Really really struggling with my ds.....

[pucca]

I don't really know where to start i am getting to the point where i can't cope with him and would really appreciate someones ear to bend or some advice.

Ds is 3.5, he has always had diffcult behaviour, but the past year has been pretty terrible. He displays OCD type tendencies, socks have to be a certain way, so do gloves, if buttons are undone it freak him out, he will break toys then over and over demand you fix them things like that.

He is hyper all day, never sits, very destructive, eats strange things, sudocrem, washing powder, perfume. He still smears and will eat his poo. (sorry i know tmi)

He is agressive, bites, kicks etc, his sleep is terrible, it takes an hour to get him asleep for him to wake up 2/3 times except he wanders and will go downstairs so i am always on edge. He is a danger to himself, and has no fear of anything. Last night for eg, he woke an hour after i finally got him asleep and was trying to kick me, punch me, was throwing things at me and screaming needless to say i tried to comfort him but he didn't want that and after he finally calmed down and went back to sleep i cried my heart out.

His speech is awful too, even i find it very hard to understand him, he has a hearing aid due to glue ear.

He was assessed back in June, but they said that he couldn't have autism or behavioural issue as his eye contact is good (although the hearing prob was not picked up on then so i think his eye contact had to be good due to poor hearing).

If he meets someone new or someone he hasn't seen for a while he will hide, or not look at them (pretend they not there).

He starts school in Sept, and the HT has been really good, she has filled a CAF form in, and organised a TAC meeting for 27th Jan as he does need help. He struggles in pre-school with 10 children so god help when he is in a class of 30. Atm i cannot even imagine him sitting to eat lunch nevermind anything else.

So i guess i am looking for someone to let off steam to, who can maybe sympathise as they have been through the same with their dc.

Thankyou.

Forgot to add preschool have said he has missed most of his early learning goals and milestones, and they cannot understand his speech either.

pucca - I'm not really the best person to answer this but I couldn't ignore your post.

You say he was assessed in June. Is he still under the care of the paeditrician? Surely he must be, even though at the moment there is no diagnosis. I think you need to go back and ask for more assessments/help. You surely can't be left to coast along like this.

Thanks Merle, i did speak to my H.V (who is really good a rare thing for H.V's in general!) and she said she would get him assessed again but to see if his behaviour was down to frustration due to the hearing prob so to see how he got on with that first, i don't think it all can be put down to that though, maybe some.

He has had one hearing aid for 2 weeks now, and his behaviour seems worse! if thats possible. I thought i would post on here as i just feel really alone, like no one understands, and my parents just say he is just "naughty" .

What kind of assessment was done in June? It doesn't sound very impressive or detailed if they simply said 'good eye contact therefore it cannot be autism'? Was he seen by a Paediatrician with expertise in child development? If not it sounds as if he should be. You can ask for this yourself from your GP. Tell her/him what you have written above and ask for an assessment of his development. It's really important to start asap (never mind the glue ear) because if he is going to get any support to manage in school you need to get his needs identified firs. In your place, given what you say his pre-school have said, I would also be thinking about a statement, and would be asking GP for speech therapy assessment. Things sound really hard for you (and for him) and it's really terrible that you are being left alone to deal with this.

My son has been assessed for years by a paediatrician (can spell it now have copied off likeacuppa). We've never been given a diagnosis but we go back to see her about every 8 months.

It is tough to have to keep pushing the professionals to do their job, when every day is so tough at home.

What is a TAC meeting?

I think you need another assessment meeting. He clearly needs speech and language from what you are saying and may need support in school if he isnt meeting milestones atm. Eye contact is only one part of ASD, my DD1 has fairly good eye contact if she knows you and is relaxed. Who did the assessment? Could you push for another ASD assessment.

The TAC sounds like a good idea, least your all be working towards same goals.

Can anyone help at all? Have you tried the local childrens centre for some help on managing behaviour? Even if he has a SN, your still in need to some support and advice to manage.

HTH

Thankyou for the replies.

