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Post by sockthing on Oct 8, 2013 12:03:26 GMT
Kipper was awake most of the night. Heirs clearly feeling very poorly. It has take me 3 hours before he allowed me to take his temperature and it is 38. 4. (101?)
he he has allowed me to take his ok top off and sponge him with tepid cloth. Have rung doc but told fully booked for today and to ring back in 2 hours to see if cancellations if I think urgent. so that's my plan
how do you cope with doctors visits and illness with a. Child with complex needs? He is hysterical about doctors whether well or ill, When we we go he refuses to be examined, gets hysterical climbs up me , hides under chairs, sobs shrieks. I have read him umpteen books about doctors, but no improvement. We role play doctors, but he will not allow me to be the doctor. I took him for practice visits for some months and we got to point where she could listen to his chest if I held the stethoscope, but this trust would only be with the one doctor anyone else and he's hysterical. admittedly I stupidly slacked off with the practicing.
A recent visit to A&e after a bumpy to the head took 3 hours, we were seen immediately but that's how long it took to get him to cooperate. It took them 30 minutes to take his temperature and they didn't manage to look in his eyes.
How do any of you cope with this difficulty...I find it one of the most upsetting and distressing aspects of his additional needs. How do you cope if a child just won't be examined? I'm guessing its an ASD or sensory related thing.
Having a very carp week!!
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Post by littlemisscheerful on Oct 8, 2013 13:28:42 GMT
Probably not what you want to hear, but mostly I didn't go.
I remember one incident when my yd, probably 6, fell and hit her cheek on a concrete wall, it came up like a balloon. I think that with another child i would've taken her to A&E but she would've sat in my lap, terrified, and refused to let anyone near her.
I put her on my lap, with frozen peas on her face and watched a video.
I use a homeopathic remedies rather than antibiotics, and can self diagnose enough to get by, and there is always someone at the end of the phone.
Both my girls have got better with age, but I think that is more to do with better understanding of why they need to go rather than 'they've got used to it'.
Just a thought, is your gp sympathetic to your plight? Would they do a home visit, - would that be easier for Kipper?
Sorry you're having such a bad week. LMC
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Post by sockthing on Oct 8, 2013 18:36:05 GMT
Thanks - it's helped to think that there is another mummy out there who just sometimes doesn't go when really she feels she should. I do go, but only if I really really think its necessary. I am hoping it will improve a bit when he understands better why doctors need to touch him.
I don't think home visits would help, purely because there is more room and opportunity for him to hide or run off!
Incidentally he won't even let ME put ice packs on him if he hurts himself!
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Post by littlemisscheerful on Oct 8, 2013 19:06:33 GMT
My ED once cut her feet on shells when camping. She was 7, and only told me after 3 days (when they were starting to look infected). She wouldn't let me near her, so I gave her a bowl of salt water to bathe it in and gave her a pair of tweezers. She sat for an hour picking bits out of her foot. Poor lamb.
She will now let me put a plaster on her (now 13), - but still won't sit in the dentist chair.
Really hard, hope he feels better soon.
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Post by sockthing on Oct 9, 2013 17:07:19 GMT
Thank you, yes it is stressful and I make it worse for myself being the worrying type. Went to the doctors yesterday and a little improvement ...though possibly because he was too poorly to fight back as much as normal! Littlemiss heerful -  That's awful! poor dd and poor you! |
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Post by sockthing on Oct 9, 2013 19:39:03 GMT
And as if to prove the point he slammed his poor little fingers hard in the door this evening!! No point attempting to run it under cold tap or use ice pack! Poor kipper not a good week.
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Post by sivier on Oct 10, 2013 19:43:19 GMT
Oh I just posted here but it seems to have disappeared...
Quick recap:
Bummer of a week +
Really not needed schools admissions ID c**k up +
It almost being Friday
=
Large glass of wine?
