General Chat

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Thank you for keeping this thread nudged Carol and Shirley.
Thank you very much Taff.
Thank you for what you said SD, that was lovely.
Sorry to hear that you had a bad morning with Boo Jax.
Thank you very much for putting that link up Sharon

Lisa xx

Here is a link someone passed onto me some time ago I was going to copy & paste but wasnt sure if I was allowed to, it gave me a boost on a day I asked Why?

http://www.aboutautism.org.uk/reflections.htm

I just thought I would share it with you all

Sharon x

Having a bad morning with Boo after being at her dads, its so hard when she comes back sometimes.

Jax xx

Great thread,
I would just like to say you guys are chosen for a special purpose in life and you all deserve as much support as humanly possible.
May you all have a wonderful and blessed Christmas.
Love and best wishes SD xxx

This thread is so humbling!
God bless you all and your wonderfull Children,
xxxxxxxxxxxxxxxxxx

A Night time nudge

Thank you Deanna.
I think it is nice how people can come together and talk about the special people in their family.
You truly are remarkable people.
I bet that your daughter and sil are so grateful to you for what you do for them and your Grandson Annie.
Lisa xx

In half an hour i will be going back to my grandsons house for the night.I have not stayed of a day as i have given him his own space.When i go back i will get him to do his blood so i can check what else he can or can not eat tonight.Then make sure he does his last injection.I have always been the respite for my daughter and sil.Since he was diagnosed i have had him at least twice a year so they can go away and get away with the routine that diabetes brings. Annie

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

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

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

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

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

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

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 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

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