Appointment Anxiety

I can be in the kitchen doing laundry or upstairs tidying up but the minute I hear the post land in the porch I jump. If it isn’t a bill or junk mail of some sort it’s invariably yet another appointment for my son.

The anxiety heightens as I carefully tear it open. There’s no knowing where it might be for or when because I have no control over either. It might clash with holidays planned, or school events or other responsibilities I have but that all just has to be forgotten about as they don’t mean anything.

I know his heath matters and appointments have to be attended but the anxiety and stress they cause is immense not just for me but for my son and the rest of the family too.

Sometimes I see the time on the letter and take a deep breath.

It might be mid morning meaning we miss the awful rush hour traffic and there’s a chance we might even find a parking space (which is as rare as hen’s teeth at most hospitals sadly). Rarely it might even be after lunch which means my son is happier and content having recently been fed.

All too often though the time causes huge anxiety because if it’s early meaning I have to leave his twin sister when she also needs me the most and getting there takes twice as long due to school and work traffic. Or if it’s so late in the afternoon then I’m driving in the dark with a fed up angry and hunger autistic teenager who can’t cope with the routine change.

Then there’s the added anxiety of whether he might require his care needs to be met while at the appointment.

Despite most being in hospitals or clinics sadly few ever have the necessary facilities required for a complex needs child to truly feel comfortable and we’re left struggling even to find a disabled cubicle big enough for us both to stand up in. Some even lack basic waste disposal facilities for pads giving me little option but to use unsuitable bins.

Then there’s the anxiety of waiting with an autistic person who has no concept of time and won’t sit quietly or patiently waiting to be called. He has zero concept of why he’s there anyway and just wants back to the safety of his own home. Who could blame him?

Add to that the anxiety of every transition from waiting room to consulting room, to car parks and even lifts. Every single transition bringing fear and agitation that builds up and up so by the time you actually see who you are there for your child is in a complete state of dysregulation making even hearing what is being said almost impossible.

Of course the hardest ones of all are those where the news or prognosis isn’t good and on top of dealing with my child I’m left struggling with the emotions of everything too.

Due to the fact there’s another child at home it’s no longer possible to have someone with me so the anxiety of remembering all the relevant information to pass onto my partner is heavy too.

After every appointment the whole family is left shaken; the changes to routine, the juggling of child care, the unknown, the stress of parking and being on time, the constant waiting and transitions, the going back over medical history time and time again. Arriving home isn’t the end of it either as I pick up the pieces of everyone out of sorts and desperate for normality to resume.

That is until the next appointment arrives in the post when all the anxiety immediately returns and we have to go through it all again!