By By swan uk member and blogger - lukesadventureswithggd.wordpress.com
And then it hit me like a huge slap in the face, six weeks of what used to be fun and freedom was gone just like that.
Enter the world of Luke and GDD.
‘The holidays with limits. Shall we go to the park?’
I instantly think of slides that Luke wants to climb up, and water play that Luke wants to sit in until freezing cold and soaked, and then would happily sit a little more.
‘Shall we go to a soft play?’
Whilst reasonably safe I think of slides, noise, people, echos and complete stimulation overload.
‘Lets arrange a play date over the holidays.’
I think of kitchen cupboards to which Luke adores to open and close repeatedly, at home this is fine, Luke’s dad is quite used to tightening the hinges on OUR cupboards.
‘We could share a lift and all go out for the day.’
Instantly I think of how Luke completely meltdowns and cries every time I turn right in the car.
‘How about a coffee in town?’
This is probably a real dreaded one, Luke adores chair legs and will pull and push them for what seems hours.
Of course all of this is absolutely fine in our world, this is Luke, but throw in a summer six week break and a neuro-typical six-year -old girl and it really isn’t for the faint hearted or the uneducated of company.
You see things change, life changes, we’re not rude or anti social (well maybe the anti social might be a factor), but we do what works, and I learnt what works the hard way and not without a fight of the wonderful mummy guilt.
‘Why do we have to leave mum it’s not fair?’
‘I haven’t been here long mum it’s not fair.’
‘I’m just over on the grass Lacey trying to calm your brother down, you play on your own a moment.’
‘No we can’t do that Lacey, your brother may not like it.’
‘Come on Lacey we’ve got to go, your brother isn’t happy.’
Of course we go out, we do things, god help us were even attempting a holiday at the start of September, but we do things differently now.
Luke can’t tolerate or manage lots of things and many situations. He has sensory processing disorder, an undiagnosed genetic condition, global developement delay, social communication difficulties and autism, although we’re waiting on the official diagnosis of autism which I’m sure I will explain in another blog.
Let’s face it, when we have a child with complex needs it takes time to get our own heads around it – it’s not something that’s quick, easy or understandable to explain.
So we’ve been through the mummy guilt, the trying, and then I finally realise.
Yes it is the holidays, but does that really mean we have to go out to entertain our children every day? Of course it doesn’t – home is our safe zone, our calm, our relax, our island. We have a lovely garden with toys, a lovely home, and we embrace it and we are happy.
We enjoy our trips out and quite often that’s just me and Lacey with no worries for Luke – just undivided quality time together, or when Toby is off work so that we can tag team parent our children whilst out as a family.
We have trips out with ‘get it’ friends. If Luke is unhappy I can help him safely in the knowledge that Lacey is being looked after by the ‘get it’ friend (you know who you are).
So you see I’ve finally realised
Yes its the summer holidays, but spending money, trips out, meltdowns and the mummy guilt – is it really worth conforming to what society thinks we should be doing ?