What to do next??????

[shaz71]

Hi i am at my witts end i have a lovely daughter that is challenging to say the least well went through my hv who referred me straight to cahms as i have had a feeling for some time that she is on the autistic spectrum well after 3 visits she spoke to school and they have all decided i need to go on a parenting course...... Well i don't mind but she as only been seen by a psychologist who she didn't look at only in glancing which she does regularly, but the psychologist put it down to me and her dad splitting up and anxious so she has wrote her off as ok and will see me in a year if i need to??? The teachers are really annoying me as i have found out off the psychologist today that she is on an iep which no one as told me and i saw the teacher at parent evening a month ago and nothing was mentioned, they all think of the severe autism, where they just sit and not socialise at all, i do appreciate that there are worse cases than Melissa but i do know she is struggling socially as she doesn't know when to stop, will cling to strangers then not talk to people she knows, she will interuppt all the time, she likes routines, doesn't like change, she went mental literally when i changed the furniture around at xmas, tapping, repeating, she is now nearly 7yrs and is very immature for her age, touchy feely, in her own world, lack of concentration, poor memory and these are the words coming from the teacher but yet she is ok "it is my parenting skills"???? HELLO!!!! Sorry that is my sarcasm, the psychologist isn't an autistic specialist, my daughter as also seen a speech therapist again doesn't specialise in autism and again spoke to school and they said she is ok not overy naughty does some attention seeking behaviour and that is it so took their word and said ok since when do schools become autistic specialists, how do i go about getting someone to observe her behaviour in school the teachers aren't with her all the time and can't focus solely on her so what do they know apart from what they do see of her? What about her understanding? Her playground behaviour? Why is she coping in school and letting it all out at home? Why are they saying she is ok and then putting her on iep why would she need one if she is ok so what if she is nearly 7yrs of age and unable to read the questions on the sat papers so can't do it and same for the maths, that is ok she is working at level w which is towards level 1 when she should be at level 2 i know she is one of the younger ones why aren't they listening to me and making me out to be a neurotic mum to everyone else. What really annoyed me is the psychologist she said isn't their anyone to look after the kids for you whilst you rest like family or their dad, i sais "you aren't listening to me no one can cope with them, i don't have a life as i can't go anywhere without them playing up and coming home, can't go to friends houses as i am made to feel unwelcome and i know it is because of the kids, i am on my own as their dad just went to the pub to bury his head in a pint and left me to it, he can't cope with them either, his way is to give them a whack and they will listen but he has tried and tested it and it doesn't work and i told him that but he had to be proven wrong i don't know what else to do, she does have an awful lot of autistic traits, like she does eye contact if she wants to, doesn't like large groups that is when she gets hyper, she attaches herself to unusual objects ie stones, sticks, rubber, shiny things air freshners and carry them around and tantrum like a 2yr old if she can't, she has a lot of sensory issues, repeats herself and me and the tv moreso when stressed, becomes a raptor when stressed by the way her obsession are dinosaurs, yes i know she is a girl but she loves them, jurassic park must have watched it a thousand times and still watches it over and over, loves aeroplanes and planets and always wants to know how things work but yet she isn't good with numbers which i am fairly good with and her dad she is majorly struggling but left to it. I don't know what to do next can anyone help??? Thanks in advance and sorry for rambling. Sharon x

[liamnmrs]

