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.

hereidrawtheline my ds talks very well always as since 12m talked like a3year old now talks like hes 11ys when hes only 6 but hes imature for his age and the gap is getting bigger!

he is very affectionate but only with us and hes a very bright boy i hope you get sorted soon theres nothing worse than not knowing.

Hi HereIdrawTheLine!
Ive read your post and your replies - wow!

Your earlier post said you were from north essex?

(Hope i'm allowed to do this) - Email me [email protected]
I'm n.essex too - and I have a phone number for an excellent nursery (intergrating special needs) - with excellent staff, that may be able to talk to you over the phone or if your close enough pop in for a chat.

They have loads of (personal) experience.

bsac15 - hi! am emailing you You are allowed to give your email address here if you want to but next time write it like perry at the-skinners dot freeserve dot co dot uk - that is to protect your email account from getting a lot of unwanted spam. I think some spam websites scan other website like this looking for email addresses they can send to (nice people, huh?)

Try again!
I think my DH deleted it before I saw it!!!!
bsac15

I resent it! hope it gets to you!

I would say it absolutely sounds like textbook Aspergers (I have two children with ASD), coupled with Sensory Processing Disorder (my daughter has that but not my son).

Aspergers is like Autism, but without the speech delay, in fact one frequently sees advanced speech, like in your son.

Please check these links!

en.wikipedia.org/wiki/Asperger_syndrome

www.autism.org.uk/asperger

Hope that helps!
Christine

hereidrawtheline, we've had lots of problems with getting dressed, too. I only really notice now that ds2 is starting to dress/undress himself at age 2 how far behind on this that ds1 (age 5) really is. Like trace2 there are so many other things like reading and language that he is so far ahead on. It's still hard to comprehend sometimes iykwim. And yes, we go through the same things emotionally. He will look at me very calmly sometimes and say, "I don't like you/Daddy anymore and I wish you didn't live here." It used to make me cry but now I understand that he just doesn't really get what he is saying on the level that we do.

thank you christiner for the links especially the second one was helpful for me as further on down the page it really goes into descriptions that sound exactly like DS.

I have had a really hard day. thought about starting another thread to get support for it but think I shall stick with this one for now.

I have had a migraine. DS was an angel all day and so good although I am literally listing every move I make because he is constantly asking what I am doing literally all the time. I am not kidding. All the time. Every move I make. But other than that it wasnt too bad. Then DH came home early to help me since I had a migraine but he and DS were rubbing each other the wrong way and tbh DH just shouts at DS too much and doesnt give him enough support & compassion and I cant stand it. So I end up intervening because DH cant even get a drink for DS without it kicking off.

DH realised after me telling him off 5 times for being too shouty-like and then said he would do it all the softer gentler way and for me to go rest but to be honest by then I was so stressed and unhappy and alone feeling I didnt want to even bother trying to rest.

He is now putting DS to bed nicely and they are happy & reading. I dont want to paint him in a bad light he is a great Daddy and loves DS very very much but he is just so shit at being nice. He just shouts and generally behaves like a bully. Not in a horrible abusive way just in a domineering father way. When he is reminded he chills out but its his default setting.

I just feel so sad right now. DS hit me in the face 3 times because I wouldnt let him practise opening & closing a plastic food box that had olive oil in it but wanted to put some little toys in it instead for him. I knew he didnt want to hit me I knew he was upset and doesnt know how to react I felt worse for him than for me. But I still felt shit for me. I am just sad today.

am crying now I am so sad. I just dont know what to do. It isnt that DS is autistic its that its all so hard and I feel so alone. I think he is the most brilliant sparkling thing ever I would never regret how he was but getting through life is so hard right now.

sorry have not read all of thread, but if you can afford it try a few sessions of cranial osteopahty (£45ish)to see if helps temper.

I'm so sorry. It is so very hard sometimes. I would be lying if I said that I had never looked at ds1 and wished he were NT like ds2. But he's not and he is very special in his own way. I just have to keep reminding myself of that. Some days I don't do a very good job of it

FWIW, dh also has a problem of getting too brusque with ds1. Maybe it's partly the gender thing?

thanks improvingslowly, funny I tried that when he was a baby, he was prem and cried all the time. I must say it didnt help then but might be worth trying again.

jabber I am relieved you didnt say my DH was horrible I was worried posting he was too shouty at DS as I know what a great Dad he is. But he can be such an ass sometimes. He expects him to behave like a 10 year old let alone a 2 year old with ASD.

Hi i had the same sort of problems when my son was that age but he has now been diagnosed with global developmental delay, so this was the reason for the violence all the time, he constantly smacked me i was in tears all the time, not knowing where to turn, and feeling i was being bullied by my own son hurt so much, his school was doing a family nurturing course and asked if i would like to go, there were bout 7 of us, we were all in similar situations and what was said in that room stayed in that room, sometimes we had a cry, but mostly we laughed and worked together to change his behaviour with different strategies, check to see if any schools in the area are doing it, if not ask if they would consider it. And please as soon as u read this get back on the phone, use ur most stern voice (remember this is no longer about being nice and polite, this is ur child, make them listen) you tell them it was not ur fault he was not referred, and u are not prepared to wait, just because they mucked up, just keep going on, demand to speak to a manager, and do the same to them. In the end they will give in. We were told we would have to wait 15 weeks after a botched refferal, my hubby said hell no, picked up the phone and demanded he be seen that was monday, he was seen today, they hate u going on at them so they cave. Seriously try it, what do you have to lose. Hope it helps, if u wanna chat, let me know, take care for now x

Hi, sorry for butting in so late in the thread. Just wanted to send a hug.

