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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

Going to hospital/Seeing a doctor - Do you take info about your child's SN with you?

18 replies

coppertop · 30/10/2006 10:18

I was just wondering about this after ds2's recent stay in hospital. If you are taking your child to a medical appointment to see someone who has no idea about them or their SN do you take any pre-prepared notes with you?

I'm considering doing something like this in case ds2 has another emergency but I'm not entirely sure whether a doctor would actually bother to read it or whether I'd be able to explain things concisely IYSWIM. What (if anything) do you all do?

OP posts:

amphion · 30/10/2006 10:47

I know what you mean about explaining SN (in my case AS) to the dentist etc, and also to other people when out and about. Personally, I don't like to say 'they have AS' (especially in front of them), but you can explain their particular behaviour/need relevant to the situation e.g. 'I'm afraid he is really frightened of laying back in the chair' at the dentist and this is helpful to people I think.

r3dh3d · 30/10/2006 15:49

Interesting one.

So much of DD's SN are related to medical conditions anyway that it isn't usually necessary. If it's a new doctor I'll have to give the full medical history (a 1-hour job on its own, appointments are never long enough) and it usually comes out in the course of that.

It can be quite difficult if it's just a cough or something and we don't get our usual GP. I got one the other day who was persistently trying to engage her in conversation. I said "er... she has quite a severe learning disability, you know" and the doc got all hoity-toity and said that she was sure DD1 would like to be treated like everyone else etc. etc. (I thought "oh, gosh, so that's where I've been going wrong!")

I did take her to the dentist the other day. The dentist hasn't seen her for a year - I just said "I'm afraid she's got less compliant since you saw her last and is likely to bite you". Which she did! but the dentist was used to it, fortunately!

MrsForgetful · 30/10/2006 17:26

i carry 2 laminated (seriously!) cards in my purse- credit card sized... each one describes examples of likely behavior and on the back strategies etc. really useful if and when i go shopping- many a time have been stood in a queue and passed the card to sales staff who promptly move us to another till....

so would be ideal for a basic info list...and then you would probably want more detail for hospital etc.

i'm already making a new set paticularily for when my brothers baby is born... as we will hopefully then be able to manage a visit to hospital...however we have agreed me and dh will take turns taking one of our boys in at a time!

tobysmumkent · 30/10/2006 17:28

Message withdrawn

MrsForgetful · 30/10/2006 17:32

also...i find that to just say mine has aspergers syndrome is never enough...even last year when one of mine broke his arm... the nurse said 'what's that" when i was trying to explain his high pain threshold being part of his AS

redbullbloodandbump · 30/10/2006 17:32

we have the NAS autism cards when out if we have any problems with people so far since we brought them we havent had to use them.

when ds broke his leg in jan the doctors and nurses didnt have a clue what ASD was and how to treat ds even though we told them how to handle him, they refused to give him his medicine and left it all up to us as they werent willing to learn how to handle children with ASD

Original poster

coppertop · 30/10/2006 18:57

The pain threshold thing was something we had problems with when ds1 was ill when younger. That and the "Well it can't hurt too much or he would tell you" comments.

The staff on the children's ward were great. The problem was mainly A&E. Once the doctor saw that ds2 was sensitive to light he became fixated on the idea of meningitis, even when I explained that ds2 is always sensitive to light. Great that the doctor was so vigilant wrt meningitis symptoms but in the meantime ds2 was turning a horrible shade of grey.

OP posts:

lori21 · 30/10/2006 20:50

Have you thought about a communication passport? At our special school we make them for the children to take with them so that people get an instant idea of their needs.

Original poster

coppertop · 30/10/2006 21:14

How do you go about getting/making one?

OP posts:

eidsvold · 30/10/2006 21:51

ct - in some ways fortunately for us - dd1's sn is written all over her face iyswim - doesn't help when you have an ent consultant who wants to have a conversation and all dd1 is saying is yes to every question he asks - as she likes to please - so you still have to explain to them.

I usually say something depending on the situation - that is the info they gave - like when you said he is always sensitive to light for example.

I just worry about when she is older and out and about if something happens (touch wood) and she needs to have medical attention - that there is something I can put on her.

I have a card from her cardiac surgery that explains she has to have antibiotics before any sort of invasive treatment that may cause infection in the blood - so dental treatment, surgery etc. Her mainstream kindy were made aware of it - in case an emergency crops up, it is also in her hospital file, her GPs file and everywhere else I can think to have copies made for.

That communication passport sounds fab - would love to make one up for dd1.

Christie · 30/10/2006 21:57

This reply has been deleted

Message withdrawn at poster's request.

Woooozle100 · 30/10/2006 22:12

We were given a folder / booklet that we are to fill in and take with us. Part of some pilot Special Needs pack. Have never used it to be honest. A friend does, but she has found that doctors prefer not to read it and ask her anyway.

Had all these issues myself over the weekend when dd was in hospital. It is tiresome saying the same stuff over and over to every doc on duty.. "No - she has a form of cri du chat, doesn't have the critical region for the syndrome deleted.. does have a duplication which is more responsible for her problems..." Arrgghh!

MrsForgetful · 31/10/2006 12:21

christie..you helped me alot in the 'early days' ...so it was probably YOU that gave me the idea to produce the cards!!!
(the laminating is probably my contribution as we all know i will laminate anything if possible!)

Christie · 31/10/2006 18:25

This reply has been deleted

Message withdrawn at poster's request.

Joggeroo · 31/10/2006 20:50

After a trip to hospital where we didn't take any notes with us and in preparation for starting school we have made our son a communication passport. Used a couple of templatesas a starting point and put in loads of familiar pictures. He has one at school and takes one on the school bus, I have a copy in my bag, so next time we are at the Drs and get sent to the hospital we have the equivelent of a basic guide to cover communication/ self care needs/ likes &dislikes/contact details/things people need to know to keep him safe etc. It is written as positively as possible and from his perspective, but informative. We're converts in this house and think all pre-school children regardless of special needs would probably enjoy one. Look at the Scope website for ideas and callcentre.education.ed.ac.uk/index.html -have an excellent template. Our new laminator is lovely....

Original poster

coppertop · 02/11/2006 22:40

I'll have a look for those templates, Joggeroo. Even better if they can be laminated.

Would you believe that I'd never even heard of a laminator until I found the SN board? Maybe that's why I'm making up for lost time now.

I can see I'd probably have to adapt ds2's card/passport fairly regularly. Just when you think you've got the little monkey all figured out he goes and surprises you with something else.

OP posts:

BATtymumma · 02/11/2006 22:49

oh i am loving the laminated cards idea.

do you think we could adapt them and make ones that say " no my son does not need a good hiding, he i snot being naughty he is Autistic and this shops rubbish lighting is causing him to get very aggrevated"

can you tell we went to Asda today?

MrsForgetful · 03/11/2006 08:58

baty-theres actually tshirts available that say more or less EXACTLY that!

my own designs would be one that says "Don't Stare....Ask For Details!"

and one that says

"Please don't judge me...." on the front
"I'm doing my best " on the back

And then one specially for ds1 at the moment....one that he has no idea that on the back it says....." i'm not rude...i do respect my mum...i don't need an ASBO...I am wearing a hoodie to sheild my ears from the noise and my eyes from your stares"
(as everytime i go anywhere with him i get such disaproving looks at the way he speaks to me...he actually never swears at me (YET!) but when he shouts at full volume at me things like "will you just shut your mouth and get over here....NOW!" ...i actually think its just as bad as if he was shouting F words etc.

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