Please tell me what is wrong with my son (or me.....)

[smugtandemfeeder]

Lets get the obvious out of the way first. Yes DS is two and a half, yes he has a new baby sister, yes I am tired, yes I play with him, yes I know all two year olds are difficult. No I dont have post natal depression. Sorry for being defensive, I know you are all lovely on here, its just the rest of the world who seem insistant on making me feel like this is normal/I am a bad mum and I know its not and im not.

DS has been a TERRIBLE sleeper since birth. He now wakes up at 10pm and we can settle him. But from 3 or 4am onwards he is awake for the day. That is the best we can manage and that is with DH sleeping in bed with him every night. No amount of consistent discipline or sleep methods have ever had any effect what so ever. He does not sleep during the day and really hasnt done since birth.

He has always taken everything to a completely different level than friends children of the same age. Physically he is slightly crazy, jumps off tables, climbs the walls. swings upside down on door handles. He is never still. Not even in his sleep.

He has terrible tantrums, mostly from frustration, or because he cannot sit still when I need him to. We have reached a stage where we cannot go out to the shops or any sort of restaurant as it is totally pointless. He just wants to run off and do what he wants to do - totally understandable for a 2.6 year olds but we just cant do anything. Things we expect to be fun and nice like going to the park or for a walk always seem to end up being a nightmare.

He is sociable so I cant imagine he has any straight forward autism. DH has just done one of those online autism tests on himself and comes up with a very high score so its made me realise that there might be some genetic thing going on.

He plays with the following - pretend hoovers, pretend chainsaws, pretend tea set, trains, anything with wheels. All of the above involve making a kind of hoover noise incessantly throughout the day. He repeats things over and over, little phrases he picks up off the tv, things he hears us saying. repeats repeats repeats.

He is jealous of the new baby but there has always always been something more going on.

He is apparently an angel at the childminders and for my mother in law which just serves to make me feel like a bad mother. HV sent us on the parenting course which also made me feel like she thought I was a bad mother. I am not. I read parenting books obsessively and consistently apply all the things you are supposed to do. Being strict escalates things and I now know that unless I want to ruin the whole day it is better ignore as much as possible rather than cause the rolling on the floor uncontrollable screaming which lasts forever. Friends then tell me I am too soft on him.

Over the last week I have spent most of my day screaming in his face, trying not to scream in his face, trying not to smack him.

We have had a mental health person for his sleep for the past two years but she has just signed us off as normal. I dont feel FUCKING normal. I have been crying since 4am!

What on earth could be wrong. My mental health expert lady went NUTS when I suggested he might have ADHD and said she had seen lots of boys with ADHD and he defo did not have it and that he was capable of playing nicely with toys blah blah blah

WITS END - please help!

Smug your ds is who your ds is... Nothing will change dx or not.. He'll still be your boy.

All a dx does is give you an idea of strengths as well as weaknesses.. And is a signpost for the extra help he'll need.
But we all need help and can't be good at everything.
Family not believing= who cares!
Tantrums + never going out = stratagies and Being inventive :)

but there are loads of positives I promise

Thanks everyone, DH took DS away for the night so I could rest and get some sleep. Spent a lot of time googling and thinking about things. I think DS is lucky as he seems to be just like his dad so at least he has someone who understands him.

Spent a lot of time last night feeling really angry with our health visitor who should have listened to me 18 months ago. I know we dont have a dx yet but I feel so strongly that he does have something like aspergers and sensory disorders.

DH dropped autism into a conversation with his grandma and she spent the rest of the day saying "look at him, hes playing nicely, theres nothing wrong with him" his mother rang to say "have you tried putting him into a strict bedtime routine..... Ummmm yes, 2 years ago and still trying love!!!!

I'm trying to think about all the things DH moans about like clutter in the house and fix those things to see if it helps.

Have read lots of things on here and am going to go straight back to the doctors and ask for melatonin to see if he sleeps better. DH was up with him at 3.30 am AGAIN this morning.

Have also made a weighted belt out of some lightwiegh womens wrist weights which he seems excited by. Shhhhhhhhhhhh dont tell DBennett. I know DS hasnt had a diagnosis but I was so excited to read about them I wanted to try. And it only cost me 87p from Tesco!!

I have just done that test for ds and he scored 182, he is 4. I would write down your worries and take them to your GP.

Hmm... did the test for DS2 and got a 156. He is also 4.

We made a running list over a couple weeks of any behaviour that we thought was odd or unusual in any way. It's typed and on two pages now, and includes previous behaviours that moved into other behaviours. We always bring a file with us into appointments, and keep a spare copy of the current list ( in case we've added anything to it, although it's fairly complete for the moment - unless he starts doing something new). I also tend to keep a notebook in with the paperwork so that I can jot questions down between appointments so I don't forget to ask them while we're there.

