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Here are some suggested organisations that offer expert advice on special needs.

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Here are some suggested organisations that offer expert advice on special needs.

SN children

Very quiet baby - worrying myself silly

129 replies

Bornworrier · 15/05/2004 01:22

Sitting here worrying myself silly in the middle of the night about my son. He is almost nine months old and he is just so quiet. He has a boisterous older brother, but ds2 just sits there watching him play. ds2 is a very happy little boy and is always smiling, sleeps well, is always grabbing my face, putting his hand in my mouth, loves cuddles, loves his toys and has not got a problem with eye contact. However, the only noises he makes are laughing, crying, occasional vowel sounds and a lot of "Mmmmm, mummm" noises when eating his food. I am worrying already that he has a language delay problem and have been looking at all your posts about autism and apraxia. Do you think it is too early to be worried? What else should I look for in order for it to be something like autism or apraxia?

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Davros · 24/05/2004 21:57

The sad reality is that, if you already have a child with an ASD you have a MUCH higher chance of having another, can't remember the stats but they're probably dated anyway. BUT that doesn't mean that it need be nearly as serious, that any "strangeness" isn't just due to normal development or having an older sibling with an ASD to copy and not learn from I did the parents part of CHAT on my DD last week as I had a day of crisis of confidence and she would pass now. Its still just an indicator but I certainly feel much better anyway. Its the same old rock and a hard place, don't look for problems just because you already know what to look for but don't ignore potential problems either because you're being optimistic. I suppose the best thing to do, if you have any real worries, is get on the effing waiting lists and hope you don't need to see anyone when you get to the top but be very relieved that you can see them if you find you need to.
Sorry if this sounds grim.

coppertop · 26/05/2004 13:36

Well our portage worker came today so I mentioned ds2 to her. It was strange because he seemed to do all the things that ds1 had done on her very first visit. He did his usual spinning round, turned a toy car upside down to spin the wheels, and showed his mini-obsession with round objects. Some signs were good. When she clapped he clapped too so he does at least have some element of copying. She tried to sing to him but if she got too close or sang too loudly he burst into tears and ran away. The good news is that she does a lot of work with the Paed (same one who dx'd ds1) and is going to talk to her about him. She's also going to ask the SALT about possibly putting ds2 on her referral list now rather than waiting till later. It's a relief to know that it's being taken seriously but the whole is he/isn't he is just like ds1 all over again.

Jimjams · 26/05/2004 13:40

Not sure whether to say or . I think because the worst bit is always that wondering whether to push things forward, and at least you know that someone will be keeping an eye on him. Excellent about the clapping as well- that's a really positive thing. that the ishe/isn't he is starting again though.

Must say your protage worker sounds great!

Fio2 · 26/05/2004 13:50

coppertop I would just say early intervention is better as you know, so whether its a problem or mild or nothing its being dealt with. We all worry about this. My daughter has NO specific diagnosis so we are always worrying about no.2 and even no.3 (maybe now)

coppertop · 26/05/2004 20:55

Yes our portage worker is brilliant. It's a shame that portage will end in about 6 weeks or so - unless we end up seeing her again for ds2!

I wouldn't be the end of the world for us if ds2 isn't NT (although obviously I'd like him to be) but it's the whole uncertainty thing that's such a nightmare. Dh has confessed that he's noticed a few things too, eg ds2 looking at things out of the corners of his eyes.

Fio - The uncertainty must be awful.

BlossomHill · 26/05/2004 21:41

Coppertop - My dd looks at things from the corner of her eyes sometimes, it really freaks me out. My dd has a dx of langauge disorder but does have some auti traits, but only very mildly. I feel the same as you that the uncertainty is worrying, you are almost analysing every move they make. The other day after being on mumsnet I decided to test dd and suddenly pointed to something as I wanted to check that she was looking at what I was pointing at rather than my pointed finger. My dh thought I was completely mad but then he is more relaxed about it all then I am.
Fingers crossed that you do not have to wait for ages to see the SALT and Paed. Good luck BH

Saker · 26/05/2004 22:36

I know what you mean about the "is he isn't he" stuff? It really spoils your enjoyment of them for what they are, whatever it is, because you are constantly analysing. As you may have seen in another thread I am worried about my ds2 who seems to have some autistic traits sometimes. The other thing I find is that is really spoils my memories of ds1 when he was younger (who was quite advanced in a lot of ways especially speech and imaginative play). I think back to something ds1 did at the age of two or whatever and my next thought is ds2 wouldn't do that even now. I know you shouldn't compare but it's so hard not too.

