General Chat

There is only 14mths between my 2 girls, we have been very honest with our daughter from day one regarding our youngest daughters needs. Despite some people thinking we were wrong in telling her at such a young age as she wouldnot understand she wouldnt have understood everything I know but I feel we made the right choice in doing so. as they got older and we got the DS for Sophie we git lots of reading material aimed at siblings of disabled children. To cut it short I now have an amazing daughter who is a god send to me and helps when she can not because I have asked her but because she wants to. As Sophie still believes in father christams she tells all her friends who come to our house this so they dont spoil it for her sister. She is a very caring young girl, but that doesnot stop me from feeling guilty. I do feel that as there is such a small gap between them that she missed out alot as a young child.

Grannie I hope all goes well well
Andrea I fully understand what you said people can be so cruel and hurtfull. I have been told to "give her a good smack that will sort her out"............"she shouldnt be allowed her" & "I feel sorry for you"
SORRY why? I have a beautiful daughter who may be different to you and I but she is a human being just the same and she brings so much love into my life and she is worth every single tear that has been shed every sleepless night I have had

Ok I am going to sop typing now or I could go on all day!!! lol
Sharon x

opps just one ps
Im off to see Sophie in her school play today !!!

I have been blessed with healthy children and grandchildren but would ask you all to remember a little girl in our toddler group.
Her name is Alesha,she was born very premature
and was on oxygen for the first 14 months of her life.
She has been diagnosed as having cerebral palsy recently and has weakness down her left side so cannot walk or crawl but gets around by rolling.
She caught a bad virus that was going around and is currently in hospital with bronchial pneumonia,is back on oxygen and being tube fed.She is only 2 bless her and such a sweet little thing
Please keep her in your thoughts and prayers
love to you all
Bunny xxx

Kierans brothers and sisters do feel pushed out at times as Kieran has spent a lot of his life in hospital and we where spending a lot of time with him as I had to do all of his tube feeds and everything for him as a lot of the nurses would just leave him to cry, They didn't even go and see to him when his machines started beeping,
They also felt pushed out when their sister Rhiannon needed major surgery on her head as she had a condition called Unilateral Craniosyntosis and was in theatre for 8 hours and we spent a lot of time with Rhiannon has both her eyes swelled up and she couldn't open them and we didn't like to leave her so there was always one of us with her as she used to get really upset with her not been able to open her eyes, and she was on morphine for the pain as she had stitches from the top of one ear right over the top of her head to the top of her other ear.
Your children all sound lovely Kemp.
Bet Sophie will do fantastic in her school play Sharon.
And Sophie and her sister sound really special girls.
Kieran has really bad asthma and he has a milk allergy and he has a reflux so we have to check food we buy for him as there are a lot of foods that Kieran cannot eat.

Lisa xx

Will keep Alesha in my thoughts Bunny,
I am hoping that she makes a speedy recovery.
((((hugs)))) for Alesha and her family.

Lisa xx

Alesha is in my thoughts xx

Lisa, I thought that as sophie will only eat certain foods placed on her plate in a certain way was a pain at time, but compared to you I now no that its nothing, I take my hat off to you xx

Thank you very much Sharon,
Thats a very nice thing for you to have said.
I know how you feel though Sharon regarding Sophie only eating certain foods.
Hope you have a good time watching Sophie in her christmas play today.
Kieran was a shepard in his, They had to give him a mirror to hold as he wouldn't leave his costume on.

Lisa xx

sophie would eat for England if we let her !! Certain things can only be eaten in certain places ie she will not eat a sandwhich at home yet has them in her luch box at school! Food has to be arranged in a certain way which means her dinner is often cold before she eats it,it may look the same to us after adjusting it on the plate but not to her. Typical Autistic signs really adjusts the cup on the table and her chair until it is just so. If say her beans touch her egg thats a big no no and can cause distress.

Hoobity I wouldnt take offence no, however I dont like it when people say they feel sorry for me, that does bug me.

My brother-in-law is Downs and is now 42.
His mother looked after him up until 6 months ago when they both came to live with us. She is now 86.

S. has a mental age of about four and has never been encouraged to do things for himself or taken to mix with other people, he cannot read or write but eats quite nicely and washes, dresses and toilets himself. His sole occupation is watching television.

Mil won't be around for much longer and we are now both over 60. Life expectancy for Downs used to be restricted but S. is relatively healthy and I now worry that he will outlive us. It would not be fair to pass the responsibility for him on to our children (31 and 29) unless they offer, so if we predecease him or become incapable of looking after him he will probably have to go into care.

