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About claire4274

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    Salisbury Hill

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    Tyne and Wear
  1. Hi Amy, I am so happy for you and your family. At least now you may be able to get better help for Charlie. I'm afraid we have a bit of a wait for our CAHMS appointment. I phoned them today and was told the waiting list is at least 5/6 months. However, we have had our last appointment with the private speech and language therapist, who has been great. She has given us so much practical advice on methods to help with his behaviours. So we shall wait for her report. Although she cannot give a diagnosis of ASD, she commented that he sailed through the standardised tests and therefore on paper looks 'fine'. She did tell us that high functioning/aspergers can pass all of the tests. However, he has so many other of the traits and behaviours so she said the whole picture needs to be taken into account. She is also going to refer us back to the OT for Ben's Sensory Processing dissorder as his needs are not being met with that at the moment. Thanks for keeping me updated. Have a great summer too! Claire
  2. Hi Amy, well done! Rather you than me, I hate heights! It is a shame school only see him as naughty. Then again if it is naughty behaviour they don't have to give him help, whereas with a diagnosis they do. I think they see what they want to see. Well we have the opposite. Ben is apparently "model" pupil. It is at home that we get the meltdowns and behaviour problems. I hope you get somewhere at your appointment in August. It can be so frustrating. Let me know how you get on. Claire
  3. Hi Pinkystimp, I have heard of quite a few people with EDS who also have ASD, don't know whether there is some relation of not though! I really hope you also get the help with your son. Ben is also 8. I think in the past we have thought that Ben would automatically get the help he needs as he has so many problems. I think we were a bit naive. I think that we just have to keep fighting. The problem we seem to have is his 'perfect' behaviour at school. As soon as medical professionals hear this, that is all they seem interested in. Thanks for your kind words. Best of luck! Claire
  4. Hi Merlin1 Thanks for your comments. I agree that they like to tick boxes. The private SALT who we have consulted, and the school OT have also said the same thing. They don't believe that they are looking at the bigger picture either. Our son has so many of the behaviours but because school see no problems they don't want to know. We have been fobbed off several times before, but not this time. We are so sick of not getting any help for our son. This time we are going to fight until we find out what is causing our son's problems. That is one of the reasons why we have gone private for the speech therapist. Claire
  5. Hi, we did complete a sensory profile questionnaire with the OT, but not sure which one. As far as I can find out we don't need diagnosis confirmed by paediatrician.
  6. Hi, yes sensory processing is one of her specialities and yes Ben does have a diagnosis of it.
  7. Hi, just wanted to update. We have had our first appointment with private SALT, who we were very impressed with. She is going to come back several more times to carry out further testing, theory of mind etc. She agrees that from what we are saying a lot of his behaviours are typical of someone on the ASD. She has already given us some practical advice on how to deal with some of his behaviours. She deals with SPD in autism and is going to help us get help with that as she believes that he has needs that are not being met. When she has finished her assessments she will write us a report to try and get us the help we need. We are also on the waiting list for CAHMS and have been told today that the appointment won't be until the autumn! At least that gives us time to get the assessment done by private SALT. Claire
  8. Hi Lynne I understand that SALT can not diagnose ASD. What we are trying to do is find out what, if any, communication problems is has, because we know to get a diagnosis of ASD he has to have problems with social and communication. The local NHS SALT has carried out one test (ACE), found huge differences between the scores, but will not carry out any further tests, they want to wait to see what CAHMS say. We are currently on the waiting list for our local CAHMS. It's a long story, but we have been fobbed off several times before regarding his behaviours because he is perfectly behaved at school. Because of this, no one seems to be listening to the problems that we experience. Claire
  9. Hi, I agree that I think they shouldn't be waiting for CAHMS, but I think they are listening to the school and also to the same SALT that went to the school last year to see Ben. I certainly don't believe they are doing everything they can. I asked about the results. She said that sometimes children with ASD score the same way Ben did, but some children with ASD score low on all of them. They are not explaining the score at all. They have said on the phone to both myself and my husband that he scorred very well on the test. The difference in the scores seem to have been forgotten. Also the fact that she noticed he took a quite a while to process information has also been forgotten. I am waiting for a copy of her report. After speaking to my husband today, they won't do further tests, but want to help us get the help we need at home with his behaviours. Then do more tests if you want to help! So we are waiting for a private SALT to get back to us because I agree that a report before we are seen at CAHMS would be helpful, even if it is to help rule out ASD. Claire
  10. Hi, just another update. We have been told by SALT that they have spoken to the school, and predictably the school have told them wehat we already know, that he is a model pupil, no concerns at all. She has also spoken to her boss and they have decided that they are going to keep his file open, do nothing else at the moment, and wait to see what happens with CAHMS, when we get to see them! We asked if they would do the other standardised tests and they have said no. If he gets a diagnosis of aspbergers then they will see him again. Feel as though we are banging our heads against a brick wall! We asked if the SALT had seen anything unusual whilst she was assessing Ben and she said nothing that came to mind. So we are either barking up the wrong tree with ASD or they are not doing enough testing. So we are now considering going private to have these tests done because if we don't, we shall always have doubt. Claire
  11. Hi, We are currently in the process of trying to get our local SALT team to fully assess our son for Apergers syndrome, but have the feeling that we are not going to get the help we want. We live in the Tyne and Wear area and were wondering if anyone knows of a good private Speech and Language therapist who deals with ASD/Aspergers? Many thanks Claire.
  12. Glad to hear that you are starting to get help with your son. I agree that parents are sometimes best placed to realise that there is problems with their child. We have also questioned what we believe, often thinking is it just us looking for things to fit with a diagnosis? I'm not 100% sure what is causing his difficulties, but I am not prepared to be fobbed off again, like we have been in the past. No matter what is causing the problems, we still need help with him. One thing that I found interesting today was my husband spoke to his teacher about the results from the SALT and explained they want to speak to the school. She was suprised that he scored so low on the sentence comprehension part of the test saying that he is usually good at reading a book and understanding what was going on in the story. However, the SALT said that he was quite good at being able to answer questions when the answers were given or if he could see it in a picture, but not so good when he had to think up answers himself ie. what would a family do after they had been burgled (as in the test). I think he is very good at hiding things at school. At least school may start to realise that he is not managing maybe as well as they think he is. I have also already downloaded a copy of the SEN Code of Practice. Claire
  13. Thanks for that. I will keep you informed. Claire
  14. I think that if background noise is removed he can usually hear okay. With regards to reading, we have always done a lot of reading with him at home when it is quiet, no tv etc on, so I think that he has been able to hear. He also seems to have quite a good memory because if he couldn't read a word I would tell him the word and tell him to remember it. I would then after he was finished reading go back to that word and ask him what it was. He could usually tell me. Ben can talk to you about something and I think he expects us to know what he is talking about all the time. Sometimes you can understand what he is talking about, but if we ask him to clarify what he is talking about he will get angry and impatient with us. I wouldn't say that he appears deaf all of the time however, sometimes if he is engrossed in something you will have to call his name a couple of times. Or I can be talking to him and will have to ask him what I have just said to check that he was listening. This is especially if there are other distractions ie. tv, playing with something etc.
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