carrieq

I have used the passes at Disney and yes I did feel guilty but when we stood in the queues I could see the difference between ds and other kids. He was getting uptight and stressed he made us all stand a certain distance from him and became quite obsessive about lines being straight, distance etc. I don't see him as "disabled" and think the term is possibly not quite right but on a number of occasions we have taken him out and he just hasn't got out of things that others get eg zoo refused to look at the animals. He has the same rights as everyone else to enjoy an experience and come away with a positive feeling and if this means he needs to use a different method of access then for his benefit we will do it. Other children can accept the need to queue and won't enjoy it but will do it, ds can't and doesn't understand why. I think there is so little open to our kids that when they enjoy something it is such a shame to put them through a stressful situation and maybe take away the fun element for them and the family as a whole. Carrie

I am filling out ds DLA form just now and feel the blue badge would be really useful. Last time he got highest care and lowest mobility. He has now been dx with sensory processing difficulties and can run that bit faster now so harder to catch!! He sometimes refuses to move and crawls on the ground and also panics in new places becoming aggressive or freaked out and needs a quick exit either way. Any tips for filling in mobility section and blue badge form welcomed!! Carrie

Hi, Ds didn't get a CSP. It was the outside agency support that let him down. He was seen as having complex and multiple needs that would go on for over a year and the significant level of support was being put in by education but the outside agencies of SLT, Communication Therapist, OT and CAHMS didn't have significant input, even though he sees 2 SLT for different things. He is seen in blocks which knocks down the degree of support making it not significant. Good luck with the meeting. From what I have seen with ds and in the school I teach in they follow a decision tree which is really easy to get down until the last box on outside agencies. The children I teach are mutiply disabled with visual impairment and complex behavioural issues and only a couple have warrented a CSP! Carrie

I work as a teacher of visually impaired. It is not often we are involved with children with monocular vision, in the authorities that I worked in, now based in special school. You seem to have concerns regarding mobility. You should be able to get access to a mobility officer either through RNIB or contact the sensory service direct and lay it on thick. If it is knocking his confidence and limiting his ability to get out and about then you are entitled to help even if he doesn't get seen by or is on the books of the VI team. A mobility officer would be able to look into the what and why and give help for how to overcome the mobility issues. Hope you get it sorted Carrie

Congratulations!! Glad you are both home safe and well. Hope Ailidh was well looked after on SCBU dh is one of the doctors there!! Enjoy your baby time Carrie

I think blaming the parents is a quick knee jerk reaction by schools to pass the blame back and it really annoys me. We have been in the same kind of situation with ds and the root of his behaviour is not me rather the fact he hates school but blaming the parents shifts the focus from them. Sorry it is something that really bugs me that extra stress and guilt is put on us at a time when we least need it. I attended a parenting course and as they said it wasn't aimed at children with ASD so was of no help!!! No help what so ever but just stand your ground, they are not the diagnostic experts, Carrie

Its a bit of 1 and 4. His behaviour is much worse in school where he is no way passive but trying to get school to understand that hie outbursts are the result of his ASD has been a major ongoing battle. Carrie

I was hoping this would get better when ds got older!!! So i've got another 10 years or so to go HELP!!! Feel a bit mean saying that as he is tidying up all the toys and organising the living room at the moment, everything in lines LOL Better than in a huge heap though! Carrie

OT made one for ds. Looks just like rompa one. Made from neoprene and velcro. Not weighted but gives deep pressure. OT has advised he goes messages in school with weighted backpack to give extra pressure. Carrie

I am so sorry. Hope you have got through the night ok. Thinking of you all Carrie

Well he didn't meet the requirements as his additional input from agencies outside education was only classed as high and not significant due to the fact that input is now in blocks (6 weeks on and 6 off for foreseeable future) and not continuous. Will check this out with ENQUIRE but really didn't expect him to get one! Thanks for reply! Carrie

We finally have our initial meeting today to see if ds meets the criteria for CSP. Just wondering if anyone has managed to get one? Have been told by Ed Psych that our authority will have only a handful of kids on them, just wondered what it was like elsewhere??? Carrie

