Daughter 10 under diagnosis - ADVICE WANTED

[rustysaddle]

Hi I'm new to this forum and have been struggling with my daughter now since day 1. She has Dyspraxia and I think she has Aspergers, after extensive hours of research on the net. She is really struggling with mainstream school and the teachers do not help her and will not until diagnosis. We've gone through loads of red herrings with geneticists etc. She has a duplex kidney which was the main reason for that.

 

I have the appointment I've been waiting for coming up next week for Jasmine to see the consultant after the school and I have filled in all the forms. Any advice for how to prepare for this appointment and information on what happens next would be most welcome.

 

I have written extensive details about Jasmine which I have given to professionals, I don't think they have had the time to read them. I'm seriously thinking of taking her out of this school. Martian in the playground, read the book and it's so Jasmine.

 

I so want to get it right for her....

[lindy2017]

Hi I'm new to this forum and have been struggling with my daughter now since day 1. She has Dyspraxia and I think she has Aspergers, after extensive hours of research on the net. She is really struggling with mainstream school and the teachers do not help her and will not until diagnosis. We've gone through loads of red herrings with geneticists etc. She has a duplex kidney which was the main reason for that.

 

I have the appointment I've been waiting for coming up next week for Jasmine to see the consultant after the school and I have filled in all the forms. Any advice for how to prepare for this appointment and information on what happens next would be most welcome.

 

I have written extensive details about Jasmine which I have given to professionals, I don't think they have had the time to read them. I'm seriously thinking of taking her out of this school. Martian in the playground, read the book and it's so Jasmine.

 

I so want to get it right for her....

Hi. I have an 11 year ols son who at the moment is waiting for letter from CAMHS.....i had to take him out of school mid april [welsh mdium school]as he was getting very anxious and distressed i think he ahs asperegrs his 3 older brothers and sister have traits of it not dx didnt know then what it was that was wrong or different all coming to light now it does take time......................good luck speak later lindy

[rustysaddle]

Hi, yes it does seem to fit, if Jasmine is diagnosed I am going to do everything I can to get her out of that school. Even on the long walk home Jasmine gets teased right infront of me. Girls will say hello to her and Jasmine now thinks everyone is taking the micky out of her. She was determined that her and her bully had made friends, not the case, I told her to say hello to her so I could gauge the response and let her know. She said hello and P body language and response was not friendly. Have tried to speak to her teacher for 2 days now, to no joy, will be seeing the head soon if this keeps up. Apparently P is dragging her to the toilets, she's a real nightmare this girl.

[Sally44]

A child does not have to have a diagnosis before they receive help or support - although it helps to have one.

Get yourself a copy of the SEN Code of Practice (you can download it from this site). This explains the process that you, school and the LEA go through with any child that has a SEN.

It explains what an SEN is. It doesn't just mean difficulties with academic stuff. For a child with dyspraxia/AS it might mean problems with language and social communication, sensory issues, struggling with handwriting, needs a social skills group etc.

When a child is falling behind their peers the first stage is School Action and that is a stage of extra help that school alone provides. If that does not work, then school move the child to School Action Plus, which is where school also seeks advice from the Educational Psychologist, Speech and Language Therapist. They will observe and assess your child and give advice to school. At this stage the child will also start having Individual Education Plans (IEPs), which list about 3 targets that the child is working on in school. If this stage does not work then the next one is asking for an assessment towards a Statement.

All schools have delegated funding to meet the needs of children on School Action and School Action Plus. So your child's school already receives the money needed to meet your child's needs at those levels of support.

 

As you suspect Aspergers, have you contacted your LEAs Autism Outreach Teacher? They go into mainstream schools and give them advice. They don't necessarily need a diagnosis before they go into any school. But they do need the school to invite them. So it might be worth asking the AOT if she could come to observe your daughter in school and if she says she can, then ask the school if they could invite her in.

 

Schools are often reluctant to call in the EP or SALT at early stages of SEN (unless there are obvious severe problems), because they have a termly budget for these professionals eg. 4 hours EP time per term. Which is not alot of time considering a school may have hundreds of pupils.

