Nikki Graham, a 39-year-old mother residing near Bury St Edmunds, has spent the past three years fighting for the educational needs of her two children, Dillon, seven, and Annie, four. Both of my kids are autistic. Just a few weeks ago they both got placements at Pushforward, an alternative school for children with special educational needs. While this development brings some relief, Graham’s journey has been fraught with anxiety and emotional turmoil as she navigates the complexities of the educational system.
Graham’s experiences are symptomatic of a much larger fight that should not be the responsibility of any parent who has a child with special educational needs (SEN). The struggle to get the level of support we need is frequent, daunting and demoralizing. The kids are losing out and become just a number, or a piece of cattle — it’s just emotionally catastrophic. What she drives home the most is just how dehumanizing the current system is, in turn leaving everybody hopeless.
Over the past year, Graham’s mental health has stabilized significantly after a period of severe stress while seeking help for her children. She opens up about how hard it can be to advocate for her children. That struggle prompted her to reach out to mental health services. I know that she has moved the needle tremendously. Worry still hangs over her since yearly tests could put her kids’ aid at risk during any of those grades.
The emotional toll of having to fight for her children’s education has been extensive. Graham explains that when you do the kind of intensive work they did, it’s very easy to abandon self-care. You feel like you need to expend all of yourself into the person that you are advocating for. On top of everything, the ongoing pressure to find the funding she needs creates another layer of anxiety. She continues, “That would ocean-wide break our hearts. It would mean having to confront all that carnage and fight again for the council to allocate that support.”
Graham’s struggles will be familiar to Claire Smith of the Suffolk Parent Carer Forum. Here and here, she illustrates that many families are experiencing the same headaches. Things are tough for a lot of Americans right now. In SEND world, it’s all too easy to feel like the tune is always one of fighting and that fight can be exhausting for parents and carers. Yet Smith is encouraged by recent changes, urging that new and improved services don’t necessarily reach everyone yet. Sadly, those improvements are not trickling down to families. We want to be in that position but we need that to happen very very quickly and reap the rewards of those changes,” she explains.
Even in the face of these challenges, Graham is optimistic about her children’s futures. She refers to Dillon and Annie as being in a “good space,” now that they have received their placements. The continued struggle for adequate funding is still a bitter pill to swallow. She confesses that, even in the good times, she never really trusted Suffolk County Council. So, in effect, anxiety has hung over her household like a sword of Damocles.
