Thursday, 30 May 2013


Jessica will be starting school in September. For any family this is a huge milestone, and the process of choosing and applying for schools, and wondering if your house being 0.1 of a mile out of the previous year’s catchment area will make a difference, is all very stressful.
But add a disability and/or special needs into the mix and the process just got a whole lot more interesting. Inclusion, segregation, resources; everyone seems to have an opinion on this – regardless of whether they have any special needs experience or even know Jessica. Comments such as “but she has to go to a ‘special school", “it’s not like she can learn anything”, or the other extreme “but surely your daughter isn’t disabled enough to need (whispering very quietly) a special needs school?”
In theory it could have been a difficult decision, but actually, it turned out to be a pretty easy choice. Jessica loves the chaos and mayhem of being around her mainstream peers, both at home with friends and her cousins and at nursery. But she does find this environment distracting, and when she has learnt new skills they are often evident at home a few months before she is able to demonstrate them at nursery. Her needs are also very complicated, and while she is clearly very able to learn, she needs the right equipment and people around her in order to access activities.
We looked round a variety of mainstream and special needs schools, and we have just found out that Jessica has been allocated to our top choice of school. We are really excited about this, as it seems like the perfect choice for her, and we really do think she will do well there.
It is a special needs school attached to a mainstream school, and pupils from both schools mix for playtime, assemblies, lunch etc. Some lessons are also mixed between the groups of pupils, so Jessica will maintain contact with her mainstream peers. However, the school has the skilled staff and the equipment that Jessica needs to access education and activities. More than that though, it was the atmosphere at the school that we loved – it felt like one big family. The staff are so passionate about the children, and as proud as any parent would be of what the children achieve.
Jessica had an appointment at the school the other day (it was nothing to do with the school, it was just coincidence that the appointment was being held there) and all the staff came out to see Jessica and say hello, and to say how much they are looking forward to having her there in September. The appointment also coincided with the end of lunchtime, and we saw all the children being escorted or pushed in their wheelchairs from the playground into their classrooms by the children from the mainstream school; it was so lovely to see.
We now have a few meetings set up with the staff at her new school, Jessica will visit a few times before September, and we are going to be given some pictures of her new classroom and teachers, so we can talk to her about it over the summer holidays.
And then a new era begins!

Monday, 20 May 2013

Friday, 10 May 2013

She is just a typical 3 year old girl

Sometimes, well quite regularly actually, Jessica tells/reminds me that inside, underneath all the Rett-ness, she is just your average 3 year old girl.

If Jessica wants to request something; a book, a toy, a drink etc, she will look at what she wants (we are trying to get her to then look back at an adult to make it more obvious, although she doesn’t always do this) or she will reach out with her hand and touch what she wants.

I don't like saying "no" to Jessica when she has asked for something, given the effort it will have taken her to be understood, and I obviously want to encourage her to initiate communication. However, sometimes circumstances and time constraints mean I have to.  Consequently, I can find myself saying things like “No Jessica, you can’t watch television, you need to get ready for nursery” or “No Jessica, you can’t play with your toy at the moment, you need to eat your breakfast”. And then I catch myself. These are normal interactions between  parents and their children. There must be thousands of parents saying those exact lines every morning!

More recently, Jessica was getting really upset at breakfast time, and I couldn’t work out why. Eventually I realised that it was because we were giving Jessica’s little sister Cheerios as finger food as well as her porridge, but we were just giving Jessica her porridge. I was worried that Jessica was upset that she can’t feed herself, but no. As long as I put some Cheerios in her porridge, she is happy. She just didn’t want to be missing out!

Every morning Jessica will choose what top she wants to wear from a choice of 2 or 3. However, I can normally predict which one she will pick. It will invariably be the one that is the most pink, or the most girly, or the most sparkly one on offer! Whilst shopping the other day, I let Jessica choose her new shoes – they were all of the same style but in different designs. These are the shoes that she chose:
She is just a typical 3 year old girl inside. We just need to find more ways to allow her to communicate it.


Wednesday, 1 May 2013

Switch Toys

About a year ago, our Speech Therapist suggested that we start getting Jessica to use “switches”. I will admit that I had no idea what she was talking about at the time!  I now know that switches are used to perform a variety of functions; allowing users to “talk” by using a switch that another person can pre-record a message onto, or to  control a whole variety of equipment – TVs, radios, cameras, computers, ovens, kettles, wheelchairs etc. They come in a whole variety of shapes and sizes and are used by children and adults who don’t have the cognitive, or the physical, ability to talk or use technology in the conventional way. Given that Jessica can’t talk or use her hands very well, this approach definitely seemed worth a go!
The Speech therapist advised that the best way to start with switches is to use switch-controlled toys, mainly to teach her cause and effect. Jessica had a trial with one that the speech therapist had, and she understood it immediately, so we then went ahead and bought her one for her third birthday to use at home. It is a monkey who squawks and bangs his cymbals together. A year on, it is still one of her favourite toys, and although she has progressed to using switches in other contexts now (I will write another post on this later), her switch monkey is always a popular pastime. There are so few activities that Jessica can do by herself without needing assistance, but this she can do without help and I think that is its attraction.
We will sit Jessica at the dining table and she will play with her switch monkey while we are getting her dinner, or washing up etc. It can get a bit annoying after a while (you will see why if you watch the video below!) but on the few occasions I have turned it off and asked Jessica for a break for a few minutes, she has immediately turned it back on with a very defiant expression on her face!
However, the other day when Jessica was playing with her switch monkey, she managed to pull the actual toy towards her, and she began to give it a hug. It was then that I realised that we had made a fundamental omission – we had never given the actual monkey to Jessica to hold or to touch- we had only ever given her the switch and put the monkey in the middle of the table out of her reach. It turns out that not only does she love playing with the toy and the switch, she also loves the monkey itself!!