I am in serious danger of going mad and need your help. SN and non-SN parents PLEASE come and tell me what the hell is going wrong with my son I am about to lose it.

[hereidrawtheline]

I am sorry this is so long I am distressed and probably alienating many of you from reading let alone answering. But please if you can hear this cry for help I am really in need.

I am a namechanger. I am sure some of you will recognise me based on my DS's symptoms if you do PLEASE do not out me I am here to get help, I am honestly so beyond depressed and I am desperate. I can not enter in to MN politics I just want some help. I am losing my grip on stability.

This is what I need from you, PLEASE please help me if you can. I need you to read what my DS is like and tell me what the hell do you think is wrong with him. I am in the referral system - GP referred me to a specialist in this sort of thing, the hospital sent me to a different Dr in a quest to fulfill their quota, that Dr promptly said she could not help and that I had to see original specialist and would be re-referred. Then a month later still waiting for that appointment I chased it up as its got much worse and they fucking never re-referred us in the first place they lost the damn referral and had us down as a closed case. So as of yesterday I was re-referred again. In the meantime I am unravelling and my DS is suffering, I have no support, nothing to work towards and all I can think is I am a total failure as a mother even though I dedicate my entire life to him.

Please please please if you recognise these symptoms tell me what they sound like so I can at least cling to something while I wait and try to work out a better way of handling him than what I currently have. I am not asking you to diagnose him I know you cant but just as one mother to another tell me what you think is wrong before I go mad.

He is 2.6 years old. These things have been going on in one form or another for a long time. He is very very bright with a huge vocabulary. HV says he is in the top 2% of development and language wise on par with a 4 or 5 year old. I am just telling you the facts as I know them so you get a picture.

1. he repeats himself constantly. CONSTANTLY. He will say something relentlessly - he said something today around 50 times before I got him to stop. If you parrot back to him what he has said he will usually stop saying it but for gods sake I can not do that constantly. If I say "I heard you" he still says it. If I answer the question, if indeed it is a question and not a statement, he usually still says it. This is beyond normal toddler repitition. Its like a record on loop.

1. He will talk to you and repeat himself endlessly even if you are not near him. I can usually hear him but I am possibly on the other side of the house doing something and he knows I am not there with him and he will still say it expecting me to answer/parrot back to him. He also has no comprehension of you being busy or already talking to someone. No matter what he just stands there and repeats himself.

1. He is my oppressively my shadow. If I walk to the kitchen to get a drink he is under my feet. If I go anywhere at all he follows me NO MATTER WHAT. He asks me what I am doing every few minutes even if I am sitting with him on my lap reading to him.

1. He gets violent and has a melt down when opposed at all. Everything has to be in an exact order, procedure etc and if its slightly off he loses it. Today he hit me in the face when I got on the phone - I asked him if it was an accident he said "no I did it on purpose. I am angry because you are on the phone" ok I appreciate the honesty but he is a fucking tyrant.

1. He can not cope with negative emotions. If another child cries he screams, throws whatever he is holding and sobs til I remove him from the situation. If he percieves anger, even if there actually is none but he misunderstands the tone of voice, he hits whoever he feels is to blame.

1. He is OCD like with order, lining things up, certain foods, certain bowls etc.

1. He hates bright light. Every day we have to close curtains because the light hurts his eyes. He doesnt like loud noises. He wont touch certain fabrics.

1. If he does something and I say do not do that again he does it. Then when I take said object away he freaks out.

1. he is totally helpless. he has to have me pick something up for him. he needs me to move a car one inch to the left. whatever. I usually refuse or pick and choose my battles with him. when I refuse he melts down.

10. I do not spoil him. I am firm with him. I do not pander. But I cant control him. My GP said these things are hardwired into his brain so punishing isnt the answer. That is also my belief so I am trying to walk the line between compassion and pandering.

11. he freaks out if the wrong people sit on his bed etc or touch him

12. he is VERY emotional and sweet and kind. he is very vulnerable to getting his feelings hurt and blaming himself for everything that goes wrong.

13. he constantly asks if I and other people are happy. So much so I wish he wouldnt be so bothered about it.

14. When someone is mean to him he rewrites the history and changes it all to "nice"

15. He is very imaginative & creative. He totally uses every facial expressions and is very expressive.

16. he is openly and totally defiant of almost every instruction I give him.

17. he will cry and ask for help with something as soon as I go to help he screams at me not to help then it starts all over again.

I am afraid and flinch around him because he hits me so much. He never looks where he is walking or running or takes any care about what effect his body is having on his environment except on very calm, good days.

he has a brilliant memory and remembers shocking things like details of a day a year ago (not an important day just a regular at home day), the names of planets in solar system and can identify them with pictures, memorises poems, can read some etc

I feel so guilty. I have taken the time to sit down and write this and he is so unhappy. But I am going mad. I just cant cope anymore. Every time I do anything at all that does not involve him he cant cope and I feel guilty.

I dont know how to make you understand this but I dont spoil him. I do encourage him to have all sorts of experiences besides these. I spend A LOT of quality time with him. I am reasonable. I put limits on him. But he is totally and utterly untouchable and I am lost.

I am reading this back and I know it looks like a dicsipline issue but you have to trust me it isnt. Or at least it isnt MAJORLY. There is something wrong with him. He is not normal he isnt like other toddlers he isnt happy in all these times and neither are we. He can freak out over a little thing gone wrong or a little bit of kind discipline and it will last an hour and he will be rocking back and forth in the bathtub in the end.

HV and GP who have known him since birth and are both very good believe he has some medically caused problem but are waiting for the specialist to DX.

"sensory" integrations disorder

eek! now I've put an "s" on integration!

cannot type today...

thanks again for your posts. I am in North Essex.

