Bagpuss

Our Gazette is always featuring stories like these, try your local paper. I've often seen stories re disability rights on local TV aswell, families fighting for services etc, so give them a go. They all have websites, so you could email your story and see what happens. Watchdog or possibly GMTV is a good idea, hope it works out for you. Isn't there some sort of organisation which deals specifically with Disability Rights? Not sure who it is, will try and investigate it abit more and post again when i know more. Take care, Debs

During the Easter Hols our daughter managed to get hold of some kitchen scissors. She HAD blond ringlets half way down her back.....not any more She managed to hack half her hair off, including most of the fringe So, it was off to the hairdressers for the first time with her. We were so worried, thinking she would never sit still long enough, and although she is nearly 6 I've always just trimmed her fringe and left it at that. Too much of a wuss to attempt the hairdressers. But she was fine, and had a ball....anyways....... The following day she climbs into our bed, lays down next to us and flicks her new bob, sighs, and says "ohhhh, I think I need another trim" We hid ALL the scissors in the house So she found some marbles and ate one A & E suggested we get her to poo in a sieve Don't kids do & say the funniest things eh? Take care, Debs

I was so pleased to hear you had received such a positive reaction from your brother. Your mum may learn from him. It's often those who we least expect support from are amazing, and those we expect to be there for us are not. We have certainly learnt a hard lesson over the years, and have a totally different opinion of those close to us. Take care, Debs

Shona, My heart goes out to you and your family. What a nightmare! Does your daughter get any support at school or have a Statement? I hope the parents of the kids involved were also informed of their kids appalling behaviour. Its terrible that the school views it as something and nothing. Verbal bullying is just a destructive as physical, and could cause long term damage if not stopped immediately. I've never been in the situation myself so I can't offer any advice, but I have faced situations where I've felt helpless as a parent, and have been unsure of where to turn. The feeling of frustration is awful! I would start at your daughters teacher, then work my way up depending on the support I received. If the Head isn't sorting it, would the LEA or Governers be able to help in anyway? Sorry I couldn't be of more help and really hope this is resolved for you and your daughter. <'> Take care, Debs

Ouch...Sciatica The only suggestions I could think of have already been suggested . I've been referred to physio for arthritis in my lower spine, caused by spinal surgery when i was a teenager.......many, many, moons ago Anyway, I was referred in November....and I'm still waiting Took matters into my own hands and joined gym & go swimming, which is making me feel a little fitter, but isn't really helping with the pain and stiffness on a morning. Unfortunately I tend to react quite badly to anything stronger than paracetamol, which means my options are limited in terms of pain relief. I've considered TENS and also reflexology, as I've heard they are both helpful. Hope you are feeling better soon, Take care, Debs

Thank God for libraries hope its sorted soon.

toy

Mine is obvious I felt like a saggy old cloth cat the day i registered

Well Done Hev I joined a leisure centre in January, and go to their gym twice a week and their pool once a week. I was the same as you, abit nervous, with a belly that's nearer the floor than my midriff But eventually you just think, who cares, no one takes a blind bit of notice. I try and take the kids when I can, although if I'm honest I prefer to go alone. I find it so relaxing and its great to have some time to myself now all 3 kids are at school. Our daughter has a huge issue with wet floors and dryers.......she's terrified of both of them, so makes it abit tricky......seeing as she can't levitate If we do take the kids we try and take them individually, much easier

Hi Joanne, Our daughter flits from one obsession to another. At the mo she won't eat or drink anything unless its on a blue plate and blue cup......oh how i regret buying those coloured plastic cups and plates from Ikea She does pretend shes a cat, but not in an obsessional way, but the paws she makes are so cute Although did find her on all fours licking milk from a saucer Best of luck with it, and hope you find a solution soon. Take care, Debs

So sorry to hear of your sad news Jill. Take care, Debs <'>

We're the same with our dishwasher We're so lazy now, neither of us can be bothered to empty it before going to bed.......too manic on a morning to do it then. But we soon solved it, by paying our 12 year old son to do it I've often wondered the same........if we are an island, why are we short of water??? How can one part of the country be flooding while the other part have shortages??

