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.

oh shit its a bloody long post isnt it

Well, he's got very heightened senses, hasnt he? Eyes and ears and touch. What's he like with food?
I dont really know anything about ASD/aspergers or such like but, you are obviously very anxious about it. I hope you get to see a specialist soon. x

thanks for being brave enough to face my huge post. he is the same sense wise with food. GP said he cant be autistic because he is so expressive, emotional, affectionate etc.

I sympathise.

My dd1 is exactly the same re: repeating everyhting.

She has spent the last few weeks shouting/screeching at me constantly because I cannot always give in to her demands.

Sometimes she merely wants the phrase repeating, and that is enough.

Sometimes she is saying the phrase because she wants confirmation that it will happen (eg "have a bath after watching Mr Tumble")

Sometimes she is saying the phrase as a way to stop me talking to other people

It is very wearing, and I have had the worst few weeks ever with her recently.

I have had an email form her behaviour consultant - hold on, and I'll just go find it and paste up a few recommendations on how to deal with it

Well, like I said, Im no expert, but Im not sure your GP is either. He may be on the spectrum.

TBH, he sounds a great deal like my own ds at the same age. A year on, and since he started nursery hes miles better. It's so hard isnt it?

thank you silverfrog

this may sound dramatic but I am sitting here limp in front of the laptop and I am totally broken. I cant parent right now. I feel like death inside I just can not cope with this relentless form of abuse or stress or sympathy and everything it is. I love him more than anything and when it is good it is very good but when it is bad it is hell. And lately its very bad.

If someone would just convince me he was autistic or anything for fucks sake and help me.

He has probably got SPD. And he is very bright. Thats it. Thats all I know.

Right, here goes.

Bear inmind, we are at the beginning of talking baout htis (hasn't sent me quite as loopy in the past as it has recently - probably really bad now because dd2 is getting in on the act too, and I really can't cope with both of them doing it!)

"Regarding the shouting...this is obviously a more difficult behaviour to change.

There are, I think, 3 possible routes to dealing with this

1. Put the behaviour on extinction. Totally ignore it, until the reinforcement which previously maintained the behaviour is weakened so much, that the behaviour fades out. This is really like "going cold turkey" on the behaviour. It will certainly get worse before it gets better, but although it is probably the most stressful for parents (because XXXX WILL get upset) it is the fastest and surest way of getting rid of the behaviour.

1. Weaken the behaviour, by giving in to her demands ALL the time. Over time, because she gets reinforced very quickly, we weaken the durability of the behaviour. We then adopt an extinction procedure (as above) which should eradicate the behaviour which has not been strengthened by us refusing to give in for long periods...and then caving in.

1. Take a more methodical and clinical approach to reducing the behaviour by targeting specific times (when we know we can trigger the behaviour in XXXX) and work on reinforcing her for not making demands for that very short initial period. We would need to respond to her at all other times. This approach is probably the least stressful, but it is also the most work intensive approach and will probably take the longest to be totally effective."

So there you go.

I have to say, none of the 3 appeals to me very much but we cannot go on as we are. Dd1 can get hysterical if I do not give in to her, and has begun to claw at her hands (which are now permantently covered in scratches) and mouth

Hope that helps a little.

I was initially thinking Aspergers when I was reading this, and certain things do point to it, like the lining up and heightened senses. I do think and I may be wrong here but your gp is wrong to dismiss this, If I was to take a list like that to my gp (which I did) he would be most concerned.

perhaps some kind of sensory overload.

I would say that 2.6 is young, my (hopefully) nt 2.4 month old will do similar things, and we keep watching him with raised eyebrows, but I do think a lot of it is frustration, they also learn from an early age which buttons to press.

I do know from another site I go on (boo traitor I hear you cry) but they said her little boy totally normal, so she took it higher, years later they said HFA and amazed how anyone could say different. And she took him to an expert in that field.

I am sorry, I dont think I have been much help at all, but I would deffinately pursue having referred even if you just say "Look for peace of mind, I know something isnt quite right and want him referred" Sadly Im sure I read some where that is costs thousands for drs to refer out of their own budget.

There now your long post doesnt look as bad, because Ive waffled more

I totally understand how you feel, hereIdrawtheline.

I never used to understand when people said "I love my child but I don't like them".

I do now.

I have found it unutterably hard these last few weeks. Everyhting I do (even drawing breath) sets dd1 off on another round of question/phrase repetition.

