General Chat

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

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.

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

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.

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.

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

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

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

Lisa xx

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

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

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 realised one day that this could happen to my kids .......
so when my son asked
Why is it always us ...I said "we are the raggy doll family"
at the time this was a programme on tele about dolls that had things wrong !..back to front...coz he had his head ...back to ......

My son loved it ...so thats what they are .....

Totaly agree Kemp about brothers and sisters.My grandsons sister (my grandaughter)has suffered quite a lot of being pushed around while everyone has fussed over grandson.She is so jealous of him and the attention he gets from his parents.She comes here and we give her all our time.I know it does not make up for the parents,but grandson is very bad with his diet and been told he will only make it to 18 if he carries on like this.My daughter is out of her mind.He is one of the nicest boys i know of but he is killing himself.Grandaughter is doing everything to get everyones attention. Annie

Grannie , hope all goes well


I have 4 special children !
Number 1 has autistic problems and caused me the most nightmares. bad behaviour and doing things he should not have done in public and at home. he would go out at 8 am Fridays and return at 3pm Monday evening ...he would go to London to see............he was 13 ! But he is now living on his own ...(in rented house) and doing really well ...well with a phone call or two!

number 2 was born 8lb 4oz and got gastric enteritis at 3 days old , he got Pnemonia at 18months and we nearly lost him! at 6 years old he got e-coli 0157. Hes now 18 and at uni.....he got top marks in england in all his A levels! and I,m proud,

number 3 has Asthma and dyspraxia and could hear till he was 5 ......

Number 4 has urticaria...food allergies

And all my kids are special coz they have got through all these problems TOGETHER.

I do understand you mums who have special children BUT we must also remember their brothers and sisters who go through this with them
SO a BIG cheer for BROTHERS AND SISTERS....XXXX

Thanks for this thread

I know how you feel Andrea,
When I have been out with Kieran people have stared at him and then walked back for another look,which really annoys me.
Hi Deanna, Hope you are keeping well.
I have not forgotten you either.
I really hope that your grandson is ok Annie,
I will be thinking of you all tomorrow.
Thank you Carol, I look forward to you adding your special ones.

Lisa xx

This thread is fab Lisa, thanks, I have my own special ones, will add soon,


Caz xxxx

My daughter had a phone call from grandsons consultant today.They are so worried about him and want to take him back in hospital.He has to see the consultant tomorrow urgent.He has protein in his urine. Annie

Andrea that is dreadful, the attitudes of some people.

Your beautiful daughter is loved by you, and loves you..... what more can any of us ask for?

I keep coming back to read this thread.
Thank you Lisa.... and I have not forgotten you love. x

Keep talking to each other, and I can keep *eavesdropping* on you all.

I think you are brilliant people.... all anyone needs is love, and your children have it in abundance. How lucky can they be?? :-0)

Bless you all and good night.

Deanna X

Hi

Just seen this thread and want to say hi to all of you with special children.

We have a sixteen year old daughter with Down's. She has none of the physical problems often associated with Down's so I know that we are very, very lucky.

That said, from time to time things have been hard - particularly when we have come across horrid attitudes from people - but she brings so much to our lives that is all insignificant.

Best Wishes to you all


Andrea

gentle nudge