Saturday, 18 July 2015



Siblings of children with special needs or disabilities have a unique childhood.  Anna is Jess's little sister and has just turned 3. Occasionally she comes out with something that makes us do a double take:

When an ambulance goes by with it's siren on, Anna asks if Jess is inside it.

When Anna plays 'Doctors and Nurses' at nursery, she tries to give the other children medicine into their tummy buttons [Jess has all her medicines into her gastrostomy]

When she plays 'Doctors and Nurses' at home, the plastic forceps in her medical kit is out on the patient's finger like an oxygen saturation probe.
please note the "oxygen Probe"!!
When told that Jess has a hospital appointment, Anna expresses a preference as to which hospital and ward she would like Jess's appointment to be on, depending on which toys in which playroom she would most like to play with that day.

When Anna hurts herself, even if it is just a tiny scratch, she will try and work out who can come to look after Jess, while I take her to the hospital.
But Anna is also very caring towards Jess. If she is at nursery or at a party, and there are presents or cakes being given out, Anna will always ask for an extra one for her sister. Anna will always come and get me,if I'm not in the room and Jess is upset. She will also go up to Jess and ask her if she is OK, and she very often wants to help when we are looking after Jess, by helping us set up her feed, or helping her get dressed. It is lovely watching their relationship develop, and both enjoy singing and dancing sessions together [with Jess in either her wheelchair or the hoist] and watching "Frozen" many times over.



Tuesday, 7 July 2015

Learning to read

It is four years ago this week that Jess was officially diagnosed. The last few years have been so incredibly difficult, and I think we are still adjusting to how completely, utterly different our life is, compared to what we anticipated.

If you had told me 6 years ago that my daughter may have to learn to communicate with us using an Eye Gaze Computer, I would have been devastated. Yet now this looks like an actual possibility, I am ecstatic.

From early on, both myself and my husband have been sure that Jess understood most of what we said to her, and, given the opportunity and the ability, she could demonstrate this. For example, just after Jess was diagnosed, she would often choose the same bedtime book. The last page of the book contained pictures of lots of different animals at a party, and when we asked her where each animal was,she would either reach out with a hand, or lean forward and touch the correct animal with her nose. However, you have to give Jess extra time to respond, and you have to look for her response, as it may not always be obvious. This can mean that not everyone  who meets her, believes that Jess is fully aware of her environment and what goes on around her.

However, last year I heard the amazing Susan Norwell speak at the Rett Education conference. She showed a communication technique using a low tech device which I was able to make at home. It was a flip chart with the alphabet on it, as well as YES and NO symbols.

 I use this device by going through each page individually with Jess, asking if the letter she wants is on the page facing her, and getting her to indicate YES or NO using the symbols. Then when she says YES, we go through letter individually, and get Jess to indicate when we get to the letter she wants, again using the YES and NO symbols. When she has identified the letter she wants, we write it on the whiteboard.

The first time we used this, I showed her how to use it by spelling her name [Jess, not Jessica - I felt that may be asking too much!] I did the 'J' and the 'E', and then she did the 'S' and the second 'S' on her own! She already knew how to spell her name and just needed a way to express it.

Jess and I showed the Speech Therapist at her school how Jess could spell her name. She was amazed, and immediately put into motion what needed to be done to order Jess her own Eye Gaze Computer, as this provided her with enough evidence that Jess would be able to use it to it's full potential. Given how slowly everything in the public sector usually works, Jess hasn't yet got the computer, but we have been reassured that she will get it soon.

In the meantime, Jess' school have been doing lots of work with her, teaching her the letters of the alphabet, phonics, and spelling. She is doing so, so well. Every week we get a message home from school saying how well she is doing:

"Jess did fabulously with the letter 'T' again today"
"A great [letter] 'D' session today"
"Today we continued with the 'M' sound. Jess now knows all of the words that start with the letter 'M' and will indicate YES or NO, when asked 'does __ start with the letter M?' She scored 12 out of 13!"
"Correctly finding 'A' things in the magic box. Really good eye pointing, and looking back to tell me YES or NO. Watched us modelling writing 'A' words, very vocal and animated session" 
"Brilliant 'S' work today. Really laughed at Spot the Dog, and our real snail in the garden. Jess had some strawberries as well! Fantastic Jess, you are a star!"
"Found all the 'D' words. Looked back at me and smiled and giggled. Not confused at all. A really good animated, and focused session today. Well done Jess".

Every week the school are doing a different letter. Some of the sessions are with the Speech Therapist and some are with the teaching staff in her class. However, I think the sessions that Jess enjoys most are the ones where she works with children from the mainstream school that her school is attached to. The staff have created a little study group for Jess, where a group of children from the mainstream school next door to her school come and work with Jess, and spend time doing activities around whatever letter Jess is working on that week. The children understand how Jess communicates, and the staff say that she is even more motivated than normal in these sessions.

I have to say that two years ago when we were looking at schools for Jess, this is exactly what we wanted for Jess. A school that believes in her, and can see her potential, and will work to make sure she achieves this. And a school that gives her time and interaction with the children from the mainstream school- this was, and is, so important to us.

Jess is so amazing, she copes with so much, and yet thrives. We are so very proud of her.