by Children’s Photographer Karen Merry
Every family treasures those precious moments of children at different stages of their lives. Marking their first day at school, saying goodbye to their classmates, first communions, birthdays and key events. With a disabled child this can be more challenging. We at the Special Moment Photography do this on a daily basis, through our own life experiences, we are able to capture these precious moments for to families with disabled children. With this in mind I wanted to share our story:
I would like to introduce you to my amazing son, George. George is 14 and has a condition called quadriplegic cerebral palsy. There are many different forms of cerebral palsy starting with a low rate of dependency and the ability to live a relatively normal lifestyle to a high rate of dependency giving a limited lifestyle. George’s cerebral palsy is a high rate of dependency and combined with the fact he is also quadriplegic, means that George is wheelchair bound, non-verbal, requires various medications to help keep his fits under control and needs 24/7 care with his day to day living. Unfortunately, this condition means that George’s life expectancy is shorter that average, something many parents who have children with special needs have to live with and prepare for.
My family is very fortunate to have part-time support from carers and this is greatly appreciated, however, as you may appreciate, it can be extremely intrusive to your home and family life. For example, If a carer or therapist needs assistance with George, then myself or my husband has to provide it. So, even if I am in middle of eating a meal or just about to do something, I have to stop as whatever it is, needs to be dealt with there and then.
This does have an impact on my four other children, who are all amazing. They have to understand and learn a lot about their brother and his condition, I am very proud of them all for how they do this. The elder children have all learnt how to secure George into his car seat, they are slowly learning how to administer his medication and put him on his feed. George is fed through a tube; he cannot have any foods or fluids orally and it is the same for his medication. The children also appreciate that we cannot always do the same things as other families all of the time such as visit the beach.
Visiting the beach is difficult with George as there is no way you can push a wheelchair on sand. Even accessing things like disabled toilets are tricky, as they are made for disabled people who are able to get out of their seat and transfer to the toilet, where as George needs a hoist and sling to be lifted out of his chair. He is getting heavier as he is getting older and I can no longer lift him on my own. As a family we can go on outings when we have a carer join us, however, it is disheartening heading down to the beach and leaving George on the pier, watching us from afar. Although, George accepts this and he is happy to just watch, it is what he is used to and he knows no different. As his parents we always feel that guilt and worry that he is sad and that we are leaving him behind.
Whilst special needs and disability is a highly discussed topic, it is amazing when you talk to families supporting a disabled child how little support or activities, they feel are available. Parents have to fight hard to get things. Whilst a child or young person may have a certain diagnosis there could be an additional disability which runs alongside that and it then become difficult to get the right support because you tick one box in one area but not another.
From our experiences with George and his friends we know first-hand that spending time and working with special needs children is an incredible and rewarding experience, they are so amazing in their own way. It can of course be very emotional at times as some of the children do have terminal conditions or such a limited way of life it can be hard for people to digest, especially if you are not around them often.
I think many people are scared of special needs and when I say scared, I don’t mean frightened, but maybe unsure on how to approach a family looking after a young disabled person. Never be afraid to ask someone working with or who has a child with special needs to discuss their requirements. I guarantee that that person will be more than willing to open up and discuss it, people want others to be able to engage with that child.
Different people respond differently and unfortunately, some of the children are aggressive and have very difficult behaviour issues, which can be intimidating if it is something you are not used too. This is why it is really important to take the time to speak to someone who knows that person well to gain greater insight and understand what they need. For example some children with autism hate loud noises and crowds of people can overload their sensory space, triggering them to become upset, angry or aggressive. But by contrast my son George loves sensory experiences to stimulate him, such as loud music, laughter and lots of people making a fuss over him.
If a person with a special or additional needs chooses to have a conversation or engage with you, you should embrace it because they don’t have filters like you and I do. They don’t do polite conversation to fill a silence they have chosen you because they feel a connection to you which is something amazing. So, the next time you are in a supermarket and a young person who works there randomly talks you about something that seems to have no relevance, it could be that that person has a special needs and has chosen you to have a conversation with, so keep an open mind.
It is the same with someone you walk past in a wheelchair, especially when it is a child in a wheelchair some people look at you with sadness. When really there is no need as George is one of the bravest and determined young people I know. He has so much to deal with in life and has to work so much harder to achieve the simplest things, he never stops surprising me. He is so much more than just a chair, just because he doesn’t talk doesn’t mean he doesn’t know what is going on because trust me that boy is a clever lad and he, like my other children, know exactly what he does and does not want. He just has to work a little harder to get it.
As a children’s photographer, through our work we are lucky to be exposed to so many special children and young people. We are able to help make them feel safe in their own surroundings and capture those precious moments for their families to treasure.
George is such an amazing inspiration to our family and business, we always think that if George can work a bit harder just to roll over, or lift his hand to push something off of his tray, which seems so simple to us, then anyone can push themselves just that little bit harder to achieve their goals.
If you know of someone who would like us to capture their special moments please get in touch.
Karen Merry, This Special Moment Photography, Children’s Photographer, https://www.thisspecialmoment.co.uk/
Member of Athena Redbourn