Niamh is 7 and has Tuberous Sclerosis (TS). She can’t communicate or look after herself in any way. She loves eating and swimming.
Despite Niamh’s difficulties she was a joy to look after. It was often the case her younger brother, who is fine and two years younger, was much harder to look after. At around 4 Niamh started to hit and pinch herself and exhibit prolonged episodes of screaming. Niamh’s extreme behaviour would often result in the drawing of blood and meant as a family we could not travel or partake in the things a normal family does. What had happened to our child? I had to give up work as Niamh could not be left alone – I feared she would permanently injure herself. The situation left me getting only 4 hours of broken sleep per night.
Niamh attends a special needs school. In June 2009 the school’s Family Support Team, thankfully, gave us a route to support. A Common Assessment Framework (CAF) meant for the first time we had access to funding (direct payments) for respite care and individuals like the Community Disabilities Nurse. The nurse helped us with ABC charts to see what triggered Niamh’s behaviour and referred her for a sensory assessment.
In November 2009 we discovered the Challenging Behaviour Foundation (CBF) and I immediately contacted their Family Support Worker. This gave me confidence and reassurance as they felt we were doing everything we could. The support worker further helped with leaflets and DVDs about challenging behaviour. Talking to someone and having access to learning material made me feel relieved that other people had experienced similar situations.
Christmas 2009 was a terrible time. Niamh needed someone with her 24 hours a day; otherwise she would constantly hit herself. The situation meant my husband, Nick, and I taking shifts to care for Niamh. Dad did the weekends and I did the weekdays. This period was a wake up call for us both and we finally admitted we needed help to look after our daughter. Taking help made me feel I had failed in some way but Nick helped me to realise this is not true. In February 2010 we received 4 hours of respite in the home and this meant we could devote some time to Finlay, our son, and ourselves. Niamh never left our thoughts, but a trip around B&Q or Tesco was a real tonic!
Despite professional help Niamh’s behaviour worsened. Niamh’s Grandparents questioned how anyone could cope long term with Niamh and the school also began to struggle.
In May 2010 Nick initiated a multi-agency meeting at Niamh’s school. The meeting was to discuss, with Social Services, routes to support for the family. We received fantastic support from Niamh’s school teacher, Family Support worker, School Nurse, TS Nurse, Niamh’s paediatrician, Occupational Therapist, Community Learning Disabilities Nurse and Niamh’s Grandmother. Following this meeting we received extra direct payments and two nights care in the home. It also helped find horse riding and swimming each weekend.
The extra help has changed all of our lives. With help we have found ways to deal with Niamh’s behaviour. I attended the CBF core training in September 2010 and now deliver workshops to family carers. This has been very empowering for me to tell my story and to help others.
As a family we are now more confident in dealing with the situation and feel better prepared for the challenges ahead. Early intervention is the key in ensuring challenging behaviour doesn’t escalate into situations that become out of control.
Carly, mother to Niamh.