Hi i am at my witts end i have a lovely daughter that is challenging to say the least well went through my hv who referred me straight to cahms as i have had a feeling for some time that she is on the autistic spectrum well after 3 visits she spoke to school and they have all decided i need to go on a parenting course...... Well i don't mind but she as only been seen by a psychologist who she didn't look at only in glancing which she does regularly, but the psychologist put it down to me and her dad splitting up and anxious so she has wrote her off as ok and will see me in a year if i need to??? The teachers are really annoying me as i have found out off the psychologist today that she is on an iep which no one as told me and i saw the teacher at parent evening a month ago and nothing was mentioned, they all think of the severe autism, where they just sit and not socialise at all, i do appreciate that there are worse cases than Melissa but i do know she is struggling socially as she doesn't know when to stop, will cling to strangers then not talk to people she knows, she will interuppt all the time, she likes routines, doesn't like change, she went mental literally when i changed the furniture around at xmas, tapping, repeating, she is now nearly 7yrs and is very immature for her age, touchy feely, in her own world, lack of concentration, poor memory and these are the words coming from the teacher but yet she is ok "it is my parenting skills"???? HELLO!!!! Sorry that is my sarcasm, the psychologist isn't an autistic specialist, my daughter as also seen a speech therapist again doesn't specialise in autism and again spoke to school and they said she is ok not overy naughty does some attention seeking behaviour and that is it so took their word and said ok since when do schools become autistic specialists, how do i go about getting someone to observe her behaviour in school the teachers aren't with her all the time and can't focus solely on her so what do they know apart from what they do see of her? What about her understanding? Her playground behaviour? Why is she coping in school and letting it all out at home? Why are they saying she is ok and then putting her on iep why would she need one if she is ok so what if she is nearly 7yrs of age and unable to read the questions on the sat papers so can't do it and same for the maths, that is ok she is working at level w which is towards level 1 when she should be at level 2 i know she is one of the younger ones why aren't they listening to me and making me out to be a neurotic mum to everyone else. What really annoyed me is the psychologist she said isn't their anyone to look after the kids for you whilst you rest like family or their dad, i sais "you aren't listening to me no one can cope with them, i don't have a life as i can't go anywhere without them playing up and coming home, can't go to friends houses as i am made to feel unwelcome and i know it is because of the kids, i am on my own as their dad just went to the pub to bury his head in a pint and left me to it, he can't cope with them either, his way is to give them a whack and they will listen but he has tried and tested it and it doesn't work and i told him that but he had to be proven wrong i don't know what else to do, she does have an awful lot of autistic traits, like she does eye contact if she wants to, doesn't like large groups that is when she gets hyper, she attaches herself to unusual objects ie stones, sticks, rubber, shiny things air freshners and carry them around and tantrum like a 2yr old if she can't, she has a lot of sensory issues, repeats herself and me and the tv moreso when stressed, becomes a raptor when stressed by the way her obsession are dinosaurs, yes i know she is a girl but she loves them, jurassic park must have watched it a thousand times and still watches it over and over, loves aeroplanes and planets and always wants to know how things work but yet she isn't good with numbers which i am fairly good with and her dad she is majorly struggling but left to it. I don't know what to do next can anyone help??? Thanks in advance and sorry for rambling. Sharon x

 

Hi Sharon, I feel like I have just read a description of my son. He is nearly 7 and only diagnosed in February this year. I am still new to this so will probably not be of much use advice wise but just wanted to share our experience with you, as I think this site has helped me so much in knowing I am not alone. My son had speech therapy since being 3 and no one realised. He has seen an ed pshyc on numerous occassions over the last couple of years but they mostly focused on his lack of ability in the class room. School kept and unfortunately even with diagnosis keep saying "he is fine ". However he is making no academic progress or very little and I am told how he is happy at school yet when I observe him in the playground he is stood on his own or crying. As soon as I pick him up he is like a little time bomb and just explodes. My GP finally refered me to CAMHS two years ago after I finally persuaded him that this was not a reaction to my divorce. After our records being lost we were finally seen by a second consultant there who after our first visit went to the school to observe L. He then called us in and told us there was no doubt L has asd. He also suffers from sensory issues. Over the last couple of years our friends and family has disappeared into the background as L was seen to be a very naughty little boy who I was not controlling. The school also tried to send me on a parenting course for which I think they still regret to this day with the response they got from me !

With the diagnosis I have learnt so much. Visual timetables have been fantastic for us and social stories, these were things I had never heard of before.

I must admit I am not focusing on L's learning to much at the moment as I am still learning to improve his quality of life. so homework takes a back seat. I was also told to complete the nas ABC form ( which is Antecedant - what occurs immediately before an outburst, Behaviour - what happened during the outburst and Consequence of the behaviour what happened after ) This has helped us in looking for triggers and also assists with planning.

Anyway we are still waiting for the school to apply for a statement, as he has been on an IEP for two years with no progress. CAMHS have called a multi agency meeting with the school to try and get things happening more in the way of support. Speech therapy are now visiting him there and assist with the teachers and the LEA have sent someone in to educate them on ASD's.

As for friends and family not understanding well to be quite honest - its their loss. I will make no excuses for my son, he is as he is and its us that have to learn his ways. Easier said than done especially for his younger sibling. However thats how things are. I now marvel at little acheivements and yes we may make two steps forward and another three back on some days but hey ho its a case of trial and error.

Sorry I cant be of more use but I hope things start to move in the right direction for you. I am sure you will get loads of info and advice from here. I have found it a sanity saver !

