Can anyone please help? 6months until referal at psychologist for 3 year old and cant wait - rituals

[appreciateit]

Hi,
I feel so worried about my daughter I just dont know where else to turn.
I have been to parenting classes, health visitors, the doctors and now have an appointment but it is at least 6 months away.

I feel so alone and worried about the situation I just dont know what the matter with her is.

She has always been a screamer bless her and each stage everyone says she will grow out of it, but so far no good.

She has two parts I suppose, the one which is when I say no to something = tantrum and I can kind of understand these as toddlers want their own way but the other is the ritual/ obsessions.

We lead our lives walking on egg shells incase she flips.

An example - she has got into a habit of stroking my foot to wake me up in the morning. However if I happen to be awake already she goes mad and wont start the day until i am back in bed pretending to be asleep.

If she starts something and something goes 'wrong' she has to go all the way back to the beginning.

She get so upset, distressed, angry. It goes on for ages.

I have tried everything.

Help?

bumping for you

Do you/your HV/your doctor think it might be autism/aspergers?

It sounds very much like it (with all the disclaimers that go along with amateur Internet diagnosis..)

My son is like this in certain things. If he wakes up, I must be in bed. When he goes downstairs in the morning, the TV must be off so he can switch it on and curtains must be closed so he can open them. If these things don't happen, all hell breaks loose. I put it down to him needing routine. He has speech problems as well though not sure if that's anything to do with it.

Toddlers with no additional needs can also be very routine obsessed (one of mine used to kick off massively if we went a different way to the shop; if I had the cheek to open the gate before him; if I put his t-shirt on before his trousers). This was because he was a little sod strong willed child who wanted to be the boss. Tantrums / screamers also very common. Another one of mine was obsessed with certain objects, e.g. he would play with a door over and over again at toddler group whilst the others all played with toys. A lot of these behaviours are grown out of, some before 3, some before 4. How old is your little girl now, is she closer to 3 or 4?

Does she show any other signs of something else going on? Does she eat and sleep ok? Does she speak well enough? Does she point at things and show you stuff? Does she respond to questions you ask her?

What do you do when she kicks off?

Thanks, I am finding it so hard and worry about aspergers too. She doesnt show any other signs of anything, eats and sleeps ok but has incredible amounts of energy, she just keeps going and going lol.
She does respond to things and is very bright, has a great sense of humourand likes to joke and play the fool - she does us shows etc,very cute.

She is 3 and a half. Before she could talk she would just scream and scream so people said when she can talk she will grow out of it and then she started talking at 2 and it hasnt changed, just that she can verbalise it.

This morning i was in her bed and she was in mine as she and my son are ill so i was up with my baby. She went mad for 4o mins when I said good morning.

I have tried everything, ignoring her, trying to hug her. She just screams and screams. She is so angry she cant calm down and then she always wants me to go back to the beginning so this morning when i said to her I am going downstairs let me know when you want me when she eventually calmed down she wanted me to go back to the start and get into her bed.

If she does something 'wrong' in her eyes she has to start again ;(

appreciateit - have you discussed the 'a word' with the health care professionals? (although as combineharvester says it might just be something she will grow out of).

I would consider going back to the doctors and discussing it specifically (if you haven't already) and ask if there is any other behavioral support, specialist health visitors etc.. you could access earlier, because you can't wait 6 months without help, you are at the end of your tether etc...

The experience of a couple of good friends is that Drs and HVs (as well as teachers) (who can't formally make autism/aspergers diagnosis) are reluctant to mention it first to parents even if it is what they suspect, in case the parent does not want to hear it.

I have said it to a few people including her teachers at pre school and they have said they didnt think it was but again they havent really seen this behaviour as yet. I have phoned and phoned different people and just dont seem to get anywhere...
Did have an assessment with a pead too who ruled out autism and adhd but that was on one meeting...

appreciateit I am sorry you are going through this. I have some experience similar to your with my eldest DD. She has alwys been, for want of better words, highly strung and challenging. She is eight now and continues to kick off for no apparent reason, she reacts badly to sudden changes in routine, she is not affectionate and when she was five she started with the ritual...
She would place both palms of her hands down on the floor at the same time, wherever she was, for no reason. It was bizarre, we were constantly tripping over her! When we drew attention to the fact that we noticed she was doing it, she then changed it to a more subtle pressing of both palms on surfaces. She still does this, and I figure that its not interrupting her life, so i just let her get on with it.
We did go to the GP when she started talking about killing herself, and scalding herself deliberatley, who reluctantly referred her to CAMH. The came to the house chatted to us, and referred us onto parenting course, they never spoke or even saw dd.
We have spoken to the school, and asked how she is there, and there are no major "out of the ordinary" issues. I suspect she has a mild form of autism, but without asking outright, no-one else seems concerned. So we just continue to "manage" her, and take the good days with the bad.
I would say if your dd is functioning at an acceptable level outside of the house (i.e at nursery) just ride it out, some kids are just a bit different.

