Soda

Thought Lynda gave brilliant advice. Not sure I can add anything at all other than to say when I saw my DD's paed. Last week I asked her about her role and the role of the CASBAT team. I felt like I didn't know who to ask if I did have a question or a problem. She reassured me that If I had any worries about day to day health ( my dd didn't sleep much over Xmas as was poorly. And that with the combination of a first wobbly tooth meant she didn't eat for over a week. Literally, so worried as lost so much weight) Paed reassured me this was exactly the sort of thing I should seek advice about and that it was fine to telephone and leave a message. Sometimes when you are really stressed and struggling to cope its difficult to know who and what you can ask to help. I would ring paed, ask for phone all and they will decide on basis of that if they need to see you sooner than your next appointment. Hugs from me

That's brilliant that you feel you have been listened to. Result! Well done you!

Welcome and lucky you living in such a beautiful part of the world! We have spent some happy holidays in Padstow!

Hi Kath, My daughter is virtually same age and last year her behaviour in school was very much like your sons. She would completely zone out in carpet time, couldn't sit still on carpet, constantly had to be holding something in her hand, a toy prefably but she would pick up objects at break time like a stone or a leaf and hold them until she went to bed. She really struggled processing instructions and communicating because of her language delay. We have just been diagnosed with autism and actually year 1 is better. Think the more structured approach to the day, rather than the free flow approach in reception suits her much better. She has group and one to one SALT at school. Other things that seem to have helped include she has a visual timetable, sometimes a visual task board . For a while a special sensory cushion thing helped her sit still longer. Although the process is not a quick one it sounds like school are being helpful. Because my daughter is doing quite well at school action plus even though we have had a diagnosis nothing has changed for her on a day to day basis and we haven't been offered any more support. I guess it means though that we have quicker access to services in the future if she needs one....? All this is new to me too! Soda

Ash, How did it go? Better outcome today? Does your LO go to nursery or play group? Can anyone else echo your concerns? Soda

Gosh that doesn't sound like milking it to me! Ignore them!

Poor mite. School must be so hard for him and for you at the moment. Echo what Sally said. The SENCO should be the starting point. maybe you need to get a little bit assertive. I don't mean stroppy or unpleasant but be honest and tell her that something has to change because of the impact it's having oh him. If she feels powerless to get him assessed more quickly them who can you speak to that can sort this? Tell her you need an action plan and don't come out of the meeting without something agreed. I have found that people respond quickly if you put pen to paper. If she can't help you then who can? Good luck,it's hard

Love it! Brilliant idea Merry. As a newbie it would be really lovely to learn a little bit about you everyone why they are a part of the forum. I have only really recently joined and am trying to get a bit braver about posting. I have been made to feel welcome, so thank you everyone I guess I joined to get advice and experience. Have been feeling quite alone and struggling a bit with my DD's diagnosis. Want to learn more, feel less worried and make some friends. I never seem to have enough time though so you will notice my posts are never very long!

Don't know if there are any near me. How do you find out? The diagnosis of my daughter has made me have bit of a wobble and no-one has given me information like that. Hence I found this forum...

Welcome

My daughter is sociable, I inappropriately so even with strangers. Desperate to have friends and be friends, in fact anyone who shows interest is straight away her best friend. She struggles with the normal day to day relationships with peers though and if told to go away at playtime she will. We are sometimes v sad because others have sent her away so am trying to teach her what to do when it happens. That will be a ongoing struggle I think....:;

No just the William's syndrome. And that was about 2 years ago. We have only just had the ASD diagnosis. So it's a long road. Like you have only just found the forum but am already really grateful for some super advice from people on here

Don't have experience of this myself, in fact my situation was sort of the opposite with lots of people thinking my daughter hd a problem and me not thinking she did. Actually that's just as hard. But it's hard because you start to doubt yourself and your instincts as a mummy. So no advice really... Just it's hard and hugs! Soda

