Information by Abigail Davison-Hoult – Rett UK Communication and Education Support
Many of us are by now self-isolating at home due to Covid-19. Even with neurotypical offspring, this is a challenge but for those of us with children, teens and adults with complex needs such as Rett syndrome it is beyond daunting. Talk of home schooling and endless lists of online resources are rampant on social media and hastily created WhatsApp groups, and whilst the intention is to be helpful, I know first-hand how this can send parents who are already worried, confused and second-guessing themselves into a spin!
Firstly, I want to stress DON’T PANIC about home schooling. We, for the most part, are not teachers or therapists. Add to that the feelings of unrest, worry and change to normal routine and it’s not a great mix. What you are feeling is normal.
Secondly, remember that the current situation is NOT typical for those parents who home school anyway. In normal circumstances, they (and we) could take trips out, see friends, learn in groups, visit places of interest and culture and so expand learning through experiences. Right now, these are not options. Covid-19 home school is not like a regular home school.
How are we doing it?
My daughter uses an eyegaze device, but it is slow work due to her various symptoms. Some days are great, but most days are tricky. Direct instruction is not usually an effective way to go about things and taking a more relaxed approach adds time. We have it available to her always and we model things throughout the day but it is very much a case of including her in discussions, reading her body language for her opinions and asking her to verify with a Yes/No look/look away when we need to check.
My son is of an age where although he can work independently, he still checks in a lot and needs my input to keep him on track. He is starting to help his sister with her learning and is becoming an awesome communication partner, but he is still young, and I do not want him to feel obliged to fill this role.
Whilst we will be doing some more formalised learning, using downloaded worksheets and books, for the most part I shall be doing what I can to help them learn through practical means whilst trying to keep us all sane.
For Science, we shall be planting seeds and watching them grow, we shall be baking and cooking – measuring and mixing ingredients also doubles as Maths. For literacy and English, we shall be reading story books and talking about them. We shall be colouring/painting, doing crafts and junk modelling.
We shall try to spend as much time outside as possible (please weather, cheer up!). I have my daughter’s hand program from school, and I have a peanut physio ball and I will try to incorporate some of that into the week. Both her OT and physio have sent me ideas for how to carry out her therapies in a way that will be fun for both kids.
On wet days we will choose a topic and paint pictures and learn about it through videos, books and the internet. We will splash in puddles – even if only for five minutes (and spend half an hour either side of that getting kitted out).
On dry days we will get into the garden and try to resurrect it after building work and winter storms have left it a mud pit!
I have also arranged with close friends and family members to Skype/FaceTime/WhatsApp video call regularly to actually see some different faces and keep in touch.
What does our day look like?
Of course, like everyone else, I still have to cook, clean, do the laundry, work, walk the dog etc whilst my husband is out at work (his job does not enable him to work from home) and although I like to think I can do it all, I simply cannot.
Ultimately, whilst I want my children to spend at least some hours each day screen-free, I recognise that I am only human and can only do so much. It is more important for us as a family to be as united and relaxed as we can. If that means relaxing normal expectations, then that’s fine. If it means that schedules are tweaked, that’s ok too. These are not normal times so why should we expect normality to reign?
However, I believe that structure and routine do help to frame a day and keep us all sane. For that reason, during this time, we are sticking to a timetable similar to this:
- Be dressed, fed, teeth cleaned and ready for the day by 09:00am (just to point out, my kids wake up really early so throwing iPads at them in their beds and going back to my own bed is what happens before 07:00am).
- 09:00-12:00 – No screen time. This has so far been met with resistance, but the small people will not break me, and I will stand firm. First thing we do is get outside for 20-30 minutes. It makes the rest of the morning seem manageable.
- 12:00-14:00 – Lunch and screens! We all need a little break by then and I need to get some work done.
- 14:00-16:00 – Screens are allowed but only for educational apps and games/programmes. Otherwise it will be story time, painting, going outside. We will still be visiting our local Forestry England woods and other open spaces. The National Trust has waived entry fees to open spaces for the next few weeks – more of these sites also have Changing Places toilets which makes them even better to visit.
- 16:00-17:00 – Free time. Time for the children to do whatever they like whilst I sort out their dinner, and then dish it up.
- 17:00-17:30 – Fresh air time, assuming we haven’t been out during the afternoon. Even if we have, it is likely my son will want to kick a football around again and I need to keep my daughter moving as much as possible so she can come out too.
- 17:30-19:30 – More Free time – I think we have all done enough structured time-keeping by then and it’s time to relax, shower/bath and be in bed for 19:30.
This is just how we are spending our time. It may or may not work for you but I like a routine and I think it helps all of us know where we are at. The children set timers on Alexa as a countdown to mealtimes and/or the next screen time!
Having said all this, I realise that many of us like useful websites to grab resources and ideas from so having trawled through these long lists, I have added- (in my opinion) the most useful (for people with Rett syndrome) links below:
Tobii Dynavox have many resources available on pagesetcentral.com. Here you can download pagesets for many ordinary activities at no charge. These resources are for Snap + Core First, Communicator 4&5, Compass and SymbolMate.
Their products Boardmaker Online, Reading Avenue and Accessible Literacy Learning for Windows provide readymade resources, online books and learning guides as well as the option to create your own. Windows Control is another piece of software available that allows one click access to most interactive websites via eyegaze technology.
Smartbox have a link here: https://thinksmartbox.com/product/super-core-new/ to a set of printable grids that you can download.
Liberator offer some activity ideas and supporting information here: https://www.aaclanguagelab.co.uk/activities
Other learning resources – not eyegaze specific but offering printable and downloadable activity and learning sheets:
- twinkl.com – use the code UKTWINKLHELPS for a month’s worth of free resources/lesson plans
- https://scratch.mit.edu/ – this is a coding site for children to create their own games and animations which can then be shared. These creations can also be accessed via eyegaze technology using Windows Control
- https://tarheelreader.org/ – a great resource for online books on a whole host of different subjects, again accessible via eyegaze technology. The books can either be read alone or together. Many are factual rather than fiction and good for home learning. If there is no book for the subject you want, there is the opportunity to write and upload your own!
- http://www.tuxpaint.org/ – this is an online painting tool again accessible via eyegaze technology using Windows Control. It is free to download and you can print your creations once you have finished them.
- https://ed.ted.com/lessons – For slightly older kids, these videos are educational and fun, and not too long so may keep them entertained whilst learning something too!
- https://www.oxfordowl.co.uk/for-home/# – there are free resources for ages 3-11 here on a wide range of subjects. The games and activities are accessible with eyegaze technology using Windows Control and there are guidance notes for parents (so valuable!).
- https://www.phonicsplay.co.uk/ – this app is widely used by schools in the UK for KS1 phonics. It can be accessed via eyegaze technology using Windows Control.
- Good old YouTube is useful for pretty much any video snippet you can think of.
- BBC iPlayer has Watch on Demand links to shows such as Horrible Histories and Operation Ouch!
Many of the parks, museums and art galleries are also offering online tours with information: