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.

You poor thing, it sounds as though you're having a tough time. I have to say like many of the others, Asperger's really sprang to mind when I read your OP.

I'd make notes on anything and everything which concerns you, including lots of examples of behaviour, and go to your GP and ask for a referral to a developmental paediatrician. If you can, get hold of the booking team tel no and you may be able to get yourself bumped up the list - I'm always doing that, otherwise we're waiting months between appointments.

And go easy on yourself, this isn't a situation which you've created through doing anything wrong, your ds is having some difficulties and you are doing exactly the right thing in seeking support for him. Keep posting.

Hi again. Just off to bed after an exhausting day. Thanks so much for your input. Please any more you have to offer I would gladly have as its all helping me right now.

I want to look for a private hosp. to take him to. If anyone has recommendations in the Chelmsford/Colchester/London area could you let me know? If the referral comes through quickly enough I will stay with nhs but I really dont want another 2 month wait or longer, which I know you all understand.

Just to add my weight to the whole 'GP is an ignorant muppet' vein - J is 7, autistic and very very affectionate (too much!), extremely expressive and all of that. Still autistic. They call it the 'active but odd' type, rather than aloof or passive.

He sounds v similar to your lad. I really hope that you get some answers soon.

Active but odd - I hadn't heard that one but sounds a lot like ds1!

active but odd. That sounds like DS!

How do you come to grips with your child having SN - ASD.

Prepare for irrationality:

"I tried to go to bed ages ago and I cant sleep. I am scared for him. I am scared if I allow him to be DX with anything at all he will be labelled with it and always be introduced or explained away as "DS with ASD etc" What if it is all my fault. What if I am just not parenting him properly and making him behave in strange ways and because of my mistakes he will have a label that may define him to certain people."

I know all of that is wrong. And I have never ever been a person to think there is anything wrong with SN. Opposite in fact I find it to be just that - special. A trial yes but sometimes a gift too. I am not worried for him to have ASD. I worried people will label him as something, anything, and leave him in a box. I felt the same fear when HV said he was showing signs of gifted at an early age. I just want him happy and well looked after.

How do you come to terms with it? I know it my heart what it is. How do you come to terms? And what does the future hold for children like yours & mine? This is a world I have only just entered. Apologies for my awkwardness. I have, as you can imagine, had a horrific day. And have spent the whole night tossing & turning. I am just not up to my usual standard! LOL

Ah, good question. Sometimes I don't know if I have come to terms with it. I still get frustrated and tired. Dealing with ds1 sometimes takes everything I've got and then some and I just want someone to take care of me for a change.

I had wondered if giftedness had been mentioned with your ds. It is very commonly associated with children who have sensory isues and/or are on the spectrum. Ds1 has sky-high IQ and yet couldn't do up buttons until he after he turned 5.

I think a lot of us wonder if there was something we did/didn't do that made our kids turn out this way. Jenny McCarthy said in her newest book "Warrior Mothers" - or is it Mother Warriors? - that she had a breakdown at one point and her therapist told her that it was because she had never forgiven herself for Evan being autistic.

But you are right about the specialness. Ds1 can be incredibly interesting and funny and highly sensitive in some very touching ways. There was a really great ongoing thread for a while about children like this and I only found it after it had gone rather quiet. I will try to find a link for you. Perhaps we can get a similar thread going again

The fear of labelling affected us too. For instance, ds1 has SPD but dh doesn't want him to be evaluated for Asperger's. The symptoms are so close and the treatments basically the same, so we go back and forth all the time as to whether we should investigate further. Getting the diagnosis of SPD was important for me b/c I had something to focus on and could get him into therapy - which has helped.

Anyway, you're not alone. It's a journey many of us are on. Maybe that helps a bit?

How do you come to terms with it? In my case rather ungraciously! We only had the dx of HFA for both my sons age 13 and 10, back in October.

I knew my older son was different from age 2/3 perhaps, when he went around examining the plumbing of the radiators instead of sitting on my knee at toddler groups to sing! I didn't realise about ds2 until maybe a year ago when CAMHS suggested he be assessed for an ASD.