Nothing goes to plan. I cannot talk to anyone, not even dd2. I cannot do any task around the house, without being screeched at because I am not devoting full attention to her.

It has been the hardest time I have had with her.

I agree with him probably being on the spectrum, your GP is being too quick to dismiss this.

I want to sob and cry and I feel like saying I want to die but I dont mean it at all. I just dont know how to go on. I wish I had a migraine right now as I normally do so I could take my pain killers that knock me out and put me to sleep for 12 hours. I need help. I need to help him. I want my friends to stop thinking he is spoiled or naughty and see he is my angel but is so fucking trying.

thank you all for your replies please keep posting to me if you can Iwill check back off and on all night in between dinner, bedtime etc I need to cling to something. I am crying now i am so tired I just want to relax a little while.

alfie thanks for waffling on I really appreciate it. Truly. I need it in fact I need someone to hear me and understand how much I am suffering and how confused I am.

silver thank you for the post about how to deal I will think of that tomorrow when I have a cooler head.

coco thank you for saying GP may be too quick to say its not ASD.

so sorry to be so bad at posting back I normally would say things in a nicer way please just understand I appreciate your support but am very worn out.

Are you in a position to go privately? I did this when we were -buggered about fed up with waiting for the NHS consultant appointment.

I too think it sounds like an autistic spectrum disorder, and think your GP perhaps hasn't much experience in this area (mine didn't either). I think they can spot classic autism quite easily, but struggle with the more high functioning children.

Good luck, keep posting, we've all been there so don't worry about long post.

If it helps at all, hereIdrawtheline, I have found that sometiems these extreme times of trying behaviours come for a reason - like developmental stages.

dd1 is 4.5 and ASD. She ahs had quite a few of these months, where everything seems to be going so horribly wrong.

When she was very small, i used to worry that it was a big regression happening, and that this would be it. All I could look forward to for the rest of my life.

In fact, I still do think a bit like that even now. Just last weekend I was sobbing to dh that I couldn't cope anymore. That it was all to much. That I didn't know how to help her, and that whatever I was doing didn't seem to be helping much.

However, she does come out the other side fo these low points.

And usually, in the meantime, there has been a developmental leap (dd1 is delayed developmentally, so the progress is easier to spot, i guess)

It might be that your ds is on the verge of a developmental step.

As with all children, it can be normal for other skills to take a back seat while they work out the new thing. This fact is very commonly discussed re: babies walking late, or tallking late, and that they are just concentrating on something else.

Imo, this is what happens with dd1. It's jsut that instead of doing it quietly, she does it blooming noisily

waiting for a dx is a nightmare, once you get it you hurt like Hell for a short while then start rebuilding reality with the bonus of knowledge.
That's worth everything.

'because he is so expressive, emotional, affectionate etc.
By fuckitgoblin on Thu 22-Jan-09 17:55:32 '

Hmm, ds3 does this a bit as well, he's always asking if we're OK and its because he can't read facial expressions or tone so has no other way of knowing. You think its concern but actually its not. Still nice though - he's my teddy bear.

What you need to do is go onto the national autistic society and search triad of impairments. That will give you far better info than playing match the symptom.

you poor thing, I hope you are getting some breaks from your DS, some time away from the demanding behaviour. Obviously we can't diagnose by internet, but a lot of what you describe does sound consistent with Aspergers. And even if your boy isn't on the spectrum, there's no harm at all in reading around the subject for how to deal with some of these problem behaviours. I also feel that GP is being a little quick to dismiss ASD - kids on the spectrum are all inviduals - some are very sociable and affectionate.

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

I'm going to keep this short and precise: GP is talking bollocks. My 7 year old DS is all of the above and was diagnosed with autism a couple of years ago. I could've written your post before then and probably several times since, but things are a lot better now.

I'd hazard a guess at high functioning autism or Asperger's syndrome.

Please do not feel guilty: you sound like you're doing all you possibly can for him - the only thing is not necessarily knowing what to do, which I can highly empathise with.

Glad you've been re-referred though. I'll put this thread on my watch list to see how you get on

I just left the kitchen. I went in there to try to talk to DH while he cooks dinner and DS was upset because my head was resting in my hand not flat on the table and he couldnt stop being upset about it so I had to leave the room as I could not listen to it anymore.

