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just popping in to say hi - we are still here still under evaluation and I am thoroughly confused

(19 Posts)
hereidrawtheline Sun 14-Jun-09 11:51:45

hi everyone! Havent been here for ages, mainly because I felt I had very little to contribute. We are still waiting for DS to get a DX if at all. We went through a lovely long time where he seemed "normal" and everything was just lovely and great with only a few exceptions that it was easy to shrug off as peculiarities. Then we went on holiday (last Friday) and DS went a bit off the deep end. Hitting, headbutting (new) and he hasnt hit in such a long time. Shouting, screaming, crying, tantrums that were so huge parents of other young children stopped and stared and looked as if we were totally repulsive.

He is supposed to be seen by CAHMS 25th of June and I have emailed his specialist to update her. The HV (not specialist - she wasnt available - our regular one) observed him at preschool and I finally got the report after 6 weeks and me chasing it up - it was supposed to be sent when it was sent to the specialist. The report just says paragraph after paragraph that he did this well and that well and this normally etc then at the end "I did observe him walking on tip toes throughout the session" that was the only "odd" thing she noticed.

His speech is still very hard to understand. He talks literally non stop and knows millions of words but he has some sort of speech impairment in that most consonants and letter combinations are missed or he only has one sound for all of them. And he still wants things repeated constantly. His temper is definitely a force to be reckoned with and we are at times scared of confrontations though we are trying to get over it. Its more for his sake. Last week he actually had a fist and was repeatedly punching me - properly - in the face and neck and honestly my heart broke for him. I am very sure how much he loves me and I know this does not make him happy.

So thats a little update! How are all of you?

hereidrawtheline Sun 14-Jun-09 11:59:14

I wanted to add some other things he is doing to get your thoughts. He still just shoves food in his mouth with his hands and it gets everywhere. Is this normal at almost 3? And his imagination is really really extraordinary and vivid. He is lying though, he will start crying and say "you hit me, dont hit me again" and "dont push me" etc when nothing remotely like that happened - it is mind boggling. But he is very convincing and he is saying it loud enough people have heard. He imitates everyone around him very well.

TotalChaos Sun 14-Jun-09 17:41:15

with the don't push me stuff - have you touched him in anyway - I just mean could he be hypersensitive to light touch, so kicking off, rather than outright lying?

if his speech is so unclear look for SALT referral too. problems with speech sounds could tie up with problems with eating neatly etc - if there was some sort of dyspraxia say - but equally at coming up to 3 some of this may be quite normal, it's hard to say.

try and get some video footage of tantrums etc if you feel his behaviour is being overlooked.

I'ld be a bit unimpressed by HV doing an observation tbh - as HV don't have the education/group setting expertise IMO. there should be someone from LEA/early years/inclusion that can be arranged to come in for this sort of observation.

AttilaTheMeerkat Sun 14-Jun-09 17:51:49

HereIdrawtheline,

Re your second paragraph what sort of specialist are you referring to?.

What does your gut feeling tell you?.

Has your son been referred as yet to a SALT?. It is possible that his temper and lack of clear speech could be linked; he seems very frustrated.

I would try and get a developmental paediatrician as well to see your son rather than just CAMHS.

I would also feel very unimpressed about the HV observing; these people are not expert enough to make any such judgments.

bubblagirl Sun 14-Jun-09 18:05:18

welcome back hereidrawtheline i wandered where you had gone to

regarding the food this can be normal for 3 yr old he may have problems with fine motor skills and need to use his hands my ds is 4 and although has learnt to use fork is still happier with his hands

my ds also has atypical speech uses g and k as replacement to all sounds definitely seek out SALT referral to that it has been a yr and we have only mastered some words beginning with b

we had salt who observed in pre school and specialist pre school teacher

does he need visual time table at all so you can reward good behaviour with activity of his choice it can be seen to be taken away and put back for good behaviour also so he knows whats happening now and next

also when his upset could you just put him somewhere safe to calm down i found with my ds at that age his speech made him very frustrated and i needed to leave him alone to calm rather than me try and talk him down or cuddle him when he calmed down he would get a reward for being good

also choices work a lot less words you do this or this you play nice or i take it away, you hit you go to your room or stay and play nice

but i did find by 3.6 he was able to manage himself better speech came along and although atypical we could work out much more of what was said also understanding of language improved which helped with the choices and understanding the consequences

the minute my ds hit out was time for him to be alone so put him in safe area and let him calm down

sorry its hard i did find from 3-3.6 was hardest time for me but it has thank goodness got much better although at 4 his found the art of answering me back lol