Sounds very much like my own DS (8yrs). Yes, he's autistic, has obsessions and fits the triad of impairment perfectly (actually right on the middle of the spectrum) BUT what the books didn't tell me was that my son would have a brilliant sense of humour and even laugh at his own stumbling attempts, that he'd also have savant skills (sounds quite possibly yours too) which meant he'd be years ahead at reading because he's great at coding and have the most incredible memory for facts and figures as well as remembering happy times too. He has his little girlfriend, his classmates always love and protect him and the tougher boys will always defend him. His last birthday party - ALL of his classmates came and had a great time.

The reason I'm telling you this is because, I think you're probably fearing the future right now. ASD is not a hopeless disability, ASD children and adults are able to learn through adjusted routes and they are able to have a happy life. Just as importantly so are his family.

Now, I just need to figure out how to deal with ignorant strangers reactions and I'll be okay!

Hi again Tallulah your DS sounds lovely Tiredmum thank you very much for the encouragement.

DS has really been wearing me out. Yesterday it was his constant repetition and questioning. I do manage to stay patient most of the time but sometimes when you have said the same thing 10 times in a row for the 100th time that hour you just want to scream. It certainly isnt all bad though. He is so funny and bright and surprising. He sees the strangest things!!! Yesterday afternoon he was sitting at the table and I was cleaning the kitchen and literally the second he sat down he exclaimed "look mama the moon!" and I looked and if you craned your neck to the silliest angle and squinted you could just about see this little sliver of silver moon against a blue grey sky. Bizarre.

You are certainly right no one tells you what autistic truly means til you get there. The reason I dismissed it for such a long time was his humour, imagination etc. How wrong I was!

Now I have the horrible task of "convincing" our friends and family he is ASD. I hate the very idea of that. It has to be all about them and their bloody reserves and feelings and it isnt.

HIDTL: re the savant / clever cloggs bits...

The kids in y6 are in awe of my DS because he let them test him on his times tables last year (aged 6.5!!!) Being the sweeties that they are, they went straight to the nine times tables and couldn't trip him up once. Also, if they tell him when their birthday is, he'll tell them what day of the week it will be on OR he'll tell them what's on tv today.

Savant to one side.... ASD kids are so direct, honnest and dependable that they make the best friends ever. Mine only learned to try to tell lies recently - because he's been taught imaginative play.
First lie - we were so proud!

Oh and when he was the age of your DS, he didn't speak at all... Always hope, eh?

Thank you Tallulah. Really I need it DS is in a foul mood today and treating me so badly. I started another thread about it. Thank god he has days much better than this otherwise I would truly be a broken woman.

DS is though very sweet and loyal and kind. Sometimes that gets a bit buried beneath his anger and frustration.

I find it easier sometimes, during the meltdowns especially, to keep reminding myself that they still have a personality under or alongside all this and personality is very much a nurture thing in that you have a very big part to play in developing the better qualities.

We have just given our DS his own space with his favourite distractions in (tv, comics, books & music) and we ask him to wait in their to have a "meeting" (as he calls it) whenever he's not happy with us. If we leave him distracted for long enough then it usually difuses the stress and anger (for us too!).

My / our line which we repeat constantly is that my children only have to be TWO things... Be a tryer - never give up AND be happy - problems always blow over regardless of how you feel.

But dealing with other people is still very much a problem just now, especially my family, school and church, so I do know where you're coming from.
Another mantra - My life, my normal...

Tallulah you are a beacon of calm! Thank you. Really!! Thank you. I am going to steal your lines and use them myself!

Top tip... Read the post by Amber32002 "another day in the life of amber". I'm thinking of asking her to be the ASD guru / consultant for all of us, she's fantastic at helping me understand my ds.

How's your DP / DH doing? My DH is actually very cool about the whole thing but has yet to meet another dad and talk...

I read it it is very insightful! Wow. My DH is ok. He sort of sometimes seems a little in denial but usually not. I dont feel he totally understands the depth of the situation, not through any fault of his own its just that he works full time so isnt in it as much as I am. How old is your DS?

DS is just 8 and has some very lovely classmates that have been with him (important point this) since nursery - His normal is, in a way, their normal. They're used to his ways and accept them as they've never known him any other way. Now the teachers are another story, we've had the amazingly brilliant (luckily twice) and then we've had the Good, Bad and the Ugly. Right now we're dealing with the mis-informed.

DH took years to move from denial to face the full implications but now even tells his colleagues etc and we are very proud of the progress DS has made. Seems to be the equivallent of a triatholon whilst wearing custard filled wellies. .

If you want more detailed chat off-line, you are welcome to e-mail me at BenAndAndi at talk talk dot net.

Goodness he sounds the spit of ds1 who was refered at 2, we cancelled that, re-referred at 4 on school rewuest- APed said no issues: finally dx'd at 6 with AS / HFA.

Please dont blame yourself- Ir emember thinking we'd be better off if I were deawl if my apenting was so poor, now 6 years on I know it wasn't me at all.

thanks tallulah I will email you if that's ok! I love your custard wellies analogy!

peachy can you have HFA and AS? Or is it one or the other? Or are they the same? I am getting so many mixed views on this.

I am so grateful so many of you are saying things like "he is the spit of (DC)" because it just makes me feel like I havent imagined it all! I can say it to other parents of ASD children and they do not think I am an imposter.

Ah yes The Refrigerator Mother - One that I worried about for so long. I became overly conscious of people thinking this one to the point that poor DS had to put up with my "Whiskers on Kittens" approach til he was sick of the sweetness and had gotten to FOUR years old without EVER being told off! OMG all that time and not ONE telling off.