The Talking Journey Continued: Tactile Cueing

I first wrote about Ronan’s struggle to speak (at least in any way understandable to the rest of us) when he was just over three in this blog. Ronan will be five in a few months and that journey continues. Ronan now talks a lot, but we still struggle with understanding what he is saying. Unlike with a sighted child in which there is often some shared visual context, Ronan could be talking about almost anything. He might naming the toilet that is flushing in the neighbouring terraced house. He might be talking about the slide we went on during … Read more

Bonding with your blind baby: Little Amber

I do not think we’d be alone in remembering back to those first two years with Ronan and the challenges of trying to figure out what worked for our blind baby. It never seemed to be what was written the books for other babies. While we had lots of smiles, we also had lots of tears that left us wondering what to do as new parents. We gradually built our connection with Ronan through music. We sang and sang and sang some more. We played with music toys and wrote musical stories for him. Indeed, Ronan, now almost five, has … Read more

Get Cycling

We live in a city in which 50% of people commute to work by bicycle at least once a week. Indeed, we rely solely on bicycles to get around. In a city so full of bicycles, we see daily how many shapes, sizes, and configurations they can come in. Some imaginable and some way beyond imaginable. We’ve been thinking for some time about what should be Ronan’s first bicycle. Ronan can spend hours in our front garden climbing up onto the seats of our various bicycles to ring the bells. Our bicycle park is like another child’s jungle gym with … Read more

Night, Night with Perkins Panda

A goodnight story is ingrained in me as something that a parent does with their child. However, Ronan has resisted any book and would always close the book if one tried to read it. Christmas brought Perkins Panda to our house and that goodnight story to our bedtime routine. Perkins Panda is a series of three books along with a matching stuffed bear (or rather Panda). His nobbly nose can be felt in the first book as well as on the bear. The second book keeps Ronan busy getting him to fill up Perkin’s backpack with accoutrements for a picnic … Read more

The Orange Juice-ness of Orange Juice

About two months ago we attended VICTA’s Early Years Weekend at New College Worcester. We had the opportunity to attend a workshop by Gwyn of Positive Eye. She spent a lot of time talking about and demonstrating how you get the -ness of an object: the spoon-ness of spoon or the shoe-ness of shoe. I spent the last month pondering how we could do this with Ronan. As much as Ronan loves playing with the world – flushing the toilet, turning on the washing machine, climbing up and down his chair – it is hard to engage him in more structured, … Read more

The Amber Trust: Music for blind and partially sighted children

The Amber Trust is a charity set up to fund and support music for blind and partially sighted babies and children. Their tag line is that music is a life line, not a past time. They fund instruments and music lessons, as well as provide advice from engaging a blind baby with music to the complications of getting braille music arranged. Eighteen months ago I very tentatively sent an email to the Amber Trust lead, Professor Adam Ockelford. I asked him what should I do with my child who sang constantly, had taught himself to play piano, but was totally … Read more

A Mobility Lesson with Daniel Kish

If you haven’t heard of Daniel Kish, then watch his TED talk. He is most famous for his use of Flash Sonar. This is a form of echolocation, the navigation mechanism of bats, in which the reflection of sound waves is used to navigate. Alongside Daniel’s spectacular skills in this area, he also advocates for an expectation of complete independent mobility in blind children. While I had thought my expectations were high, I realised that they could go a lot higher. Ronan had the luck to spend a day with Daniel when he was visiting a group of children in … Read more

Getting to those first words

Ronan made his first word like utterance at the age of 15 months. It sounded like “ge”. Maybe it meant yes or maybe again. By the time Ronan was 2.5, he had a sound for yes, no, and a very clear, “again”. At three, Ronan was still not talking.  Now almost 3.5, the sounds and language are coming quickly. Here is our story to getting those first words. We took Ronan to the Developmental Vision clinic at 19 months to get their advice. They told us that he should do more container play. Despite our best efforts (see blog), we … Read more

Anopthalmic Socket Expansion and Cranial Osteopathy

                If a child is born without eyes (anopthalmic), then socket expansion is recommended. An expander is put into the socket, which gradually expands, creating space in the tissue to enable a false eye to be fitted at a later age. The more important aspect, according to our doctors, was the role of the expander in helping the face grow symmetrically. After several failed attempts in socket expansion (leading to no less than 7 general anaesthetics in Ronan’s first year!), we were desperate for other alternatives.  The doctors continued to highlight to us … Read more

Ronan’s transition from cot to bed

Ronan has recently reached three and we knew that we couldn’t keep him in a cot much longer. One day he would discover he could get over the side and we’d be in trouble. Yet, we could not imagine how we’d keep him in a bed. He tended to sleep wedged into one corner with his feet in the air. As the night would progress, he’d make his way around the different corners without any sense of their being a top and bottom of the bed. We’d never had any success keeping him in the bed with us either, as … Read more