Ben loves going to music concerts.
But to do that, you have to scope out the venue beforehand. He needs changing facilities and if we’re lucky, the venue will have nice, close parking.
Some people are also a little frightened of Ben. This is why we tend to go back to places we’ve been before.
This is the part of Ben’s life that most people do not see.
This is the Secret Life of Us.
Tracy, mum of Ben, 15.
Despite the fact that he has severe short-term memory loss and is unable to use one side of his body, 21-year-old Ryan attends college, loves going to the cinema and is massively into music and fashion.
This is his story, as told by dad Mark.
Ryan’s cognitive disabilities are: severe short-term memory loss resulting in perseverance, meaning that Ryan will ask the same question many times, and disinhibition, which is a lack of filter that can result in quite hurtful comments. This will always end with a persistent ‘sorry’. Acknowledgement of the apology is important or, occasionally, this can further exacerbate outbursts.
Physically, Ryan is hemiplegic. He is unable to use his left side. Ryan is a wheelchair user and has learned to use an electric chair. Although Ryan’s right side functions well, he has developed an involuntary tremor in his right arm, making drinking and eating more difficult. Ryan is continent but requires a bottle for urine and, of course, transfer to toilet for bowel function. Ryan can be very persistent with the bottle and frequently demands it when not needed.
The effects can be physically and emotionally draining.
We receive assistance daily, in the mornings and the evenings, getting Ryan ready for the day and settled for the night. Two people assist Ryan getting out of bed and washed and dressed. At weekends the support is longer, enabling days out for Ryan. He enjoys going for dinner, shopping, trips to the cinema and occasionally swimming. Ryan loves his clothes and his music. Appearance is still high on his agenda.
Ryan attends college three times a week and loves his time there. Next year this will extend to four days and he will start a media studies course at mainstream college.
Predominantly, despite his disabilities, Ryan is happy young man, and always asks how others are when meeting them. His cheeky look resonates with most and he brings a smile to any room.
Although a care package is there, further resources are woefully lacking. We have had no assistance from social services, despite numerous requests. Physiotherapy has been practically non-existent. Due to Ryan’s needs, the family has to constantly juggle time for work commitments and for care. And care support does not always go to plan due to Ryan’s outbursts.
Transfers in and out of vehicles isn’t without its trials and tribulations. We use a Sara Stedy hoist. Getting Ryan in at home is OK, but the hoist is not transferable, so manual handling is required at the end destination.
Any outing requires planning – extra clothing in case of any accident, pads for sanitation and dignity, cleaning aids, transfer board for manual handling and so on. If Ryan is staying overnight, we have to bring bed rails if an appropriate bed is not available.
Communicating is key I believe. Departments need to be more forthright in sharing of relevant medical and social information. Segregated areas in services leads to constant repetition of information already given elsewhere. Time is precious, use it well!
Society in general, I believe, is becoming increasingly intolerant and less patient in all manner of areas. This area is extremely challenging. Education and sensitivity to people’s needs is key to bridging the social ‘gap’. For instance, I was attempting to push Ryan into a hospital lift when a member of the public blatantly barged past, with a ‘you snooze you lose’ comment. I was flabbergasted.
This is the part of our life that most people simply do not see.
This is the Secret Life of Us.