I feel guilty too, that we can’t, ‘just go’.
If we decide to make a trip, even to our local supermarket, it is planned, pre-planned with exit strategies all in place in case my son has a meltdown.
He cannot help these meltdowns.
He can become so overly excited or overstimulated that he has to let ‘it’ out, and letting ‘it’ out can come in bouts of laughter, screaming, violence, shouting curse words at onlookers ...the list is honestly, endless.
I have two other sons, one who has ADHD and a toddler.
Both are very aware of the attention their older brother can generate on a seemingly average family outing.
My middle guy, (who also has ADHD) finds it hard to concentrate on rules and guidelines when out and about, he finds his brothers actions embarrassing - something I can understand (and hope he will soon be less embarrassed about) this leads him to walk away and we end up looking for him in a state of panic sometimes.
My youngest, the toddler, is currently being potty trained and loves nothing more than running off while his eldest brother distracts mammy and daddy, he can be found peeing absolutely anywhere these days.
My point is, it is hard to go anywhere with my three sons and something I don't do by myself, ever.
The summer months will be long, where I will have to come up with games and entertainment all within the safety of our home.
I will have to rely on the weather - if it’s dry there is a local green park I can walk to with all three boys, but we can’t stay long.
The park is not suitable for my eldest son who has now become a wheelchair user.
He loves the chair but also loves to run, despite being in pain for days after a walk around the park, he will insist on bolting and this obviously leaves him in more pain which leads to more behaviour issues.
More guilt for me as the other two boys are running wild and free and so is Ethan, but I must reign him in and remind the boys we must go home soon.
Ethan does not understand why he is in pain and cannot comprehend that less running and more wheelchair use would ease that pain. I don’t want to force him to stop running either for I know one day he will not be able to run or even remember how to run and boy does my Ethie love to run.
We don’t go to the funfairs.
We don’t go to circus.
We don’t go to beaches even though we live on the beautiful west coast of Ireland.
We don’t go to adventure parks.
We don’t go to friends’ houses for barbecues.
All of this would require so much planning, replanning and being on edge the whole time, that there is no point.
We end up snapping at each other or worse, losing our patience with our boys.
We do, ‘our’, things and we do them at off peak and off season times because that is just a little easier for our family.
We just can’t simply, ‘go’, and to those of you who can, enjoy it, relish it - it is a beautiful thing to be able to wake up and decide to go to the beach today just because it’s summer …
This summer we will go to the beach, we will take a walk through our city and we will go to the adventure parks...we will just do that when everyone else is seeing a dull day with the chance of rain, we will take that chance.
To the parents like me, hang in there, I know how hard it is to leave the safety of your home.
Even with all the planning in the world, our kids can throw a curveball in a second.
I hope you guys get to the beach this summer.