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Post by pluto on Oct 12, 2013 9:51:30 GMT
I advise you to desensatise him a bit. You use the example of clamming his finger, what happens if he burns himself? than running under the tap is necessary.(and really if you do not do that you are neglecting his needs, might sound a bit harsh but a serious burn needs direct treatment) If you tip toe around him because he does not want someting than he will become more and more controling and difficult to deal with. If you find it necessary to run his hand under a tap, do so. If he screams blue murder so be it. My oldest has severe autism so I know how ingrained patterns of behaviour can be. You have to be really carefull that your anxiety does not transfer to him. Why not let your husband take him to the Dr- next time and see how this goes. I would advise you to 'practise' skills with him intill he accepts them. Running a hand under the tap can be practised 6 times a day. Do not use ice cold water that hurts. You practise until he just let you run his hand under the tap. My child would never showed me anything what hurted or an injury, I have always insisted I needed to see, and if necessary moved his arms out of the way so I could see. Now he's just fine about it. Most of his 'wants' or 'do not want' were part of his autism(not attachment, he was not securely attached in any way but that is a symptome of autism, those kids have strange attachments) and no amount of empathy was going to help him. A neutral approach, this needs to be done or you like it or not is best. I remember he did not want nose spray, until I just holded him while he screamed and struggled and put it in his nose. This I only needed to do ones as he realised it was a huge relief. He would have never listened to me arguing how he would feel better, or any explanation. He had decided he was having none of it and that was it.
I prepaired him with video's and social stories about things I expected he might have problems with like dentist, flying, hairdresser etc. After that I took him and did what needed to be done to succeed. Time after time, over and over again.
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Post by sockthing on Oct 12, 2013 13:41:04 GMT
Thank you Pluto. I always appreciate your advice as it is experienced and no-nonsense.  However i would would hate for anyone to think that I am too afraid to see to Kippers needs. Yes that would be neglect...feel horrified if you think that's the case. Of course if it was a burn (or a more serious door-slamming) I would hold his hand under the tap or do whatever was needed. I managed to take him to a&E recently and get him x-rayed after a minor head injury. I also got his MMR booster sorted which I knew was going to be awful due to his doctors phobia but with careful planning And preparation he coped better than expected. I would say say I am not so much anxious (though of course sometimes) as find it stressful, in the way that a gradual accumulation of lots of different things can slowly mount up on you. It's exhausting ( I'm sure you know better than I). Things have improved over time and his attachment with me has changed. I can now put plasters on cuts and he is better about the docs with me than dad. I can can hold his hand under his tap many times a day when it doesn't hurt!! Another point is...I am not always physically strong enough to always just pin him down. It also enrages him to such a height that it doesn't achieve anything. We have learnt over time that it's better to let the moment pass, not lock horns in a direct conflict, but quietly stick to our guns and achieve it by slow stealth. From experience he doesn't respond well to forcing the issue, but will always get there if we push gently over time. Of course with health and safety you can't afford time. I realise it can sound to others like we tiptoe round him and in the last there have been times, especially early on in his emerging behaviour - when perhaps we did without realising ; but we try hard to keep boundaries in their place , but just have to do it in a very non confrontational manner. Having said that I have noticed that behaviours and expectations can become fixed quite quickly...and you are right there. We are on a steep learning curve. The last 18 months /2 years has been like being put in a tin drum with an exploding firework and pushed down a hill, with everyone around me either not believing that I am in the drum, or thinking that I am just rolling in the wrong direction. My family don't believe he has any special needs whatsoever, so I have no support there. I feel raw about it this week. |
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Post by oysterbabe on Oct 12, 2013 15:01:06 GMT
Sockthing, I want to send you cyber empathy and huge hugs. I have had periods on planet adoption where I have been disbelieved too and it's carp and really unhelpful. This emotional roller coaster is one of the hardest bits to deal with.
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Post by sooz on Oct 12, 2013 17:27:09 GMT
It is the constant, unending, exhausting battles that eventually get to you. Looking for advice on how to lessen those battles or just to vent doesn't mean anyone is tiptoeing around.
And if anyone has any advice on how to get my ds to open his mouth at the dentists please let me know. Having watched videos, cartoons and read books on going to the dentist, sat in the waiting room looking like a pair of loons opening our mouths and practicing saying aahhh. Mummy having her teeth checked first while ds watches. Dentist smiling and laughing with ds, taking him for a ride in the chair, letting him look at the instruments. Me buying the instruments so we can play about with them at home, teaching him how to use mouthwash and gargle. Offering bribes and plain old being stern...... Short of using a straight jacket and mouth clamp it ain't working!