I feel very depressed at the thought of this going on much longer and am on anti depressants myself ;(
hOPE YOU DO FIND SOME HELP TOO. eXCUSE TYPING,GOT MY baby on my lap

I

I dont believe it is anxiety. I am again sat here in tears and me and my husband have fallen out again. She would not go to bed again tonight. She is so persistant in everything she does, she will not let it go.
I feel pushed all the time and as if i am going to crack. I am so miserable.

She has just screamed and screamed for nearly two hours ;(

Hi

I could be reading about my son reading this.

He is 4 now and has been challenging from the start.

He can't understand that we can't go back to 'fix' things and when a melt down happens it is stratospheric.

If I let him do something once, like get in my bed one night, he will be back the next night and the night after that and it will be a massive fight to break the 'habit'. He has never slept well and wakes habitually.

He has more energy than any of his friends. He runs, not walks; shouts, not talks. And all day the poor boy gets told 'no'. He chews holes in his sleeves and his fingers are red from biting.

I used to have to drive a particular way to nursery and pay the consequences should I go theshorteer way, that did pass after 6 months or so

He is utterly exhausting and puts a huge amount of pressure on my relationship with his father. Often, we are a very unhappy and tired household and that is just awful and heartbreaking. It can be so hard to see a way out.

I have questioned myself and my parenting ability frequently but I think at the end of the day some children are just more 'spirited'!

He too is smart, funny, interested and I'm sure will excel in the right school and sports. He can count to 200, knows all the planets in the solar system, in order, and could probably tell you most of the scores from the rugby world cup. He loves to learn and know things and is desperate to be right and better. Everything is a competition.

Sorry, rambling but just so you know...you are not alone!

Thinking about seeing the HV too but another friend of mine has a lively wee boy who loves to kick off and bite people and they just said some kids are like that.

Am I fooling myself?

PS Have you seen the book 'rasing your spirited child'???

Yes they sound very similar!
I am exhausted. Another eventful night last night. She always re enacts the tantrum in her sleep if she has one at bedtime so we got horrendous screaming at 1am, waking the baby too. She is as if she is possessed in the night and we cant help her.
I then argue with my husband. Its awful.

Read every book under the sun ....

Sounds like she is having night terrors....its when she half wakes from sleep but is not aware of anything and will scream but then settle back to sleep as if nothing has happened and won't remember it in morning, there is no point arguing with your husband over it as that wont help anyone although I know its hard.

Google 'night terrors'..there is lots of info out there (very common and most kids grow out of them)

I have just read through the posts and the one thing that strikes me is that you say that her teachers at pre school haven't seen this behaviour yet. Is it only happening at home? It would be fairly unusual for her not to have come up against anything or for everything always to have gone her way so far at nursery.

Her behaviour does seem a bit ott and I do think you are right to seek to have her assessed and get some help in the best way to manage her behaviour, but I do wonder if she is just a very sensitive (for want of a better word) child.

My niece was very like this - almost from birth and we were fairly sure there was something wrong with her but, although still "sensitive", she has outgrown all strange behaviour. In fact it is my easy going, laid back, placid baby who has ADHD.

Sorry, me again. You need to sit down with your husband and talk about how you both feel and what you both feel you need to do to help her. You have to be in this together.

Your DD sounds very similar to a friend's DD. She has recently been diagnosed with OCD (Obsessional Compulsive Disorder). I had no idea little kids could 'get' it. She was referred first for Aspergers/high functioning autism but didn't 'fit' a dx.
They are going through a form of CBT (modified as she is so young) to deal with anxiety levels.

I think there is something going on hence the referal but just cant work out what and so we just cant seem to help her which is heartbreaking.
Me and my husband are in it together but it is very difficult and very draining, you just dont know what to do and try different tactics.

As far as nursery goes she doesnt go that much although i am taking her more now to see what happens. She does like everything to go her way and they have seen her almost crack when they have said no but they havent really pushed it.

Sorry for being ignorant but how can the placid one have adhd, i thought they had to be hyper? I am asking as my daughter is on the go all the time and i have wondered this also...

