lorryw

Hello Liz You have my total sympathy. My son is 20 and I clearly remember a whole summer holiday of silly behaviour which drove me crazy. He demonstarted all the behaviours you mentioned and I didnt have a clue how to cope with him. Im afraid there are no quick fix answers. The best solution I have found over the years is to ignore which is sooo hard. Im afraid I have to admit to not being the most patient person but I now know from experience that the moment I react the behaviour will be stepped up a notch for use at a later date! I was reading an article about autistic children the other day. The guy writing really knows his stuff (he is autistic ) and he said that we actually dont give enough time for behaviour strategies to work. Im afraid I have been known to snap after what seems an eternity of ignoring a behaviour and then find myself leaping around the room screeching like a demented baboon whilst my son looks on in glee, back to square one. I find the pretending to be engrossed in a book strategy works for me, with the odd bored glance in his direction. Perhaps someone else will come along with other ideas. Good luck Loraine xx

I was banned from another site because of my views on chelation therapy and I feel so sad about the death of this little boy. I have read various accounts of these therapies and in all honestly I feel some amount to child cruelty. Poor little lad.

We have been to Florida and always found the welcome from the people at Mouseland not particularly warm. It seems that so many peolple claim to have a disability that the waiting lines for disabled guests are sometimes longer than the actual line. We have always been met with far more kindness and genuine concern over at Universal Studios. The staff are lovely in fact this year I didnt want to have the bother of going to guest services to get a special pass. Whilst going through the park entrance a gentleman kindly drew us to one side and asked if we realised we could have the pass. He then took us directly to guest services and produced three passes in about 5 seconds, no fuss, no bother, brilliant Loraine

Hi Shona, If you press Search at the top of the page and type in nappies you will find loads of stuff about free nappies and how to get them. I dont know about the sleepsuits but the Mum may be able to get help from the Family Fund with a grant for clothing. best wishes, Loraine

Ive also read and taken heed of the advice from Jim Crawford. He makes such a lot of sense and his ideas are straight forward. Good luck

He must have been one heck of an actor to have kept up so long and a slimeball.

Hello Annie, This is such a huge problem. It is so true that after school days have finished that appears to be it as far as responsibilty by the state is concerned. Once our children have left school what then?? Sadly the problems are not going to go away, the underlying autism will remain no matter how brilliant the school may be. My son left school over a year ago and it took 9 months for 2 short social service sessions to be put in place. We have also been told to apply (by social services) to the Independent Living Fund who will give us funding to employ a carer for him. However that is really glorified babysitting, we will have to find a suitable carer, pay them, arrange insurance, contract of employment etc etc. I have given up work to provide constant care and supervision and we dont leave the house in case of meltdowns, temper tantrums etc. He is a big lad and I fear the consequences if he accidently hurts someone. I recently read of a young man who injured a care worker and was arrested by the police for assault. He functions as a small child, has no speech and yet was taken to a police station and finger printed etc. I would urge all parents to ask questions of your local social services now, no matter how young your child may be. I know education is important but please remember your child has a long future ahead of them and at the moment there is no safety net to catch them when they leave school. I kept my head well and truely stuck in the sand and I dearly wish I hadnt. Loraine

Hi Tez I have flown with Virgin several times and we have never had to get their Doctors approval. I simply rang special sevices,explained the circumstances and that was all that was needed. I have always been impressed with Virgin and I do hope they havent introduced off putting red tape. We travelled for years with our son without taking advantage of their special facilities and it wasnt until he was 16 that I felt we needed to make them aware of any possible problems. Looking back it was a daft thing to do because we could have made our jouneys do much easier. Still, you live and learn. Loraine

Take a look at www.expedia.co.uk They are a good source of information. You can book flights,insurance, car hire etc in one go. They have special offers and deals now and again so its worth checking back every other day once youve decided what you want. Find out when its cheapest to fly over there. Flights to USA are cheaper at certain times of the year and you can save a fortune just by going a week earlier or later. Happy hunting!

Hello Amanda, Im sure youll have a brilliant time and the flight will fly by (no pun intended) We first flew to Florida (a 9 hour flight) 12 years ago with our son. I went to Woolworths and bought a selection of small, cheap toys, small packs of sweets, comics, crayons etc and carried them on with my hand luggage. Dont forget a small bottle of Calpol (just in case) and a pack of wet wipes. I presented my son with something from my goodie bag every so often as required. Does the plane have an inflight entertainment system, brilliant if you have a seatback screen. Have you prebooked your seats? Contact your airline and ask about having bulkhead seats which will give you more leg and wriggle room. Have a look on the airlines website, some airlines are brilliant with asd kids, Virgin are exceptional. Try and relax, you will all have a brilliant time. Love Loraine

Hi guys, I have a way of dealing with unwanted stares and comments. I pretend (in my head) to be my sons carer rather than parent. It works a treat for me, it allows me to take a step back from the situation and Im more able to cope with meltdowns etc. I work in a school and it suddenly dawned on me during a recent class outing that I could cope with the most appalling behaviour without turning a hair. Having stopped a fight, dealt with a nose bleed and soothed children frightened (and loud!) of going through tunnels on a recent train journey i realised I felt no embarrassment because they werent my children. Ive now tried it several times with my son and it works and makes me feel far more confident.........worth a try!! love Loraine

Have a great time......use alcohol to deaden the withdrawal symptons!! Loraine xxxx