He is seeing a speech and language therapist, he has been around 3/4 times but they say they can't do much with him atm because of his age and also at the last appointment he hid under my chair and wouldn't speak, managed to coax him a little but he would only whisper.

The assessments he had done in June, he saw a team, paediatrician, SALT, resident H.V, Ed Psych, but even though back then he displayed some strange behaviour he was quite friendly with them all, now would be a different story, he has changed alot since then.

A TAC meeting is a Team around the Child meeting, the head teacher has invited different people involved with ds to a meeting to get him additional help in school, she said it is easier to get things going while he is still in pre-school.

The other thing with ds, sometimes he can be strangely well behaved, for eg having tea, dd said she didn't feel well so i said leave your tea then and go and put your pj's on, ds got up went upstairs and got some pj's for her i was very .

It is like he is one extreme to the other, the good behaviour is very rare, but it is like he doesn't understand how to behave iykwim.

I also feel i have no control, the things that work with dd (which i very rarely have to do) like time out on the stairs, just does not work, nothing works with him. Its like he laughs/smiles at me if i tell him not to do something because of such a reason. Its very tiring day in day out.

For eg...getting ready for school one morning, running late, ds opens the front door and the dog runs off! i say why have you done that? that is naughty etc etc he just shrugs and smiles.

He understands everything you say to him, but his actions... he just doesn't seem to care. To sound awful, he seems to go out of his way to cause havoc.

Sorry i know i am going on...

Eating - sometimes he will sit well at the table and eat well, fork/spoon. Other times he will get up mess around, throw food, mix his drink in his food, he will throw drinks at dd.

It all depends on his mood.

Every child is an individual, therefore things that work with your DD may not work with your DS. You need different tactics, you need to experiment until you find something that does work - by working, I mean something that calms him down. It may be tickling followed by a hug. While you may not feel like hugging him due to how he has behaved, try to avoid punishments, as by the sounds of it you don't know what he does and doesn't understand. While he may appear to understand, his reactions are not as expected, so his brain may not be processing such that his actions are appropriate. It is very tiring, so try to get as much support as you can, from your partner, friends, relatives and even paid help if necessary.

Consistency and routines I find can help a lot. Routines help children know what's coming next. With some children I babysit for, I use PECS charts to show little routines, such as getting ready for bed (stairs, toilet, teeth, bed). Not sure PECS should be used that way exactly but the simple diagrams help convey the routine. You can use your own symbols, you don't really need special ones.

his sleep is terrible, it takes an hour to get him asleep

That's very good actually... if he does have say ASD. I don't sleep much at all and can take several hours to fall asleep. Children I care for are similar... it can take hours for them to fall asleep.

Tips: Don't stay with him. Make sure he has everything he may need for the night. Ideally have him sleep in a dark room (if he won't sleep in total darkness, use a very low wattage lamp. You need the darkness to try to get the melatonin level up (Melatonin is a hormone produced by the pineal gland, the organ which regulates the body's wake/sleep/wake cycle).
Door locks may be necessary if he is prone to waking and exploring the house. For example, a lock on access to the kitchen. Problem with locks though is that in the event of a fire it makes it harder to get out, so consider fire escape routes.
Don't permit him to kick and punch you. Tell him firmly that it is bedtime. Plonk him on his bed, leave the room and close the door. Then sit outside the door. It will take a long time (several weeks) and will involve quite a bit of putting him back into his room (as he will try to get out). Talk to him through the door if necessary to reassure him that you are there. The aim is to have him stay in his room during the hours you want him to sleep... don't expect him to sleep. But once he learns to stay in his room, then your evenings may get a bit easier.
Some parents find that putting a DVD on works, some find story tapes/CDs work. Experiment with various things... keeping in mind the objective is for your DS to stay in his room, not specifically going to sleep (as that may be very tricky to achieve, as he may survive on 4 to 5 hours sleep a night).

When you are feeling low, talk to someone... an understanding friend, relative, or a stranger on ParentLine 0808 800 2222 (that number is 24/7) and see who is around on Mumsnet in chat... or on here.