[Karen A]

http://www.autism.org.uk/about-autism/all-...-to-expect.aspx

Hi.I thought this might be useful.The next page might be helpful too.

These pages explain what you can expect at the appointment.

The NAS have revamped the web site since I last looked and the page I use has gone but I hope this is as useful if not more so.

Please do make sure that the consultant is the professional in your area with responsibility for ASD assessment or is part of a team with this role.If you find that they do not have this role then it may well be worth asking for a referal to the multi-disciplinary team with responsibility for ASD assessment and diagnosis.

Ben my son is 12.He was diagnosed with AS just over a year ago however he also has dyspraxia and this is not unusual.

Karen.

[trekster]

Welcome and good luck for getting a diagnosis and support for your daughter.

[rustysaddle]

Welcome and good luck for getting a diagnosis and support for your daughter.

Thank you, saw the CP and we were there ages. I brought will be all the paper work I had had from all the different agencies and I also wrote a bullet point list of Jasmines unusual behaviours and medication history from birth. The lady was great and read ALL the information I had brought along, I felt like crying, someone was starting to believe me. She spent ages talking to us and said she is going to get a specialist SALT to see Jasmine, one that looks at it all from an ASD perpective. Then we should get a DX of some sort in 4 months. I found it such a relief and so glad I did those bullet points, it's so hard to explain every little thing when your on the spot. x s

[cmuir]

Hiya

 

Firstly, the school have a duty of care and responsibility to meet your daughter's needs with or without a diagnosis. There's no doubt a diagnosis can help, but it's not acceptable that they're using the absence of a diagnosis as a delaying tactic. Do they acknowledge that your daughter has some difficulties? Just wondering if you can use them in any way when seeing a specialist ie can they provide a report outlining her difficulties. I think you're absolutely right that specialists generally don't have time to read reports on the day of the appointing. I used to provide bullet pointed summarised notes and also kept diaries (I'd photocopy the most relevant parts and highlight the specific areas of interest that should be read). It's best to photocopy these notes and send them in advance of appointments, in the hope that they'll make time to read them (all background reports can really help build up a picture). I used to phone the specialist and agree that this was what I was doing, and also it ensures that they expect/look out for them in advance of the appointment (leaving no scope to say 'didn't have time to read', 'only got them today', etc, etc). The whole process is such a rollercoaster and having to deal with that and the school can be incredibly draining. If you can, it's worth trying to do as much homework as you can - in my son's case, a lot of time was wasted being passed from pillar to post by professionals. It was by sheer chance, on this very forum, that I 'met' someone from my locality. Some 4 years on, we're good friends and she's been really helpful. I was given the name of a fantastic consultant and after much pestering her PA, was able to get an appointment for my son. Three weeks later, we had a diagnosis of AS. Couldn't believe it! It may also be worth looking using NAS's directory:

 

http://www.autism.org.uk/directory/search-results/pg=1.aspx

 

and checking out specialists in your area. The whole process can involve a lot of specialists ie SALT, OT, etc and I was appreciative of the reasons why it could take a long time. However, the problem was that there was no joined-up thinking. No one seemed to be able or want to take responsibility of saying one way or another what we were dealing with, until I was given the name of a great consultant. Persevere and hopefully you'll be able to establish one way or another.

 

Regards

 

Caroline.

[jet28]

I'm so pleased that it sounds like you are on the right track now with the professionals.

From my own experience, it did seem like a bit of an uphill struggle when my son was going through his diagnosis. (diagnosed at 7yrs, he's now 10)

However, the school was supportive and the CAMHS team were excellent.

You have to fight for your kids and not give up no matter how desperate it gets. The help is out there, and once you tap into it, its a great feeling of relief.

Our determination for our son Max has in some ways I believe, helped the primary school identify traits for others coming into the school. We had sessions with the SALT team, school action plus courses and even managed to get our SEN to go along also.

I appreciate that not all schools are as supportive as ours has been, but it is still mainstream and we still keep on their backs when we feel they are slipping a little.

Good luck with the diagnosis.

Joyce