Feeling lost and let down

Hi all,

I am really new to all this, my Ds was diagnosed in January with autism we have recently had ADHD tendenacies added and we are a waiting assesment on whether he does indeed have ADHD as well as ASD.

Recently i have been left feeling disappointed by our school, i do not know who to turn to for help, when i approach the school i get shot down in flames.

The most recent issues:

My son has sensory issues which the school are fully aware of, yet they are still trying to get him eating food they know he doesnt tolerate, my son has expressed feeling forced "Mrs TA forced me, i didnt like it, it was goppy and nasty" this normally results in him being increasingly picky at home.

on picking my ds up and taking him home discovering he had had an accident in his pants (number 2s) which he had clearly been sat in a while, when spoken to at home this was the answer "it was an accident, he had asked 2 different teachers to go to the toilet during rehersals for their end of year assembly", ds requires help when using the bathroom especially when it comes to number 2s, he went through a stage of trying to hold it just so he could avoid doing it at school, again this issue has been raised before and the school are aware yet it continues to happen.

Ds comes home with bumps and scraps with no explanation........ i always believed a TA was watching him as if left he ends up being picked on, isolated, or sometimes wound up by other children resulting in angry out breaks, that added to the fact he is very clumbsy and doesn't tell/express when he is hurt.

Illness, not being believed when informing school ds has expressed feeling unwell, this happens all the time, he now gets marked unauthorised if he had an upset tummy as they refuse to believe what we are saying, my ds rarely expresses or comes across ill (adhd means he is hyper even when ill) to other people you have to know him well enough to recognise when he is ill.

EP where to start............ i have been expressing my ds has had learning difficulties since pre-school, yet the EP (with schools encouragment) has stepped back because the autism advisory service are apparently involved (not to mention her high work load which we have been led to feel is the real reason). Ds in on p7 level and moving into year 2 in Sept, yet the school do not listen to our concerns, they and others would much rather blame it on him "losing a year" after the lose of his brother last year. A whole load of nonsense when i have been expressing concerns with his learning since he was around 3 years old, previous excuse was his lack of understanding and language skills (no longer an issue SALT have said his use of language is finally at an acceptable level)or blamed on his behavioural issues and the fact he really fights when he doesn't want to do something, we fear next year it will be blamed on the arrival of his little sister (due end Sept). they almost refuse to asses for a learning disability.

The list goes on :-( i just do not know where to start, or who to go to? we really want to get everything sorted but just don't know where to start. Being new to all these i have no idea on regulations etc 

Thank you to anyone who takes the time to read this and has any helpful advice.

  • Former Member
    Former Member

    Dear @alewilson,

    I (recently diagnosed AS) have been looking at the possible impact of diet on ASD. Your story chimed with something I've just been reading. Would you mind describing your son's diet and eating habits?

    There seem to be a lot of stories about diet vs ASD and it's hard to figure out what's real and what's not. My guess is that it may be relevant to some sufferers but not others. So far I have come across the Feingold Diet, the Food Intolerance diet from fedup.com.au and the GAPS diet. Rather than follow one of these I would suggest talking to your GP about your son's diet and toilet accidents etc and seeing if they have any advice.

    Various people claim that their diets can massively alleviate the symptoms of ASD - personally I haven't seen this but I'm aware that some foods really don't agree with me and that, in hindsight, I suspect I might be one of those 'sensitive' souls.

    As I understand it, a food intolerance or preference may prompt the fussy eating habits and the very restricted diet that the fussy eater develops can be quite harmful to the comfort and wellbeing of the sufferer. A vicious sircle ensues with the restricted diet then causing worse behaviour and fussiness.

    I think there is advice on fussy eating elsewhere on the NAS site.

    I would be very interested to hear your own thoughts and experience on this.

  • I am glad you are going to apply for the statutory assessment.  It should give everyone involved the opportunity to really highlight the areas of need and hopefully put things in place to help.  It may also open up other posibilites, for example, a more appropriate school.  I found parent partnership very helpful for the assessment process.  I think I am right in thinking they have  a format you can follow for your parent report.  Having the summer holidays ahead of you might give you a good oportunity to really study his behaviour and make notes of anything and everything.  My parent report was literally pages long.  Look online for help.  Good luck with your son and your new baby. Smile 

  • Hi All,

    Thank you for the replies, he doesn't have a statement at the moment but i have now been advised i can ask for a statutory assesment so i will be doing that at the begining of the new school year, he is currently on school action plus though i didnt know this till the begining of this month (at his review) when it was dropped into conversation. No offence taken to the ASD question, i have often questioned whether my husband is but no neither of us are (as far as we know) i lack confidence which means i shy away from disagreements even if i know i am right.

    We have decided to go along the diplomatic route and a letter has been now been written up outlining the issues with food and asking about a care plan when it comes to toileting, hopefully this way things can be resolved. The school are generally quite good as it is a small village school, because of this he does get a fair amount of help, but its just unfortunate that the attention slips at time and they seem to forget my ds' ASD, that and typical of a lot of schools they think they know better how to deal with a child then the parent who probably knows the child a hell of a lot better.

    I think the school have slipped and over looked how stressful this time of year can be for an ASD child.

    Thank you again every1 and any further advice is very gratefully recieved, i seriously need to swat up on what i can and can not do.

    xx

  • Former Member
    Former Member

    1) I agree with Y'Lass, changing schools could well be a good move. Schools are very variable in their ability provide a sensible environment for life and learning. The environment is massively more important for an ASD child than NT children. We moved both of our children (not diagnosed - it's me that has the dx)

    2) I hope you don't take offense at this but did your son inherit his ASD from you or partner? I was diagnosed recently and can now see that my relationships with my kids schools etc certainly wasn't helped by my own dodgy social skills.

  • I am so sorry to hear what a horrible time your son is having at school.  It must be awful for you all.  Can you just clarify whether or not your son has a statement of SEN?