You know I said he hits who he blames when there is perceived anger. I always thought it was a knee jerk reaction of his, done too quickly for him to think about it. Then one night at dinner me and DH were joking and he thought we were bickering and he calmly turned to DH and said "unstrap me Daddy (he was in a booster seat) I need to go hit Mama"

shocked me and made me laugh. dont know why I am telling you. Sorry!

lou I do wonder if what you say about his language is right. But I dont know. His language has never been formally assessed just HV always brings it up when talking about his difficulties etc

sounds like aspergers just like my son 6years we only got dx a months or so back due to gp making a big mistake! when we finaly went to cahms they dx more or less there and then also said they never seen a clear cut child with aspergers. but yet hes very sensetive and can read expentions from everyones faces

i hope you get a dx soon , i am still learning how to cope with how diffrent he sees life to me, but one thing i know is hes still the same ds i love and always will.

i can see you love your ds so much you just need a dx then you can move on.

I am glad and relieved trace2 that you can see how I love DS. I feel so ashamed when I talk about these things because to people who dont know him as I do they would make this the sum of his parts but he is such a dear little soul who is an intensely vulnerable child who depends on me to maintain all his sanity.

I guess my knowledge of Aspergers/ASD is so limited I dont know what to look for beyond the classic things we all kind of know of. I do know for a fact my GP says it cant be that as he is so expressive but you are all saying otherwise and you have the first hand knowledge, not him. His child is not like mine. Its a small village we all know each other more or less.

My DD has sensory problems, especially textures, and 'Asperger traits' but she hasn't got Autism but another condition. So as jabberwocky says he could have ASD or something very similar in symptons.

my ds used to be so expressive at that age he was a model and loved doing it loved the attention, but as he got older it changed!

i remember writing some thing very much like you on here when ds was 3 half i know in my heart he was diffrent but didnt persue it till he went to school when we saw big changes in him.

he is v bright boy too and talks none stop over and over again.

and yes you love him other wise why you asking on here to help you get help for him how to understand him better.

but like cocolepew says yes it could be ASD or simlar i hope soon you get to see some one quickly

one more thing

is this a normal toddler thing or not

when you say a word he often recites all the examples he can think of of that word and it is all very obscure then you finally get what he is talking about.

hell there was somethng else 5 mins ago as I was putting him to bed I made a mental note to ask you I've forgotten it now.

ah yes everything is (to use a slightly stupid phrase) 200% with him emotionally. He goes STRAIGHT to whining/anger/heartbrake/ecstacy etc. He is so full on emotionally.

thank you. He pretend plays a lot. Mostly the same things over and over again. We play doctor & its everyone has a bloomin tummy ache and bump, every single car he owns, cuddly toy, they all one after another again and again come to the dr to get their tummy ache & bump sorted out every single day.

Highly Sensitive Children (HSC) have many traits like this and react very strongly to things. HSC is sort of a step down from SPD. So, for instance, a lightly skinned knee that many children would hardly notice will send my ds1 into such wails you would think he had broken his leg. At the other end of it, when he gets excited by something he may start running all over the house because he cannot contain himself.

my ds still as masive meltdowns over nothing i think its because they see things in black and white no in between! some one who knows more will come along and help you am sure.

Just reread my post and I feel I need to clear up one thing. A child who has sensory issues can fall into so many categories. So, on the mild end might be considered just Highly Sensitive all the way up to being diagnosed as definitely being on the autistic spectrum. And they can all have these extreme reactions to emotion, injury, etc.

and like jabberwocky says there is so many diffrent traits sound so simlar but i think your on the right track getting him seen.

tbh am crap at typing and spelling and dont make sence. just understand what you going through

btw, good to be on a thread with you again trace2

small hijack

jabberwocky lol was thinking same so hows life since ttc threads?

Pretty good! Can't believe ds2 is over two now How about you?

tell you what lets go to chat thread ill bump for you!

AS was the first thing that I thought of when I read your posts, and I also agree that the idea of children with AS not being affectionate etc is a load of bollards.

The 200% thing is also very familiar. With ds2 there are no shades of grey. Every mood is taken to absolute extremes, whether ecstatically happy or in an absolute rage.

The pretend play also rings bells. I remember ds2's SALT being thrilled when he started playing with the toy kitchen - until she realised that he did exactly the same thing each time.

Tony Attwood's book (Guide to Asperger's Syndrome, or something like that) is a good place to start for general knowledge about AS.

Sorry, had to make dinner and get kids bathed etc....

I'd seriously consider going private if you can afford it. There are many clinics in London who will do assessments and make a diagnosis without the ridicolous waiting lists. I can't recommend any personally, as I live in the North /West of England, but a diagnosis would give you peace of mind and you'd then know what you were dealing with.

Maybe someone who lives closer could recommend somewhere.

First and foremost, reading this does NOT sound like a discipline issue at all. I am sure you are doing your best for your son and like your HV and GP have said, there is a medically caused problem. A big to you.

When I was reading it, about 95% sounded like my son, who has autism. I can totally sympathis with you on the repetative thing, as my son will repeat something over and over again until we say it back to him. He also ways "whats that" constantly, and will even answer his own question.

"GP said he cant be autistic because he is so expressive, emotional, affectionate etc."

My son is very affectionate, almost to the degree that it is unbearable. Your GP shouldnt be saying things like this until a dx has been given, as it is probably giving you false hope, and doesnt help things.

I went on an early bird course after my son was dx, and one of the things they recommend as a coping stratorgy is to "allow" for some of their behaviour. So try not to lose it everytime he is repeating something. If you perhaps repeat what he is saying more often,it will not be as often.

I hope you start to feel a bit better tomorrow, I had a really awful day yesterday, and was in tears most of the day.