Carole, please let me know how to add my support. Having read the article Essex County Council are are working to their own agenda. The police are apparently investigating a number of claims from other families concerning misrepresentation of evidence in civil proceedings. My own experiences of social services leaves me feeling as though Im dealing with a group of incompetent, make it up as we go along, never to be questioned idiots. Its deeply distressing that social services apparently have so much unquestionable power yet when help is needed are unwilling to provide it. Loraine

Blue, Totally agree with everything everyone has said. My son is now 20 and I have lost count of the completely stupid and irrelevant nonsense I have been told over the years by so called professionals. To be honest I think diagnosis is a waste of time. You sit and listen to what they decide is wrong but unless they come up with stategies and help in finding appropriate education etc what is achieved? Simply lots of heart ache and self doubt and a child who still needs help. I have been involved with a diagnosis procedure. My SENCO asked me to go through an ASD checklist with her for a particular student. One of the questions was.....does the child have an unusual hairstyle? After we had finished falling around laughing at the stupidity of the question we did question the validity of any diagnosis using these questions. Dig deep Blue and dont let the b****** get you down Lots of love, Loraine

I often wonder about the NAS. Over the years they been of no help to us at all. I emailed them asking what help my son should be getting from social services as I felt he was being discriminated against because of his disabilities. They suggested I find a solicitor with experience of discrimination laws. I have neither the energy or finances to go along that route and was simply hoping for an advocate service or something similar. I have been contacted by the Independant Living Fund (my son is 20 and lives at home with us) and the guy who visited said that the fastest rising sector was those with autism.

Hi Viper Sorry you had a not particularly great time but it is character building! We had a similar time in Wales a couple of years ago. Son had huge melt down on the beach and had to be dragged kicking and screaming back to holiday cottage. I managed to catch my little finger on the fence and broke it. I strapped it up myself but was in dreadful pain. Couldnt go to hospital because husband is the only driver and son would have completely freaked out if we had gone anywhere near hospital. I never did get it sorted and its crooked to this day. I rang my sister one afternoon, something I have never ever done but cottage had phone and I wanted some sisterly sympathy over finger. My sister couldnt believe I had rung because our dog was at deaths door at the vets having been ill whilst in kennels. They wanted permission for an emergency operation and she was worried that she would die under the anaesthetic. Dog had op and was fine (vets bill more expensive than holiday) We are going back to the same place in September...... Love Loraine

Johnny is gorgeous and I have it on good authority that e is a lovely person too. I heard someone who helps with The Make A Wish scheme. They took a group of children to the Willy Wonka film set to meet him. He spent hours with the children, took them to lunch and was wonderful with them. The woman who accompanied them had been aware of Johnny Depp before she met him and now she is besotted. Have you seen him in Chocolat? Delicious.....

Hi Tez Take a look at this site, click on faqs and have a look at the information on there. www.appeals-service.gov.uk I attended an appeals panel a few years ago on behalf of my son. The panel were lovely, a representative for a learning support charity, a solicitor and some other bod. They were appalled that we had to go to appeal. I remember the usher showing me in and telling me not to worry because I wouldnt be long and giving me a kindly wink. I was back outside after 2 minutes with my son awarded top rate DLA and mobility and backdated for 2 years! Good luck and try not to worry, let us know how you get on Loraine

Ive contacted the Disability Rights Commission with my concerns and Ill let you know their reply. Interesting to read that Hampshire are well known as a bunch of tight wads. Social Services also seems to be badly underfunded, it makes me so angry. Loraine

Thanks for the information Nellie, I will investigate further. Im cheesed off with the high handed attitude of the so called establishment. We have to jump through so many hoops for everything. Loraine

I have just received the renewal form for my sons Blue Badge. It contained the following footnote... People with psychological disorders or learning difficulties for example Downs Syndrome, behavioural problems e.g. autism, will not normally qualify unless their impairment causes very considerable, and not intermittent difficulty in walking. I feel very angry that my local council (Hampshire) is moving the goalposts and discriminating against specific disabilities. Does anyone have any similar experiences with their local council?

Hello Mandy, Sorry you are having such a tough time. Im afraid I can only offer a hug and a sympathetic ear. Please write to your community nurse and complain. We had the same thing with my son many years ago. I was the founder member of a support group who arranged funding etc for a play scheme and was then told my son was too low functioning to attend! I was livid but they couldnt guarantee his safety so he didnt go. I think if you mention that she is being discriminated against because of her disability they will sit up and take notice. I didnt have access to all the information available now and had no idea how to fight my corner. Have you applied to the family fund, would she enjoy a trampoline which is wonderful for wearing out our kids I really feel for you, been there and got the tshirt. My son loves water and I would run him a bubble bath mid afternoon just to keep him occupied. He is now 20 (its his birthday today) he is still non verbal but comunicates with a variety of sounds and a wave of the hand, never points. If you are ever feeling really cheesed off just send me an email, Im always around and happy to listen. Take care, Loraine

Viper, I am deeply impressed, a woman not to be crossed! Now if you could just help me with my incompetent social worker, wheres that number...? yours, in deepest admiration Loraine xxx

Happy Birthday Steve!!! I know how you feel, its my sons 20th birthday tomorrow.... I cant believe this time 20 years ago I was still pregnant and feeling like a beached whale. Happy days.

Congratulations, lovely news! Love Loraine