We were thinking about Lio and how his upbringing will be different in some ways to other children. Living with a disability has it’s ups and downs, but how will Lio be affected by growing up around disability?
- His immune system seems to be very good, which I am sure is due to lots of different people (carers and helpful family members) coming in and out of the house. Although everyone is vigilant about handwashing, the variety of germs coming in to the house each day must help him to build a good immune system. On the flipside, this could also mean that he occasionally catches bugs which he wouldn’t have caught if it were just our family in the house.
- Lio will probably have great social skills because of being brought up in this sort of environment. Carers coming in and out as well as the fact that we get a lot of attention from curious members of the public when we are out and about. When I take Lio out on my own in the sling we sometimes go to meet friends who will help me to get him out of the sling and sit him on the floor or in a high chair, and hopefully seeing me accept help from friends and strangers will enable him to see that people can be very helpful and not to be afraid of asking for help when he needs it.
- Every carer brings a different atmosphere in to the house with them. As a family we all react differently to different people coming in and doing things slightly differently. But Craig and I (and Lio’s grandparents) are his constant caregivers and we do our best to keep his routine constant as well so as to raise him to be adaptable but stable. We also try to ask the carers to do as little as possible when it comes to looking after Lio. It is clear that they are here to assist, not to take over. I get quite possessive when it comes to comforting Lio and how much input carers have in Lio’s upbringing. I read a book years ago by Alison Lapper about her life with a disability and bringing up her son as a single mum. She explained some interesting ways to ensure her baby was bonding with her and not the carers, such as asking them to face the baby to her rather than them when picking the baby up out of the cot for her. She also explained how her son would struggle when a carer left as he had obviously got attached to some of the live in carers. For this reason we try to limit the amount of shifts by each carer.
- He will grow up thinking that differences are normal. Disability will not be an issue for him, and I hope with all of the different carers coming in and out of the house (and his life) he will come into contact with so many different types of people from all sorts of backgrounds and walks of life, that he will become a very accepting young man.
- He will have a massive support network, an extended family of sorts. Our team of carers who assist me with everyday independent living are around Lio on a regular basis which means we always have extra people around our family. This, I imagine will be lovely for all of us in some ways; an extra pair of hands to help out, an extra pair of ears for Lio to entertain and for us all to talk to, a different view of the world for Lio to learn about. But there will be times when having people around at our family’s intimate moments could be a bit of a hindrance such as when either one of us needs privacy for any number of reasons, or during a row, or even just having people around distracting Lio from his routine.
- I also believe that growing up with us as parents will teach Lio a lot of patience. There will be times when he will have to wait for me and some things will take a lot longer for us than other families due to transferring, extra equipment or just the fact that I’m not very strong so everyday things can take a bit longer to get done, or I may need help to do them. So there will be times he has to wait, times he has to understand that I can’t do certain things with him and times when I just don’t have the energy.
- I like to think access has moved on since I was a child, and that Lio would never have to experience the disappointment of turning up to a venue which has no wheelchair access, but already we have encountered a lack of access twice in his 10 short months. Once was a private swimming lesson we had signed up for, having been told that the poolside would be accessible for me to watch, but when we arrived the whole building was inaccessible. Another was an afternoon sensory group (apparently afternoon groups are tricky to find so this one seemed perfect), which when I enquired about, was in an upstairs room with no access. Granted, Lio is not old enough yet to feel let down or disappointed that we couldn’t attend these groups, but I felt extremely disappointed and upset that as he grows up and does start to anticipate and look forward to things, he could still experience those exact feelings that I had to grow up with, and that this sort of discrimination still exists.
- I hope that by seeing us getting on with life as a “normal” family, the general public are being educated. People sometimes ask strange questions or wonder how we cope, and it is only by seeing us getting on with life like anyone else that people will start to see parenting with a disability as no different from standard parenting.
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