Just want to know im not alone!

[nosuchthingasagruffelo]

Sometimes i feel so alone and so fed up, emotional and like im a huge failure.
Ds has just had a huge melt down as i needed to cut his nails not normally a problem but i had to use new nail clippers as the others had broke!

We are going through the whole assesment and lots of different theories are being thrown around he has huge sensory issues along with other asd traits but because he is an absolute delight at school no one seems to take me seriously. They dont see these melt downs or him running into the middle of the road, they dont understand why i have to use wrist straps. Ds does however show his sensory needs at school as he chews everything and anything in sight he also has fine motor delays and has an individual education plan which states he has delayed social development and fine motor issues he also visits the nurture class every afternoon for special help. So why do the school refuse to admit theres nothing wrong!
Im just frustrated! im sorry for going on i just needed to let it all out.
Im very isolated where i live and sometimes it gets on top of me especially after this afternoons melt down!

Claire xxxx

my DS just had one such meltdown throwing things lashing out rolling of his eyes , hes going to SS after the holiday in couple of weeks so i hope they will be able to help as atm hes the worst ive known him its a nightmare, so your deffinately not alone and i feel that way too exactly why i joined mumsnet.
you need yr dx asap so you can get help for yr Dc and help for you look on NAS website to see if there is a group near you or see if their is an as or asd school near you where even if you do not have a dx yet you can go for a coffee and a chat to other parents from there you will find out all sorts of info inc days out and courses for yourself and DH or grandparents to go to to know what tactics to use to best avert/ help these meltdowns and undesired behaviours

You're not alone. Although DS2 seems to be quite happy to display his meltdowns anywhere -
~school, paediatrician's office. That can be good... or that can be bad... LOL

If he's got an IEP and going to an extra class for special help, then obviously there's something going on and they know it. Perhaps they simply don't understand the extent of it.

When you say you are going through assessments and such, is this through paediatrician? or school??

You are not alone :o

My DS has serious issues on having his toenails cut and I have to try and do it when he is asleep (not an easy task as he fidgets in his sleep).

He has had two great days up until today.........I had to go in school and get him because he went into "I am a ninja world" Obviously stressed about something and shut down. So there he was brandishing a recorder as a ninja stick Brought him out of it but then he didnt like "real world" and ran under a table.

There obviously has been problems or issues at school for him to be on an IEP and having extra nurture tuition. Have you had an appointment with your SENCO at the school? If not I would make one and state your concerns.

Thankyou so much for your replies!
He is currently under the multi agency assessment team and has a paediatrician. I get the feeling they dont really know where he fits in as he has lots of traits and issues some are very noticable but other are more subtle and only show when he is distressed.
The school SENCO is his class teacher and is an absoute nightmare she bases everything on her opinion and not on facts we have a meeting with the school coming up because she basically lied on the DLA report that was requested saying he had no extra help at school and was a normal child!!!!
He also has faecal impactation and food allergies and intollerances. He is seeing a specialist soon as he has problems with his hips, knees and ankle joints and has hyperflexibility they are thinking the pains he gets might be linked to juvenile arthritis!
His paediatrician is very supportive and realises there is something wrong but has done little in the way of helping me with my issues with the school!

I just feel like im fighting a losing battle all i want is to help him in everyway i possibly can!

Claire xx

She lied on the DLA report? But surely that can easily be disproven by showing the copies of the IEP and IEP reviews and any other paperwork generated by school assistance?

And if you feel that the SENCO is derailing things, can you speak to the paediatrician about it? If they are working together as multi-agency, the paed should have some swing on this. (well, they should anyway, but if they have to work together frequently, the paed needs to know what's going on)

Yep she lied the DLA sent me a copy of the report after ringing me saying there were differences between my account the school an his paediatrician! I am meeting with the school to ask why she thinks she can lie and if they dont do something about her arrogant i know better than everyone else attitude i will make a formal complaint! i have all the evidence i need as regards to her lying, IEPs paed reports and other things!
I spoke to his paed about it all and she said i was just to ignore her?? easier said than done when i have to speak to her everyday!!

Also could i pick your brains about something thats been bothering me? im not sure if im making a big deal out of it or whether im within my right to be anoyed.
Basically ds chews alot he will chew anything its just his way of processing things an coping with the day to day things. im waiting on some chewelery so he has something safe to chew. Well his teacher has taken to if he doesnt chew his jumper (or what ever) over a period of a couple of hours she feeds him jelly sweets but hes now taken to hiding the fact he chews spending time in the playground hiding chewing his socks so she cant see.
One of his traits is echolalia and he often constantly repeats when at home "its naughty to chew" i have never said this! ever! my moto is if chewing helps him then chew away!
What would you think?

Thanks Claire xx

hi....keep a record of every appointment,when ever your in a meeting with school you ask that the meeting is minuted and that you receive a copy of that report after the meeting by post i would never attend any meeting at school if its in relation to my disabled child that way accountability is easy to pin point,who says what ,etc...hey no professional knows your child better than you do.keep a diary of certain triggers.food diary ....this helps all involved.if you find schoo; challenging take a friend and remember dont ever feel intimidated you are there to get the best for your child and the rights of the child are paramount priority,,,,chin up it will get better,you keep good records there your evidence as for the dla keep reports from any professional involved with your child and give their report if school are been funny....i have never had a problem with dla i send every report every meeting record just bang it all in hun......the more evidence documentation the less likely they will refuse...good luck;o)xx

We had meltdows this evening too , i have 2 dd's on the spectrum (age 7 and 5) and they both kicked off at the same time, dh and i are now not talking (because we both have different views on how to handle these situations) and i feel real , some days are so much tougher than others and today was one of thoughs days, fingers crossed tomorrow will be better.

marne...tomorrow is another day...just remember you are doing the best you possibly can dont be to tough on yourself.......;o)keep a record of possible triggers before an incident they could be a pattern and try an intervention before the kickoff....have a good rest of evening xx

when we have dds and dss,with any additional needs,we should have all the support we need from school and professionals,we work damn hard to be champions for our kids,they should be doing the same for them.

Hi nosuch, I just wanted to add that we are in a similar situation Dd3[8] has had many assessments all pointing towards an Asd and yet the SENCO/HT at her school sees none of her issues, she thinks that her vomitting when stressed and rubbing her face till it nearly bleeds are figments of my imagination. She lies on reports too and seems to genuinly believe that she knows my child better than I do.

I keep a diary and copies of everything, I also now put things in writing to school so that they can't be twisted to suit her.

Is there any way you could move schools, I know this is easier said than done.

By the way Dd3 doesn't tolerate nail cutting either, she bites her finger and toe nails so I can't cut them with the clippers, the downside of this is that she often makes them v.sore.