Aspergers,ASD,SPD,Statement,Diagnosis Want to Swap Horror Stories Re Education????

[morethemerrier]

Hi All!

After a very long struggle, four schools, countless meetings, expulsion ( at the age of 5!), lots of tears, anger, frustration, social services, ( long story,will elaborate if thread picked up!), we have now been told that our DS has Aspergers, yet to be diagnosed, but highly probable.

So, my question, to all other mumsnetters out there is, how many of you have had to endure the horrific treatment that we have?

He was our first child, so we had no comparison, I would be interested to hear other peoples stories as I really think there needs to be a better process for identifying the needs of children who are outside the box!

The problem is this is going on all over the country, I keep getting told that most parents will not fight becasue they are not emaotionally storng enough or they just beleive that what they are told is right. I will not sit back and let this happen to my son and i really think that the LEA think if they keep pushing me and making me fight there will come a time i will sit back and give up. I have been close to giving up SO many times but one look at my son and i know thats not an option.
In my county without a DX you get no or little help. Also in my county is the view that you should not label children!!!! im beginning to think its a big cinspiracy theory as CAMHS say dont label children and LEa say no DX no help AND all over the paperwork for CAHMS is the proud statement thats CAMHS works closely with Leicestershire county council!!! COINCEDENCE?????? I think not!
I have written to the MP and local rep about the dire state of SEN provision in the area especially for children with no learning difficulties but Severe Behavioural problems. 'Every child matters' should be sub headed with 'but only if they fit our budget'!!!!!!!!!!!!
Sorry if i sound bitter BUT I AM!!!!LMAO

I'm bitter too and proud of it bonkerz!

Bonkerz, I am with you all the way! I have as of last night written to Gordon Brown and will let you know if I get a reply. It has taken me four years to get ds into the right setting and he is now in the asd unit of what is his forth, or is it fifth? school! Although he is nearly nine, he has only had about 1 year of consistent education which is diabolical and has compounded problems further. TotalChaos, good for you scoping out the school first, until I started fighting back (sad isn't it)we were afraid to ask for anything as we were made to feel it was our fault and ds was the devils child! Bonkerz did you ever get response from your valiant efforts? You are certainly my new inspiration and I will be borrowing some of your fighting spirit if that is ok!With regard to the SENCO in the schools we had the pleasure of attending, it was usually one of the teachers who had 'been on a course'! How about a dedicated dare I say FULL TIME independant SENCO, who works on behalf of the pupil and NOT biased to the school????Thanks again for all your messages, I really am grateful! Ds also has a statement now, and I am now looking to the future for his secondary school?!? Judging on how much time LEA have wasted in his early years education I am staring now!

mtm, HAd a response from MP when i worte to him recently about probelms i was having getting full time statement, LEA had awarded 15 hours DESPITE MS school declaring they needed ATLEAST 32.5 to meet DSs needs. i worte to MP to tell him i was disgusted with having to fight for something that was being asked for by head of MS. £ days after the MP wrote to the LEA i had a meeting with caseworker who said they would increase hours to 32.5, MPs help certainly made it possible to get that withouth havingt o fight! At that same meeting Case worker told me they ahd heard from MP so i know that Mp being involved made things easier!
HAve recently wrote to him again thanking for help with statement but updateing him on the fact that despite having 5 proffessionals who know DS well saying he needs a ASD unit DS is not allowed to go to one without DX and asking why LEA in Leicestershire has NO provision for a child who is G&T with SEVERE behavioural issues! As yet no response but its only been a week!

I honestly can't fault the help we've had from professionals regarding Ds1's diagnosis and help. He's at a marvellous school that understands and supports him and appears to utilise his strengths well. It's really only been the odd lay person whose caused problems, usually along the lines of "oh you're worrying over nothing" or "my child does that" or "in the case of myself) "yeah, I do that as well." Put it this way, if you had severe depression and someone said "oh we all get a little blue now and then" you'd feel the same way I do. The result being is that I now feel very wary about trusting people to understand about Ds1 or myself.

Totalchaos:
I did a one day Help course and several Help2 seminars before J got dx. Just book yourself in and go, they won't ask and are usually very willing to be of help.