General Chat

Lisa well done this is a brilliant thread, its makes me realise how lucky l am, puts a few things into perspective. Take care.

jude sarf wales xx

LISA........WHAT A GREAT THREAD,
i have no special children or grandchildren but i,d like to show my support hun if thats ok.xxxx

I ave a 11 year old daughter with high functioning Autisim, challenging behaviour & learning difficulties. Se attend a great SLD school were se can stay until she is 19 years old. Se was born 9 weeks prem and had a bad start in life, hydrocephelus and lung disease. Everday brings a new challenge but also raises so many smiles and has the most adourable smile. Many tears have been shed over the years but I would not change a thing her disabilities are apart of her and without them she would not be the amazing child she is today

Lisa

When daughter and SIL went to Court for custody they said all they wanted was for Kieran to reach his full potential whatever that was!!.
He does his own version of Makaton and altho we arnt versed in it we can understand him We know the signs for thank you etc and we all try to encourage him to say the words too and say well done and clap if he tries even tho its only an unregognisable version,sometimes tho its got the right intonation. like am.heg ipps. ."Ham,Egg,Chips" he loves the praise.

He has had loads of test,Chromosone etc and they say say yes he has a syndrome but we dont know what it is!!

What a good thread Lisa. Really does make me appreciate what I have. I would say that both my kids are special, but not in the way you mean.

This thread just makes me think what special parents you all are. You really are the special ones.

I am really sorry that they are going to withdraw Kierans speech therapy.My partner, myself and the school all do makaton with my Kieran.
But we are having problems with the toilet training as Kieran will not do anything on his potty seat but as soon as we take him off he will do it on the floor.
But he will get there one day.
We have really noticed a difference in Kieran since we took him out of mainstream school though.
His favourite makaton sign at the minute is thank you.
Thank you Shirley I was going to take that bit out of my post as I thought that i sounded quite cruel saying that about Kieran.

Lisa xx

I have a step grandson aged 7 also name Kieran. hes a special needs lad and goes to a specialist school for kiddies with needs.
he is a bright little chap who understands everything you say to him but was diagnosed with verbal dyspraxia cos he only has limited speech. But daughter & SIl were at his school this week to discuss his speech problems and they are withdrawing his speech therapy because of his short attention span. They now feel he hasnt verbal dyspraxia because since being with with daughter & SIL for 2 years (they got custody of him through the court) he has come on in leaps and bounds, his verbals are that of an 18 month old but hes adding words all the time cos they sit with him in the evening and ask him things like what you want for dinner and he will say "am,heg,ipps" We saw him lastsevening and he is so much improved in the last 3 months. Plus he has his own PC and can spell his name on the keyboard .
The school proposes to give him visual aids so he can converse and they will encourage him to say the words too. they feel he will eventually drop his version of makaton when he gets more words.

What we want now is him to sort out his toilet training . goes to the lav for a pee but STILL soils himself and it doesn't seem to worry him having poo in his pants and him being told he smells
they play it it with praise etc if he should poo on the toilet.

But hes a sweet kid and we all love him to bits.

He is SIL son by a previous girlfriend who wasnt looking after him properly and Social services got involved.

Shirley

I would just like to say thank you to everyone who has posted on this thread.
It is lovely been able to talk to all of you about your special children/grandchildren/nieces and nephews.
You are all remarkable people.
((((hugs))))
for each and everyone of you.
I never have respite for Kieran, I was offered it but I said no.
But I do understand why people have respite for their children.

Lisa xx

My beautiful grandson Callum.who will be one year old on Friday has recently been diagnosed with cerebral palsy, it appears to only be a mild form (he has a right sided weakness) but he is going to need a lot of suppport in the future with physio and occupational therapy, and of course, as he is so young we don't know yet what the future entails for him.

He is special anyway, being our first grandchild.

Kath

I have two healthy children neither have any special needs but I have been very humbled reading through this thread. You are all very special and fantastic parents and I can't begin to imagine the day to day difficulties you have. I wish you all a very Merry Christmas with your families.

