007paul007

I have just been watching the news where the minister for the state was talking about the proposed reforms for incapacity benefit, while I know that there are people unfornately in this world that do play the system, I think these reforms are a bit of a joke. Yes I would love to see my son go out to work and that is what I have done all my life but despite my greatest wishes I don't think there is a job out there for my son. He is at the severe end of the Autism spectrum, with no speech, no sense of danger of pain, very vunerable, does not like interacting very much, cannot do many of the tasks people take for granted. In fact I think they woudl get great responces from the questions they might have for him, that if he takes any notice and does not freak out, add to that the epilepsy and the Irratable Bowel syndrome, I think he has enough to keep him occupied. It would not be so bad if the money they are trying to save was being spent to improve respite care. Also I loved what the minister said how work gets these people involved socially, a majority of people with autism cannot socialise but the thing is when you walk down the street with a child who has a disability of some kind and I am talking from experiences with my son , how people have stared or said something, because they do not understand, perhaps people should be educated by the government in some way or another. Also I disagree with the help that the one parent families are given , i mean what is out there for one parent families who are carers but would love to return to work ? I just think this is stupid and should be made more clearer, any way rant over i think its time to call my MP.

Mother in need have you come and popped in to the chat hours yet we have 2 a week now, satuurday and wednesday, so pop in and let us know how things are.

Hi I did not read the article but I have read all the posts on here and I am not out to attack or defend anyone. I have had the pleasure of meeting Ulrika Johnson on more than one occasion and I have even had a deep conversation regarding my son who is at the severe end of the autism spectrum, we had a very good long chat about caring and also the stress involved, i don't know why this was said and I am not really defending her, just saying that when I met her and spoken to her she has been very charming and I don't think her intention was to upset anyone as she also know sherself what it is like to care for children with disabilities, i suppose I just wanted to add my opinion.

I thought I would start a thread regarding the strain and the stress looking after children with autism can put on the parents. I know you miss things like social nights, and the bedroom side of things, but does it do more damage or does it bring you closer together. I know it has brought me and my wife and even all the family closer together, and i know without my partner there I would of cracked many times. I would like to think that she says the same about me. Are we lucky in a relationship or is it more common that the relationship end due to the stress ?

I got 16 !

Hi I found this and I don't know whether it has been posted here before, but i will post it just in case . The Mayonnaise Jar and 2 Cups of Coffee When things in your life seems almost too much to handle, when 24 hours in a day are not enough, remember the mayonnaise jar and the 2 cups of coffee. A professor stood before his philosophy class and had some items in front of him. When the class began, he wordlessly picked up a very large and empty mayonnaise jar and proceeded to fill it with golf balls. He then asked the students if the jar was full. They agreed that it was. The professor then picked up a box of pebbles and poured them into the jar. He shook the jar lightly. The pebbles rolled into the open areas between the golf balls. He then asked the students again if the jar was full. They agreed it was. The professor next picked up a box of sand and poured it into the jar. Of course, the sand filled up everything else. He asked once more if the jar was full. The students responded with an unanimous "yes." The professor then produced two cups of coffee from under the table and poured the entire contents into the jar, effectively filling the empty space between the sand. The students laughed. "Now," said the professor as the laughter subsided, "I want you to recognize that this jar represents your life. The golf balls are the important things--your family, your children, your health, your friends and your favourite passions---and if everything else was lost and only they remained, your life would still be full. The pebbles are the other things that matter, like your job, your house and your car. The sand is everything else---the small stuff. "If you put the sand into the jar first," he continued, "there is no room for the pebbles or the golf balls. The same goes for life. If you spend all your time and energy on the small stuff you will never have room for the things that are important to you. "Pay attention to the things that are critical to your happiness. Play with your children. Take time to get medical checkups. Take your spouse out to dinner. Play another 18. There will always be time to clean the house and fix the vacuum cleaner. Take care of the golf balls first - the things that really matter. Set your priorities. The rest is just sand." One of the students raised her hand and enquired what the coffee represented. The professor smiled. "I'm glad you asked. It just goes to show you that no matter how full your life may seem, there's always room for a cup of coffee with a friend."

There is also something a lot of other zoos do called DREAM NIGHT AT THE ZOO, i have never been to one of these myself but I think it is free entry and the children get loads of free goodies, apparently it is on the same night and zoos all over the world take part, i will post the date when I get it as well. Anyway here are the zoos Colchester Zoo Colchester 2004 Marwell Zoological Park near Winchester 2004 Chester Zoo Chester 2004 Newquay Zoo Newquay 2005 Belfast Zoological Gardens Belfast 2005 South Lakes Wild Animal Park Dalton-in-Furness 2005 Galloway Wildlife Conservation Park Dumfries & Galloway 2005 Edinburgh Zoo Edinburgh 2005

Well I wonder what Jamie Oliver thinks now ? The school where he launched his meals campaign has one of the highest truant rates in the country and some of the other schools are refusing to eat the food , I think this goes bakc to what I said about freedom of choice , if they ha dof given them a choice to eat what jamie has suggested and the old meals then it might of worked, but not to force it entirely on them. I wonder what happens now ?

There is a charity called HAPPY DAYS which pays for a holiday for your child and even your family to go with him if that is the requirement, you can pick anywhere you want and are given 3 choices. You used to have to be recommended by a health visitor but that was some years ago. There is a bit of a waiting list. Here is the link to the site I hope you find it useful http://www.happydayscharity.org/

Hev No you do not ask about DlA, they just ask what the disability is, As I say One carer goes free and all the other tickets are reduced and you have to book them in advanced, you can always ring London zoo and they will add you to the mailing list, but it is a fab day.

