Being a voice for our children can be so hard, seeking and fighting for the support they need. Sometimes it can feel like just as you clear a hurdle, another appears ten times higher and then the puzzle solving begins as you work out just how to get over it. In the world of SEND, being the voice they need can be exhausting and tough but it is important.
Being his voice from the start.
From the moment J was born we have had to be his voice in the NICU and SCBU. Watching his development and speaking up when we notice something not right. When J was 3, we noticed some quirky behaviour but was unsure if he was still catching up developmentally, something wrong or if it was just his personality. He seemed to struggle in the social aspect.
When we first started potty training J, we couldn’t clap or make any sort of fuss because it would make him cry. It made potty training quite difficult. It seemed he didn’t like focus directed at him for anything personal or emotional. Eye contact was never an issue, it was more when attention was focused on him and not general chat. It was also noticed at nursery and then at school.
The school he is in has been fantastic and worked with us to help J with social and emotional elements. Academically he is doing really great but he is very literal. I have spent countless hours researching how to best help him with both this and his anxiety. After trying to get him help and feeling like I was talking to walls, it took him experiencing sensory overload at a friends party to finally get seen by CAMHS.
Finally getting somewhere.
It felt that finally being the voice he needed was being heard, but it was not really to be. They looked at the anxiety angle only and as he isn’t really able to understand why he is anxious, it wasn’t able to help and was referred back through the school. It felt like two steps back. He has now been seen by the educational psychologist and we are waiting for the outcomes and next steps.
It has been a struggle and recently has left me feeling exhausted and burnt out, but every little step forward and progress seen makes this feeling worth it. Being the voice they need is so important. I don’t know what challenges we will face getting support for J but I know I won’t stop trying.