Newly daignosed-advice needed please?

[sarah2003]

Hi,

 

I am new to this site and just wanted to introduce myself-I am mum to an 8yr old dd who was just last week diagnosed with Aspergers.

She also has ADHD and DCD (Dyslexia/dyspraxia & sensory issues).

She is in Yr 3 at school and on SA+.

At present she is crying almost every night-as she feels sad that she has no friends.

Who do I need to get involved in talking to school about her issues-as they don't seem to want to see she presents with any problems-I am at present also about to start a request for statementing as I just don't feel as if school are doing enough-and she is really battling all round.

She has no confidence at all.

 

Hope someone can point me in the right direction.

 

Thanks

S

 

[joybed]

Hi Sarah I have 2 children with ASD who both behave very differently. Marcus at 13 has never had nor wants to have any friends. He sees any social contact as a means to getting his needs met, he tells you he loves you but only because he has learnt that is a nice thing to do but i doubt he knows what it means. Piers on the other hand was diagnosed last week with HFA probably aspergers, he really wants to have friends but goes about it in all the wrong way, he is either too rough and forces himself upon others or he behaves very passively and pretends to be a baby. both of these tactics get him into trouble and the boys in school are at times horrible to him. His twin sister helps him out a lot but he still gets it wrong all the time. at times he becomes very upset, at other times he doesn,t care and insists he is going home with a child irrespective of whether he is invited or welcome. At times this works but it is embarrassing for me (last week he managed to get himself invited to a house by someone who never mixes outside her own culture (clever boy doubt anyone else would have got away with that).

We also have just started the statementing process and I can,t believe how long these things take, when my oldest boy was diagnosed he was just handed a statement.

I think initially you need to speak to the class teacher as she/he are the one dealing with your daughter all the time, I would also ask for an appointment with the school SENCO. Offer easy to read literature regarding aspergers aimed at schools, the national autistic society do a range and some are available on line on the NAS site for you to print off. Remember it is early days following diagnosis and you are probably still in shock even if it was an expected diagnosis), although if you are anything like me you are probably frantically trying to get things in place quickly. Good luck

[Sally44]

Your daughter has a diagnosis of an ASD, that means that they have to have significant difficulties with social interaction and play to get a diagnosis. Therefore that is a 'need', and school should be identifying and meeting all her needs.

I would write to the school SENCO saying that your daughter is getting very upset about not being able to make friends and would they refer her to the Speech and Language Therapist. I presume that she was seen by a SALT prior to diagnosis. Are they putting together any programme at all? I would also find out contact details for the SALT in your school and speak with that department and send them in a letter. There are lots of things they can do, but it tends not to happen unless you keep pushing for it. For example my son, who has a diagnosis of HF autism was seen by various SALTs for 3 years and their report was a standard form which had a section headed "Behaviour and Social Skills" under which it always said "On this occasion we have not had the opportunity to assess XXX". Eventually I asked them what that meant and they said any behaviour that is affecting their ability to access the curriculum and any difficulties with social skills. I think my face turned red and steam came out my ears. So I wrote a letter of complaint to the SALT Department and said that as he had a diagnosis which meant he had to have difficulties in this very area, I found it incredible that no-one had had the opportunity to assess him in 3 years. I also asked for a SALT with experience of ASDs. At the same time I began the Statementing process and in the end it all came together, eventhough we did go to tribunal.

Anyway he now gets 6 hours per term direct SALT from a suitably qualified therapist who puts together a programme that is practised daily in school by his nominated TA. He goes to a Social Skills Group. The SALT has worked on all kinds of social skills and we have seen a big improvement in his ability and desire to interact and those attempts have been successful.

So I would write in asking for a full assessment of their social skills. Also google an ongoing assessment and monitoring tool called SCERTS. We are going to be using this with my son and it sounds very good as it quickly identifies skills that the child has and those that are poor or missing.

Regarding a Statement, you need at least 6 months worth of IEPs/MEPs before you can make a request. As this is a fairly new diagnosis I would also recommend you to contact the National Autistic Society and your local Parent Partnership to find out what Special Educational Needs seminars they are running in the near future. The NAS also run HELP programmes for the parents of newly diagnosed children.

If you go to your local councils website and type in "assessment criteria" in the search option you should find your local authorities assessment criteria for the SEN process. That is useful to know because you might ask for an Assessment for a Statement only to be told that the school has not done X, Y and Z yet.

Also get a copy of the Code of Practice for the Statementing process. Your local PP should tell you how to get a free copy.

 

[sarah2003]

Hi there,

Wow-thanks so much for that long reply-all very useful.

My dd has been seen by alot of professionals but never by SALT?? Should we be asking for this-at present she is under a Paed for her ADHD and she was recently seen by Clin Psyc for a lengthly assessment. We are also under OT for her DCD.

What would the SALT be doing for her?

We also see a family therapist monthly who does sessions with her.

 

Thanks

x

[sarah2003]

Hi Sarah I have 2 children with ASD who both behave very differently. Marcus at 13 has never had nor wants to have any friends. He sees any social contact as a means to getting his needs met, he tells you he loves you but only because he has learnt that is a nice thing to do but i doubt he knows what it means. Piers on the other hand was diagnosed last week with HFA probably aspergers, he really wants to have friends but goes about it in all the wrong way, he is either too rough and forces himself upon others or he behaves very passively and pretends to be a baby. both of these tactics get him into trouble and the boys in school are at times horrible to him. His twin sister helps him out a lot but he still gets it wrong all the time. at times he becomes very upset, at other times he doesn,t care and insists he is going home with a child irrespective of whether he is invited or welcome. At times this works but it is embarrassing for me (last week he managed to get himself invited to a house by someone who never mixes outside her own culture (clever boy doubt anyone else would have got away with that).