<<<<sending big hugs strong drink and lots of support>>>>

bubblagirl Sun 14-Jun-09 18:07:46

i would also say again he sounds like he could be highly sensitive to touch maybe my ds went through stages eve with me whispering screaming at me to stop shouting

and again id lightly touch his back and he'd scream out in pain like id punched him luckily now he sleeps with help of mr melatonin his sensitivities have lessened a lot

hereidrawtheline Sun 14-Jun-09 18:07:48

hello and thanks I say specialist because it is a developmental paediatrician but I am crap at spelling it and I thought the terms were interchangeable. Sorry it could be a thing from me growing up in America. She is the one I have seen once and just emailed with some of my concerns - she said she would see us again after all the observations had been done. He hasnt been referred to SALT yet, she said she hoped his speech would correct itself but it is not going like that at all so I want him to see a SALT person desperately.

He has been touched, yes you are right TC - stroked on the shoulder sometimes I know he has said stop pushing me. And he was sat on the sofa and I tossed his jacket on the sofa at the other end an he started screaming to stop throwing his things at him. It sounds horrible doesnt it.

He always pretends he is one animal or another and we usually have to maintain that. I just wish I knew how much of this was normal. My experience of boys his age is pretty limited.

I know there was more I really wanted to ask you but I cant remember it at the moment have taken migraine medication & my head is cloudy. Will think of it in a bit, I'm going to go lie down.

Attila wrt my gut feeling, I really dont know. For months and months I was sure he was ASD. Then all of a sudden he seemed NT just quirky. Now he is increasingly seeming different again. I said on holiday it was as if he was ASD bi-polar. Then some days he seems absolutely NT and delightful and I just think - perhaps its all me. I dont know.

hereidrawtheline Sun 14-Jun-09 18:09:40

oh bubblagirl xposts! It's nice to "see" you - am going to go lie down will reply again when I get up.

bubblagirl Sun 14-Jun-09 18:41:38

ok hope you feel better soon xx

lou031205 Sun 14-Jun-09 18:44:47

Hi HIDTL - I had noticed you weren't around, and wondered where you were smile

WRT the speech, I had the SALT out for the second time last week, and I asked her about DD1's speech. She says things like 'geen' for 'green' 'balmerilla' for ballerina, etc. She said that children often start to increase their vocabulary but are unable to process or form all of the words, so they just approximate. She said that some children shorten words, or just miss out chunks (I suppose like 'geen' for green) and others substitute bits of words that they haven't been able to process. This is apparently normal. Of course I have no idea if it applies to your DS, because I don't know exactly what he is doing, and I'm not a SALT! But it might help you a little?

It doesn't sound like your DS is actively lying to me, more like he is trying to process things & can't express it accurately, so is using words he can say to get a message across. Of course to us as parents, it sounds terrible, and I know that being accused of hitting your child is horrible. DD1 also says things like "you smackbummed by arm", when actually we have taken her by the arm to guide her out of danger.

lou031205 Sun 14-Jun-09 18:50:43

bubblagirl, it is ironic when your DC shouts at the top of their voice to "STOOOOPPPPPP!!!!!, TOOO NOISY", isn't it?

bubblagirl Sun 14-Jun-09 19:35:05

lol yes very good isnt it screams out stop shouting with hands over ears yet i always say your being louder than i ever was lol

hereidrawtheline Sun 14-Jun-09 19:41:15

hi again

I agree "lying" was a poor choice of word on my part. I am not thinking at my best today and didnt go to the bother of clarifying. I dont think he is malicious or sophisticated enough to lie just that it is so horrible when he starts screaming to stop hitting him (crying) as if he is being beaten when nothing could be further from the truth and I have been worried sick about it.

The speech thing is quite drastic. Most people dont understand him and although DH and I do we still struggle a lot and have to go through process of elimination to work things out.