Thanks Mother in need for your kind words I hope you still pop in from time to time and say hello !

I know it is a long way off but just to let you know as soon as I get the details of Children with special needs day at London I will post them on this thread. The day is usually a saturday in June, and you get very cheap ticlets with one carer going in free, the children get things like badges free and for example the last couple of years they got a minature talking monkey radio. There are special meet and greet areas for children with special need sonly, you have to just show your ticket and you get a voucher which gives you discount in the gift shop. There are bouncy castles, face painting, bands and more more and even though the weather is unpredictable, it really is a great educational day out, and with there being so many other children with special needs around you can walk round without any of the people that stare. I thought I would post about it now in case any of you plan a special journey or day for it. I will post the date when I recieve it.

Ok Kirstie hope to see you there soon !

My son is quite the opposite he has no pain barriers , he could trap his finger in a door and still not budge or moan , he has a high threshold of pain.

My son was diagnosed with epilepsy for the first time in 2004 when he had fits for the time in his life, he also has Irritable Bowel syndrome and is at the severe end of the Autism spectrum. He mainly has fits, but he has had absences about once or twice , before he started fitting however , in fact about year before he had his first fit, he had alot of tremors, which at the time was put down to anxiety or being frightened by something, even the pead thought that , looking back now with hindsight it turns out he was developing epilepsy. He does not have any tics of any kind though, so i cannot help you much there.

Kirstie when ever they go take my son arm or hand to do and injection he just pulls away, I remember once some years ago my son got hold of one of them washing powder capsules with the liquid in and it burst before we could get it off him and it went in his eye. We rushed him up to hospital where a team of 5 nurses and 2 doctors and us could not hold him down to put the stuff in his eyes to wash it out. The doctor decided my son was in enough distress and stopped everything and gave us the medication to give him at home , that was fun, I tell you when we had to insert the medication into his eye I had to sit astride him, holding his arms back while my other half tried to open his eye and put the medication in. If social services had of walked in they most probarbly would of thought we were beating him ! It was the only way to do it at the time.

Thansk kirstie, I know what a barium meal is I had to have one once and nearly passed, I think it would be more stressful for my son he would not co operate with them very much, Imean the only way the hospital could take a blood test off him once, whe he was rushed in because of a fit was to do it while he was fitting. He had to have a MMr scan while he was sleepy from the diazpam they gave him for a fit. He is at the severe end of the autism spectrum , no speech etc and does get very stressed when going into places like a hospital, even the GP who he has got to know and is very caring and understanding with him , can often stress him out. I wonder whether he picks up on us parents worrying about him and that he has to go to the hospital and that stresses him more ? I don't know .

Well that's a good a start Kirstie lol ! Thankyou very much !

The thing is that the endscopy was to find out for definate if it was IBS, sometimes he is constipated and sometimes he has loose bowel movement, and its during those times that he seems to fit which he always has when he comes out of sleep. They were going to sedate my son as well being of problems , but I wonder if when he has he loose bowel movement that his epilepsy med is not so active then .

Steve I recieved this in an email over Christmas, just thought it would be good to put on here thats all.

Well it appears we are in a catch 22 situation regarding my son, for those that don't know , my son is 17 years old and is at the severe end of the autism spectrum, just over a year ago he was diagnosed with epilepsy after he had a couple of fits for the first time. He also suffers from what they think is Irratible Bowel syndrome, we have tried to to take him into hospital for an endscopy ( camera up the backside ), but when we giv ehim the medication to drain his bowels , he always has a siezure. Nearly everytime he has had a fit , we have found that he has the runs 9/10 before it, don't know if this is just a coincidence or whether there is a connection, but it seems we cannot solve one problem without creating another. Any ideas ?

Well Kirstie what do you think then ?

Try this out just for fun I think it is called Einstien puzzles. Pretty easy really Einstein's Puzzle This puzzle can reputedly only be solved by 2% of the world's population. It is known as 'Einstein's Puzzle' ...however for me the best part is he never wrote it... Facts: 1: There are 5 houses in 5 different colours. 2: In each house lives a person with a different nationality. 3: These 5 owners drink a certain beverage, smoke a certain brand of cigar and keep a certain pet. 4: No owners have the same pet, smoke the same brand of cigar or drink the same drink. Hints: from the following facts, can you determine WHO KEEPS FISH? 1: The Brit lives in a red house. 2: The Swede keeps dogs as pets. 3: The Dane drinks tea. 4: The green house is on the left of the white house. 5: The green house owner drinks coffee. 6: The person who smokes Pall Mall rears birds. 7: The owner of the yellow house smokes Dunhill. 8: The man living in the house right in the centre drinks milk. 9: The Norwegian lives in the first house. 10: The man who smokes Blend lives next to the one who keeps cats. 11: The man who keeps horses lives next to the man who smokes Dunhill. 12: The owner who smokes Blue Master drinks beer. 13: The German smokes Prince. 14: The Norwegian lives next to the blue house. 15: The man who smokes Blend has a neighbour who drinks water.

Hi Kirstie Well welcome to the group you finally made , I hope you tell others what it is like, not only the good bits but also the bad bits too !

I hope you have been to the group and checked it out , your more than welcome ! A HAPPY NEW YEAR to all on Krism from me and the group !