We read to our children from very young age. Our daughter turned into an avid book lover, with an advanced reading age. What about Thomas though? Thomas has Profound and Multiple Learning Disabilities. He can’t read, and he has very limited understanding of speech, so can he enjoy books?
We continued reading to Thomas at bedtime, like we always had with our daughter. We used the same picture books we had with her. Over time, we found that Thomas was obviously recognising the books, and some words in them. With familiar books he’d laugh at the end. We also noticed he could anticipate parts. In his favourite, “The Monkey With the Bright Blue Bottom” there are two parts where a bear shouts in it. As we start to reach those parts Thomas begins blinking in anticipation of the louder parts.
We use an e-tran frame for some communication with Thomas, where he can make simple choices through eye pointing. We now have laminated cards for each of his regular bedtime books so we can offer him a choice of two books to be read to him.
Although Thomas is happy listening to any story, and enjoys familiar ones, his enjoyment of literature can be enhanced by the use of sensory and massage stories.
For anyone unfamiliar, sensory stories are short stories where a different sensory stimulus is usually used after each line. I discovered these when Thomas was two, after coming across Joanna Grace on social media, who has written many sensory stories and also written a book on them. https://www.thesensoryprojects.co.uk/sensory-stories
We got her story Cocoon initially, which tells the story of a butterfly emerging from a cocoon. You can see photos of Thomas enjoying the story towards the bottom of the page from Joanna’s website on the link above.
We’ve since bought a number of Joanna’s other sensory stories and two are particular favourites. One, Puddle involves putting ice in Thomas’s hand. Thomas has little reaction to putting things in his hand and his hands are often quite clenched. However, with the ice his hand moved out to the side and he opened it, dropping the ice. Now he laughs in anticipation at the line before.
At bedtime we have the story Dream. A lovely story about how I had dreams for Thomas before he was born. I have made a picture card of a red heart for that one and show it to him before we start. He smiles at it and often laughs. He can laugh throughout the whole story! I’m not sure that’s quite supposed to be the effect of it, but that’s Thomas for you. (For those not familiar with him, he laughs a lot!)
Thomas also enjoys massage stories, which I discovered a few years ago and bought him the Story Massage book for Christmas. https://www.storymassage.co.uk/
As Thomas can’t sit up unaided then I massage him on his chest when lying down. We use Twinkle Twinkle at bedtime, just before Dream, and he also enjoys Animal Friends, which he’s most familiar with. Again he laughs, usually as we get to the end.
I have written my own massage story to prepare Thomas for his bath time. He loves a bath and the excitement in him builds as I do the massage.
Massage and sensory stories are really useful for preparing a child or person with complex needs for something that may be about to happen to them. If they’re built into a routine they can make the connections between the story and the next step. Thomas doesn’t necessarily understand the words of his “preparing for bed” massage story but he certainly seems to know it’s time for a bath.
Thomas himself will not be able to read in the conventional sense. However, he has stories uploaded on his eye gaze equipment. When he looks at the box with the story it reads out that page. He can then look at a box which will take him to the next page. Sometimes he can fly though a few pages with all the right sequences. Other times it’s a bit hit and miss. His sister will often recite the first page of Finding Nemo, as she knows it off by heart now, given how often Thomas has read that page!
I’ve also put some of Thomas’s sensory stories on there including an autumn related one, as that’s our topic whilst we teach him at home at the moment. I’ve created those so when he reads the line the next page automatically comes rather than him having to select next page. However, this has proved to be problematic, as he is racing through the story, possibly to get to the marshmallow at the end!
Thomas may never become the top reader his sister is but he is definately a lover of literature like her and he has a wide variety of ways of enjoying it.
You can see Mary Atkinson from The Story Massage Programme explain more about massage stories during the online PMLD Conference in January 2022, which is organised by Joanna Grace. Tickets are only £5. https://www.eventbrite.co.uk/e/the-pmld-conference-ii-tickets-183490664517