Best wishes and take care x

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[shaz71]

Hi Sharon, I feel like I have just read a description of my son. He is nearly 7 and only diagnosed in February this year. I am still new to this so will probably not be of much use advice wise but just wanted to share our experience with you, as I think this site has helped me so much in knowing I am not alone. My son had speech therapy since being 3 and no one realised. He has seen an ed pshyc on numerous occassions over the last couple of years but they mostly focused on his lack of ability in the class room. School kept and unfortunately even with diagnosis keep saying "he is fine ". However he is making no academic progress or very little and I am told how he is happy at school yet when I observe him in the playground he is stood on his own or crying. As soon as I pick him up he is like a little time bomb and just explodes. My GP finally refered me to CAMHS two years ago after I finally persuaded him that this was not a reaction to my divorce. After our records being lost we were finally seen by a second consultant there who after our first visit went to the school to observe L. He then called us in and told us there was no doubt L has asd. He also suffers from sensory issues. Over the last couple of years our friends and family has disappeared into the background as L was seen to be a very naughty little boy who I was not controlling. The school also tried to send me on a parenting course for which I think they still regret to this day with the response they got from me !

With the diagnosis I have learnt so much. Visual timetables have been fantastic for us and social stories, these were things I had never heard of before.

I must admit I am not focusing on L's learning to much at the moment as I am still learning to improve his quality of life. so homework takes a back seat. I was also told to complete the nas ABC form ( which is Antecedant - what occurs immediately before an outburst, Behaviour - what happened during the outburst and Consequence of the behaviour what happened after ) This has helped us in looking for triggers and also assists with planning.

Anyway we are still waiting for the school to apply for a statement, as he has been on an IEP for two years with no progress. CAMHS have called a multi agency meeting with the school to try and get things happening more in the way of support. Speech therapy are now visiting him there and assist with the teachers and the LEA have sent someone in to educate them on ASD's.

As for friends and family not understanding well to be quite honest - its their loss. I will make no excuses for my son, he is as he is and its us that have to learn his ways. Easier said than done especially for his younger sibling. However thats how things are. I now marvel at little acheivements and yes we may make two steps forward and another three back on some days but hey ho its a case of trial and error.

Sorry I cant be of more use but I hope things start to move in the right direction for you. I am sure you will get loads of info and advice from here. I have found it a sanity saver !

Best wishes and take care x

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Thanks for replying, how did you get someone to go into school to observe him as all these people have done have taken the teachers word but yet what is winding me up is all the things the teacher as told them are typical behaviours of someone with asd like the touchy feely, immaturity, in her own world attention seeking behaviours and so on, why can't anyone observe her and then tell me they think everything is ok then i would be happy even though i know she isn't after it may be that she has a lot of traits but not enough to get diagnosis but yet she may be dyslexic which causes the behaviour after school and her hyperness i don't know but you would have thought the school would be helping me and my daughter not fighting me and making me out to be a neurotic mum and then not keeping me informed. Thanks again Sharon x

 

[liamnmrs]

Hi Sharon,

I am still battling with the school even now. Before when I was getting no where at all I must admit I probably could have handled the situation differently. I demanded that I be refered to a different person at CAMHS via my GP. I made a diary of events and videos on my phone of various things that he would do. I took them all with me to the appointment and explained how the school had treated us. It was then that CAMHS went in. As he is struggling with work in school we had already been at school action plus for a while so as no progress was being made I complained and complained till the ed pshyc was brought in. I also used Parent Partnership to help me liase with the school as they could convey my concerns in a "less emotional way".

If I had not trusted my instincts and fought for what I felt he needed we would still be no further now. The second person I saw at CAMHS had no doubt and sympathised with how we had been pushed from pillar to post. I know as parents we are not experts but we know our children and it is so frustrating when we are not listened to.

take care x

[skye]

Hi Sharon,

 

I brought my daughter to the attention of the child psychologists at a very early age(18-20 months). They sent me to 3 parenting classes before finally taking notice of her Aspergers, which took about 3 years in total of me seeking help for my child for them to take notice seriously. The last woman I worked with said that they (the professionals involved) have to make sure that it is not just behavioural. Some of the things from the classes did help, however a lot of things did not. Like time out for instance, forget it. She would just lay on the step indefinately and really didn't mind going in there at all. It certainly had no affect on her behaviour.

During the final classes where I was directly involved with a family support worker she told me that it was standard procedure to send parents like me to parenting courses to try and alleviate any other possiblity. They were also very weiry of putting a "label" on my daughter. Unfortunately I think like a lot of parents on this site, you just have to fight. If you are getting no joy from one authority then try another. The Educational Psychologists should be the ones to come in school and observe. I would contact them directly. Also I would contact the Parent Partnership. They will attend meetings with you and make "the other side" hold up to their end of the bargain where IEP's etc are concerned. Good Luck!