Brotherly love in COVID times

Jason & Melanie after 6 months separation

Growing up in rural New Brunswick, daughter of a country doctor and a stay at home Mom who was also the occasional substitute teacher in the local school system, I was #7 of 8 children. We had no groups/gatherings for siblings of persons with disability to get together to discuss anxieties, fears, the future, their role in the adult life of their sibling with disability. Tough conversations about challenging situations.

My parents and I were fortunate that my disability, spastic diplegic cerebral palsy, wouldn’t significantly impact my adult life with regard to independent living. At 66, I’m still at it, maintaining a home as an aging widow lady, kept busy by a similarly aging Maltese terrier with attitude. So far, good!

Many children with disabilities, as they ‘age out’ of paediatric services, often grow up without sufficient networks in place to pick up where parents and early education leave off.

In these COVID times, adults with disability, particularly those in group homes, have been challenged by lack of access to family and friends. For many, their daily routine has been turned upside down, not unlike seniors in care homes across the country. Even seniors with dementia have a sense that something isn’t ‘right’ in their world and it’s difficult to explain to them what is going on. Such is the case with young group home residents who have a certain level of intellect that allows them to carry on conversations and be engaged in meaningful ways. 

In the group home setting, where several adults with challenges reside as a family, with two or more team leaders acting as ‘house parents’, the challenge of explaining to 6-8 men and women why they can’t go to work, why they can’t go to social club, why they can’t go to the park with their brother or sister is exhausting. Several times a day, the same questions asked and the same answers given.

Several years ago, I stumbled across a Facebook group, The Sibling Collaborative, born in Canada in 2016, boasting 462 members. I was struck by the recent entry of one young woman, Melanie.

Melanie and her brother, Jason, had to wait 6 months to be together — at a distance. Can you imagine what that amount of time means to someone with challenges to daily living that impact mental acuity and understanding? To not have that daily presence in their world and not able to understand the why of it. The pain of the absence on the non-disabled sibling is palpable as they can’t give what their brother or sister is used to; a hug, a song, a story from a favourite book, a dance around the lawn; watching a movie together, though one may not understand a word of it. Quality time spent has become quality time lost to COVID.

Another group member shared the anxiety her brother was feeling as he communicated via a white board; she feels she’s not doing enough and he is wanting to do things and see people but he cannot. COVID has rocked his world; lashing out is how he copes. What else can he do? What else can his sister do? 

Staff in the group home settings are tasked with steering intellectually challenged adults already frustrated by so many things they will never understand. The days are long, confined in place with no access to usual activities which, for years, were part of their worlds. I applaud all those health care professionals and educators in such settings who stay the course. The constancy of people is critical as routines change. Being able to hug the residents as you share the space, sit at the table to share meals, knowing that the end of the day, you’ll have to repeat the same thing tomorrow. 

Behavioural techniques already used can help residents adjust to changes in routines; modeling and reinforcing desired behaviours, picture schedules, timers, and visual cues. Local mental health clinics or special education agencies are excellent resources for guidance. If some residents are struggling, perhaps their physician could visit to offer reassurance. Special times demand special considerations and health care professionals will endeavour to do all that is necessary to ensure that adults with special needs are treated with respect and dignity as they struggle with the confusion in their world.

Adults with disability who relied on others, including siblings may be at higher risk of infection during these COVID times; people who have difficulties washing their own hands, blind or low-vision individuals who must physically touch objects for support or to obtain information, and those with trouble understanding and/or following public health guidance on physical distancing may be at higher risk.

Men and women guiding siblings with disability through COVID deserve all the help they can get. Lend a hand!

Carla Rockwell is a freelance writer and disability rights advocate living outside Fredericton, NB with Miss Lexie, a rambunctious Maltese. She can be reached via email at carmacrockwell@xplornet.ca