A special needs family life, work life and combining the two passions
Posted on 10th May 2021 at 16:01
Every family treasures those precious moments, birthdays, their child’s first day at school, holidays and many other special events. With a disabled child this can be more challenging. I do this on a daily basis, through my own life experiences, my husband, Peter, and I are able to capture these precious moments for families living with disabilities, autism, special and other complex needs.
With this in mind, I would like to introduce you to my amazing son, George. George is 15 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 quadriplegic, means that George is wheelchair bound and non-verbal. George requires various medications to help keep his seizures under control and needs 24/7 care with his day to day living.
My family and I are extremely fortunate to have support from carers and this is greatly appreciated. Being able to cook a family meal or take one of my other children to football knowing that George is being looked after is amazing. On the flip side, it can be extremely intrusive to your home and family life. At times, I do not feel completely relaxed in my own home as the majority of the time a carer or therapist will need assistance with George. This evening alone, five times the carer came in and needed assistance. When this happens, immediately, myself or my husband, Peter, have to stop what we are doing and attend to what is needed.
We both do this without hesitation or question, because if George needs us we are there. Even if I’m in middle of eating a meal or just about to do something, I have to stop as this, needs to be dealt with there and then.
Even my children are part of this, if I'm upstairs and the carer comes in they get the attention of my child so they can alert us to what is needed which of course has an impact on them. My children are incredible and I am so proud of them. They have so much to understand with their brother and his condition that it is just part of their day to day life.
The elder children have all learnt how to secure George into the car, slowly learning how to administer his medication and put him on his feed. Even my three year old daughter, Violet, knows which bottle makes up George’s feed which is incredible. She will go over to the cupboard, get it out and pass it over to us. Occasionally, it ends up on George’s lap but most of the time it goes to us. She also unpacks his Abbots deliveries with a smile on her face and George loves doing this with her. Sibling bonding time over some Jevity milk!
George is quite unique in that he is fed through a tube known as a jejunostomy which goes straight into his intestine and his medication is administered via his gastrostomy tube which goes straight into his stomach. The words are like a tongue twisters but these are their names! In layman’s terms this means that he cannot have any foods or fluids orally and it’s the same for his medication.
Back to the other four children, they have learnt to appreciate that we cannot always do the same things as other families. Just as an example, I would love to spontaneously say to the kids “let’s head to the beach”. Visiting the beach is difficult with George as there is absolutely no way on this Earth you can push a wheelchair on sand, trust me I have tried. I even invested in a slide mat for the beach so we could transfer George and slide him along the sand. This then presented other issues such as where would we leave the wheelchair whilst on the beach.
A general problem we encounter, anywhere we go, is disabled toilets. Public disabled toilets are made for disabled people who are able to physically get out of their seat and transfer to the toilet. George needs a hoist and sling to be lifted out of his chair. As he is getting older, he is getting heavier. I certainly can no longer lift him on my own and although Peter can do it, I would prefer he didn’t. We aren’t getting any younger after all!
We of course do go on family outings and these are an absolute pleasure and joy. There are times we have a carer join us to enable us, as a family, to do things together that we’re not able to do with George. I have to admit though, it is disheartening heading down to the beach and leaving George up the top, watching us from afar. I want him to be with us, I want him to be able to come down to the beach but it’s something physically out of my control. George, however, is happy to just watch, it’s what he is used to and he knows no different. He always has a smile on his face and often we sit as close to the top as possible so we can still talk to him and get him to join in. As his parents we always feel that guilt, however, I think many parents feel guilt when doing something without their child and it doesn’t have to be a special needs child.
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.
Today, however, I visited a place which I never thought existed. I had the absolute pleasure of meeting Paul Bowen-James and his incredible team at Kids in Action in Bedfordshire. What Paul and his team have created there is just mind blowing in the world of special needs. It is a hub for special needs children and young people to get together and be themselves in a youth club type environment. It is also a place for parents to connect and share their experiences and on top of that the siblings of the special needs child can also attend. I honestly wish there was something like this Nationwide for all special needs families and I feel this is a flagship for something the UK needs. Please visit www.kidsinaction.org.uk and see what this amazing charity does. I’m so excited to arrange George’s first visit there.
Working with special needs children is an incredible and rewarding experience, they’re so amazing in their own way. I love being around them and engaging with them. It’s why I love my job, it almost doesn’t feel like work! 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.
In my personal opinion, I feel that many people are scared of special needs and when I say scared, I don’t mean frightened, maybe unsure on how to approach it. I would say to never be afraid to ask someone working with or who has a child with special needs to discuss their need. 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, young person or adult.
If a person with a special 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, some people look at you sadly. When really there is no need, 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.
George is such an amazing inspiration to our family and business. I always think that if George can push himself to roll over, lift his hand to give a high five or push something off of his tray, simple to you and I but not to him, then we can all push ourselves harder to achieve our goals in life.
As a special needs photographer, I have the privilege of working with so many special children and young people. I have also been able to meet so many families and people who work with special needs and my network of people in the special needs keeps growing on both a professional and personal level. I feel extremely blessed to be able to combine my work life with home life and I look forward to meeting and working with many more children, young people, adults with special needs.
If you know any schools or centres that would benefit from my specialist services please put them in touch with me. Or even if you know a special needs family just wanting to connect with other families, please put them in touch with me.
I'd welcome your feedback and comments below.
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