What challenges prevent families from going outside?

Most of us hate being stuck in one place, we like to move around and get a change of scenery now and then. This may not be as drastic as going to another country or another city, for some this is just a walk somewhere locally or going shopping. It is good to do so and have that freedom to make that choice.

What about those who are unable to, the ones we care for? They rely on us or any additional helpers to do so. Some families choose to limit the time with the ones they care for outside for various reasons, and to the onlooker this can seem wise or selfish but can we fully understand why if not in similar shoes?

Here are some challenges I am convinced most of you have heard about or have come across already.

• Social isolation - The parents and their children can be shunned by others who do not want to be involved with anyone who has disabilities. For those who do not have children with disabilities it may seem like too much effort or they actually have no idea how to interact with them.

• Protection - Some parents may feel that they are protecting their children from stares, other children pointing and whispering to each other, abuse, name calling (yes it can still happen) or as above not being involved in the activities of others even if they are able to do so.

• Shame - a reversal of the above, protecting themselves. They do not want to face people or they do not want to be seen as just a carer. Having their child in some way embarrasses them and they would rather not have to deal with it especially in some cultural settings.

• Accessibility - This can present a real challenge. Families cannot fully enjoy the time if they are concerned about getting around an area or venue, or they may have to spilt up allowing only half of the family to fully make use of the time there. Just imagine such a developed and inclusive striving place as London, the city of cities. There we experienced some hassle travelling with Luis when we realised we cannot go everywhere by tube as only about a third of the stations have lifts or step free access. We ended up taking taxis and spent quite a lot on them.

• Stress - The combination of the physical and mental demand, sometimes it can be tiring and stressful dealing with their dependants, depending on the severity of the disability. Especially if their family member has challenging behaviour or meltdowns it may be easier to deal with at home.

• Help - In the case of a single parent, looking after everything on their own outside might be too demanding, and they may have to wait until they have some support from their local authority.

• Familiarity - The person being cared for may not like crowds, nor venturing into new places and can find home a safe zone.

• Finances - Unfortunately it is a known fact that carers and families who have a disabled family member may experience financial hardship. This may impact where they choose to enjoy their time and how often.

A glimpse into the future

Recently we saw a glimpse of our future. We were waiting on our bikes at the traffic lights and there were two carers with a young man in a wheelchair waiting to cross. As the lights changed for them and they began to push him across he let out such a loud scream, that it made the carer pushing him suddenly stop and wheeled him back momentarily in case something had happened. It seemed nothing, just a moment of excitement for the young man, being outside, the traffic or just his way, only he knew but it certainly made everyone within that area stop and look and even a few jumps, even my wife who is used to Luis screaming all the time.

No one stared in an ugly way but it certainly startled a few as it was so loud. This moment for me was interesting because Luis also screams in excitement for things he likes and there can be no stopping him, for chips, buses, trains, walking towards our car which he recognises, or when the bus is dropping him home from school. I wrote an article a while back growing stronger, faster and more challenging that touches on some of this so I will try not to repeat it.

Now Luis has become more vocal and of course as a growing boy his voice is louder. He can as the young man I described earlier suddenly have a loud outburst, sometimes I am not able to work out why, but he is usually smiling at the same time so it is not worrying, but for the onlookers some are momentarily shaken. On most occasions we have not had anyone be nasty towards us, possibly the odd stare but very rarely.

I have been thinking as he gets older and more demanding how will we manage him outside, neither of us have any issues taking him out now or allowing him to enjoy himself. He is a happy boy and loves to express himself, however at the same time we are respectful of small spaces and would try not to frighten anyone. I fully expect us to continue allowing him his right to being outside and enjoying himself even if we need additional help to manage him but the challenges awaiting us with a young undeveloped mind in a fully grown adult body at times sounds scary.