Guilty or not?

Raising a child with special needs has brought a lot of emotions, guilt being one of the main ones. When Ryan was a baby there would be times when I would feel guilty over everything, have I spent enough time doing therapy exercises with him, is there more I could be doing to help him along, why is Ryan different to others – was it my fault. I’m not sure whether the guilt actually goes away or whether you handle it in different ways as they get older. It was especially hard when Noah came along trying to manage our time so both boys got the attention they needed and deserved and sometimes the guilt of feeling like you hadn’t done enough or you weren’t good enough could be very overwhelming.

One of the big issues for us was when we first started looking into respite for Ryan. This felt like a huge decision at the time and we wanted to make sure we made the right choice for Ryan. There was a number of reasons we looked into respite, Ryan didn’t make friendships like Noah did and as they grew up Ryan hasn’t had the opportunity to have sleepovers with friends or play dates and it could be a bit of independence away from mum and dad and it gave us the opportunity to focus all our attention on Noah. Respite started off gradually with Ryan going for an afternoon and staying for tea and then gradually built up with a one night stay and eventually built up to three night stays. Ryan settled into respite well and we knew this was his little bit of independence and it would help him become more independent when he was older, which was great, but I certainly struggled more than hubby did with worrying how he was when he was there, guilt that other people were taking care of him and he wasn’t with us and still now to some degree the guilt still creeps in. I’m not sure whether this is mum thing or not, do us mums feel things differently than dads or do we all just handle things differently? The time that Ryan is in respite we put a lot of focus on Noah, sometimes we maybe go overboard a little bit. It’s the small things though that count, if the four of us go out for tea or a coffee shop Ryan always picks where we sit as he will only sit in certain places and he dictates who has to sit where otherwise he gets very agitated and annoyed and yes we do let him do this because sometimes you have to pick your battles and this just isn’t one of them. When Ryan is in respite we always take Noah out somewhere and he gets to pick where we go, where to sit and what we do, he gets to make the choices instead of Ryan for a change. We have ventured to London a couple of times when Ryan has been in respite. This was especially strange for me, it felt wrong that Ryan wasn’t with us and we weren’t enjoying things together as a family of four but going to London isn’t something I think we will ever do with Ryan as it would be too much for him to cope with. Noah loved going to London and doing things just the three of us and Ryan enjoyed respite when we were there but it still felt like a little bit of our puzzle was missing.

Ryan really enjoys respite and the people who look after him are amazing and hopefully he will learn some really valuable life skills to be able to live independently from us when he is older. I don’t think you realise how much respite is needed until you actually have it, although the guilt is still there (sometimes it feels like it will never go away) it feels like once Ryan has gone to respite I can finally breath again, like I have been holding my breath battling on with day to day life with Ryan, helping him get ready everyday, changing him, every little thing he needs help with. When he is in respite and somebody else has the responsibility of everyday life with Ryan for a few days I can just sit and breathe……..

xxx