He has a dummy while he sleeps and in the car - he reminds me of me when I smoked years ago, has to have something in his hands and mouth to fidget with. I really want to cut the dummy out of the car rides in a bid to help his speech but to be honest I am afraid to. He can be at his worst in the car if everything isnt just so and I dont know if I am strong enough to last all the trips with him screaming and then it will mess up the whole day. I need to get a plan!

I'm sorry I'm a bad poster! You have all been so good for me and I just cant seem to get to a point where I can contribute equally back so I back off so as to not take more than I give. I felt really conspicuous posting loads about myself & DS and not giving as much. Its because I am really desperately trying to make my life & my family's life the best it can be so I am constantly trying to use my time efficiently and I often just get essentials done. There are so many of them! I do think about you all a lot though and wish I could be more in the loop.

daisy5678 Sun 14-Jun-09 20:03:07

Nobody measures how much we 'give' and how much we 'take'! We give what we can at the time - don't worry about it. Everyone understands what you're trying to do and why for your boy.

25th of June isn't long - hope you get some answers. xx

bubblagirl Sun 14-Jun-09 20:06:20

dont feel bad we all had nothing to contribute and one stage we had to learn by our own challenges lol so dont back away

my ds will say gog uh guilger , cannot pronounce s,f,t,b,m, d. sounding words he replaces with g or k

we have now got to a stage you can work out what he is saying and he is managing some b sounds alot of words sound the same so for around the house things we had photos so he could go point to a picture to let us know or we would say show me and get him to take to what he wanted

keep dummy for car ride if he's settled we did this for ds and then we found a colour case that straps to back of chair so sits out like a table for them and we were able to get him to draw instead with dummy at front of car just in case

he is 4 and now has dummy for night was told this was ok and wasnt affecting his speech as his speech was ASD related not dummy and as its his only comfort whilst melt downs happened he could have dummy then when calm dummy goes again he now asks for it when tired

his understanding is nearing accepting so i have explained when he goes big school the babies who have no dummies will be given his dummies by the dummy fairy and he can choose a toy he really wants

his not really into toys or looking at tv adverts wanting toys but has began liking things in shop so will get him to choose special toy and we will box all dummies up for babies so he knows now if i say what will happen when you go big school he says dummy fairy taking dummies for all the babies but obviously not said so well lol

it just sounds like his struggling with his sensitivities and would just need time out at that point we have trampoline in ds room so he can bounce away and he also likes his tent to sit in dark alone

but obviously at that age we need to see when there not coping and remove before it all breaks down as they have no way of managing emotion so need to be removed just think spacial noise and light also touch

ds has to have pj shorts and top on at home as his more comfy , his room has to be slightly darkened , he has tv in his room for when he needs his time alone, if too noisy too many voices and too many people speaking at once he has to go off alone and we allow this as its too much he cant process who's saying what or to who it frustrates him

too many people in one room again can leave him needing more space and will need to go into his room

as his got older his ability to cope has improved and will stay in room and hear when someone says his name other days he cannot cope so i need to just watch him and know when his having a bad day to keep him away from anything that can set him off

xx

bubblagirl Sun 14-Jun-09 20:08:41

sorry waffled on there didnt i lol

bubblagirl Sun 14-Jun-09 20:10:53

also sounds silly but ds hated car journeys when in his old car seat it was very close all around him so we bought britax chair just the booster with back and he loves the car now its more spacious and we found he wanted blinds on windows didnt like everything going past really fast so we put blinds up an dhe was much calmer along with his coloring also chair has cup holders so one side has his juice the other we pop some sweets for journey for being such a good boy

hereidrawtheline Sun 14-Jun-09 20:55:23

thanks for the waffle bubblagirl I'm a waffler too & I appreciate it grin

We did find on holiday, DS's room had bunkbeds in it and we turned the bottom bunk into a bear cave by hanging a sheet around it and closing it off. He loved it so much I am now trying to work out how to incorporate that into our house - maybe a tent or something but the thing about the bear cave he loved so much was the space to sit up and roll around and talk to his friends (stuffed animals) and most tents I could fit in my house would be too small for that!

bubblagirl Mon 15-Jun-09 07:41:47

we have a pop up tent but also bought ds mid sleeper bed with tent underneath and enough space under to play have table and chair etc we use it as storage but my friend has to use hers fore tent space for her ds to retreat to

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