Well done your boy!!! It is so loevly to hear good things about our kids!! Carrie

Thank you for the support!! I have calmed down a bit now but there is no way I will be letting this one lie!! Love Carrie

Here, here, its great to have somewhere where people understand!! Thank you all Carrie

WOW!! A great step, so pleased!! Carrie

I am furious. Ds and all of us go to a gym on Saturdays. He goes to a class which he has done for over 4 years. Anyway last Saturday he was walking poolside and flicked water in a boys face. He admits this but says it was an accident the water flew off his foot! The boys mother then shouted on him by the "Oi, you" method. Ds didn't respond so she went over to him and pulled him towards her and as ds says pointed alot at him. At this point he, according to the woman, no other witnesses and ds says he didn't say it, called her and her son f**king freaks. The woman then went into the changing room after dd and found her getting dried and screamed at her about how she was going to see me, where was I. DD was beside herself and just said she was really sorry about ds he has "problems". Dd told me about this as we were leaving when she saw the woman at reception and dd just broke down. I told dd what to do if it happened again (didn't know she had touched ds at this point) and thought this would be an end to it The womans' son is of mixed race so she has made a formal verbal complaint against ds saying he racially abused her son. Her complaint has gone to the regional manager who is investigating whether ds is a racist!! Have put in written formal complaint about her physically and verbally abusing my children and highlighted ds dx so they know any action has to take his disability into consideration. I am at a loss to see how what he is supposed to have said, no witness except the woman, is racist, except that he made a derogitory comment to a person from a margionalised group but it didn't make reference to his colour. Also ds has a language disorder and his clarity of speech is poor so how someone who has not tuned into his voice can completely understand him I don't know. I feel a huge mountain has been made out of something fairly trivial and I am so angry that someone thinks they can just trample over my wee boy. He will NOT take the blame for something he hasn't done regardless of his conditions. I find the fact that someone thinks they can pull ny children and verbally harrass them much more serious than a boy getting splashed in a swimming pool and then allegedly being called a name!! Oh I need to calm down a bit but I am just so annoyed...... Sorry about long post but just had to get it off my chest! Carrie

That's great news, know how you feel ds just got into communication base linked to mainstream, he starts August! Carrie

Don't know about ss OT but we are just into consultation with community OT. She saw me alone and asked where issues lay then did a sensory profile which showed problems in sensory seeking avoidance and modulation. Questions about how he reacts in certain situations, food issues does he seek out movement etc. She observed him in school, breakfast club and has put things in place for him. She gave him a hug vest to wear before stressful events like going to school. This only happened in last week and a bit so don't know if it is having effect yet! She was very helpful, listened to my issues and is really the first person who has put his behaviour dowm to the fact his mind is a difficult place to be with many conflicting messages and he is not simply trying to wind everyone up! Hope it goes well! Carrie

DD1 NT,bottom shuffled till 18 months, ds AS ADHD etc walked at 13 months but didn't talk till late and dd2 was walking at just over 10mths and doesn't ever shut up or stop moving until she falls asleep!!! All very different Carrie

Hi, Welcome Alexandra. I have found this place a great source of expereince and information. Look forward to 'hearing' from you!! Carrie

Oh thank you all, I am so relieved!! Just got to survive the next term and a bit!! Carrie

I heard today that ds has got his place for August at the Communication Unit that I wanted him to go to. He will be assessed in Dec to see if his problems are communication based or behavioural; Language disorder, AS, Sensory Processing difficulties and dyslexia purlease!!! Also reports from really respected Consultant stating he has communication issues on a number of levels. He is displaying in mainstream as behavioural but I firmly believe that is down to the place being unsuitable. I am soooo pleased and feel like a huge weight has been lifted as this place is so much more suited to him. Not too worried about the next battle as I have the medics to back us up and I am convinced his extreme behaviour will calm down significantly when he is more suitably placed. Carrie

Hi Kirstie, When I looked into it was told it is only if you have had to make alterations to property, ramps etc or need a separate kitchen, bathroom. The person with the disability has to have their own space aswell. This is in East Lothian but I presume it is a Scotland wide thing! Carrie

Thank you for link! Carrie