Not so bad then, you might think, but I dread medical appointments these days. The night before an appointment, I feel quite tense because I never know what to expect, having had bad experiences in the past.
This one wasn't as bad as I had anticipated. He refused to be weighed or have his height measured and he threw toys all over the waiting room but he was good at waiting, for a change. The presence of other children, especially babies can be a key factor in how he behaves whilst waiting. We had an early appointment and were the only ones there, that was lucky. It's not usually like that. Jeff often ends up waiting in corridors with Jamie as he can't bear the sound of children crying and he really gets upset and angry. He usually attacks me but he will grab children if they are near him.
Jamie's biggest health problem is with his ears. He suffers recurrent ear infections and has done since he was a baby, this is when the fun of sitting in doctors surgeries, waiting to be seen, started. You can never just get an appointment and we have spent times, with Jamie in lots of pain and very distressed, waiting to be seen.
If he starts to attack people, I ask for a private place to wait as it isn't nice with everyone staring at you (sometimes complaining about you too). We have been put into rooms that are little more than cupboards at times. He then finds it easier to attack me but at least he doesn't get other people. Then, when you finally get to see a doctor, examining Jamie is another thing altogether. He used to struggle but now he is too big to hold down whilst a doctor looks into his ears. It is very distressing for poor Jamie but, of course a doctor likes to look before prescribing antibiotics. If you see a doctor you are familiar with (doesn't happen often), then he may be sympathetic and prescribe something on the basis that, as his parents, we know when he has an infection.
I dread going every time his ears flare up because you just don't know what you are in for really. He has a strange need to chew socks when he is getting an ear infection, this is one of the first indicators we have before he gets the bad pain, the fever or sickness. So, if you act quickly you can avoid the things that follow. He can scream for hours on end when he has a bad one and it is much more difficult to manage him, now he is bigger.
He has been in hospital four times for minor operations and these experiences have been even more harrowing than the usual GP visits. He has had anaesthetics for tooth extraction, removal of ear wax, insertion of grommets and one hearing test (before he was diagnosed). He won't have the numbing agent on his hands for the needles so my husband has had to take him down to theatre and hold him whilst they knock him out with gas. Jeff hates doing it to him but, left to me, nothing would get done.
The worst part, for me, is waiting for him to come back from his operations, it's never been long but it seems like it. When he comes back and wakes, I am so relieved. I tell him I love him and that I am sorry but it will make his pains go away. Of course, he doesn't understand but when he smiles at me, after a hour or so, I think I will never let him be put to sleep again and am so glad to see his little face. I want to cuddle him lots but he won't let me, I have to accept that. It must be awful when the two people you trust most in the world seem to be letting people hurt you.
He quickly gets back to normal and is never sleepy after it, it's really nice to get back home with him. I don't know how people who have seriously ill children cope, especially when they need lots of operations. They are all heroes.
Now that the winter is approaching, I am hoping and praying that Jamie doesn't get any ear infections or heavy colds this year. I can only think positive and take each day as it comes. I am much stronger than I used to be and this is thanks to Jamie really. He needs us to keep on fighting for him and being his voice so that he gets the best care and treatment that he needs.
Being Jamie's mum has certainly changed me and its mostly for the better. That's not such a bad thing. I have learnt not take no for an answer whilst fighting Jamie's corner and this can only be a good thing for his future. I don't sit and wait in the doctor's surgery for hours anymore. I am much more determined to get him seen to quicker and I feel sorry for people who are just starting out on this journey through life with autism.
My advice would be to be strong and never give up. Also ask for support and help, there is no shame in it. Make sure your voice is heard!