Karen X

Hi, I have a daughter of 15 and she has a chromosome disorder number 2. Everybody says whats that! It where her number 2 chromosome has been damaged. She is physically and mentally disabled (hate the word handicapped). Husband left me when she was 2 - never seen him since. Not even a penny for her care!! Met a man when she was 4 and we now have a son of 8 and he has brought her up as his own. Aimee has a gastrostomy which is a tube that goes into her stomach. This was for milk feeds when she wasyounger but she now eats food but refuses to drink so fluids just go down it. Although she is unable to communicate she is the most funniest girl. She has bad hearing but her eyesight seems to be ok. Very very rarely cries and is just happy in her own little world. She has one special talent and that is being able to find any wardrobe picture in anybook any where. The fixation of wardrobes is really weird and people just find it absolutely amazing that she is able to do this. Inevitibly we are often down the argos shop getting the furnish magazines. Toys are a no no just argos books. The major down side with her is that she has a very rare disease of the bowel and has extremely bad wind and loose stools. We cannot take her out very often because of this due to the cleaning process but also the embarrassment of it all. She has had loads of major operations, twisted bowel 3 times (now she has hardly any left) hip reconstruction, knee surgery, the list goes on. I feel as if I now Gt Ormond St like my second home. We get 30 nights a year respite - which I know is a lot compared to other families. I am just grateful for that as I think Imay have gone over the edge. We tend to have a weeks holiday in the summer without her and spend a bit of quality time with our son.
Yes in a way we are special to have our special children but sometimes you sit and cry or scream out in frustruation and think why me!!!!

shirley
Stevenage, Hertfordshire

what a good compassionate thread Lisa and I am sure it is a help for parents of these special children to be able to chat to each other. you should keep it going like the fibromyalgia thread.

I think you Mums with special children are special Mums (and dads of course). Back in the 70s I used to help at a respite home for special children, some with Downs, some with other physical or mental handicaps. These were usually teenagers. One night I 'baby sat' while the people in charge went out. Just me and about 6 of the children, one of whom was in a wheel chair. They were all in bed but they were young devils and always up to mischief. i was glad when the owners came home! it was very hard work.

these days I am a trustee for gloucestershire Lifestyles a charity that works with disabled adults. I think I have said before that both the chairman and the secretary have CF, both lovely people (both male) both determined to live as normal a life as the rest of humanity will let them.

Anyway, give all your special children a gentle hug from me and have a big ((((hug)))) yourselves.

Ann
Glos

I have just had a look at the video.
Julies children are very special and it was a lovely thing julies daughter has done.

Lisa xx

Ive just had a look at the video thankyou for adding the link Carol.

Julie is right to be proud of her daughter and Billy she has 2 wonderful children that through her actions have learnt the real meaning of love, understanding and compassion even though they go through such hard times. The video really moved me.

((((((((((((((hugs to the whole family))))))))))))

Jax xx

I will have a look now Carol.

Lisa xx

I am adding this For Billys Mum, Julie, I think she is right to be proud of her Daughter for doing this:

http://video.aol.com/video-detail/special-billy/287625233

Yes it is great to get to talk to other people about Kieran as I never have anyone else to talk to.
I am really pleased that I did this thread now.
You are all fantastic people.

Lisa xx

Thankyou very much Deb.
I won't say looking after Kieran is easy as it isn't has he needs everything doing for him as the only thing that he can do for himself is to feed himself.
I have to get him up in a morning bath him, dry him and dress him.
And bless him he still wears nappies as well.
I won't deny the fact that I love the time when Kieran is at school and when he goes to bed.
And I am sorry if by saying that if I sound nasty but I am just been honest.
I have to do physio with Kieran everyday to.
I am really pleased that your story about your grandson had a happy ending Jackie.
((((hugs)))) for you and your children hoobity.
They both sound lovely children.
And I totally agree with you, they are all very special.

Lisa xx

p.s from my previous post
Lisa this is such a lovely thread and I hope that it has helped you to chat with other people whos children have problems.
You are all special people.

Merry Christmas and A Happy New year to you all
Jackie West Aussie

I feel for all of you mothers with Children that has difficulties through life God Bless you all and hope things improve for you.

My story does have a happy ending
My Grandson Lochie when he was 2 years old had a illness called Gulliain- Barr Syndrome. Guillain-Barre syndrome is a very rare serious disorder that occurs when the body's defense (immune) system mistakenly attacks part of the nervous system. This leads to nerve inflammation that causes muscle weakness, which continues to get worse. Only 2 in 100.000 people get this disease.
He was virtually like a rag doll and couldn't sit up. After taking him to the doctors 4 or 5 times and being told it was a virus I told my son to take him to Emergency at the Hospital. It took 4 days for them to diagnose what was wrong with him. He was in Intensive Care for 2 weeks and then it was a matter of months of Physio and tender loving care to get his limbs moving again. He didn't sit up for 2 months.
Some people never recover properly. My Son and his wife worked extemely hard with him to try and get him back to the little boy he is today. He is now 6 years old and is a very determined little boy. He goes to Kung Fu, Swimming, and this year was his first year at School. It was the worst year of our lives but thank God and all the hard work of the Doctors, Nurses and My son and his wife he is now a lovely well little boy. He still has to have a yearly examination but he is Fine.


Lochie's sister Keesha who is 8 years old is allergic to Nuts, some exotic fruits, and lotions and has to have a Epi Pen wherever she goes. Luckily she has never had to use it when she has been with me and I am very aware of what she can and can't have.

Regards One Greatful Granddma
Jackie West Aussie