General Chat

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

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

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 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

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 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

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.

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!!

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

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,

Respite was a last resort for us. We only got offered it 5 years ago when life for us was really tough and I though I was going to lose it big time! At first it was really hard and I felt so guilty leaving her - but believe you and me she probably has a better time there than at home sometimes. They go out for walks, theme parks, parks, meals, they even took her to the cinema which I would never do in a million years. It also helps to give you and your family time to enjoy each other and be 'normal' for a while. As she gets older the harder it gets. She became a 'lady' in the summer and with that and her bowels it can be horrendous. My partner has been absolutely brilliant over the years with her but as she has developed over the last year feels it inappropriate to change her, unless I;m out of course.
Respite is a godsend and I can understand why you did decline it but in time maybe you will think again not only for yourself but for your family. There is nothing bad in doing it.

Shirley

i agree Shirley, we have had respite for 6 years now. was against it at first "she is my daughter I will look after her" ! In the end I had to back down and take it at the time I could go 72 hrs with just the odd cat nap and no solid sleep. I use to say what ever keeps her going I wish I could bottle it. Things are a little better now but her sleep is still hit and miss even with the medication she has. Respite was my saviour I was on the brink of a breakdown and was making my self ill.She goes every 5 weeks on a fri after school and return home on Monday. On those weekend we focus on our other daughter and go and do the things we normally are unable to do. I catch up on my sleep and just have some me time even if its a long soak in the bath. I am then ready to take on the world. She loves going they go out, havea fantastic sensory garden on site her bedroom is massive and she has made friends.

I think this thread is a great idea, I wish there was something like this years ago I am sure between us all we can support each other and ask for tips.
Sharon x

I have been so humbled by reading all these stories. I have a child who had speech problems but just speech difficulties.

The reason I am adding to this thread is because I am one of those people who works in a home which provides respite for children with special needs aged from about 6 to 16 years. We have a wonderful team of staff who are so caring with the children.

I fully appreciate and understand how hard it must be to let someone else care for your child and in a new place too. And then balancing that with the real need for a break.

When I first meet parents one of the first things they say to me is how they are having difficulty coping and they are at the end of their tether and how guilty they feel about leaving their child. Once their child has been a few times then they start to relax.

I hope I haven't come over as patronising on this message. I don't mean to. I did a nightshift at work last night and didn't get much sleep today as my kids were noisy. So I hope I came across ok.

Before I go I'd just like to say what a marvelous job you all do. As a parent you are not able to walk away at the end of the day if things get tough. That must be so hard at times. If my place is anything to go by there are some really nice places out there which can provide a high standard of care for your child. And a rest for you.

I wish you all a very happy christmas.

