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Juls77x

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Hi everyone,

 

I am a single mum with a son who has high functioning Aspergers, he struggles with anxiety and feeling sick and misses quite a lot of school in times of stress, up coming exams mean it is getting worse again. The school, I do not feel, give him enough support, he has very poor organisational skills and is also dyslexic School also like trying to turn his absences into being just an 'attendance issue' which I know it is not (and NAS have advised the management at his school are not understanding with children with ASD's, despite half their support base being dedicated to children with ASD... how do they get away with not being understanding then!). He has never been in trouble at school, always polite to teachers and actually wants to be in school, the days he feels well enough he happily goes in and comes home happy too... but again, no one will listen to me. His late diagnosis (age 14) has really not helped I don't think and I wish I could have done more.

 

I am really hoping for some understanding and support here, it is just the two of us, his Dad rarely keeps in touch and I don't have family and can find no appropriate support groups in Aberdeen (if I am wrong on this please tell me!). I am feeling really alone and feel like a bit of a failure just now, some reassurance I am not just a useless mother and that other people are going through similar problems to me would be helpful... today has been a rough day.

 

Thanks for reading.

 

Jules

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Hello Jules!

 

I thank you kindly for posting your topic. I'm approaching 29 and was diagnosed with Asperger's Syndrome (AS) at 7.

 

I'm very sorry to hear about the problems you're currently facing. First of all, I'd like to reassure you that you certainly are NOT an irresponsible or useless mother. 10 to 1 your son's behavioural patterns are perfectly natural. AS is a condition that basically means a completely different development of the mind. It's something one is born with and something they die with, regardless of nurture or human influence. It's highly unlikely to be down to your parenting or how your son's been brought up. The natural causes of AS may never be detected or identified, but you've very little (if anything) on your part to be ashamed of. In fact, from the information you've shared with us, I'm very proud of you. I thought you might like to know that I met a single mother of a boy on the mild end of the autistic spectrum last weekend. Apparently, his dad couldn't go through with his upbring, because of the challenges he saw from the boy's autism, and so moved over to America to start a new life. The boy and his mum were both very interesting people and they seemed happy with their lives and mother-and-son relationship, nonetheless. I do believe that your son has better opportunities for personal and social development than I had as a child and youth. One idea of mine is that you could produce a story about your son based on your years of experience with him, with positive and justified conclusions, and share it with his school. They'll then be more likely to go further for him. In addition, you could write to your local education authority (LEA), advising them of the issues you've raised in your topic, and I'm sure they'll be interested and start making allowances in such accordance. You could even write to your MP if you consider the issue critical.

 

My AS was very difficult for my parents and older sister to come to terms with. I used to make life in my household very tumultuous. The tragedy for us was (and possibly still is) that AS was almost unheard of when I was first diagnosed. We had to make difficult choices for my education and personal/social development and faced numerous distressing issues we never anticipated. My personal and social development has been a very long and painful process! Even today, I still have a lot to overcome, which will require a series of further difficult choices. I shall keep trying to move forward nonetheless, in which case I'm far more likely to get somewhere and make fundamental progress. It's because of these difficult and unfortunate experiences that I can fully understand where you're coming from. I shall keep my fingers crossed that you manage to seek quality attention and support for you and your son's current problems.

 

You can contact me about whatever you like, whenever you like.

 

Best wishes,

Gareth.

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You aren't a failure or a useless mum - the fact you are on here asking for support proves that, you just need help and support and so does he. I'm not in the same position, so I don't know what more you can do but maybe go back to the NAS and see what they suggest. WIth autism you, and your son, have to keep positive and try all possible options. My partner has challenging teenagers (possibly autistic) who refuse to see doctors/dentists/etc. so its hard for her to get any help, and they are struggling with being an adult (one has dropped out of college, the other too anxious to do anything), but life goes on and you find a way to get through. You've come to the right place, plenty of support here - even if its just moral support.