He was always such a placid good natured baby. Slept really well never any bother. As he got older he had strange meltdowns at the slightest thing and had mad hyperactive spells but mostly is unable to concentrate on anything that doesn't interest him. He doesn't need much sleep but remains generally a very placid natured boy.

Hi - sorry not much in the way of advice but just wanted to offer my sympathies for your situation. I'm following this thread with interest, because I see a few similarities with my DS (3.2 yrs).

• Ritualistic tendencies. e.g. his toy cars have to be in exactly the right place, going in the right direction etc. If I'm playing with him, I usually wait for him to tell me exactly where to drive a car, lest I get it "wrong" and he explodes in a rage.

• Often very angry if he comes back into the living room and notices something has been moved while he was out e.g. if I've re-arranged something for cleaning or tidying.

• For many of his tantrums he is genuinely distressed (tears, coughing, etc). I find these meltdowns much harder to deal with as I'm not sure what the best approach is. Punishment doesn't seem appropriate; my instincts tell me he needs comfort instead, but he doesn't accept it. I usually end up having to sit with him quietly (talking or reasoning with him makes it worse) and wait until he gets it out of his system.

I could go on, but I don't want to thread hi-jack!

I have noticed that DS is definitely worse when he is over-tired or not well. Do you find the same with your DD? Does anything in particular make her meltdowns more likely? Some days DS can be perfectly charming. Last week for example was a nightmare, but DS had a bad cold and wasn't sleeping well. So far this week he's been really good.

Another similarity come to think of it, is that DS also seems to save his special meltdowns for the home and me or DH. Nothing noticed at pre-school so far (but he also only goes 2 mornings a week until Jan). Usually always on his best behaviour with visitors or when out and about, which I'm very thankful for! But no idea what that means...?

Yes yes yes, very similar! She is worse when me and my husband are together too. Hates us talking, not having the centre of attention.

Yes she is worse if tired.

I know all toddlers have tantrums etc but they are so extreme, so wild. So looks possessed and scares me its just awful but on the flip side is such a charming, funny and delightful girl.

She doesnt want me when she kicks off, does not want to be touched, wants to calm down but screams cannot handle her anger.

She can be so rude and cheeky though and will do silly things like try and wake the baby just for fun.

p.s she will also zone me out and not listen to me or look vacant. When i do say something like please dont shout she just carries on shouting i.e shouts to talk to me in the kitchen.
I just feel she doesnt listen to me at all but again suspect thats just more normal toddler behaviour than the other things i find more worrying.

Oh yes, DS gets very cross with people laughing or talking if it's not at or with him (and god forbid either of us make the baby laugh). Not too worried about this since myself either since it sounds like pretty typical I-must-be-centre-of-attention threenager behaviour.

It's difficult isn't it? A lot of DS's behaviour I could just write off as typical, but how many behaviour boxes need to be ticked before you start to suspect something else might be behind it?

I've always been conscious of Aspergers (my dad has no dx, but shows some classic symptoms in adults), but then I worry that I'm projecting issues or blowing things out of proportion in my mind because we've had a bad day... I can completely relate to the stepping on egg shells feeling, especially when DS is poorly. On a bad day it can start as soon as he wakes up and go on and off errupting throughout the day right up until bedtime - often I feel like giving up because I can't do anything right by him at all. Yet take him out to the park and he's all "please" and "thank you", chatting away delightfully to other mums and dads, waiting patiently for his turn on the slide...

I can also relate to the "wild" description. I would agree that DS also seems to struggle with handling his emotions. It's the anger response that I see during one of his inconsolable distress meltdowns that often concerns me as well. DS never hits, bites, kicks or shows any tendency to violence except during one of these meltdowns, where he will scream "I NEED to hit Mummy/Daddy" or "I have to THROW HARD things". These sort of outbursts are reserved (so far) only for me and DH. He's never been violent to another kid, even if pushed, pinched himself he doesn't respond (just looks bemused by it).

Maybe this is simply emotional immaturity on their part? In some ways DS is ahead developmentally (his memory is bizarrely good), but socially I think he is lagging behind a bit. I do also get a little tired of hearing "he'll grow out of it" (thanks mum), but then again I do feel that, at age 3, he's still got a lot of time left to mature and to learn to cope with "big feelings". I expect he will always have a tendency to stress out easily, I think it's just his nature (he was definitely a high needs baby from birth), but as his rationalisation abilities get better, hopefully over time he'll be able to override more of these meltdowns with some reasoning. Mum keeps citing 4 as some magical age when my behaviour improved, so we'll see...

Sorry, I've just brain-dumped and rambled on too long, after I said I didn't want to hijack! I've had all this on my mind for some time, can you tell??