Good luck, it is hard, it is exhausting. I care for children like your DS on a temporary basis, so I'm lucky... don't think I could do it 24/7.

pucca, you should check out Sensory Processing Disorder. He seems to tick some of the boxes to me. An occupational therapist can diagnose and he is the perfect age to start therapy if he does indeed have SPD.

very sorry to hear you are not getting support and I agree that you need it.

Perhaps for now you should drop any attempts at time out and at explanations using "because". I say this because he may very well not understand either of those properly yet. My son is only just starting to grasp either of these at 4.4. Can he do choice questions yet? I have been able to use these with DS2 as a "discipline" tool for the last year or so. you say: "ds2, eat dinner nicely or no more dinner" - that kind of thing - then you follow through by removing the plate if he doesn't eat nicely. It's easier to understand than explanations.
So often we are using too much complex language with our kids.

If you find he doesn't understand choice questions either, then it will just go to show that he has needs that the professionals aren't yet meeting and that they must help you.

By the way, to be taken seriously by a professional, it always helps to emphasise the problems understanding language rather than the problems speaking.

Do keep posting as we are here for you. It sounds as though there are a few things going on with your little lad - hearing and possibly also sensory/processing wise. It must be very confusing and sometimes frightening for him. I agree with others than a very regular routine will probably be the best way to help him be calm. It will also help you to observe closely so you can identify trigger points

Sorry i am so late coming back to this thread.

Thanks so much for all the advice and tips, i will def give them all a try with him.

The TAC meeting is next week, so will come back and update then.

Thanks Starlight, the thing is, you start questioning it all yourself, especially when my parents and others are saying over and over again "he is just a normal naughty boy!".

It is frustrating as i have no support around me really at all, my parents never help out really and the other sdie? none existant, my parents do spend time with ds but i am always there, they never give me an hour and take him etc (i know i shouldn't expect this, but it would be so appreciated!). I actually said to my mum the other night, i challenge YOU to spend a day with him! when i got another, "you HAVE to cope, he is just a NORMAL boy".

I have played their game now (the professionals) i have given a little time of the hearing aid to correct things, it isn't that though! this TAC meeting is on Weds, and i will kick up a fuss.

The other issue i have is pre-school, i am going to question what EXACTLY are they doing with him! as he never comes out with paintings or anything, i think because of his hearing loss and other issues they just let him do what he wants. Would i be unreasonable to ask for a weekly record of what he has done?

Could you have a contact book? Ds is a lot older (and goes to sn school via transport so I do not see the school staff) but has a contact book which tells me little things like what he has done. This gives me a pointer into his world. I write in it too - for instance what we have done at the week ends or if ds has had a particularly difficult night. It was initially suggested by the salt team. Ds was late with fine motor skills so never had pictures either. He preferred other play!

'e was assessed back in June, but they said that he couldn't have autism or behavioural issue as his eye contact is good (although the hearing prob was not picked up on then so i think his eye contact had to be good due to poor hearing).

'

No no no that makesmeso annoyed when they trot that out

Eye contact isnot apart of the diagnostic criteria, it is a common phenomenono in ASD and no more.

For proper diagnostic criteria google ICD-10 autism and DSM IV autism. That's the official guides.

I am not a Paedmind, but I am a parent of 2 with asdas well as having completed the dx module of an MA in asd so think I am fairly up to speed.

DS3 has great eye contact but also fairly severe asd and won't ever have real independence.

So where would i gofromhere?

I wopuld be taking a twopronged approach.

You need to get back in the systemofcourse,maybe see a Paed whose knowledge is up to date. hereparents can request a tertiary diagnostic clinic foraspecialist Paed,maybe ask your GP? I know ours takes referrals.

AlsoI would consider something like BIBIC (google) or another similar therapy so you can get some actual help rather than just sit on a list.

Good luck, such a shame you have been so let down.

Am happy tolet you have my notes on communication etc in ASD if you sendmeyour email (and ahventforgoten you Starlight- if notes not on Uni board tomorrow I will scan my hard copy)

Its hard with no support and you do need some- your son i so much like a mix between my two (communiation ds3, behaviour ds1). But you will get there in the end,hurdles like this aresadly common in SN care.