My daughter was tested for Williams syndrome before they diagnosed autism 2 years later. The blood tests were very specialised and took about 8weeks and were thankfully negative. We have just been diagnosed as a result of CASBAT assessment. That took about 9 months from start to finish. I was expecting longer . Good that things are moving forward for you. Soda

Having only recently been told about my daughter's diagnosis I am trying really hard not to do anything different at all other than be more patient! Was told the reason she is doing so well is because of what I do. But I am very strict, I think. Soda

Oh my goodness yes! Can totally relate. Why is my house never tidy?! I find myself constantly trying to find different and better ways to organise things. I have just struggled around a million soft toys to change DD's bed so a 10 minute job took over double the time. And they all have to be put back just as they were or there will be tears! I declutter by chucking stuff in the cellar and now the cellar is almost full so will have to tackle that soon! Soda

Thank you Lyndalou for recommending the Eileen Riley Hall book, Parenting Girls on the Autism Spectrum. Have only read a bit but its good, reassuring and positive. Wanted to recommend to others. We are struggling with back to school transitions in our house.... Anyone else? Soda

Thank you all so much and /Lynda I will look that title up !

Thanks Lynda, Have been giving myself a hard time for things like trying to stop her from doing these things eg. she mkaes a lot of little noises and finds it hard to sit still.Been working on the thoery that she needs to learn to try and be seen to be as normal as possible. Now we have the dignosis am frightened I have been doing everthing wrong She is academically doing well but like your son has some sensory issues and has problems processing information and instructions. Socially she has a few friends, but I am worried they see her as a little bit different and try to'baby' her. She is sort of on the periphery though we have had several occasions when she has come home upset because no-one would play with her. If she gets told to go away she will and that as a mum is just heartbreaking..."Mummy I spent all 3 plays on my own". I am trying to teach her what to say/ do but its here she struggles. Thank you for sharing...I also have another DD same to yours and she is often my challenging one in terms of behaviour eg tantrums/defiance. No signs of ASD but I am now worrying there is something wrong with her too. Because I missed it in oldes DD now really doubt myself and mummy judgment. Actually thats the hardest part of it all. Hopefully I can learn from people here. Soda

Lynda, Thank you so much. I am hoping that I will get my head around this quickly and feel as positive in my heart as my head tells me to be. DD is doing so well in mainstream and does not have significant difficulties at school. Though I think if school did a bit more she would be less anxious at home and we would see less of the behaviours that some might seem as less typical. I'm glad I have found this forum because its in listening and sharing with others who have the same worries and concerns that I might have slightly less sleepless nights myself. Thank you for replying x

Hi everyone, Posted a few days ago in meet and greet and had a few replies, thank you so much. Would still really like to hear from anyone else whose child has had an asd diagnosis. I really thought DD would not get a diagnosis. Will it help her in the long term? And why am I struggling to accept it? Thanks in advance Soda

Thanks everyone. Yes school really supportive and DD doing well on school action plus with support for speech and language and listening/social skills. Met lady from CASBAT today and feel so overwhelmed. Feel awful for not realising sooner and for all the things I have told her off about that she just can't help. Would really value hearing how it made others feel and how you coped. Thanks Soda

Hi everyone, New here and a bit reeling after DD (5) has just had diagnosis of ASD. Whilst it isn't a shock I am still absolutely gutted. I might even disagree a bit? I agreed to the CASBAT assessment but I honestly thought they would say that whilst my daughter had traits she wasn't ASD, which is the diagnosis. So I guess my question is did you agree with the diagnosis? And how did you feel? Is a label a positive thing because of the access to services? I feel like my judgment as a mum is in question now... I am meeting the lady that did the CASBAT assessment tomorrow so maybe she will be able to answer my questions. I thought it was really hard to get a diagnosis? This seems to have come too easily for us... I don't know. Maybe in denial a bit... If there is anyone who has gone through this process I would be grateful of advice/feedback. Many thanks, Soda