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dana

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Posts posted by dana

  1. Posted · Report reply

    Thank you, Coolblue, for your reply. :)

     

    There is something else my son asked me which was for me hard to answer. The question was:

    The fruit and vegetables we eat, are they dead or alive? I told him if they are still fresh they are still alive and if they are dry and old thay are dead. :unsure: His next question was: So if we eat them alive then do they suffer? :tearful:

     

    Dana

  3. Posted · Report reply

    Hi Crazyaboutmoo,

     

    >:D<<'> >:D<

    Maybe you could ask for another NHS poediatrician for the second opinion? It maybe useful to consult some other private professionals such as SALT or ED for assesment? My son was first assesed by private SALT (speech and language therapist) who worked with the ASD children and put in her extensive report that her opinion is that he is somewhere on the ASD spectrum. Her report (together with ED report, SENCO report) helped when I took it to NHS poediatrician who then dx my son with clear case of ASD. I used the vouchers obtained from charity called CEREBRA which gives free £500 wortf vouchers for SALT assesments. Check their website.

     

    You can acctually order melatonin tablets from Kirkman but also through their representative in the uk : Th Nutri Centre tel. 0845 602 6744. We order ensyms and fish oil from them. It is not cheap, but it is better than nothing, especially if melatonin help your daughter with sleep (we also used to order it for ds from the same site).

     

    Try to get DLA for your daughter, she doesn't have to have dx for that. NAS and CEREBRA's site will help you with advice how to fill the form in.

     

    Good luck.

     

    Dana

  5. Posted · Report reply

    Hi all,

     

    I am sorry I haven't posted for a while. For us this was a very stressful time because we moved home yet again. On top of that it took 3 weeks for BT to instole thelandline and internet in our new home! This was our second moving home in 4 months. Luckily, we didn't have to change my son's school although we have to take him by car now.

     

    Last night we were invited for a bonfire night. This was the first time my son (who is 11 now)participated in such event. He liked it very much and all the time was helping around the fire, puting dead leaves in it. While he was doing it he kept asking funny questions such as: do dead leaves suffer in the fire? Will they come back to life in spring? Will they have afterlife after they burn?

     

    Dana

  7. Posted · Report reply

    I am glad everything is much better now with your family. :thumbs: :thumbs: :thumbs:

     

    Well done! >:D<<'>

     

    My son wants us to play a lottery every week because WHEN (not if) we win it :rolleyes: , he wants me to adopt him a sister with whom he will play. :blink: He has two much older brothers from my husband's previous marriage who don't live with us. He gets lonely, no friends. :tearful:

     

    Danaxxx

  12. Posted · Report reply

    We are sooo proud of him. :clap: It has been only the second week in his secondary school which he didn't even have a chance to visit last year as a part of the transition (because we had to move home). He was so scared last week before his first day at this school that he was sick the night before.

     

    I don't have ilusions, I know it is just the beginning of year 7 but this medal brightened my day today. He was the only one who got it and in front of the whole class (he is in Achivement Support with 15 children, all statemented, only one TA,without knoladge of ASD).The school itself is huge, with 2300 pupils.

     

    I know that they are not putting too much preassure on them now because it is just the start. I wonder what will happen when they do. :unsure: Today, he was very proud of himself. :dance:

     

    Danaxxx

  13. Posted · Report reply

    Thank you all for your replies. :)

     

    I just want to point out that my OP was a question not a statement. I expressed how I feel about it but that doesn't neccessarily mean that to act upon my feeling is in the best interest of my child. That is why I wanted to hear from you your oppinions and experience about it before I decide wheather and/or how to tell ds about it.

     

    I appreciate all your views and advice. 'Acceptence' is indeed the hardest step to take. The big question is when and how and I personally think that the wording is important, esspecilally for the child who is still developing his sense of self. Even for NT people is sometimes/often hard to accept their shortcomings in everyday life (IMO, that is one of the reasons this world is the way it is!).

     

    I think the most important thing is wheather or not my son is aware that he needs help and is willing to learn to cope in this world. And I am deffinitly not going to deny to him the fact that he does have problems. It is important that he is aware of them in order to accept them and accept the help available. If he decides to call them 'disability' later on in life- I don't have any objections. It will be his choice.

     

    Danaxxx

  14. Posted · Edited by dana · Report reply

    Thanks for your replies.

     

    I see what you mean, Baddad, and basicly I agree what you say. The thing is, I really don't see his ASD as disability myself. I explained to my son that having ASD is the way how he is different to some other children and that we are all different, that some children are better in some things than him (like socialising and focusing) and that he is better than other children in other things (he has past piano grade 2 recently with merit, almost distinction).