xxJanetxx

i used to sit and cry on my own when my son had finaly fallen aslepp and my baby had been given her last bottle and my eldest had gone to bed, i use to wonder what id done so wrong and what had made my blonde hair blue eyed baby, that was always smiling and such a pleasure, never cried and gurgled and cood, change one night after a injection into a crying head banging unresponsive unsettled baby, doctors told me i was a neurotic mother or it was my fault cause my husband had had a affair and i told him to leave, that it was my fault because i had moved house, david eventualy started school, of course he didnt co operate he was from a one parent family, his mother worked 12 hrs a day to give them a decent life, i was so bad i gave him dried bread for his lunch, although id already explained thats all he would eat, social services told me he was the middle child and that was the reason he was naughty because he hid behind the curtains at school, when we ate out on a special occasion david would hide behind the curtains, i asked him why he did that, he said its too noisey in here, poor love he was petrified, let alone hardly understanding what i spoke to him about, let alone a room full of people talking, doctors said i was to busy working to be a good mum, so told me to pack my job in and see how things went..
david refused school, and would run away helicopter would be out looking for him, my shed and home would be searched, i would be asked had i hurt him, we lived in a village so word soon spread, eventually we saw a child phsycolagist, who just confirmed i was to blame, bearing in mind i had 2 daughters in full time school doing brilliant, after a few failed suicide attempts my house items being totally destroyed, him trying to set a school on fire, attempting to kill his little sister, breaking all my personal things, all this because they failed to diagnose aspergers, this went on for ten years, i tried to lead a normal life but he would swear at people run in front of cars, if we went to the sea he would sit on a rock far away from us with a hoodie on covering his face in the summer, i blamed my self but new deep down it was that injection, finaly i met specky, who had to pin a now 6ft lad down from him attacking me, and his sisters, when we got into a serious relation ship with specky, and he didnt change, they finally let me have a volunteer barnados worker who would take him to mc donalds, she was a retired social worker , within a month of david accidently scalding his sister and showing no remorse, within a week he was diagnosed with aspergers, by now i was at the end i wanted to die and take david with me so he didnt have to suffer, i couldnt put a conversation together, nothing made sense, she told me that night a doctor would comimit me to a mental health hospital if i didnt snap out of it, so instead i did i sent away for books and leaflets on aspergers, moved away from my best friend and her family who had become mine and got him into a school wwith support unit we still had bad days but one sentance to david made the difference and that was david did you just understand what i said to you, usually he would say no, i would change it about untill he knew what i was saying, now i have a son 16 who converses, goes to college smiles and asks how i am, for my 40th he made me a card it said to mum, sorry im a tw=t sometimes, that was the best day of my life, of course i told him he wasnt a tw=t, i dont think im special, i chose to have a child, my choice my responsability until i die, times were hell, and id never ever thought he would live to be 16 especially having cut his wrist last year, but to see him go out to college on a train on his own, is a better feeling than wining the lottery, and like when someone said on here about petty squabling, and blatent stirring with thinley veiled comments, just remember this is a place to be comfortable with, aplace for people like me who have little family and disabled to come for peace give and take support, i wouldnt of wished my life on anyone and im glad i never took mine or my sons, for those with children having difficulties never ever give up find out as much as you can speak to people speak to me or specky, dont do it alone, we are only human and can only take so much, sorry i waffled my fingers dont hurt now xxxpuss

Thank you Maggy.
I am sure that Kieran will carry on coming on in leaps and bounds Shirley.
I don't know all the makaton signs as when I was supposed to go and learn them all in a class they where doing at Kierans school my daughter was in hospital after having had major surgery on her head.
Bless you and your daughter Sharon.
Thank you for showing your support Joyfull.
I agree with your reasons for accepting respite Shirley, and yes I agree that one day I will accept respite for Kieran as it will give me chance to spend a bit more time with my other children and Kieran would probably have a great time.
Thank you Janet, I think people like you do a fantastic job and yes you came across fine and not at all patronising.
My heart goes out to you Puss,
At least you never gave up on life.
And please feel free to waffle away anytime you want to.
((((hugs))))
Lisa xx

After the experience of waiting for my grandson to have a diagnosis to explain his little ways, we recently were told he is border-line dyslexia, and not Aspergers as first thought.
I am thankful to God, that we have him, and his little idiosynchrinies (pardon spelling) and have always looked on his positive abilities.

My heart goes out to people who have children with learning difficulties, and I admire them so much. My mother had a sister who was epileptic, and she had severe problems, but as I saw her regularly, I was never ignorant to her illness, and have always admired their strength to face up to adversity.

Keep going, all you wonderful children, and adults.

v xx

((((hugs))))
For your grandson and you Vods

Lisa xx

I keep coming back to read this thread.

It is a beautiful thread Lisa, with love, and wonderful stories of *trial and achievement*.

I think you are wonderful parents and your children are wonderful children.
I don't care what is wrong with any of our children..... nothing beats the huge great hugs, after even a short absence.

love from Deanna X

Deanna. Like you, I wouldn't care what was wrong with any child, as they bring so much joy to our lives.
As I say, even with two heads, you would still love our child. Nurturing and encouraging a child is an unconditional part of parenthood.

Hugs, kiss, smiles, from a child can't be beaten.

xx