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Hi Juls77x

 

Hi and welcome to the forum. I live in the Aberdeen area but my son is quite a lot younger than yours so he doesn't attend support groups within the age range you need. However, there are a few groups in the area which might be suitable that you and/or your son could access.

 

Last year, there was a lot of focus on asking parents of children and teenagers with ASD and also adults with ASD what they wanted regards to services and support in the area. They are looking to create a One Stop Shop for people to go to to get information and advice but I don't know how far this has got in getting set up. However, if you've never had contact as yet with NAS Aberdeen branch it might be worthwhile contacting them to be put on the mailing list for monthly updates about what is happening in the area - Margaret.Clark@nas.org.uk

 

I'm happy for you to pm me if you'd like.

 

Lynda :)

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Hi welcome to the forum. I'm sorry to hear how you are feeling. I'm sure by joining this forum you will make friends and get some great advice, we are a very friendly bunch on here. :-)

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Thank you all for your kind words.

 

Sorry, today was just a really bad day. I just can't people to listen, from trying to get help with my son from the age of 7 and being constantly ignored by his primary school, to asking his school now for appropriate support, communication, understanding and information on his progress in general and progress in catching up with work missed while absent. Apparently these seem like unrealistic expectations (??) No matter how I try, I get fobbed off, or what is agreed by the school just doesn't happen. My son has very poor organisational skills and short term memory problems, he often gets confused when being given tasks (I have to be very clear when giving him instructions) sadly his teachers don't seem to be able to grasp this concept.

 

This morning I received a letter from school this morning saying:

 

" Your son has very important coursework now seriously overdue. We are writing to inform you that the consequences of not submitting these items is extremely serious and could result on the failing of the course. This is a very serious situation. Therefore, we are asking for your support in ensuring that this situation is rectified immediately to give your child the...."

 

Oh and according to the letter this work is to be handed in when? (re-reads letter) oh yes, today.

 

So, despite asking for my son's progress and requesting work home from his Guidance Teacher, Support Base Teacher, Deputy Head, Home Liaison and anyone else who was willing to listen, on several occasions in various meetings regarding attendance, or by phone and by email, for over a year now, oh and also the Educational Psychologist once, as I only met her for the first time last month (my son's diagnosis was Nov 2011), they now want me help, exactly what I have been trying to do for years. Oh and the information I got back about his progress was "he is doing fine", repeatedly. It kind of beggars belief what I read this morning.

 

Calling Educational Psychologist tomorrow on my break at work, surely they can't just fob this off (although nothing would surprise me!)

 

So, not a raving loony, just a very upset mum today. I will post on other threads for advice on more specific things, I suppose I just needed to be heard today, sorry if it was inappropriate in the Welcome Forum :offtopic: lol

 

Thank you for reading and I hope to get to know you all better in the next few weeks.

 

Jules

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Hugs and best wishes to you and your son. There are a few campaigns about young people that might interest you, 1 is the 'every disabled child matters' which I think the government has that spells out how to get a statement for your son. Another is 'you need to know' which is about mental health services for young people. 'great expectations' is about supporting children through school to reach their potential. The last 2 are NAS campaigns.

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Hi Jules, and welcome,

 

I can well understand your frustrations, especially as you feel you haven't been heard for so long. Have you applied for your lad to get extra time during exams?, when are his GCSEs coming up? What does he want to do after his GCSEs, has he decided yet?

 

My lad is now 19 and I'm so relieved to have school over and done with but I well remember what it was like, the constant worry.

 

Don't feel bad about your lad's late diagnosis, you have tried your very best to get all the help for him that he needs, you couldn't have done more.

 

How is he socially, does he have friends?

 

Take care.

