time to plan and prepare for high school and the child being mature enough to welcome the move from primary. 

The balance of this conflict will be different for every family and the transition stage.  I would add it to a factor to consider as part of the preparation for transition.  Lucky for us, E is not totally rejecting the school and has  agreed to visit again over the coming years.

Low Tech Communication Approaches – Part 1

E has been using a computer based communication device for over 5 years now (here we both are discussing the choice of voice on Radio 4) with great success both at school and at home.  However there are a number of factors that mean that the device is not always available or the most appropriate or fastest method of communication. Through the support of the therapy team, ideas from the internet and E’s problem solving and patience we have developed a range of low tech tools and techniques for communication.

Sign Language

E’s fine motor skills are impacted by her cerebral palsy so tradition signing is difficult for her.  What she did though was create her own approximations to traditional signs which once shown , are easy for anyone to understand.  

Before she was able to read or write, this was one of her main forms of communication and she still uses many of them today.  The speech and language team helped create a book of signs for her to show to others.

 Specific Topic Boards

The team who develop the computer based communication were also able to make paper based versions of some screens for specific topics.  They are very restricted in topic but again allow E to communicate with others who may not know her so well.

This is her one for use at mealtimes.  She uses eye gaze (looking) to select the picture she wants.  This has meant that other people can help her to eat safe in the knowledge that they will know what she wants.

The boxes themselves use standard board maker signs.  I would recommend working with therapists to create them in the first instance to maintain that consistency of language and symbol.

I am going to write some further posts on the tools we are using now together with some we are experimenting with.  Please do share any tools or approaches you use.l

Fun Time Resources – Playing Cards

Sometimes in the midst of therapy, work, independent living skills practice and housework, E and I  just stop to have fun.   For us (following family tradition) that can  often involve playing cards.   
 

When it’s not just the two of us, then E and I will play together me holding the cards and discussing tactics together before a move is made.  If it’s just the two of us, then she needs to play her own hand.  Like any child, the level of game she is able to play and make decision on has changed over the years and we have a great wee solution that works from an early age, giving independence in deciding what card to be played.

There are a good selection of resources available for holding playing cards .  The one we chose was a table top design that allows the cards to be placed in a row, although 7 cards do need an overlap.  I love that we can have a proper game of cards without me ever having to see her hand. 

The cards can be placed in the holder without me looking at them, though it took a while to get the best spacing.  Then to play cards, we use a combination of eye gaze from E and pointing from me to select the card she wants.  The cards face her and I see only the back.  She can then narrow down which card by looking either to the right, the left or the middle.  From there, I point at the cards in that vicinity and she will say yes (verbally or physically) when I get to the one she wants to play.  

What E sees

What I see

The stand can also be used for picture based card games and the method of selection can be adapted to suit the communication methods appropriate to the child.  We’ve found it to be sturdy not toppling even on train journeys.  It can hold around 10 cards with overlap.

Carers Week 10 - 16 June 2013

A link to my guest post for carers week on what being a carer can sometimes feel like.

http://www.carersweek.org/about-carers/carers-blogs/sonia-s-story-health-and-wellbeing 

 I also wanted to share one of the great benefits that came from being carer for my daughter.

All my working life I’ve had a secret hankering to be a teacher.  To the extent that every job  I had, I found ways to incorporate teaching or training into the role.  I enjoyed being an accountant and just never felt confident enough to make the move.  I’m not sure what changed perhaps it was working to making things happen for E or perhaps watching her set her mind to something and then making it happen.  Either way I made the leap and here I am a maths teacher.

Unusual Sources of Help

In a previous time I worked as a chartered accountant.  Every year when paying my membership fee, I was asked if I would consider contributing to The Chartered Accountant’s Benevolent Fund (CABA).  Role forward to now and I’ve called on their help on a number of occasions.   I first made contact when my childcare provision fell through and I struggled to find a replacement.  They had a free advice line who kindly investigated the options available.  Then when getting a ground floor bedroom and wet floor shower room put in, they help with that.  During a bleak time for me, the help line was available 24 hours per day.  Finally last year, when  Bobath had to start charging for their services, they immediately covered the cost.  As you can see the services they offer are extensive and are open to anyone who is or was a chartered accountant and their family.

Since then I’ve discovered a whole host of other unusual sources of help.  Few offer the comprehensive range of services that CABA do, but many are able to cover a variety funding needs.  Many large organisations have them for both current and previous employees as do trade unions, professional bodies and the armed forces.  Also some memeber groups of friendly societies are able to make small discretionary grants.  

Finding them isn’t as easy as with CABA who have a dedicated web site.  A quick search under benevolent fund shows up plenty.   You can narrow it down to areas specific to you but it’s also worth a general level search in case you miss a category.  For friendly societies it’s the local member branches that tend to be able to help and you'll find details in their newsletters.

Each organisation will have different criteria, applications, limits and award periods so you cannot guarantee a quick outcome.  Because of that, it may be worthwhile identifying some that are relevant to you before you need them

If you have any other suggestions for unusual or perhaps unknown bodies who help, please share them in the comments section.