Wow how life can change in just a matter of weeks. I mean Life as we know it has been completely tipped upside down and shook and my god have we lost a lot our routines; School runs, commutes, work, lunches, after school clubs, gyms, classes, meet ups with friends.

Then we’ve lost our support, physiotherapy sessions, hospital appointments, hydrotherapy sessions, social workers.

And then boom we have lost our respite. Schools closed, carers can’t get in to see us and suddenly we’re left feeling very alone and vulnerable and we can’t even have our usual pick me up treat because all the coffee shops, pubs and restaurants are closed. And there’s not even a shoulder to snot on!!

I mean perhaps I could cope.

For a week, maybe two but how am I supposed to manage… home schooling, sen schooling, look after a one year old, manage all of Harry’s needs, keep the house tidy and clean, do the washing, fit in the exercise, cook and conduct Harry’s therapy?!

Wine I hear you say?! Well I suppose so but what I find is vital, is for me to look after my mental health during this time by scheduling in some time out for Me.

And yes we can find the time because it’s more important than that English lesson you have timetabled or that physio session you’ve planned. Because if you break then so does the rest of the family.  And let’s be honest the coronavirus doesn’t need to take any more casualties.

It’s not as easy but it is possible to step away from the indoor chaos we are now living in and do something that will help us to relax, de-stress and breath.

For me it looks like going for a walk or reading a book or just having a cup of coffee in the garden.

This is not a luxury it’s a necessity during these stressful and anxious times we’re living in. Take aways are gone, meet ups with friends are postponed, holidays are something for the future.

But whilst we’re in the now, find something to smile about each day. Find time out of the madness just to exhale. And then have some wine!

These sanctimonious, rose-tinted and insensitive posts that I often see popping up on the internet really drive me mad.

These messages that we are meant to believe and the lessons about our new existence that we are meant to swallow.

Before Harry I was Hayley from Northampton, loved music, enjoyed art and was moving into a career in Marketing.

Now I am Hayley * drum roll*.. Mum of severely disabled boy Harry and his two sisters (what’s their names again?).

You see, this is what happens ..we become defined.. never to be just Hayley again. And do you know what doesn’t help.. the messages that we see bandied about the media.

Telling someone who has a disabled child that what they are doing makes them a saint is well meaning.

However, for a mum who is struggling to find their new place in the world comments like this can make a person feel more isolated, defined and un-relatable in the realms of the normal families.

Also it’s that ridiculous ideology that we’re quite often subjected to that “Only special people are tasked with looking after special needs children, the people who can handle it”

Like what the hell? Talk about ways to make a person feel inadequate and guilty when they don’t want to or can’t handle it.

Guess what stupid “inspirational quotes” we are quite often not stronger, we are not more resilient more able to find joy in the smaller things and not made of stone like your twee statements suggest.

You see we know you mean well but your posts are damaging to many… we are just people trying to cope the best way we can, we just want to operate on the same level as everyone else, no pedestals needed!

We do not need praise for looking after our child, we have not been given any other choice.

So please quit it with the insensitive, trite, blanket statements about how parents of special needs children should feel or behave.

We do not need them.

We are all different, and I think it’s important to look for the individual when you talk to anyone no matter what their circumstances – no one wants to be defined by what’s happened to them, especially when they have so much more to share and to make life about.

Encourage the person to allow themselves time; time to themselves, time to rest and time to reflect.

It’s ok to not be ok, its ok to need help and to ask for it and its ok to have a whole host of feelings that nobody would dare write on a sugar coated post it note.

Motherhood is hard full of so many rules and opinions but who really owns the guide book? My advice is look after you and you will be far more able to tackle what’s coming and just be you.. with a child with special needs.

You’ve got this!