Help... Any Advice welcome

[eidsvold]

Two questions I need help with..

The first is that I have been given a contact for a woman who wants to write a book about families with babies with down's syndrome and all the issues that come with that. We have been asked if we would like to contribute... a part of me says yes - anyway I can help other parents - I am happy to do so. A part of me says no as it has always been a dream/vague goal of mine to write a book - and I was thinking of doing it focusing on our life with dd and what we have experienced... so I kinda feel like I would be giving over a book or perhaps if I decided to do it later then accused of 'plagarism?'

What do you think...

Second question - Nursery want to write an individual care plan ( i'm assuming - nursery equivalent of IEP) What should we ask to be included... what do you wish you had asked to be included?!?! We are at a bit of a loss as to where to start...

Any suggestions gratefully accepted and thanks in advance I know you guys are brilliant with useful advice....

Eidsvold, can you just limit your assistance to practical issues rather than your actual feelings?

Ds2 hasn't started nursery yet, so I don't have any experience of icp's, but maybe it would help you to sit and write a list of all the things dd needs help with during the day, while she is doing them (like help with feeding for example). Otherwise it's really easy to forget I find, because we are so used to knowing what is needed it doesn't feel unusual iyswim.

agree with lou on both points

But try to put that she needs help with communication, Makaton for example. What OT/play therapy she is doing at the moment and what you are aiming for. Physio that needs to be done at nursery. Self-help skills she needs to concentrate on etc.

Agree with others. Self help skills are really important. For example one of the targets on ds1's current IEP is to take his coat of alone (previous targets have been to take coat off with adult physical prompt, and to unzip).

Not sure about the book thing- don't feel pressurised into either choice though0 do whichever you feel happy with.

aaawww jimjams take his coat off alone we had that one to do to recently, wait for 10 mins apparently we were told until the do it! Sorry I was not that patient but she can do it now, but I find if I am going out and making them wait too long their coats are off and on the floor before we go anywhere!

thanks for all your help and ideas... we are going to stress the makaton - especially extending it beyond her key worker to all the workers in the nursery. Informally they do whatever it is we say we are working on after our monthly physio/ot visits.

I have the opportunity to visit a special needs nursery some time in the new year and hope to take some ideas away that perhaps dd's nursery can utilise.

I like that idea dinosaur - have not really talked about it with dh but it seems like we put ourselves forward and it seems like it never stops. We got a call today asking if we would allow a young lady who wants to work with children with ds to work with dd. I have yet to follow that up. I want to be helpful and to 'educate others about ds' but sometimes i just want to be a normal family.

Perhaps I am taking on too much with full time teaching and making sure i get time with dd and dh.

Will let you know what I decide.

but thanks once again for your help. I really appreciate it.

Edisvold - your point with regard to wanting to help others but also wanting to be a 'normal' family really struck a chord. It seems when many of us become mothers to a child with SN we also become campaigners for them and their particular needs. A child under one arm and a clipboard under the other!!

Why don't you give the woman who wants to write the book a brief story, similar to what you have already given L.O.A.D.S. and then get to your own book in your own time, take 10 years to write it if you want. The longer it takes to write the more you'll have to tell.

Can't help with the nursery question i'm afraid.
Quick note re Mackaton though - once our DD's have learnt and mastered a particular sign we should then drop that sign and just say the word to them. There is a danger that they will only sign the word rather than say it and that's not what we want - it's a bridge to the spoken world so.....
Lots of love - TC x

Hi eidsvold, re the book I agree with Lou and the others about limiting to experiences.

As for the nursery plan, I put down what ds did through his day and night, his language skills also to the fact that I shorten his name and he answers to this shortened version also some humorous comments for example
his favourite- cuddles
his hobby- pulling hair trying to get cuddles
things he does not like-not being cuddled and loud noises
etc etc.
Just put as much info on your child as you can.
HTH.
BTW good luck on your book

Eidsvold: re the book thing. My questions would be the integrity of the writer (for e.g do you know her previous books? What is the main theme / objective of the book? would you have any powers of comment / veto over the way material about your family was presented etc, is it a reputable publisher, how 'sob story'is it likely to be etc etc)
AND I think it might be worth passing your questions past a professional writer, e.g Aloha, for her opinion on how to protect your material for your own book, or how to work with a writer who is researching material....Put the question on the Other Subjects with something about writing in the title to attract her attention?

thanks again for further ideas.... home today as dd is not well - got called out of class... but nice to be with a snuggly not too well babe.... rather than snotty adolescents who can't give a toss..... perhaps being called a t**t twice today does not help

eidsvold hope your dd gets better soon

she seems fine today doormat - thanks for your thoughts.... think she is fighting a bug.... oh well half term next week.