Many children struggle with developing speech and communication after an infantile spasms diagnosis so UKIST directs some of our resources to support parents in this area – we have a rolling speech and language course with free access for all support group members and we have been running small group sessions to introduce parents to Makaton – a language programme that uses signing, speech and symbols to help people communicate.
Group member Huma shares her experience;
“I recently attended the virtual Makaton course. My son, Izzi (2 years) is preverbal and has recently started a specialist nursery using Makaton on a daily basis for communication. They advised me to also start learning to maintain consistency during the week. The course was very helpful in learning the basics and what struck me the most is that it’s actually so simple and you do not need to sign every single word in the sentence! To have a child who is preverbal is hard, I cannot deny that. I usually have to gauge what he is trying to communicate or how he is feeling and although I usually get it right, I can also get it horribly wrong. I’m just waiting for the day for him to say… “Mama”