That said, if ds has a real problem with teeth then it has to be done, probably with general anaesthetic. :0
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Post by pluto on Oct 12, 2013 20:08:15 GMT
However i would would hate for anyone to think that I am too afraid to see to Kippers needs. Yes that would be neglect...feel horrified if you think that's the case. No I do not think that is the case as all, just an example. Of course if it was a burn (or a more serious door-slamming) I would hold his hand under the tap or do whatever was needed. That is important, and just what I tried to say, if things need doing it will go ahead even if the child protest strongly.I managed to take him to a&E recently and get him x-rayed after a minor head injury. I also got his MMR booster sorted which I knew was going to be awful due to his doctors phobia but with careful planning And preparation he coped better than expected. It will get better it really will, how more often they go how easier it gets. And you will get better prepairing him and knowing what to put in place for him to succeed.I would say say I am not so much anxious (though of course sometimes) as find it stressful, in the way that a gradual accumulation of lots of different things can slowly mount up on you. It's exhausting ( I'm sure you know better than I). Yes it is and you probably have the feeling you are sometimes 2 steps behind him. With this I mean that things have already happened and you were just not in time to prevent it. My child was very hyper when I got him at 6, he could not be unsupervised for one moment. It was so bad that when I needed the toilet I let him sit on the stairs (beside toilet door in hallway) waiting as he otherwhise would have hurt the cat, put the gas from the cooker on, etc.
He was running of whenever I did not look at him, held him. Even paying in a shop was challenging as he was gone by the time I got exchange money back. So I let him stand with his hands folded and feet together when I paid. This might have looked very strange for strangers but it worked for me. You too will find solutions to make challenging situations easier.Things have improved over time and his attachment with me has changed. I can now put plasters on cuts and he is better about the docs with me than dad. Do not sent dad! 
I can can hold his hand under his tap many times a day when it doesn't hurt!! Another point is...I am not always physically strong enough to always just pin him down. It also enrages him to such a height that it doesn't achieve anything. We have learnt over time that it's better to let the moment pass, not lock horns in a direct conflict, but quietly stick to our guns and achieve it by slow stealth. From experience he doesn't respond well to forcing the issue, but will always get there if we push gently over time. Of course with health and safety you can't afford time. Ofcourse try to prevent physical interventions whenever you can. I would say choose your battles some things are more important than others. My family don't believe he has any special needs whatsoever, so I have no support there. This sounds maybe strange, soon they will realise. The autism will become more obvious as the children mature. My parents do not see my children often and we do a good job 'keeping up appearances' lol. Not reallly, they know what special needs my children have, but they are well behaved so it is not that obvious for the untrained eye. Beside the fact that we do an activity or eat somewhere, so there is not that much direct interaction. Now last time after nearly 7 years we were eating in a restaurant and my oldest was very aloof. Did not respond very well, was doing some strange things like looking at the lamp obsessively etc. Afterwards my mother said: 'I did not realise he was so autistic'.
Ofcourse she sees that very physical able child, the children speak her second language (so she might not pick up the echolalia so easily, and not realise how strange his speech patterns are), I told her he has severe autism, but somehow they do not want to know, realise, hope for the best.
I feel raw about it this week. Often I feel most challenging of bringing up disabled children is not their behaviours or who they are, but all the strangers, and not so strangers, and professionals and schools and, and, and who all have to say something about it. |
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Post by pluto on Oct 12, 2013 20:43:09 GMT
Soos maybe a silly idea but have you tried letting him go on his own and waiting in the waiting room? There is hope as you tried everything else, in that some problems get solved by maturing alone without any interventions, in 6 months or a year maybe he just opens his mouth . |
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Post by sooz on Oct 13, 2013 10:27:44 GMT
Not a silly idea at all, and I'm all for backing off and slowly pushing him to more independence (ie without mummy being right next to him all the time). It was quite an achievement yesterday that he managed to sit at a table in a busy place while I went about ten paces away to get us a drink and snack each from the counter, ok he had rabbit caught in the headlights look on his face the whole time but he did stay there. Just now, alone in waiting room would not work but we will keep on trying xx
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Post by sockthing on Oct 13, 2013 12:34:43 GMT
Thank you all for kind comments
And. Pluto (((thanks)))))
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Post by littlemisscheerful on Oct 16, 2013 9:02:20 GMT
I think that it's really hard when you only have 1 child to untangle their issues from your own approach. Having 2, I would say that Pluto's approach works well with my yd, - she once needed eye drops and was adamant she wouldn't. I manhandled her (!) to the floor, straddled her, popped them in, gave her a cuddle, told her it would stop stiniging and McD for lunch after hosp and she was fine.