A lot of the behaviours listed are quite familiar, as DS2 does so many of them. But I have to agree with others who have stated that regardless of how your viewpoint changes as you gain a diagnosis and some answers, we always take time to remind ourselves that he is still the same little boy he's always been - that hasn't changed. Even though it seems like everything has been tipped upside down.. ..

Thanks everyone. Have had a bad couple of days, made worse by the internet not working and due to all friends and family I have tried to talk to telling me I am wrong or giving me simplistic advice about getting tougher with DS or how to solve his sleep problems.

GP says melatonin is on a red list of things she cant prescribe. Only person DS has been referred to can prescribe it. She has prescribed me fenigans which I really dont think I want to give him. Perhaps someone can reassure me.

Family winding me up telling me I am WRONG. He just needs more attention. Please tell me how to grow that thicker skin. Does this just come with time?

Appointment for referral is on Monday. Any advice about what will happen, what I need to fight for? What I need to prepare in advance?

If family are saying he needs more attention, perhaps that could be seen as an offer to provide it?

Friends who aren't supportive don't sounds like true friends to me (although, not having been in your situation, it's not up to me to judge...)

It sounds from your posts that you are determined to get the best for your DS, so keep that in mind. You are his mummy and you know best :)

purple, yes people are offering to help us more and I am starting to accept it. I just that sometimes its harder to have people stay with us, something i'll have to get over.

Can anyone tell me what tests will be done at his appointment. It is a private appointment as we are lucky enough to have free medical insurance which will cover diagnosis plus three months treatment. Not sure what three months treatment would involve.

Utterly exhausted now from thinking about it. So so tired.

remember that a diagnosis will not change the behavior. labelling the behavior will not make it 'real' - it's already real.

I'll give you fair warning, nobody's going to listen to you until he's about 4 though.

Thats depressing! I want the diagnosis for two reasons.

1. So that family can focus their negativity on the psychiatrist rather than me. Part of me was hoping they would be more likely to believe the doctor over our wishy washy moaning.

2. So that I can start to help him by reading and understanding what is wrong. I can do that now but i'd like a professional opinion as to what is wrong so that I am looking at the right thing.

I am a walking self help book. I am obsessed with them and always have been. I'll enjoy reading about it. Enjoy making his life less painful.

I'm just totally terrified they will say nothing is wrong. I'll have nowhere to go.

Hi Sumg
I've just read through your posting and was in a similar position with my DD who is now nearly 11. It bought back lots of memories of being constantly exhausted with her inability to actually play a game for more than two mins. Although I went to the HV at three and she did reer me on to CAF there was no real diagnosis till he was 7 even though she was seen regularly by various professionals.

I think the fact that your husband seems to be on the ASD spectrum is almost confirmation.

My DD was wonderful for other people and nursery as she was compliant with them. She also seemed to go into her own world because of the sensory overload so was seen as well behaved. She moved from daycare, to nursery and it was only picked up in a pre school nursery that there were problems. So it's easy for your child to be seen as perfect by others.

I didn't know any different and just thought it was me. But I was so depressed. It was only when my next daughter NT was born that I knew how things should be. She was clingy with me, my ASD daughter never had been and I just thought this was because she was sociable. No real speech delay early on as she new the word for everything. But she couldn't make real sentences or engage in play with other children.

You may not get a diagnosis for quite a while as some doctors are reluctant to diagnose boarderline children, (such as my daughter), which is a good thing believe it or not as you don't want to be labelled too early but want to know that your worries are being treated seriously.

Just for your information find out about early bird courses through National Autistic society, as this is the first step for children who have a diagnosis. Also this works really well for very young children.

Thanks Daisysue2. Do you think a private referral will have a greater chance of success than an nhs one? Or does it not make a difference?

Have been watching DS more closely recently. He cannot stop moving, he def does spinning and weird hand movements. Hands are always moving. Constant twisting, wriggling, never ever still. Even wriggles when asleep.

His roleplay isnt normal. Although he does do roleplay to some extent he only does it in a limited way. Ie he doesnt add any imagination to the role play. He repeats the element of roleplay which he gets involved with over and over. Eg pretending to go to work then coming back in the room to say he is back from work.

None of it is imagination, its just things he has learnt from me. He makes a cup of tea but doesnt add milk, sugar, doesnt really play tea parties or anything, doesnt want you to sit with him to play with it he just pours water in a cup and gives it to you then does it again and again. He is 2 and 7 months so I think you would expect a bit more.

