carrieq

Hi, I am looking for that illusive book too that deals purely with the dual dx. The best one I have read to date is "Kids in the Syndrome Mix of ADHD, LD, Aspergers, Tourette's, Bipolar and More!" by Martin L. Kutscher. It was easy to read and informative, a bit scary especially as it is thought ds may have some more "bits" added to his dx. I found it useful with some good ideas for school! Carrie

Caroline, I have heard very mixed reactions about Forteviot House, some say its great and others have said they question dx. This is in connection with ADHD. Go with an open mind and be prepared to stand your ground! E is very much the same as R and has been for the past 18mths or so. Every so often he terrifies a meber of support staff with talk of wanting to die and what he will do. To be honest apart from the time he climbed the barriers on the Forth Road Bridge while out with school no one medical has really raised an eyebrow. After that incident we got an emergency appointment and his meds for ADHD was changed to Strattera which apparently helps with anxiety. I hope you get this sorted quickly for your own sanity if nothing else!! Carrie

Ed Psch suggested ds be taught visualisation LOL!!! Imagine a beach, waves lapping against the shore type thing!! Didn't take her up on the suggestion Carrie

Thinking of you and your family at this time Carrie

Oh I am so sorry, losing a long standing pet is like losing a member of your family. Sending hugs to you and yours Carrie

Just had a really good meeting with OT. She is setting up a programme of interventions for ds and has suggested using items to help him be calm and lessen the effect of anxiety. She has suggested a tight neoprene vest that he would wear prior to the time of day he finds hard or before we need to do things like cut nails etc. He will try out a makeshift one first to see if it has an affect and then then we will buy the real thing. She has also suggested a weighted blanket for night time and a weighted "thing" to go over his legs when he needs to sit and concentrate. She feels he needs very firm touch to help him calm and these would be good ways of putting this into practise. Has anyone used these things, if so how did it go?? Thank you Carrie

Remember that your pass will allow you to stand in the disabled areas for the parades. These places are obviously not so busy so you don't have to worry about other people and they are at the front so you get a really good view. I was also really bad and toltally embarassed dh! Ds really wanted to see a character and I told him to queue but everybody else was pushing and he was getting really angry because no one was sticking to the rules. I showed his pass to the "minder" and the character, it was Stitch was taken over to ds for a considerable amount of time!! You need to get a different pass to use in the Studios. When you go through the gates the customer service is on your right hand side before you enter the big studio doors. Ds loves the "idea" of Disney but finds the reality very hard and the pass went such a long way to making the experience much more enjoyable for all of us. For the flights let them know either at check in or before boarding that you have a child with special needs. We were allowed on first which helped him get settled and didn't have to walk with crowds. Have a great time!! Carrie

Hi, Yes there are different ADOS tests for different age groups so they are more age appropriate but they still look for the same things. Hope it goes the way you want it to go next week! Carrie

Just before Christmas ds school mentioned in passing that they would be putting him forward for exceptional funding, but they wouldn't know what to do with extra funding if they got it!!!! I was really worried about the form so asked for a copy. It came today and thank goodness they have FINALLY described the child who I get forms saying they have restrained, has trashed rooms and can't be taught in a class situation. Better late than never and they have stated he would be better placed in a school with specialist provision which is exactly what i want for him. Tiny steps, and he has to get through the funding panel but this is such a crucial step and has been the first positive one since his dx!! Carrie

Hi Caroline, My only experience of "help" from CAHMS was a parenting course run by one of their nurses and our Inclusion Support Team in East Lothian. It was not aimed at our kids and they couldn't make it relevant. We do see a Consultant Psychiatrist at CAHMS and he is quite good, he does what I want!!! We are going to the Communication clinic on Friday so I am hoping for great things from Dr!! Some people really have no idea, if its not in a book. Your life sounds fairly similar to mine and typical of a family with AS!! Carrie

My dd has dyslexia and Mears Irlen. The two are linked but but not all dyslexics have MIS. The symptoms are very similar to visual stress and show as jumping letters, getting tired reading, headaches etc. When she was assessed it took a few sessions as her focussing muscles were very weak which again is common in dyslexic children as their eye muscles don't get used as often as they are less inclined to read. She had 8 weeks of exercises to help her eye muscles and then started using 2 light blue overlays and reading glasses which have made a tremendous difference. She uses both religiously and her reading speed, ability to concentrate, accuracey has improved greatly. She will have coloured lenses in the next few months when she is used to everything and her eyes are working a bit better. I would make sure everything is listed on her statement maybe even under sub headings of dyslexia so it is known how she is affected. Carrie

Well done for getting through the first step! My ds was dx ADHD Aug 05 and AS May 06 and this board has been an amazing source of information from people a bit further down the line than me!! Carrie

Another snap here!!! Mum lives a long way away from us so she has ds for a week twice a year and always says how great he has been, no funny noises, major strops etc and although I am pleased I feel awful and think is it all down to me, which is stupid because he has official dx!! I think we just snap at those closest because it is a form of release and we know the person won't think any less of us or take it to heart!! IKWYM about driving to school to avoid random comments to passers by etc!!! Carrie