I had a visit from a local autism charity a few days ago. I was given a leaflet called The Parent To Parent Line, it is trained volunteer run, number is Freephone 0800 9520 520. It is part of NAS. It doesn't look as if you have to have had a dx to phone them??? It is a 24 hour answerphone, so leave a message and someone will get back to you at a convenient time. I haven't used it yet, but it looks good.

Also I'd suggest reading the SN board, loads of posts re suspected aspergers/autism of various sorts on there.

My younger son was very into jokes and pranks when he was smaller, btw.

Oops, on SN section already. Too early in the morning!

hereidraw theline nothing to dd other than a hug ,

But your not a bad parent , i wondered that to with my ds whos 3 with GDD and SLD also query asd and woried what others would thnk buts its their problem not mine.

oh nd guessing were not to far away from each other either im nr Colcheste

Your DS sounds like my 16 year old DS who has Aspergers with dyspraxia and dysgraphia. Yes he can be loving, yes he does 'get' jokes but then he also has other ASD traits (much more so than his peers). He is obsessive about his obsessions. He can't deal with noise, smells colours (I thought he was weird the first time he said "That smells like yellow"), has issues with food textures and a triad of other ASD triats.

if he does end up with a diagnosis of ASD - noone other than the professionals involved and later down the line his schoolteacher ever need know. up to you, and then later on him who you choose to disclose to.

I think I am going to have a mental collapse. he has been sobbing and gulping for air and hitting me and in a total state because he wants his toy airplane to feed him his cereal without my hand being involved. Its been going on for 30 mins. I didnt sleep last night. I think I am going to lose it.

Thank you for sharing your stories with me. I will phone that help number today as well. So sorry I sound so pathetic and keep asking for help but personally I just feel so bad. I have been hit and shouted at and cried at then hugged and kissed and played with for weeks running and I am worn out.

Hi hereidrawtheline. I'm at work so haven't been able to read the whole thread but had to reply after reading your OP. I have every sympathy with you and i know how you feel cos I'm exactly the same. My DD is now 8.5, has SLD and mirrors all your DSs traits and I have felt exactly as you do. I've often thought that that it must be because I am such a terrible mum, but I know deep down that's not true and it's certainly not true in your case. The way you write about your DS distinctly shows how much you love him. It's incredibly hard to keep it together when your so stressed and unhappy every day, I know that only too well. Just last night for example I lost it with DD as she was a real terror just before bed. I lost control and even told her how horrible she was, then this morning she got up and ready for school like a little angel, how guilty did I feel then . I've been so low sometimes that I've even thought she would be better off without me! Anyway now I'm rambling, what I wanted to say was it's not a discipline thing and none of it is your fault, lifes dealt you a shitty hand but you're doing your best to deal with it. Hope you get some answers soon, the ladies on here are all great and no-one is going to judge you, just give you lots of hugs and good advice. Take Care.

Hi Hereidrawtheline, I also think you DS sounds like he is on the spectrum. I have a DS with mild AS and he is like your DS in some ways.

I am posting specifically about your last post last night where you asked how you come to terms with it. It is a difficult question because we all deal with it in our own way. However, from my point of view, my worst point was where you are now, just acknowledging there is a problem and you need to get somebody to look into it. For me, once the process of looking into the problem was underway I felt like I was doing something and we were getting somewhere. By the time we got to the dx and the 'labelling' bit it was all a bit of an anti-climax. I knew what was coming and it was a case of making sure that DS was then getting all the help he was entitled. I know others feel the dx a lot more, we are all different and there is no right way of coping. I just wanted to say that if you are like me then it will get better soon.

As for your DS's problems being down to bad parenting or in anyway your fault. It has been that this is definately NOT the case. In fact only a few minutes ago I was reading how it might be due to higher than normal testosterone. That is just one theory but none of it is the fault of the parents.