I think it is important to try and get a diagnosis quickly if possible only because the medical insurance will only cover me for a short period and we would then have to start down the more complicated slow NHS process. Perhaps i'm wrong. Correct me if I am.

Sounds as if you have convinced yourself already. I think you now need to find out one way or another.

It sounds as if you can go privately so do but don't stop going down the NHS route as this is where you will carry on once you get the diagnoses. Our Paed didn't do private so we had to wait for the eventual refferal to CAMHS on the NHS.

Having a diagnosis (private or NHS it doesn't matter) will mean that you can get a place on the Early Bird course. This is generally the first step most people take as they have loads of good advice, tips and support of other parents going through similar things.

Good luck.

Laughing so much at DH on phone to MIL explaining why our day is so hard. I can just feel the "he just needs more attention" and "he's just jealous", "you were just the same" and "have you tried" coming down the phone. I know she means well but its a steep learning curve for me in controlling my emotions.

Trying to look up early bird courses.

google NAS Early Bird

We had our first meeting with the psychiatrist today. I feel hugely frustrated and angry and I dont know why. I really hoped that by the end of the hour and a half that he would have some idea of what was wrong or at least tell us that we are obviously having a hard time and that it isnt our fault. That more attention isnt what is required.

He said he needs to see us again without our son to talk more. He said ADHD is a possibility but that he doesnt think it is aspergers. Or that if he does have it, its mild. DS even did a spontaneous display of toe walking in front of him.

Everything I read about Aspergers fits with my DH and his dad and my DS. He doesnt have some of the classic extreme features but it just doesnt feel like ADHD.

Why do I feel so angry and frustrated. Perhaps I expected too much. I just feel rubbish and impatient and angry.

Everything DS and DD do this afternoon is annoying me, I just cant calm myself down.

Oh poor smug. Horrid when you think you'll get an answer & don't. And diagnosis seems to take an age. Did he give you questionnaires for home and preschool? If not, post again and I'll try to link some.

Fwiw, at our first appt I was cross with the paed for suspecting an asd when I suspected ADHD (fast forward 2 years... probably has both). I think my anger was grief, it felt like I'd been denied a simple 'get a diagnosis & get on with it' solution to the problem.

Asperger's and ADHD tend to need similar parenting management strategies: to start with they are like those everyone else uses to GCSE standard but at post- PhD level! So if he offers you a referral-only course it might be worth saying yes. It doesn't remove the dc's difficulties but can help a few daily niggles

Thank you, yes it does feel like grief, and my husband had to leave early to go back to work so I had to carry DS out of the appointment screaming, trying to push pram with DD in. Then when I got home I was all alone with two screaming tiny people and a bloody annoying cat. It made all the little things seem huge. I spent the afternoon screaming at DS again, every time he attacked the cat, jumped on the baby. I felt like screaming. They are both asleep now, so I feel a bit better but early bed time means no chance of a good nights sleep. DH and I will argue at 4am about who's turn it is to get up. I want a diagnosis of something before I can think about parenting type courses, otherwise no one has said its not my fault.

In terms of developmental delay I dont really know. We notice that his play is very limited. If we go to special needs play centre, DS just uses the ride on toys all day. At home his play is limited.

When people address him directly he motions to hit them and goes silent and stares at them or the floor.

At home he cannot share.

He has no empathy (childminder has noticed this a lot - if he has hurt the other children or if someone is hurt, he doesnt seem able to answer questions about what we would do if someone was hurt, eg give them a plaster, give them a hug, they would be sad. He just gives an un-intelligible response.

At home he cannot tell when he is hungry just explodes with a meltdown when it is too late.

As with PDA however he can do most things but at home he wont.

At childminder he is often too anxious to do things, he distracts childminder a lot to get out of demands, he has exploded a lot when I collect him, eg thrown massive box of lego at me, hit me, kicked me when I collect him. CM has noticed very limited play but lets him get on with it. (I have asked her to try to take DS out of comfort zone) CM has realised that she makes massive adjustments for DS when she meets other people she warns them that DS may not speak to them or may get anxious. No empathy if he hurts others. Anxious due to potty training CM has been pursuing. DS has taken over a year to engage with CMs DS who is the same age and he still preferrs CMs adult company. however he is ultra polite and helpful and does not have the meltdowns we have at home.

At preschool its too early to say. So far they said "I wish they were all like him" as he has been ultra helpful and polite and spent whole day with adult key worker.

Oh I dont know.

wrong thread

smug real funny! just read the whole of the begining of the thread only for you to have said that!!!!!!!!!!!!!!!!!

You said you settle him at 10. What time does he go to sleep? I would keep him awake til 10 if you can so that he sleeps later. Maybe do 15 minute extensions--if he currently goes down at 7, keep him up til 7:15, next night 7:30.