Going beyond the wall

English: The north wall of Clova Kirk The nort...

I spend a lot of time lurking on special needs Facebook groups and other online forums – much to QB’s despair (“are you STILL on your iPad?”). I find it interesting and educational to read about others’ experiences and it also helps me feel like I’m not alone – there are a lot of people out there going through surprisingly similar things. But there is one thing that I’ve found crops up a lot in these groups that I don’t relate to: respite. I’m surprised by how many parents of children with special needs refuse it.

While I don’t wish to be critical of anyone else – we all deal with our situations in our own way – it surprises me how many parents feel that they alone should look after their special needs child. And that asking for respite is the equivalent to declaring defeat.

For those of you that aren’t familiar with respite, it is care for children (or indeed adults) with additional needs, with the intention of giving their carer a break. It comes in all shapes and sizes, from a care professional coming to your home for a few hours to respite centres or volunteer families who provide overnight (or longer) care.

We receive “short-term/emergency” (ad hoc) respite at the moment, provided by a state-funded charity. As respite only covers care for Lil Z and not Vegemite, I tend to use it for things such as attending school events. We’re also eligible for more regular respite through another organisation (which will care for both girls), but we haven’t really used it yet.

We’re also blessed to have a nanny and two good and reliable babysitters. And we’re not afraid to use them. Thanks to them, QB and I have enjoyed a season of Queensland Reds games as well as the occasional nights out with friends. If QB ever gets himself organized we might even manage a “date night” sometime soon (he owes me a steak dinner – and yes honey, I am using my blog to remind you).

All this help with Lil Z is gratefully accepted and saves my sanity, especially as we don’t have any family nearby to lend a hand. And I think it’s also good for the girls. An afternoon or evening with a babysitter is a treat for Vegemite, who spends days in advance planning activities they can do. And its good for Lil Z to get used to being cared by people other than me and QB.  Although she sometimes tortures her nanny (she refused to smile at her all day yesterday until the nanny went to say goodbye – when Lil Z gave her a big smile…) she can be happy and comforted by her. Similarly, she is content for one of our babysitters to give her a bath and put her to bed. I don’t underestimate how lucky we are to have this.

Much more complex however, is “going beyond the wall” and taking Lil Z out to an event. It can be a bit like taking a newborn baby out, because you never know how its going to go. Lil Z has gone to a big and very loud pub for the AFL final. I thought she’d hate it (she’s not good in loud or crowded places generally) but instead she slept happily in her pram and then sat happily in QB’s lap.  On the other hand, we’ve gone to small and low-key gatherings where we thought she’d be fine, and she has completely lost the plot, screaming and crying and scratching her ears.

Our default mode at the moment is to keep her home rather than taking her with us. Either one of us will stay home with her or we will get a babysitter to look after her. Sometimes this is quite obviously the right decision – it gives Vegemite some one-on-one time and it keeps Lil Z happy, because she is always happiest at home.

But it also makes me sad. We are, after all, a family and it feels hurtful to leave one person out. And I don’t want to give any of our friends or acquaintances the impression that we are excluding her – although in a way that is exactly what we are doing, but not because we’re embarrassed or want to keep her hidden away.

Bringing Lil Z can also change a social dynamic. People feel obligated to ask about her, and it’s hard not to overwhelm people with details. Yes, the fact we have a severely disabled 2-year old with a rare genetic syndrome sounds completely devastating, but quite honestly, it’s not. When Lil Z is in the sweet spot (as she has been more or less since April), she’s easy enough to care for; and when she’s in a bad place, well, we do what we have to do (as anyone would for their child). And the end of the day, she’s our daughter and we love her, cherish her and enjoy her every bit as much as we do Vegemite.

But a loveable, funny little moppet isn’t the way most people perceive Lil Z. She’s hard work for the un-initiated. She doesn’t make eye contact. She will pull her hand away abruptly if you touch her. She doesn’t smile. She makes repetitive motions with her hands. She doesn’t make a sound. Often, when approached by someone new, she will simply sit in her pram and focus somewhere in the middle distance, giving no acknowledgement whatsoever to the person who has come to greet her. It takes a lot of effort to get to know Lil Z.

I sometimes worry that by leaving her home, we’re not teaching her to cope with social situations, and without the experience, she will never learn. However, it is a fine line between teaching her to cope and just plain making her unhappy. Add to that the fact we don’t know how poor her vision might be or how sensitive she is to sensory input. So, her tears may not be just from not liking to be around people she doesn’t know – it could be fear (who wants to go to a strange place with strange people when they can’t see what is happening) or sensory overload.

QB and I recently attended a seminar about caring for the siblings of children with special needs and the issue of whether or not to take the special needs child out with you came up. It seems we are not the only ones struggling with the issue. And it also sounds like it becomes increasingly complex as the sibling gets older and becomes either anxious about or embarrassed by the special needs child.

So, there are no easy solutions to going beyond the wall. We are stuck trying to balance Lil Z’s happiness, the cost of babysitters, and a determination to get Lil Z out and engaging with people. A work in progress.

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