Mostly from well-meaning friends, some of my son's therapists or even strangers who see how much of a handful my son and how hectic life can be.
Long days, usually starting at 3 am, quite often even earlier.
Even longer nights, where sleep is nonexistent, constantly waking to comfort my son who's distressed for no obvious reason.
Meltdowns that can last all day, kicking, scratching and biting.
Appointments coming out of our ears.
Constantly having to fight for things he needs.
Constantly fearing my son choking (he has a poor/delayed swallow).
Constantly on the phone chasing up things such as equipment, tests or appointments.
I could probably write a book of all the, 'non normal', stuff we have to do just to get through the day but to save sounding like I'm moaning, I'll just leave that there.
The thing is though, I never really quite know how to truthfully reply to that question.
I mean, I never really think about how I cope... I just try to get on with things.
Don't get me wrong, I've had (and still have) many, many, days where all I've done is cried, stomped my feet, felt like a failure as a mother and wondered, "Why me? Why us? Why my son?"
Quite often, I sit down at the end of a busy day and find myself thinking, "Wow, how did we fit all that in one day?!" "How haven't I gone crazy yet??"
But when it comes to it, the truth is, I cope because I feel I have to.
If I didn't, my son would have nobody to fight his corner for him...
And that would make things a whole lot harder for him.
He needs me.
He can't speak, so I am his voice, I speak up for him.
I am his home therapist, therapy needs to carry on at home too, right?
I am his pharmacist, making up meds and administering them in the mornings.
I am his secretary, answering phones, opening and replying to letters day in day out.
I am his carer.
(Somebody needs to tell someone, somewhere, that carers need caring for too!)
But most importantly, I am his mum and I won't stop at anything to get my boy everything he needs.
When people ask me how I cope it sometimes feels as if they think it's, 'too much', then I start to second guess myself..
- Can I really do this?
- Yes I can, I have too. Am I doing everything I can?
- I'm doing the best I can. Is it all enough?
- I hope so.
I hope, one day, all of our hard work will pay off and we'll see some progress.
I'll admit, caring for my son is without a doubt the hardest, most physically and mentally draining thing I have ever had to do.
Every day is so, 'full on', and non stop until bed time (which doesn't last long!).
Some days we can go all day without even so much as a smile from him, but when we do get one, even just a tiny smile before bed, it makes it all worth it.
So, yeah, basically the short answer - to the question, 'How do you cope?' - I do it for my boy, he needs me.