The labelling is difficult. I didn't want DS to have a label but now I see it as a sort of short hand, a way of not explaining to anybody who asks that he isn't just immature/not very bright/badly behaved - he has a condition that makes him behave that way. (That isn't to say he isn't bright by the way but sometimes he might come across that way because he may react like a much younger child). If I say he has social communication difficulties, it sounds like excuses even to me. If I say he has AS then people are more ready to make allowances.

The other advantage of a label is that people (schools especially) will do more to help, assuming they are a half way decent school.

Get the doctor to refer you to a paed - he doesn't have to agree with you he just has to write the letter. (My HV approached the GP on our behalf as she was the first person I spoke to about it. Perhaps your HV would do the same).

Good luck.

thanks sadnog. I hadnt heard of SLD til your post just now. Or I guess not as that name.

DS just said he isnt happy anymore.

Sorry if I made it unclear but i already have a referral in the works from GP. He said there was definitely a problem & has referred me to the right person but he just said he doesnt think its autism regarding the expressiveness/emotion etc

gosh I am tired!

DS just sat quietly next to me eating chocolate buttons then turned to me and said "DS not happy anymore, DS sad"

I am sure you all know I am broken hearted hearing this and feeling so tired myself. So sorry for the endless whining!

Sorry things are so tough. Does he go to nursery? Sounds like you could use a break from each other (we all can sometimes and you sound at the end of your tether) and help from a good nursery could be useful.

Sorry, I thought you said he had a referral but I read it last night and then got the wrong end of the stick from other posts this morning.

You most definitely are not whining. You are dealing with something big and you are trying to find the way. Talking about it is not whinging. We have all been where you are. Say what you need to say.

Thanks I think I should have cleared it up about the GP referral earlier but tbh I forgot.

DS does not go to nursery. I have always been a SAHM and do not have any relief like Mum around or anything. In Feb he is going to start preschool going 1 morning a week but I will probably end up staying with him there for a while anyway to get him settled.

It is the weekend so DH will be home after tonight and I will have support over the weekend.

I think of age 2 as being the age of discontent - that you have a little child who is very mobile and wilful, but without a good idea of risk and appropriate behaviour - so I think frustration and moments of unhappiness are inevitable for all children that age. So please don't try and take it to heart so much when he verbalised discontent.

Please, Please do not think that you are whining. Reading your posts brings tears to my eyes (quite embarrassing as I'm at work right now!) cos it brings all the same feelings to the surface. You're at a really low point right now and you're just needing a shoulder to cry on. As Niecie says, just let it all out, we've all been there and we understand. Wish I could do more to help.

hereidrawtheline - he does sound a bit like my DS1 (now aged 9) who was DX's as having HFA. Like your DS, he was very vocal at 2.6 (although he couldn't talk at all when he had just turned 2) and he was in the top 2% for early maths ability etc.

He is now doing fantastically well at mainstream school and although he still has a lot of quirks, and I do worry about him, he has made amazing progress. Wbere there's life, there's hope...

www.autism.org.uk/

heres a link they give numbers to go private i was going down this route untill we got seen quickly due to the gp mistake

I think that when they're still so young it's still all very much up in the air and you're left feeling as though you can't really plan for anything because you have absolutely no idea how things will work out. With my two boys I've found that it gets easier to come to terms with as they get older and you can see which way things are going.

Like you I always used to think that ds1 was going to end up going through his childhood being known as -the-autistic-boy. Tbh that hasn't happened at all. He's now 8yrs old and even though he gets help at school with his ASD-related difficulties, he's just regarded as . He's included in absolutely everything and given all the encouragement he needs if he feels unsure about something. If you'd told me back when he was 2.6yrs that this would be the case, I would've found it really difficult to imagine. So much can change.

You sound neither whiny nor pathetic.

I'd just like to say that my DS's dx has helped him, he understands why he is different and has been known to use it as a comback when he was bullied at school for being a 'geek' or weird or whatever the little dears chose to throw at him. He would come back with "I'm autistic. What's your excuse?"