Summer holidays for autism mums ... the reality!

These last few weeks my newsfeed has been awash with summer survival guides. Practical hints and tips for busy mums and dads to help us get through the long 6 week break, with the use of wine and coffee featuring heavily in most of them. And there is no end to feel good articles about beach holidays and top ten tips for everything summer related. But more often than not they seem to bear no resemblance to my life at all so I find myself scrolling on by without a second glance.

I myself as a blogger have jumped on the feel good summer vibe and written some of these very articles. All very pleasant enough it has to be said, but just a bit too ‘fluffy white clouds on a summers day’ for my liking really.

Because for me, the reality of summer can feel more like drizzle and thunder with occasional bright spells, rather than fluffy white clouds and wall to wall sunshine.

And I became tired of feeling that my life didn’t matter because no one out there was talking about the darker side of the summer holidays for families like mine.

Families living with autism.

But our experiences are worthy of being heard. The reality of summer for families like ours needs to be acknowledged and listened to, not brushed under the carpet and ignored.

Because our reality makes us feel like tearing our hair out with stress at times. The long expanse of summer can leave us exhausted and feeling like we’re simply not good enough to do the job of parenting our children. Vital services stop, support and contact are non-existent and we are faced with 6 weeks of nothingness to fill. With many families not even being able to leave their house due to lack of appropriate toileting facilities within our local communities.

So today I want to tell it like it really is...

To share the reality for many thousands of mums like me this summer.

In my ‘top ten tips’ for summer I had brushed past the days in which some of us can feel trapped in our own homes like prisoners because our child is so anxious to go anywhere. With social media and catch up TV being our only contact with the outside world for days at a time.

And I didn’t mention those days that we brave going out; only to have to return home after 30 minutes of anxiety and sensory overload, that lead to a meltdown and all eyes glaring at us as if our children had no feelings worthy of compassion or dignity.

I failed to mention the aggression and violence that we face when the anxiety monster swallows our children and we become the punch bag. The mixed emotions this leaves us with and the reality of our lives behind closed doors that no one talks about.

Or the days where we can’t scrape enough money together to take the kids on a day out because we need a second mortgage these days to be able to visit any family attraction. And the despair we feel at how other families manage it because we are barely managing to get by on carers allowance and minimum wage.

I glossed over the days when we are ready to explode after dealing with all the bickering, and sibling tensions. And how we just want to run out when our husband walks through the front door after work. Or we bite his head off when dumps his shoes on the lounge rug and we trip over them because we have had such a crappy day with no way of venting all that pressure, so we take it out on him.

I brushed aside the pressure that is put on marriages like mine because we never get to spend any time together.

In my feel good blogs I failed to mention the messy houses we find ourselves living in all summer long with no break. The flooded floors and cereal covered kitchen tables, the mountains of laundry and piles of dishes that seems never ending…day after day despite our best efforts to keep the house clean.

And it’s hard to admit the resentment we can feel when we see our friends Facebook posts of happy smiling faces on the beach. On bad days these pictures can make us feel like we’re living in a parallel universe to the rest of the world. A parallel universe that you didn’t ask to be on and sometimes find it hard to accept.

And not to mention the guilt we feel for our other kids. Not being able to spend time with them, not being able to do what they want, or them constantly having compromise to accommodate our child whose needs have to come first.

I missed out how peoples passing judgements and stares can make us fearful when taking our children out during summer. Those days when we don’t feel like donning our armour, because we just have no fight left. And all we want to do is curl up on the sofa and make it all go away. Why can’t we live in a world that accepts and understands our child’s apparent ‘naughty behaviour’ for what it actually is…. anxiety and sensory overload.

I missed out the sense of failure and guilt we can feel as we tell ourselves that we aren’t good enough.

Motherhood should be easy we tell ourselves.

Why am I struggling?

I should be able to do this.

To ask for help is a sign of weakness.
                   

What did I do wrong to deserve this?

And then to top it all off we feel guilty for thinking all those things in the first place because we love our children more than life itself and wouldn’t want to change them.

But the fact of the matter is that the 6 weeks holidays are tough. Tough for any family. And when you have a child with autism or additional needs the strain increases.

So please if you found yourself reading this to the end I won’t patronise you with any more ‘top ten tips for summer survival’ but let me instead tell you this…

You are good enough.

It’s OK to have bad days.

It’s not a sign of weakness to accept help when it is offered.

Don't believe everything that you see on Facebook, no- one’s life is that perfect.

The holidays are tough for all of us, you are not alone... believe me we all lose our patience sometimes!

Don’t feel guilty.

It doesn’t mean that you don’t love your children because you’re finding it hard.

There is an end in sight.

Your other children will be OK, in fact they will grow up with more compassion and understanding than other kids their age.

Sod the housework, and don’t stress over the laundry as real friends won't even notice and even better friends will ask you where you keep the iron while you make them a brew.

You need to look after yourself.

It can put a strain on your marriage but communication is key; men are useless mind readers, so talk to them.

There is always someone in your online tribe that can offer you a boost should you need it.

We can do this together!

And if all else fails my lovely fellow mummies…well like the feel good blogs tell us, there is always wine!

Your as ever
Mrs M x