 

~Mel ~

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Hi Mel,

 

My son is thankfully getting extra time for exams but with very poor organisational skills I don't think he is receiving enough support in class, especially after missing school with anxiety, no one is helping him and advising him on what work he has missed, despite me asking constantly (sigh). I fear this is adding to anxiety, not knowing what he is doing or what is expected of him, stresses him out, and I have passed on my worries on this to Ed Pysch, she is going to talk to class teachers since no one seems to have already done this (which I find astounding) a support teacher said 2 weeks ago "well short of speaking to all his teachers..." ummm what all 7 of them????? I think class teachers are are giving him too many tasks at once, my son needs is to be told clearly what is expected and maybe only a couple of tasks at a time or he just gets confused, I mean why not put a note in his diary to me so anything he is unsure of I can help him... uggg it is hardly rocket science, why do teachers not get this!! The anxiety has got so bad again that he is only managing school 2/3 days a week :( On a positive the school have finally let him drop Drama (re. letter above which I was furious about receiving) which to be honest I think is for the best, when he got anxious because emotions are like a foreign language to him (question from drama - "how do you think this character feels? My son - "mum I don't know how you feel half the time and I live with you") I asked last year if he could drop Drama and was told no, even though it was adding to anxiety and causing him to be ill.

 

It is to hard when you don't know what to do for the best, will just keep trying.

 

He does struggle socially and rarely goes out with friends, but does have a couple of people he calls friends which is good. The NAS / Inspire have set up a social night once a month with teens on the spectrum, they go to cinema, bowling, out for dinner and he enjoys this. Generally he does pretty well with adults and enjoys being around my friends or people I know, maybe he feels it is ok if I think they are ok (shrugs) so it is not like he can't or avoids socialising at all costs. I think that maybe adults have boundaries and he understands and knows where he stands with them, teens have very little boundaries and can be cruel and I think he would rather avoid his peers. I think he will do much better in adult life, a huge positive was he did well at work experience (ok yes at his fathers work, he had met the people he was working with a few times in the past) father wasn't there all week and he managed just fine and really enjoyed it!! I think school is just too stressful an environment for him.

 

Thanks for getting in touch and sorry about the late reply x

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Welcome to the forum.

My special interest is books, so: Charlotte Moore, George and Sam. I hope you do find the time to read ...

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Hi juls, I can completely sympathise with your frustration. We don't yet have a diagnosis for our 10 year old son, and it is possible that none will be forthcoming as the school do not see what we see. Why is it that you have to constantly fight to get adequate support for your child? poor him and poor you. Sounds like you have a great relationship though and you sound incredibly supportive. I hope that he eventually receives the support he needs. x

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Is your son under Clinical Psychology for his Anxiety? If he has not been referred to them I would advise that you ask your GP for a referal, or if you have an 'open appointment' with the paediatrician that diagnosed, get an appointment to see them and a referal to ClinPsych. This covers you for his absences from school, and you need to ask ClinPsych for their advice to give to school.

 

Does he have a Statement. If so, does it include Dyslexia as a diagnosis on top of his Aspergers and organisation skills? If it does then the SEN Code of Practice details "specialist teaching" as one of the supports that can be provided for Dyslexia. So he should be getting specialist teaching and support for this.

 

There are some CRESTED schools [which are specifically for Dyslexia], that also take children with Aspergers. It would be a fight to get him into that type of school, but not impossible. You would need evidence that he was not performing academically at his cognitive ability and that the gap between him and his peers was widening.

 

You can also contact the British Dyslexia Association or Dyslexia Action for assessments/advice/specialist teaching etc.

 

If your son does not have a Statement I advise that you write to the LA and ask them to carry out a Statutory Assessment towards a Statement. If you do decide to do that, post back so I can give you advice on what to do next.

 

Here is a link to a USA website that I found very useful as it explains the symptoms of alot of disorders that are often co-morbid with an ASD.

 

http://www.schoolbeh...ve-dysfunction/

 

The difficulties you describe with problems with organisation etc are executive functions. My son also has difficulties in this area. It is something that again needs to be included in a Statement as a need, with support and provision to meet the difficulties your child has in those areas.

Edited by trekster

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