Now he is saying "what are you doing Daddy?" non stop while DH cooks dinner.

hereidrawtheline, you really don't have to try and convince anyone that the problem is not discipline. But it is totally natural to think that it is, somehow, something you have done. Especially until someone says "no, there is an issue here.." Because until that point you are just dangling, thinking why won't my child respond to things the way he/she should?

It does sound like he has some sensory issues, and certainly wants the world to revolve around him. Of course, that is normal to some extent, but if it is extreme, it causes a few problems.

My DD is 3.1 and has some sensory issues, as well as developmental delays, but is quite similar in some aspects to your DS in her behaviour.

We have had some things recommended by the Area Inclusion Coordinator for the Education Service, which have helped (as a result of her assessment, DD1 now gets full 1:1 at preschool).

-Motivator box: Try to work out what textures or colours, etc. he likes. Or just what makes him happy. Find objects in places like Hawkins Bizarre to put in a "special box". That box is kept separately from all his other toys, and out of his reach.

If he is having a meltdown or just a generally difficult spell, you can offer to get the box. Then he gets to play with the things in the box. But as soon as he loses interest or goes off, the box is put away again.

For our DD, her box is filled with things like 'noisy putty', a jelly caterpillar, a windmill, a rubiks cube, a gel ball, a stress ball, a water snake and a rigid bouncing ball with lots of different coloured bands that all link in together.

-Sometimes when children crave attention, any attention is good attention. Therefore, even when you are saying "No", it can be feeding that craving for attention. Avoid saying "No", and instead, find a positive instruction to give your child. So, for example, if he throws a toy brick, instead of saying "Don't throw bricks, DS", you should try to say something like:
"DS, I'd like you to put the bricks in the box now." This way, he is getting the attention for doing something positive, and you are achieving your goal, which is to stop him throwing bricks.

These things have given some improvement for DD.

Hang on in there! Whatever the cause of your DS's current behaviours, the key is that you don't blame yourself.

I think, also, that it is possible to be somewhere on the autistic spectrum even with emotional and expressive qualities.

Regardless, I hope you get some real practical help soon, because a diagnosis can take some time, and right now you need steps towards a solution

oh god the tears are here now. I am so tired and you have all been very kind & its all coming out. I feel so bereft and I dont know of what.

on the triad - he fits (I think) at least 4 of the symptoms but I am not sure. He makes jokes all the time. Do children with ASD make jokes? Please know I know I sound daft I seem to have lost all capacity to form sentences tonight.

yes, i think autistic children can joe.

dd1 does so all the time, within her limited language range.

Yes they can tell and understand jokes!! They're all different, so although they all have to fit the triad of impairments for diagnosis, some areas can be much stronger or weaker than others.

Are you able to tell us what area of the country you are in?

*joke

god, i can't type, sorry

He sounds similar to my ds1 who has Sensory Processing Disorder (formerly called Sinsory Integration Disorder). These children can also be quite OCD. They have so many similarities to high-functioning autistic children that their behaviors are frequently termed autistic-like. Of course, autism is a spectrum and I think that it is not out of order to consider that he may have a form of high-functioning autism or Asperger's. I would get a referral to an occupational therapist ASAP for some answers. In the meantime there are some good books such as the Out-of-Sync Child and Raising Your Spirited Child that may give you some answers. One good thing to keep in mind is that sensory issues are best tackled the younger the better iykwim. So pat yourself on the back that you are taking his behavior issues seriously. Applied Behavior Therapy has been advocated for children like this but DIR/Floortime therapy is a newer model that seems to work better. Vision therapy with an emphasis on sensory integration is also something to consider. As you say, these children have a tendency to be clumsy as they do not pay attention to their surroundings. They tend to ignore peripheral or ambient vision and this can be improved with therapy and/or yoked prism lenses.

HTH

jabber

Massive x-posts!

The other thing I wonder, is has anyone actually assessed your DS's language skills? HVs aren't normally specialised enough to give proper assessments on Speech and Language, and would refer to SALT.

I just wonder if your DS's language skills are working against him in the same way as a delay would. He may have a massive vocab and be very bright, but behind that is a very small 2.6 year old. He might be able to understand the words you speak, but he is unlikely have the sophistication of understanding that comes with such a wide vocab yet. That could be very confusing and frightening, because he doesn't quite 'get' what is going on around him, but people think he does.

Same with the facial expression and feelings thing. He may not actually be understanding the emotions, hence his pleas for reassurance.