A beautiful chaos exists at home for Hannah, her 9-year-old son Jack and their dog Indie. It’s late morning on a Friday, Indie has now stopped barking and is sitting on Hannah's lap. Jack is in his usual place hovering on the stairs with an electronic device in each hand in his stripped pyjamas. The living room is newly painted in a deep green and light grey and everything seems perfectly placed creating this sense of calm and home. Hannah shares that her home was feeling like a prison so she is currently decorating in the hope it will become more of a haven.
Jack is diagnosed with Autism, Anxiety, Tourette Syndrome and Pathological Demand Avoidance (PDA). Hannah explains they have been through quite a journey since Jack was born with the Social Care and education system. Hannah fought for Jack to have a space at a Special Education Needs (SEN) school, which included having to prove his mainstream school were not meeting Jack’s needs, which led to her needing to work with a tribunal case worker. Eventually, thanks to his mum advocating for him, he was offered a place, and Hannah breathed a sigh of relief believing Jack would be secure at that SEN educational provider until he was 19 years old.
That feeling of relief sadly did not last long as the SEN school have now said they cannot meet Jack’s needs. Jack is now not attending school and Hannah has been told she must home-educate Jack. This is not the first time she has been told a service cannot meet Jack’s needs. The children’s mental health service also says they are unable to offer Jack support. A whole education system specially trained and funded to support children with additional needs is unable to meet Jack's needs but Hannah is now expected to do this alone.
“I’m just learning as I go. I found this necklace on Etsy which says, ‘winging it’. I thought I must buy it as that is what I feel like I am constantly doing. All while having constant fights on my hands; fighting for Jack and what he needs. I can’t give up” Hannah explains.
Another battle Hannah has recently overcome is gaining respite. With Jack never in education full-time, Hannah had no time for herself and was often trapped inside all day. Even with the house redecorated to feel more like a haven Hannah still needed to get out and meet her own needs.
Hannah shared that the 18 months she spent asking for some respite care was a process that “rips you to shreds”. Social Care, many of whom had never met Jack were judging if respite is needed from a piece of paper alone. Hannah describes a meeting with social services while she was at breaking point where mid-meeting she experienced a panic attack and shouted “Give me fucking help. I don’t need mental health support I need respite.”
Hannah explained, “I was not going to let them [Social Care] bully me”. From this point forward Hannah was awarded two hours per day offered by one respite worker. When respite comes in Hannah says she is straight out. Hannah loves to walk and is training to do another marathon; the two hours of respite allow her the time to do this. However, there is still the fear that during each Social Care review, these hours will be reduced or stopped. Hannah shared that she had to explain to Jack’s social worker that “things are working well because we have a care package in place, don’t take that away. When you have the right respite things can go well.”
Hannah believes now that Social Care can see that she is a “force to be reckoned with.” Hannah explains that this is not who she was or is and that actually she struggles with anxiety and is quite shy. However, she has learnt that she has to fight, speak up and push herself further than she ever thought she could to ensure her little boy has what he needs to grow and flourish.
“Ironically, I worked in a residential home as a support worker for adults with complex learning and medical disabilities. I’ve not been back since Jack was born. I have tried returning to work over the years since Jack, but it's never worked because he’s never been full-time at school for long periods.” Hannah knows professionally about the SEN world, however, is through personal experience learning so much more. Hannah says that a lot of her guidance comes from other single mums on social media as there is very little information elsewhere specifically about PDA and living as a single mum with a child with complex needs.
