Mary's top tips for creating positive experiences for the whole family on days out.
Families of people with severe learning disabilities have had very varied experiences of lockdown this past year. Many have struggled with the extreme situations of either caring for their family member at home full-time with little or no support, or being unable to spend time with their relative at all, as they shielded in their care home or shared home. Here, Cathy and Mark share their individual experience of lockdown, in which they fully isolated as a family bubble – a way of living that was not entirely new to them.
We are the Parents of a wonderful 14-year-old boy, Malachy, who has Autism, Severe Learning Disabilities with behaviours that challenge. He has three younger siblings. Malachy has been an in-patient at an Assessment and Treatment Unit since September 2019, when he was admitted and detained at 12 years of age. Malachy remains an in-patient due to ongoing negotiations with the local community trust team regarding the provision of appropriate support, to enable Malachy to return home to his family with the right environment and support staff.
When the initial lockdown was introduced in March 2020 our immediate realisation was that due to our caring responsibilities with Malachy and his additional needs, we as a family unit had already been effectively ‘living a life in lock-down’ for years. The activities and places that could be taken to for leisure and fun activities for a child of his age, such as play parks and swimming centres, have been ‘no-go areas’ for us long before any sort of lockdown.
Throughout the various lockdown periods, the centre in which Malachy is a patient has acted with great flexibility and with Malachy’s best interests at heart. We were given a choice at the beginning of lockdown. We could either say good-bye to Malachy as he would have to isolate in the unit, or we as a family could ‘bubble’ with him and therefore self-isolate at home which would allow our daily contact with our son. We were only permitted to leave home to collect Malachy and bring him home for few hours. It was a no brainer! Neither Malachy, nor us, would not have coped with not having contact with each other. We are very lucky to have such compassionate doctors and a team who recognised and weighed up the risks to Malachy of Covid-19 infection but also the serious risk to his mental health and overall well-being.
For the first few months of lockdown Malachy was in his element as he was returning home on a daily basis. However, as lockdown has progressed, returning home was no longer enough to satisfy Malachy’s needs; he wished for more and the number of incidents of challenging behaviours increased. In this respect we are working with Malachy’s centre to create a better balance between time at home and time in the centre. The fact that in this third lockdown special schools have remained open has also been a bonus as Malachy has been able to attend school even when other schools have been closed.
Coming out of lockdown we still believe that for us, and families in similar situations, society can be inaccessible. There remains a variety of inequalities for those with learning disabilities and challenging behaviours, and we are not hopeful that this period of lockdown will solve these long-standing issues. In all likelihood we will return to a world where we feel we live in a semi-lockdown existence to meet Malachy’s specific needs. We appreciate that many other families linked to the CBF will be in similar situations and would encourage everyone to stay strong and focused on those special people in our lives, knowing that through the CBF there is great support, knowledge and experience to help us through any difficult times.
Cathy and Mark
A breakthrough for a father and a son with challenging behaviour by going on the London Eye.
If you support someone with a severe learning disability whose behaviour challenges you can contact the CBF Family Support service on 0300 666 0126 or email us at firstname.lastname@example.org