We Center Parc alot!! Use the ones on the continent too as the chalets are the same set up and it looks the same, same feel etc so ds feels at home even if it is a different village!! They have all the same things but usually the pools are much bigger. The big downside is the travelling so go by over night ferry and the villages are usually no more than a couple of hours from the port. Being able to go abroad makes it feel like you have bbe able to "go" on holiday. Not tried package holidays since ds was under a year but he has trouble with strong sunlight and very hot weather so won't be putting on a bikini for a few years!! Carrie

This is one of the things I find hardest to deal with as it is soooo draining, your head actually hurts after a spell of going on and on. I try for as long as possible to ignore or remove myself from the situation for a wee while!!! Carrie

I would realy like ds to be educated in mainstream but the school he is in at the mo has no understanding, they have there opinion of an autistic child, he doesn't fit the bill so he is simply controlling and bad. A comment said to him before the holidays, in my opinion speaks volumes, he was told that if he didn't behave he wouldn't be allowed to go to the pantomime the next day. How can a child with AS and ADHD conform to that request???? My plan for 2007 is for him to be placed in a mainstream school with a communication base that he can access, just got to convince Education it is in his best interests!!! Carrie

Yes!! E talks alot about death, did it in his ADOS as well but didn't get addressed. Last year in Jan we were at crisis point whe he climbed up onto a viewing rail at Forth Road Bridge while out on a school trip and stated for weeks he wanted to die. He was put on anti anxiety meds. He talks quite calmly about wanting to die and states very matter of factly that he hates his dad. It was quite distressing at first and still is when he is in a rage and says it. We just pass over it now and don't draw attention to it. Probably not the right thing! He also has very quick mood swings and it can be difficult to keep up! We are seeing Dr who R sees on 12th Jan as he has been refered to Communication clinic as AS is now seen as his main dx. I hope she helps us with school as it is still a major stumbling block and I want him moved!! Carrie

Hope the party goes well!!! Carrie

DS dx with ADHD first then 8 mths later AS. He is also severely dyslexic and has speech difficulties. Heard Lorna Wing speak back in March this year and she said that all children dx with ADHD should be assessed for ASD. Carrie

Your son will have a different ADOS as he falls into the younger band. I was allowed to be in the room but not allowed to interupt, make comment etc. DH was watching in the video room. The test was carried out by 2 consultant psychiatrists. Ds spent a good percentage of the time sitting on his head. Watching the test was quite eye opening as you could see quite clearly where the differences between him and others were so it was useful but difficult at the same time. Dh had picked up a copy of an ADOS for a younger child while he was a paed in community but I can't put my hands on it at the moment. The bit I remember wa about play with bubbles and it was quite play orientated not asking for too many verbal responses whereas the one ds had did ask for him to express opinions. We got the results just over a week later. Good luck for tomorrow!! Carrie

Does anyone know what rights a member of school staff has to search a pupils bag without consent from pupil or parent? Ds is having his bag searched on a regular basis. He has a tendency to take things into school in his bag, either things to do with his obsessions or comforting things that i feel remind him of home which is his safe place. School are really nit picking about this so we have been searching him before he goes out but during the day he ends up with trading cards in his bag. Another boy is giving them to him. The school policy is children are not allowed anything in their bags but others are not subjected to the bag search as the school line is no one else is breaking the rules and bringing things in. I have highlighted my concern that if it is in his bag and his bag is in the corridor how is he getting out of class to get these items in order to cause a distraction. If they are going to be petty about this and put it above other issues then thats fine but I would like to find out my rights along the lines of ds human rights and in relation to discrimination as a result of disability? Any advice info or a boot in the right direction appreciated!! Carrie

Sending you hugs, its a horrible feeling and a worry with a younger one watching. I hope it helps with his statementing, if you know what I mean!! Carrie

Ds has a dual dx. In Scotland there is alot of talk about complex and multiple needs when you get towards the top end of staged assessment and this is where I see it being of value. I am pleased I pushed for the 2 to be dx as each condition just bounces off the other and creates a vicious circle with regards behaviour and ds state of mind. I feel that in order to get ds the support he needs and foster the understanding that he is not a bad controlling little boy, the labels go some way to making people think before they condemn. If you feel it is a correct dx then go with your feelings!! Carrie

I thought that as parents you are entitled to a certain number of days off for things connected with kids. Don't know details of the act but its the one that metions about flexible working hours etc and it covers children with special needs up to the age of 18yrs. Don't think it is just a Scottish thing! I hope you get it sorted, you certainly don't need the extra stress Carrie

Ds won't be assessed by ed psych here because she says he is unassessable and any findings would be misleading and couldn't be replicated as he is so unpredictable. In some ways I can sort of see her point but at the same time we really have no idea of his potential and as such don't know if he is achieving it. She is very reluctant to accept maybe she doesn't have the expertise to assess him and should pass him on to someone who does.......the fight goes on!!! Carrie