We also have just started the statementing process and I can,t believe how long these things take, when my oldest boy was diagnosed he was just handed a statement.

I think initially you need to speak to the class teacher as she/he are the one dealing with your daughter all the time, I would also ask for an appointment with the school SENCO. Offer easy to read literature regarding aspergers aimed at schools, the national autistic society do a range and some are available on line on the NAS site for you to print off. Remember it is early days following diagnosis and you are probably still in shock even if it was an expected diagnosis), although if you are anything like me you are probably frantically trying to get things in place quickly. Good luck

 

Hi there,

Thanks so much for your reply-yes my dd does want friends but just doesn't seem to have the social skills to be able to do this-I do feel for her as in her class of 30 there are only 9 other girls-alot of them very mature for their age-whereas dd is very young for her age-I have spent several meetings at school discussing this and they just don't seem to do anything-the last time the SENCO said to me "Well if she likes reading on her own at lunchtime then we just leave her to it"-she does this as she has no friends to play with!!!!!!!!!

You say you are beginning the statementing process-are you doing this yourself or have the school started it?

I am seriously considering requesting one for dd-as school don't seem to think she is bad enough to get one-they don't have any of the dreadful behaviour we get at home-which is really hard work and I often think alot of it is down to school as during the hols and weekends she seems a lot happier!!!!

 

Thanks,

S

 

[Guest featherways]

Does she have a hobby or special interest where she can make friends by doing a shared task with people? Often we find it much much easier than general social conversation or general play. How about a book debating club, if she's a good reader? The school might be able to help with this. You might also find that she makes friends more easily with older girls or even the adults, so perhaps don't think it has to be people in her own class. Older children sometimes have more ability to include those who are less skilled socially.

 

The school do need to take this more seriously.

[joybed]

Hi Sarah my older boy was given 18 hours support even before diagnosis as school were really struggling to cope with his behaviour, he was shouting out in class, wandering all over the place and had no concentration at all, he also wasn,t toilet trained and regularly soiled himself at school so he needed support urgently, his statement came quickly and he has always had a high level of support currently on 25 hours he is 13.

As soon as we had a concrete diagnosis for Piers i telephoned schoool and told them the head said it would probably hapen much quicker if i requested statutory assessment myself, i telephoned the SEN office and they said to write them a letter stating diagnosis, DOD, school etc and then they would set the ball rolling. I sent letter Friday, Mon had a call from parent partnership and by wednesday had leters to sign to start the procedure. They now have 6 weeks to get reports etc and decide if they are going ahead with assessment. I have been told it is harder to get a statment these days as ASD is far more prevalent and funding harder to come by. However as a mother i just want the best for my boys and indeed girl. Piers is much more passive than his brother at school but is much more innatentive and impulsive, also Marcus was never behind educationally but Piers is really struggling to learn, maybe this is because M got a statement so soon or maybe it is Piers ? ADHD that is causing this i suppose time will tell.

Their behaviour is far worse at home than at school, i have been told this is because they feel secure with me and know they can be themselves, thats all well and good but it is hard constantly dealing with their behaviours and it really effects Lydia as much as the rest of us. Also the 2 boys are so simialar that it creates an explosive combination with neither knowing when to quit so both of them lose it and someone gets hurt, usually Marcus, Piers may be small but he is strong.

You have nothing to lose by requesting an assessment my oldest has really struggled at school this past 2 years I don,t know where we would be without a statement as it is hard enough with one.

I have found that unfortunately you do have to fight a lot for their rights and we have had it relatively easy until the past 2 years and it is hard to get understanding even from loved ones at times. If we don,t fight for them who will. Hope it all goes smoothly.

[Sally44]

A Speech and Language Therapist does not work only on language. There is a tendancy to treat those with a diagnosis as "not having difficulties" because part of the criteria states that they have to have typical language development up until age 3. My own son has high functioning autism, and the SALT, although she saw him for other speech problems) did not assess his social interaction and play skills for 3 years until I cottoned on to that fact and wrote in and complained about it.

There is absolutely loads of things they can do. But they have to assess and observe and sometimes, unless you write them a letter and specifically ask them why they have ignored this aspect of her diagnosis, then nothing will happen.

My son also wanted to make friends. When I moved him to a mixed mainstream and SEN school with a specialism in ASD he immediately said that he wanted to make friends and play with the children in his class. The problem was he had no idea how to do that. Through further assessments, observations and discussions we focused on a number of key skills that he did not have. These are some of the things school did which was instigated by the SALT.

Before playtime he had to choose what game he wanted to play and with whom. This helped prepared him for playtime.

He had to learn the names of the children in the class. Previously he never learnt names and could not get a child's attention because he could not call them by name.

He was allowed to take a toy into school each day to encourage him to interact and have a subject to talk about.

He went to a Social Skills club and they worked on socia skills such as initiating conversation, asking questions, listening and answering, how to be a good friend.

He had targets in his MEP such as being sent to ask questions of various members of staff. Eg. the teacher would say to him "go and ask the lady in the office what is her favourite TV programme". And he could have to come back and report it.

Learning to observe other people and what they were saying and doing - to help him remain 'in the game'.

There is a good on going assessment tool called SCERTS. Google that. If it sounds useful why not speak with the SALT department and bring this up as a tool you would like to try with your daughter as she wants to interact (and that is a brilliant thing that needs to be worked on. If she is successful she will be motivated to interact more. If she is unsuccessful she will retreat further into herself and stop attempting to join in and play).

This is an area that she cannot work out and learn herself. She needs professional input and this should be provided. But I think that unless you ask for it it won't happen. And these letters and the response you get from either school or the SALT department is going to be useful in any request you make for an assessment towards a Statement.