Hello, I have been reading all the related posts to this subject over the last few months and I must say the help and knowledge i have picked up has been amazing. It has helped me through those nights when my mind does 180...thank you mumsnetters!
I must just say that i have posted this again here as i thinnk i did it wrong the first time, sorry if this is the wrong thing to do.
I finally plucked up courage to wtite and sorry i am not familar with the lingo yet so please forgive me. Sorry i think this is going to be long, i will try and shorten it as much as possible.
My son is 6 years old and has had issues that have not been too extreme but visable mainly to family and close friends. I have really always known something was a little different about him. I wont go into it as it will take to long but they are those typical of an autistic child. After the 100th clingly moment at the school gate and being forced into school, years of worrying and wondering why things are the way they are i decided to check out his symptons online and was amazed to see that aspergers kept coming back to me time and time again. When i read through the Aspergers/ASD/Austistic signs both me and my husband felt instantly that this was our DS and the more i read the more i felt i knew what was going on.
In Feb I took DS to the GP explained my concerns and was referred to our community pead. The pead saw him, listened to our concerns and requested we go back to her in 6 months in the meantime she would get reports from school and put his name provisionally on the CDAC waiting list plus refer him to a speech therapist. She said after she meets with us again at the next appointment decisions will be made as what to do next, i think she meant keep his name on the CDAC waiting list. I think that she took us seriously however part of me felt that she did not however she has agreed to see us again so i assume this is a good sign. The pead told us that the waiting list for CDAC is one year.
The problem i felt i was facing origianlly was that the school are not picking up on any of our worries with DS as he is a good boy in school. Infact he is petrified of getting into trouble at school. The teacher asked to speak to me about my sons social struggles in the beginning of year 2, last year. He was sitting on his own all playtime. He desperately wanted to play with people but for some reason was not, he would tell me he would sit on the buddy stop and nobody would come. He hates team games and football so i guess that sets him back instantly. At this point i did not know anything about ASD so none of this and his other behaviours rang alarm bells, which i hate myself for as I should have looked into it sooner. Any issues i had raised with the school in previous years had all been noted as it is because he is a boy, boys are slower, he is shy, etc. Lets see he is in year 2, then moving it to year 3 and so on.
After our pead appointment i went back to see the class teacher to tell her what i thought was going on, she listened and said that the my DS is considred as shy and quiet, doesnt talk to adults, struggled socially but is getting better so is not a problem anymore. Struggles a little academically but is the youngest in class and as there are alot of boys like this in his class teachers say it is no different to other boys. Nothing is sticking out as being totally different, he struggles with some things but so do some of the other children. It would only be in year 3 ie juniors that they would expect changes. I told her that i accept this but i feel strongly that something is going on and that I will leave it for now and be back in touch. I also spoke to the SENCO who listened but didnt have much to say......i think she thought i was a little crazy! She told me that she is not trained in ASD and basically i dont think she had a clue as lovely as she is.
The little boy in the classroom is nothing like the little boy at home. Dont get me wrong he is the most loving child ever, has a good heart, no problems with affection especially towards me, he is amazing and just super but he has times when his demands, routines, obsession and other behaviours are extreme to bursting point.
If you are still reading this...thank you.
So, whilst waiting for our next NHS appointment I decided that i needed some kind of professional confirmation that I was not going mad as too date both professionals i had seen had made me feel a little like i was on another planet (school and pead).
I decided to have my DS assessed privately, I spent a lot of time finding someone i trusted and he had a full comprehensive assessment that covered everything but he did not have any assessment specific to ASD's such as the CARS or ADOS.
The clinical physcologist who assessed my son has given me all his scores and has said that she is confident my ASD suspicions are correct. I am still waiting for the full written report but off the top of my head she told me he has no theory of mind, no abstract thinking, shockingly low scoring for verbal skills, cannot express or understand different emotions to name a few. Unfortunately she cannot give an official diagnosis and we would need the ADOS in order to do this. She can do the ADOS but I am not sure what to do next, do i fork out more money privately, do i wait for the NHS. I just dont know what to do. A year seems so long.
I feel understood that someone is finally accepting what i am trying to say is going on and has seen it for themselfs and acknowledged it. It is a great relief although deeply upsetting at the same time.
We are due to go back to the NHS in 3 months and I have also provisionally booked an appointment with Daphne Keen in Sept (Thank you mumsnetters). I will stick with the NHS no matter what as i have read time and time again that the NHS dx is essential.
Our private physcologist has said that she is going to call our NHS pead and discuss her findings with her and send her the report on my son. i am hoping that this will make things easier for us to get our son dx.
I fell that a dx is important in order to get our son help and I do not want to approach the school again without it as i feel they will still poo-poo me. Our phycologist has given us lots of help and advice with ways to manage things. I finally feel like we can move forward. I am so worried about my son but i know there is many of us in the same boat.
Thanking you in advance if you have any comments or suggestions.
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6 replies
nickala · 24/04/2013 16:09
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PolterGoose ·
24/04/2013 16:16
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