That would absolutely not have been possible with my ED.
My ED has benefited from the desensitiving approach but she is that much older, and I do think changing schools has reduced her stress levels massively (I'm sure that this gives her more tolerance than she had) - I see it as school is topping up what we try to do at home, whereas her last school was using what we were given her.
However, if any of them broke a leg, somehow it would get fixed. (ED needed GA for some teeth work - the best approach would've been a tranqiliser dart at the door - but apparently they don't do that!!)
Sockthing, I do recommend getting your GP to write you a letter so if you ever need to go to A&E you can thrust it in their hands and they are less likely to think you are neurotic. I have a letter from a pysch detailing an approach we used to help ED get an xray - much more powerful than me telling them about her issues.
Sooz, I'm going to start a new thread on dentists, hopefully this evening.
Also, if you have any scheduled ops, the hospital will have a play therapist who can help in the process explaining what will happen. It would've been very helpful for us but I didn't know they existed.
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kazzie
New Member
Married Adopter
Posts: 13 
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Post by kazzie on Oct 16, 2013 13:49:03 GMT
Sooz I've just spotted this. DD is absolutely petrified of the dentist and this is a major issue for us as she may need major dental work as she gets older. She had most of her teeth removed when she was tiny which is the background for her anxiety but a couple of years ago I took her to our local hospital for a follow up appointment for a related operation that she had around the same time which includes dental involvement and I talked to someone there about our difficulties with routine check ups. At that point she hadn't let anyone look inside her mouth for about two years. They referred her to the hospital special care dental team and the dentist that she sees is absolutely fantastic - takes it at DD's pace. She will now let her look inside her mouth (with me sat next to her) and she has even had an xray done. She still isn't keen on the fluoride stuff mainly because of not being able to eat afterwards for a little while and on the odd occasion her dentist hasn't been available she hasn't complied with other dentists there. She still won't comply with our local dentist but I still take her just to get used to going and in the hope that the hospital dentist's work will give her the confidence that the local one won't do anything that she doesn't want done. I have to say that this dentist is a really special lady who gets DD and understands why she reacts as she does. You could say we speak the same language. It might be worth finding out if you have something similar available to you.
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dusty
Bronze Member
Married Adopter
Posts: 51
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Post by dusty on Nov 4, 2013 13:20:09 GMT
Oh dear. I have experienced exactly what you have and still do on occasions. Thankfully the frequency of the non-compliance has reduced with age and the shear number of visits required. Talk about making me feel a failure as a parent. On one occasion me and the teaching assistant were with my BC and my BC point blank refused to co-operate. The Paed asked me to leave the room and BC did exactly what was asked. As you can imagine it made me and the TA feel awful. Sadly all part and parcel of parenting a child with additional needs and as BC gets older my patience is getting less.
We also use PECS to go through everything first. The clinical psychologist from the hospital arranged for photos to be taken of the staff, ward, procedures etc including our house and car so that we could go through and show before attempting contact with the hospital. Believe me this really helped. I guess the same could be used if even doing a temperature or removing clothes at home. Just a thought.
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Post by peartree on Nov 5, 2013 8:22:12 GMT
This sounds really hard
And
The tough love facing things we fear is a challenge but I have to say there is some headway in this here
The fact my cousin is a gp helped
So less scarey altogether as she changes her babies napies!
She lets dd examine her with stethoscope before she does
Also have a word with surgery to visit them after clinic to visit
Might be tempted to do a mr tumble job and find things to spot there.
The powers the dr and dentist have were scarey for my ac
So explaining they have the power they have can be stopped if harmful
Etc
Might try visual timetables about typical visit
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That's awful! poor dd and poor you!
