The social life of a mum of a 5 year-old baby..?

scream and shout

Image by mdanys via Flickr

Keeping up a social life – of any description – when you have an autistic child, is a real challenge. You can either take your child with you, which creates all sorts of issues and anxieties for the child, and often ends in the visits been brief and stressful for everyone involved. Or you can attempt to leave the child with some other person who is familiar with your child’s forms of communication and sensory issues; you’re lucky if you can find these sorts of people, let alone afford them. The easiest option is for people to visit us at home, where everything is set-up in such a way as to minimise meltdowns and handle them if they do occur.

So I was pleasantly surprised when someone I hadn’t seen or heard from in a while, texted me to say she was in the area with her two kids, and could she come by for a catch-up. I confirmed what a nifty idea that was, but warned her that I had to go out for a half-hour physio appointment soon (I have a recurring neck injury, lifting a 5 year-old boy a lot does that to you). That threw a spanner in the works and she chose to cancel her visit, but suggested maybe we could come visit her later instead.

At this stage I’d gone from “yay” to “sigh”, considering the difficulties involved in visiting people with our kids. Preparation includes not just taking nappies and milk for the baby (I’ve just started weaning him off breast-milk), but also taking along a timing device that we use to calm our autistic son, and mentally preparing myself for the usual anxieties my son has when we have to even think about going somewhere. Such as the battle over footwear or lack of footwear; he often changes his mind about footwear so we usually take a couple of options. Choosing footwear sometimes ends in tears.

Then there’s the car ride, which hurts my already damaged neck, as I constantly have to turn around to deal with whatever is going on in the backseat between the kids. The constant reassurance for our autistic son that yes we are going to “x”, yes we will get there in “x” minutes, no we haven’t taken a wrong turn, yes the lights will turn red soon. You get the idea.

Then once we get there we have to worry about what our son can and cannot touch at the destination, and constantly watch his mood for signs of rising anxieties. He can be set off by something as simple as a window or door that “should” be shut or open, but isn’t. He never wants to stay the time we’re meant to stay, it’s always leave early or stay longer, and face a meltdown if we don’t comply. I rarely enjoy going places with my children, not least of all because it’s always me having to manage the anxieties and calm down my autistic son, while keeping an eye on the one year-old baby. It is exhausting, on all levels.

Anyway, back to the conversation which inspired this post.

So I told her it would be easier for us to have her visit us, since our house is baby and “John” (let’s call my autistic son “John”) proof. This friend of mine knows my family very well, and we’ve visited her and her us, often over the years. So her reply suitably surprised and shocked me. She said that her home was baby proof so it would be safe for both our baby and John.

Geez.

If baby-proofing a home was all that was required to make visiting people easy, it wouldn’t be a problem now would it. But, as I hope this post has made clear, the issues with John are a bit wider and more complicated than erecting door barriers and hiding the good china. It’s not simply a matter of protecting a home from the damage my son can do to it, in fact he’s very gentle and careful. Baby-proofing would do nothing to address sensory issues, indeed it could frustrate him further by feeling penned-in, literally.

I didn’t think I needed to explain all this to her in the first place, but it turns out I do. I am too tired and disappointed to bother today though, and I just know that she’d take it the wrong way, so I’m going to leave that discussion for another day. I agreed to visit her and that is what we’ll do. I will do all the preparation I must, cope with the car ride there and back, and try to smile while I wrestle with the kids while we’re there.

Maybe next time she’ll visit us instead. Wouldn’t that be nice.

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6 Responses to The social life of a mum of a 5 year-old baby..?

  1. Stef says:

    Sorry you find yourself having to reexplain things over and over again.

    • I know people find it hard to understand the challenges and realities of autism, so I shouldn’t be surprised. I just find it frustrating when it comes from people who I thought did “get it”. I suppose when you’re not living it everyday, it’s easy to forget.

  2. It is so tough, it is so nice to hear about someone dealing with the same problems. It is so hard to take my son anywhere, by then end of it I am always completely exhausted and it makes me want to just avoid any situation like that again. But then we would never leave the house … 😛

    • Exactly. You’ve just got to do it sometimes, and learn to deal with it, but that would be a lot easier if people understood (or tried to understand) the challenges you face. And it would make life that much easier if people were more willing to be the visitors and not just expect the people with difficult children to do the visiting. There’s got to be some give-and-take there, but there’s also got to be a bit of consideration and empathy.

  3. Jasmine says:

    Hi, I have an autistic 7yr son myself and 18mnth old (she can often be more of a handful than my son!) and although I feel your pain and angst in these scenario’s you have to make sure you don’t isolate yourself from parents with (dare I say it) ‘normal’ kids as you’ll just become a martyr in life. You obviously have a lovely positive relationship with your son but you need to extend this to others and let them love his idiosyncrasies as well. I’ve realised that the more you embrace those who don’t understand the more they appreciate what you go through each day. Please don’t take this as a criticism but I’ve learnt the hard way and used to be in your position and started getting frustrated with others but I have actually found stronger friends through making the effort to leave the house (easier said than done I know) and visit places and people. You CAN have a social life and you CAN enjoy outings if you keep positive even if on the inside you’re screaming! I really enjoy reading your blogs and do hope your son can still attend his school this year.

    • Thanks Jasmine. I appreciate you trying to make your point in a kind and understanding way, that was thoughtful of you.

      I take on board your point too, and I do find dealing with an autistic child quite isolating. We work on ways to make that easier for us and for him (such as using a timer and trying to pre-empt problems). We haven’t perfected it just yet, but we keep at it!

      I do manage to have a social life, if a somewhat limited one. Getting involved with my son’s new school should help extend the number of people we regularly interact with, who understand the challenges because they go through them too. I suspect I shall be blogging on what changes him starting school, brings to our lives, and I’m hoping that will be one of them.

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