LOL Not to mention the ICI looming in the distance with smoke billowing out Never mind eh......the lemon top ice creams make up for it

Hi, We're in Guisborough......although spend most of our time in Redcar! Our daughter goes to school there, and we tend to go there for shopping etc. Great in the summer for the beach

Hev, forgot to add, the Early Bird Plus is a course for parents for children diagnosed between 4 and 8. Those given a later diagnosis . There is an Early Bird course for those diagnosed younger. The main difference being that a member of staff from school are also invited to the Early Bird Plus course to work in conjunction with the parents. It's a 2 1/2 session once a week, plus two home visits, and we start our's next week and it finishes July. Hope to learn more about Autism, behaviour, communication, etc etc and hopefully meet other families. Take care, Debs

Hi, I wish I had a penny for everytime we were told by family etc that our daughter was just strong willed, that of course she couldn't be autistic....she speaks...autistic children don't speak do they.... Her diagnosis was played down...oh shes just like you at that age..... Very irritating, to have a huge impact on your life dismissed. Hope everything goes well for you and you find the support, help and advice you are searching for. I do think a definate diagnosis is better for you in the long run. Take care, Debs

A 3 year wait...thats truly appalling! Our daughter was diagnosed in November aged 5, and had been assessed for over 2 years. The reason being that our oldest daughter had been misdiagnosed with autism at 2, we disagreed, the diagnosis was reversed when she was approx 4.....Not a good time! Anyway, when concerns were raised about our youngest daughter, we were very, very defensive, so they took their time. By the time the diagnosis came, NOBODY , inlcuding us, were in any doubt!! Take care, Debs

Hi, You can claim mobility for a child younger than 5. My daughter was awarded DLA mobility and care when she was 3. Not sure about designated parking spaces, as we havn't faced this. We have Blue Badge, and have encountered so many confrontations in car parks.......young family, 3 kids....must mean no one is disabled then and we've stolen the badge ( and yes, we have been accused of this!). Before jessica got her first wheelchair a few months ago, she was using a major buggy, supplied by wheelchair services. It was appalling the amount of people who assumed that because she didn't have wheelchair she wasn't disabled.....oh, I've developed a very thick skin! If it were me I'd be contacting papers etc, the more you highlight this the better. Stay strong and keep fighting! Take care, Debs

I read this too.....very funny, very sad, but well worth it!

One of the worst aspects of our daughters diagnosis of Autism and MD were the reactions of some of our family and friends. We hoped for support, and received very little. They didn't make any nasty comments or snide remarks, but we just felt after the initial shock and horror, we were left to get on with it. I'm not sure why they reacted the way they did, maybe they felt unable to offer support, but we felt totally alone. We didn't expect to be mollycoddled, or to become the centre of everyone's world, but regular phone calls, visits, just an understanding would of been so great. Maybe everyone assumes that you "just get over it", but we never have. The result of all of this has been wide spread. We make very little effort now and treat people as they treat us. Several close relationships have disintegrated, and although I would of felt huge guilt about this previously, not anymore. The only people we want in our lives are the ones who love us, care about us, and treat us as we treat them, and its that only a few, then so be it. Don't beat yourself up about how others react. Hold your head up high. No one can understand where you are coming from unless they've walked in your shoes. Take care <'>

That brought a huge lump to my throat....really lovely! Well Done

Thanks for the warm welcome Lauren, Jessica doesn't produce a protein which keeps your muscles healthy. The muscle eventually dies, and muscle weakness occurs. It tends to affect boys, rather than girls, but unfortunately Jess is one of the rare ones. Children tend to lose the ability to walk between ages of 8 - 12, and it affects other muscles, ie. arms, chest, heart. Life expectancy is now 30's, although it used to be teens. Girls tend to fair better than boys, so we don't know how Jess will be. At the mo she uses a wheelchair for long distances, days out etc. She tends to fall quite abit and loses her balance etc. We've been advised that there is a link between DMD and Autism, but don't know if thats been proven. This forum looks sooo busy, will need at least another 6 months to catch up with everything Plus I'm a complete techo phobe.....PC's are baffling to me Thanks again everyone

Hi, I'm a newbie to this forum, just found it online, and wanted to say a big HI to everyone! Our youngest daughter (5) was diagnosed with Autism in November. When she was 3 she was diagnosed with Duchenne Muscular Dystrophy. Feel the need to find other people who know what we are going through, to share laughs with, and to learn more! Today we went to a meeting re Early Bird Plus, and are due to start course next week. Sounds promising