Live ChatAs a family with additional needs, WO2 Craig of the 14 Signal Regiment and his wife Emma were at first unsure of what to expect from the SSAFA Short Break they attended in August 2021. In the past it has been difficult to find family activities that their daughter Ella, who has complex needs, can take part in along with her brother Caiden.
To their delight the weeklong SSAFA Short Break in the Lake District was an all-round success, providing Ella, Caiden, Craig and Emma with the chance to enjoy activities together as a family.
Emma: “Ella has a couple of Neurological disorders that are quite rare. One is called West Syndrome, and she has partial agenesis of the corpus callosum. Epilepsy, global development delay, and a few other sort of minor, in comparison, things as well. So she doesn’t have understanding, she’s nonverbal, she’s doubly incontinent. She’s immobile...she can walk a little bit in safe places, but largely a wheelchair user. And obviously she just doesn’t have that social etiquette...she just, doesn’t have that understanding.”
Trying to find after school clubs, and groups, things for her to go to is almost impossible...
Emma: “I think it’s easy to forget we’re 200 miles away from family, so we don’t have a support network of immediate family that non-military families might have. Trying to find after school clubs, and groups, things for her to go to is almost impossible, there just isn’t that provision available. So...when we’re not getting supported by the military as a whole as well, it just adds another sort of step down in support and barriers.
“In general, there’s not enough places that offer that sort of whole family assistance with inclusion. Especially in the military...they’ll do events, but they don’t tend to cater for disability very well...I think it’s a lack of understanding, rather than provision.
“When we do mention things, things do happen. They do, and attitudes change a little bit when they realise we are struggling to cater for Ella. But we’ll make sure we get to most of the things that are put on for Caiden, to make sure he doesn’t feel left out because of his sister.
"It’s difficult because we don’t have any help with Ella so we can’t leave her at home so that Caiden can get the full experience but also why should we? Ella is just as much a military child as Caiden is and she should be accounted and provided for as well.”
I think they assume if you’ve got a disabled child that you don’t work, well that’s not the case.
Emma: “Ella is in school full time, and I’m a working carer. Which I think is another barrier. A lot of things that are geared towards carers are done during the working day. And I think they forget that some of us have to work, so we’re often forgotten about in that respect as well...I think they assume if you’ve got a disabled child that you don’t work, well that’s not the case.
"I have two children in two different primary schools and I also work so the mornings and after schools are always a bit manic.”
During the August 2021 SSAFA short break, the family took part in a wide variety of activities at the Lake District Calvert Trust including kayaking, archery, abseiling, rock climbing and low ropes.
Emma: “This is the first time we’ve been on a SSAFA break, I think we were a little bit unsure in the beginning of what to expect...But everything’s been really good, it’s been really well organised, the staff at Calvert Trust have been amazing. The two SSAFA workers have been fab with all the kids, they’ve remembered everyone’s names and it’s made us feel really included and really welcomed. Nothing’s been too much trouble, even when she’s shouting out in the middle of speeches, everyone just sort of gets on with it, they don’t mind, no one’s looking and judging, so that’s been quite nice.
“Calvert Trust is amazing and the provisions they have are outstanding, even during a pandemic they put the kids first and we all felt very safe.”
The break provided the Meacham’s with the opportunity to take part in activities they wouldn’t usually have the chance to try.
Emma: “My kids have been able to spend time doing activities together and actually laughing together which has been so lovely to see. We have managed to watch the children overcome fears and enjoy the activities which for me has been amazing."
Craig: “...because it’s so inclusive [at SSAFA Short Breaks] she’s loved everything else that we’ve been able to do as well. Because normally it’s only the swimming that she can do so that’s what we concentrate on."
Emma: “To be fair though it’s been that jam packed with activities that I’m not sure we would have time to go swimming any ways. It’s been so busy.”
...we can all spend time together as a family in different places, but we don’t have the same experiences, because a lot of the time Ella can’t participate. So, the fact that she can participate has been really good.
Emma: “Everyone’s so understanding of different needs because all the kids here have really different needs, none of them are the same, but everyone is catered for and everyone’s looked after and welcomed. And like I said there’s no judgement, no-one’s looking at your child...it’s really, really nice, everyone’s been really helpful. You know if I need the toilet and Craig’s got him [points to Caiden], someone will watch her for two minutes, so everyone’s been really good and helpful, it’s been really nice.”
Family time is important to the Meachams, and the SSAFA Short Break helped them spend time together doing activities that they could all take part in.
Emma: "...it’s [family time] really important, but inclusion is as well, because obviously we can all spend time together as a family in different places, but we don’t have the same experiences, because a lot of the time Ella can’t participate. So the fact that she can participate has been really good.”
Craig: “And I think really, rather than individual activities, that’s been the best for me. So that both of these [Ella & Caiden] are able to do all the activities together, there’s no differentiation between one being able to do it and the other having to watch, they can both get involved."
“I think we all bonded really quickly didn’t we, even the lady from SSAFA commented on how quickly we bonded as a group. It’s been really nice, and we’ve all got on and the kids have all had loads of fun together.”
For little brother Caiden, the best activity of the SSAFA Short Breaks holiday was the high-ropes and rock climbing.
Caiden: “probably the rock and rope swing...It got me a bit scared but then it was fun.”
Craig: “So I’m always the typical reluctant person, and I think about the drive, how much we’re going to have to pack, and those sorts of things, which get me down in the build up to it. But after a day of being here, you forget about that, so go for it, is my honest advice.”
Emma: “As we’ve said before, it’s so important for us to spend time as a family where we are not worried about her [points to Ella] being a nuisance. She’s not to us, but to other families that don’t understand disability it can be a little bit annoying when you’ve got a child shouting every two minutes. So, the fact that they’ve funded this and made it possible has been really amazing for us.
“Thanks to the funders of SSAFA Short Breaks and the team, we have made friends with other families and we are still in regular contact, we speak often and that has been lovely.”
Having a network of support and friendship with other Forces families with additional needs and disabilities is important, as is being included, as the Meachams – like many other families with complex needs- have felt excluded in the past from family focused events, even ones aimed at military families.
Emma: “I think we have felt excluded a lot due to having a child with extremely complex medical needs in the 11 years we have had Ella but the funders have made us feel as important as other families.
“It’s not just about putting money in for people to find something to spend it on, the funders have put money in for families to experience things that are usually impossible, they have enabled us to meet other military families with children with additional needs reminding us we are not alone.
“I think that the funders deserve a huge thank you and I would love to personally thank them. I will definitely apply for one of these breaks again because it was a huge success, and my kids had the best time.
“I wish there were more opportunities like this for us as it has been something we will cherish forever. Thank you to everyone who has contributed to this in anyway. It is appreciated more than they will ever know.”