I don't like it when people say "we are so sorry you have a downs child",
When I had Kieran I received a text the day we was allowed home from the hospital from a so called friend asking if she could bring her mother and sister around to my house to see Kieran, When I asked her why as they hadn't been round to see my other bairns when they had been born she told me it was because they had never seen what a baby who is Downs looks like so I told her to bog off but not as polite as that and told her that he looks just the same as all my other children did when they where born.
I was so shocked that someone who i thought was a friend would have had the nerve to ask me something like that.
I really feel for your brother in law Brian, not having been encouraged to do things for himself and not having been able to mix with other people, and please don't think I am critisizing your mil as maybe she just wanted to protect him from the world like some parents do with their special children
Lisa xx

Just thought I would let you know Sophie did really well today.She was a pirate it was more a panto than a christmas play. She did make me laughat first as she was in scene one from the start she was waving a sword around asking if anyone had seen her mummy ?? Once she spotted me she said Hi and then was happy to carry on. She sang 2 songs solo with the mic "Dont worry " & we wish you a merry christmas.

Thats the trouble with people today,
They seem to think that by giving a child a smack it solves everything but it doesn't.
It's a shame that she won't look on the internet to read up about autism as she would learn a thing or to.
I am from Hull.
I am really pleased that Sophie did really well in her christmas play Sharon.
Bet you was really proud of her.
I bet that she did really well singing her 2 two solos.
Lisa x

sorry for taking so long to reply but have been having a big sort out today and have only just switched comp back on

up untill recently my step dad used to say a good thrasing never hurt anyone, dont think he has noticed his own problems in life due to being whipped with a branch when he was younger, hitting a child with autism spectrum or any child is shoing that it is ok to hit.

Lisa little white snowflake Thank you ...my children are great ....


My second one is home from uni and he saw this thread ......he says
What is normal?

he is studying Psycology and there is no where that REALLY tells you what normal is ........

I never hit any of my children as I vowed I would never be like my mother who used to beat me more then once everyday and most of the time it was for no reason, she was also the same with my elder sister.
When my children misbehave they get made to sit on the stairs for a minute for every year of their life.
People have called me cruel for doing that to Kieran but they don't think it is cruel when I do it to my other children, but when I ask them why they think I am cruel for doing it to Kieran all they ever say is because he is downs and he doesn't understand but he does understand a lot more then people realise.
He knows right from wrong just like the rest of my children.
I am pleased that your children are ok Kemp,

We use a smiley system for Sophie, if she is does smething which is not allowed she will get a sad face for the day (which she hates) if she has a week with no sad faces she gets a treat ( in replacement of packet money). This works really well for us, we use various charts and timetables for different things. Oue eldest gets a reduction in pocket money, so different methods but at the end both treated the same.
A question if I may, How are your children coping with the change at school due to christmas and the fact that christmas in nearly here?

I think the smiley system that you use is a really good idea, My eldest get a reduction in pocket money if they mis-behave.
All of our children have always been treat the same as well.
Kieran doesn't really understand about the changes going on at his school, he wouldn't have known that the dinner they had on Monday was an Xmas Dinner and he doesn't realise that the plays that they do are xmas plays.
To be honest I don't think that Kieran understands much about christmas but I am hoping he will want to unwrap his presants this year as he didn't start opening his presants until 4pm last year.

Lisa x
Are you and your children looking forward to christmas.

my son, dosnt feel anything for xmas either infact when he was younger and undiagnosed, he would have broken everyone of his toys by the end of xmas day, ive been giving him money last few years which he spends on musical stuff
this year the day before his birthday i asked him what day it was tomorrow (his birthday), he said he didnt know, and the other day he asked if we had had october yet.

Kieran is the same with his toys Puss, when he does open them he will play with them for a while but then when he gets fed up with them he starts throwing them and a lot of them do get broke.
I think that what you do by giving your son money is a fantastic idea,
Kieran never knows what day it is, he doesn't understand why we have a party when it is his birrthday or anything.
He gets really frustrated that he cannot walk when his brothers and sisters can.
And really angry if we don't know what he is trying to tell us, as when he uses Makaton he gets the signs for things mixed up.
We was told Kieran would be walking by the time he was four yet he still isn't walking and he is 7 in January but no-one seems to be concerned like I am.
Kieran can only say 2 words which are bye and dad.
We have been trying to get a stair-lift fitted in our house for 2 years but have been told that we don't quaify for one which annoys me as Kierans cousins mum had a stair lift fitted in her house even though her son can walk and can get up and down stairs aand she has never used hers.
Sorry to go off talking about christmas but I am just so annoyed how we can't get anything for Kieran to help him come on.
Our doctor has even taken Kieran off his inhalers saying that he hasn't got asthma anymore, but I wish that they where here on a night sitting up with him when he is really bad with his asthma.

Lisa x

lisa have you got a occupatenl therapist
if not try them, ive seen a few stair lifts for sale for 100 pound round here but i agree the council should give you one or the OT xxxxx

Lisa I would ask about an Occupatenl Therapist & speach & language. Sophie used a mix of PECS and Makaton which worked quite well. Now we have to write things down for her if she becomes frustrated as her reading skills are fantastic. Also have you applied to Family fund? they are very helpfull.

Sophie is very unsettles at the moment school routine has gone out the window which is causing her mega problems.This morning she was awake at 345am & wouldnot go back to sleep. She was quite violent again last night and spent a lot of time biting her hand. As lovely as it is to see all the children in the concert I sometime wonder how it affects the other children

Sharon