     

    I don't like the word 'disabled' in general. It is negative per se. It focuses attention on what a person CANNOT do, on imperement rather than the whole person, his/her character, dreams, abilities, wishes, hopes... One thing is to accept what one cannot do and learn how to cope with the world and my son hasn't got problems with that: he accepts SALT and OT therapies, tries hard to overcome anger (he is much better with it now)etc. However, totaly different thing is to put a label on the whole person for it.

     

    I know quite a few 'disabled' people who themselves wouldn't like to be seen as such. They like to be seen for WHO they are rather than what they cannot do.

     

    Danaxxx

  15. Posted · Report reply

    Hi

     

    My ds(11) knows about his ASD but I explained it to him as being different in a certain way. I find it very hard to tell him that it is a disability. He told me that he is not disabled when I only mentioned that I want to help disabled children.

     

    I don't feel right to do that, it breaks my heart and it will distroy his self-esteem and confidance if I try to convince him that he has disability.

     

    Any opinion and advice appreciated.

     

    Danaxxx

  17. Posted · Edited by dana · Report reply

    >:D<<'> >:D< >:D<<'>

    I feel for you, Pete.

    Please remember that none of us are perfect so nor your wife. You had to 'put up' with her too!

    Surely, having AS or not,you must be a good person and have good qualiities if you stayed together for 23 years. You also have nice children who you brought up as well as your wife. You should be proud of them too!

     

    Danaxxx

  18. Posted · Report reply

    Hi Paula

     

    I really feel for you and your ds. >:D<<'> >:D< >:D<<'>

     

    Please, don't regret anything from the past. You have always been a good mother and tried your best. The fact that you were employed at some point doesn't mean that that made your son worse. Unfortunately, ASD is a lifelong condition and we as parents can only do what we think is best at a time. There is no such a thing as a perfect decision.

     

    I wish you both a very best with the transition. >:D<<'> It is adifficult time for both of you.

     

    Danaxxx

  19. Posted · Report reply

    This sounds a good news but I am not sure how good it actually is.

     

    I agree with baddad that people sometimes do stupid things when using technology because of not knowing and I would say arogance as well. Although in some cases it might be a very useful tool I fear in some others might be not.

     

    I also agree with Chris 54 that in this bad economic climate some LEA might use this as an excuse to cut funding for statements if the child's scan doesn't show a tipical ASD scan. I AM concern with possible excuse for withdrawal of DLA because we use this money (but not only us, many other families do as well) for my son's private SALT and OT because in the area where we live there are none availlable on NHS! Without DLA we wouldn't be able to finance that.

     

    And what about the idea that many autistic people are/have contributed to the society? I didnt like some terms that were used in the artical such as 'disorder', 'suferers' etc. All autistic people are different, like any other NT people. How could one scan in 15 minutes dx the whole personality? And what about individual needs of each person with ASD? If this tool becomes the only one to dx the child, treatments would probably be designed the same for all ASD 'sufferers'. One size fits all, indeed.

     

    Danaxxx

     

     

  20. Posted · Report reply

    I am really sorry that you and your son have to go through all this. >:D<<'>

     

    Have you thought to use this moment where clearly LEA don't (or don't want to) understand your son's needs to fight for a placement in a special school if that would help your son?

     

    Danaxxx

  21. Posted · Report reply

    Welcome to te forum, James! :thumbs:

     

    This is a nice place, believe me. A lot of friendly people and with a good advice.

     

    Give us a chance, we all have busy lives and not always time to get to our computers (as much as we would like to).

     

    Danaxxx

  25. Posted · Report reply

    Thank you all for your replies. >:D<<'>

     

    I've just come from the meeting with my son's TA. She told me a slightly different story. She said that the child (my son's bully) wanted himself to sit at my son's table but she didn't let my son move to another table because of that because she thought 'he should stand his ground and not move away from that child'. She also said that that boy doesn't bully him any more but that my son is still anxious about it. However, this is not what he is telling me....

     

    Anyway,she said that this is not a permanent thing, it just happened on Friday. I explained to her that it was very distressing for my son being on ASD and that he didn't understand why she wanted him to stay with that boy.

     

    My son asked me what happened at the meeting and when I told him he got angry at me, still not understanding the situation. I told his TA to explain to him herself as well. I will try again at home when he comes back from school but I am not sure he will understand. He thinks I am 'on her side'. Any sugestions?

     

    Danaxxx

     

     

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