A Parent's Path: Syeda’s Makaton Story

Syeda with her family

Syeda with her parentsOur beautiful daughter Syeda was born in 2016. As she grew and developed, we realised that she was missing certain milestones and after repeated trips to the doctors, nothing serious was identified as the cause.

Then at 11 months, she suffered a fit whilst struggling with a cold and flu. What happened next would change our lives forever. What little progress she had made regressed, and we were told she had Global Developmental Delay and suffered Febrile Seizures. After seeing a Neurological Paediatrician, we finally got a diagnosis of Spastic Cerebral Palsy, Epilepsy, and Global Developmental Delay.

Speech was one aspect where we really struggled as a family. We were told she may never talk and that we should prepare for that scenario. We moved back to the UK and set up lots of private appointments with different hospitals.

It wasn’t until Syeda was 3 1/2 years old that we were told about Makaton by our amazing Early Year Support Worker, Mel (Sandwell Council). She set us up for a taster session for parents with additional needs children. Despite Syeda being so young, we used Makaton and it only made a slight impact. I was worried and reluctant to continue this journey as I thought it might be an impediment to her speech. After being convinced by my husband, we both decided to give this journey everything we could. We both enrolled privately onto Level 1 and Level 2 Makaton courses. We began using it at home with each other and with Syeda as much as we could. It was through a lot of repetition and perseverance that Syeda started to say words and communicate her needs. It was an amazing achievement, and Makaton has become a part of our everyday life.

It was a fabulous feeling seeing the positive impact this had on Syeda finally being able to communicate her basic needs. My husband and I decided to continue and both completed Level 3 and Level 4. We found that a lot of behaviours that had once been present reduced significantly. Her ability to communicate what activities she wanted to do, when she wanted to use the washroom, what she wanted to eat, etc., increased. It had meant her overall life quality was improved. Her personality grew and her ability to socialise with greater confidence also improved.

Despite her newfound ability to now communicate her needs, it was still frustrating when we were out and about in social situations where she wanted to interact with others around her. As they were unable to communicate with her despite being willing to do so. People would ask us signs when they wanted to include and talk to Syeda, it ranged from people in the healthcare professions to general members of the public to friends and family. As a result, we realised quickly we had to make the environment around Syeda Makaton aware and improve the skills of all willing individuals to increase her comfort at all levels of interaction in the wider society outside the home. We knew we had to teach Makaton to make the change.

Following this, I decided to do the Makaton Tutor Course to facilitate Syeda. Her use of Makaton is a lifetime journey and the impact it has had is unparalleled. As a family, it has helped us all communicate and meant Syeda is now included in every aspect of our lives.

I will always be grateful to Mel for introducing us to Makaton and also to my husband for convincing me to persevere on this journey.