27 Mar 2009

But that's not what I expected!

Gordon and I took Duncan to the doctor yesterday. In my referral letter, they'd said that the building was being renovated in parts so we were to use an alternative entrance and that parking might be limited. Duncan likes going to this hospital, calls it the nice hospital as he likes playing with the toys in the waiting room.

Unfortunately, we were told to wait in a different area, crowded with people of all ages. Duncan was not pleased and wailed and cried and shouted. I asked the receptionist if we could go the other waiting room as it's what he's used to and what he expects when we go there. I hadn't known it would be so different and he was unprepared for such a change. I was told we could not.

So he cried and shouted some more and the others waiting either avoided eye contact or adopted that pursed lip, disapproving look at my "very naughty" boy and my inability to "control" him. I told Gordon (who was not able to help him either) that I was going to wait in the car and asked him to get me when they were ready. Instead he gave the receptionist our phone number and joined us in the car. After a few minutes we were called out and led to the toy filled waiting room which I'd wanted to go to originally!

What an avoidable load of hassle. Eventually we were seen, a full hour after our appointment time, and in a tiny room located right beside a load of builders wielding jackhammers and drills. All this conspired to make a very unsettled boy. Duncan played for a while but soon got upset again and was looking for a toy train he played with at a previous appointment there. I was utterly frazzled and Gordon wasn't doing much better.

I looked after Duncan in a quiet hallway while Gordon talked to the doctor. We're going to get some involvement for the first time ever from the social care team, who might be able to help us find some activities for Duncan. We also got a prescription for a methylphenidate drug at the lowest dose. I'll get the medicine early next week and we shall try it out, that is if I can get Duncan to take it, and see what happens.


AnnB said...

Oh Sharon, I'm so sorry you all had to endure this. It's soul destroying, I know. Hopefully it will have been worth the torture if the social care team proves to be helpful. In the meantime, have a good blow out - it always works for me!

Sharon McDaid said...

Hi Ann, it seems like problematic health care appointments was something we had in common this week.

I've put on some weight recently from all my consolation chocolate bars! But it could be worse.

I'll be sure to make the most of my time away.

jazzygal said...

Hi there...just dropped by.

What a stressful day for you. God i used to hate "those" looks!

At least Doc got to see Duncan at his "best"...if you know what I mean! So often u go to these appts and their like little angels.

Hope it gets better for you.

Anne Corwin said...

Eek, wow, yeah, that sounds like a terrible mess of noise and change! I would have probably reacted exactly like Duncan when I was that age. It's jarring enough when things about appointments change even now.

Also, re. medication: I've personally had a good response to low-dose stimulants; was on methylphenidate originally and take adderall xr now. So far it's the only thing I've tried that helps a bit with executive functioning/self regulation somewhat without causing other weird unpleasant effects (they tried me on Risperdal as a teenager and I reacted horribly to it).

Anonymous said...

It's quite typical I think of hospitals to keep us waiting but it's about time they began to understand the needs of children, let alone children with autism. I've been in this situation with Amy once or twice and have complained but it doesn't get you anywhere.

CJ xx

Sharon McDaid said...

Hi jazzygal, I know what you mean about seeing Duncan at his best/worst. It might have been instructive for the doctors to see him struggle like that and to understand how difficult things can be for him at times. And thank you, it's better for us all now again. I'm sure we'll have plenty more up days and low days though!

@AnnC, thanks for writing about your medication. It's a big decision to make, to medicate him, but while I don't want to give him drugs unnecessarily, neither do I want to withhold drugs that could help him cope better and learn more easily. I've just picked up the prescription so will see how it goes.

@Crystal Jigsaw, waiting with any child is bad but waiting with Duncan has been on occasion, very difficult to cope with. It's usually been very easy for us at that hospital but the renovations must have thrown everything off track.

Chun Wong said...

Why do people have to give you those disapproving looks?! I'm sure that they've been there too! Sounds like an incredibly stressful appointment, so I hope that you see some results from the meds.

Sharon McDaid said...

@Chun Wong, it was a mixed clinic and most of the patients were older women some of whom are a little less tolerant of what they perceive as naughty behaviour.

Lisamaree said...

Sharon, I wonder is there a day when you go from being a hassled Mum to pursing your lips and tutting? I am looking forward to becoming Katherine Tates Nana and sitting with the old ladies saying "what a load of old shit!" every time someone mentions mercury or hormones.
I am interested to hear more about the mede. We have been through hell recently with Bratty not taking hers properly some days and have asked for a dose review. Its chicken and egg when they don't/won't take it. I have got the psych thinking about abilify too , love hearing what your autie readers think of their meds too.