And YY toacontact book-ds3's is written into his statement as he doesn't transfer info between settings.

Thanks Peachy, i will get finger happy on google

There are lots of other things ds does, i need to write it all down really.

He "gets" the going for a wee on the toilet but poo? = nightmare, he poos in his pants (and will quite happily sit in it) he poos on the floor and will put his hands in it, and wipe it on the walls etc. He never does a poo on the toilet.

He bites his clothes quite alot, he eats toilet paper (clean thankgod) and will lick everything, your face, your coat etc. Speech therapy said he has low muscle tone in his mouth. He loves his electric toothbrush and will spend all day putting it on his face if you let him. He wrecks the house daily, pulling the sofa cushions off, pushing the chairs around.

I am not sure if this is relevant but he loves milk, and will drink it by the gallon if you let him. He also retches very easily at smells he doesn't like, will go on about the smell if you put vinegar on your chips for eg. He also reacts oddly to some sounds, will pick them out, for eg a baby crying he gets upset and covers his ears with his hands. There is so much............

Peachy i would love to read your notes, email addy is [email protected]

He

Ignore the he on the end, lol.

Hmmm,the milk thing is oemtimesseen as a sign of a casein intolerance-lots ofpeoplefollowacasein and glutenfree diet to manage these hings,another google am afraid sorry (though BIBIC would work forthat also)

the rest- poo could be lots of things but does in part soundas if he is sensory seeking? I reckon an OT referral would be a great help. Again might be soemthing BIBIC can helpwith, but I found that whilst I couldnt ditch the sensory seeking behaviours I could modify by eg replacing it with equally- sensory stimulating non offensive stuff

So alicker migt find keeping arough pieve offabric close by (in a pocket or even attached to clothes) to stroke instead might help

Does sound as if,regardless of whether there is ASDin there,he has definite sensory issues and needs a profile done by an OT soon. IIRC Bogdashina is the expert on that but will check,available on amaszon i think

Well i have spoken to the H.V and she says to wait until the meeting next week, and write everything down.

So should i push for another paed appointment? or does ds need to see someone else? i am clue-less in all this.

Thanks again for all the help.

Peachy i got your email, thankyou will have a read through later on.

I would wait for meetforofficialstuff, themroe info the better

i'dalso give BIBIC a bell now though,get things moving there,theya re completely unrelated to NHS (cost £50 foradmin I am told, was thousands when we went years ago) so if you do want to follow that route its easiest IMEto have paperwork ready for Paed

I found your thread Pucca by searching for bifif uvula.

My son is 3 and has a bifid uvula. His speech is difficult to interprete and he does get very frustrated from time to time. When this happens his behaviour can be difficult, although on the face of it it is not as extreme as that which you are facing.

If you are still watching this thread, I'd be interested in finding out what your cleft team are proposing.

Hi Carrotfly...

They haven't really proposed anything to be honest, but we did go to ENT yesterday, they want to do a sleep study on ds as he has possible sleep apnea (stops breathing when asleep).

I am at a loss at the moment as to what is going on.

What is happening with your ds? have you seen anyone?

We recently went to our local hospital which conveniently houses the regions cleft palate team.

we were seen by a dentist, who thought all was 'normal' and then the cleft palate team, who decided there was no evidence of a submucous cleft. All good news I'm hoping. He doesnt have any issues with air escaping as far as anyone can tell or food escaping (the fact that he's a very fussy eater with a limited diet doesnt seem to concern them either). The consultant was not overly concerned and just dismissed it as his 'party trick' and not to worry about it. They want to review him again when he's 5.

I did push for a referral to a genetics testing service, I'm sure you've done the googling too ... the consultant didnt think this was necessary but as I wanted peace of mind, he agreed. We've got the initial appointment next week.

We then had a 6 weeks of so called 'intensive' therapy, where one SALT came to our home and played with him for half an hour. I cant say much came of that really, but you have to go with the flow sometimes dont you.

I just wish I could meet someone older with this condition who spoke then I would know what we might be facing. At the moment its just such a big unknown.