Felt a bit better about ds2 though - had a look back at the videos of him and have one of him pretending to talk on the telephone at 18months, also doing the actions to "Wheels on the Bus". Funny thing is I can't get him to do any actions to songs now - but maybe he is concentrating on the words too much.

mrsforgetful · 26/05/2004 23:01

slighty off at a tangent here...but still a bit relevant!!!

Do any of you look back on things your child did when younger that DROVE YOU MAD THEN (ie leighs's constant Thomas the tank obsessive play) and now wish they would go back to that 'way' again????

In my case leigh was in hindsight clearly autistic then but cos tom was so full of ADHD i had no time to notice- just appreciated the fact that leigh would and could play the same game for hour after hour- or the same book or the same video etc....and alone without my involvement- thought this was brilliant at the time as i was able to 'deal' with tom etc. However now he is 7 and is far more difficult to parent than tom at 7 and I miss the little boy that played solitarily for hours (but i loved watching him) ....and i even miss the way he'd 'live a few days as a character on Thomas the Tank.....and he'd insist i called him that name all the time...and make me coment on his 'blue coat of paint'.

I regret not videoing him more than i did.....i have only a few minutes recorded of him playing with the trains and reciting the narrative from the particular episode. Ofcourse at that time i thought him to be playing imaginatively....it was a long time before i realised that infact he was 'simply' re-enacting to the letter exactly the story and phrases he heard on all the may tapes he watched.

sorry to go off thread- but as you know i have only recently had it acknowledged that leigh is autistic too....so for the past 2 years i have been doing the things you have all described here- and i had tears in my eyes reading the post just before this when she said about you are so busy 'looking' that you miss out on the 'child they are' rather than the 'child you worry they may be?'....luckily for me leigh was 5 before i really began to ?wonder?...so i enjoyed him 'simply being himself' for a while....however befoer then there were may 'pointers' that if i had known more about autism then ...i would have realised sooner. hope this rambling makes sense!!

Jimjams · 27/05/2004 09:39

know what you mean Saker. I love seeing ds2 do stuff, but then its bittersweet as its all so easy for him and I feel that's really really really unfair.

BlossomHill · 27/05/2004 09:50

In my case I always realised dd was different from about the age of 1. I have a ds aged 6 who was a text book baby/child and still is (although obviously has his bad days). Talked early, great social skills and play skills and that's why alarm bells started ringing from an early age. I voiced my concerns at about 18 months and dd was referred to a SALT who then referred her to a dev. paed. They have all said that she wasn't autistic but had a language disorder. DD has been to music therapist and phych? and they have all agreed on the langauge disorder dx. The school think it may be semantic pragmatic disorder which is mildly on the spectrum so I suppose it makes sense really. It all just seems very confusing. It's just that the word "autism" scares me and yet I do not know why. Language disorder doesn't seem as severe maybe?
With my dd 95% of the time she seems perfectly fine but this morning at school in the playground she saw a little boy that she liked so what did she do, put her fingers in her ears (that's what she does when excited/scared and used to be an almost obsession but has really cut down now!) and I know that's an auti trait and it really upsets me when she does things like that. Sorry everyone but I am not having a very good week. I just want dd's problems to disappear overnight, and unfortuantely they are not going to!

geekgrrl · 27/05/2004 10:06

saker, I know what you mean - still find it hard sometimes to watch videos of my dd1 at dd2's age or younger. The difference is just so blantantly obvious. Also watching ds (6 months) play now and move about in a way that was so extremely difficult for dd2 as a baby. He pivots on his belly with complete ease - something that was the main focus of portage with dd2 when she was nearly a year old, and such a difficult thing for her to do. Makes me very proud of dd2 for being so determined and optimistic despite everything being an uphill struggle for her.

Jimjams · 27/05/2004 10:17

BlossomHill I don't think your dd's problems are any different whatever they're called. Autism is just a signpost. Being given an autism dx or not doesn't make any difference to the child themselves although it may affect the input and help they receieve.

Autism is a hugely varying condition. My son is defintely autistic and definitely severely disabled. However when yo score his autsim it comes out as mild/moderate- he should be doing better than he is. Although not really as the score is artificial and is just reflecting that he is very sociable and always has been. However his language problems are very severe indeed and this is what makes him so disabled.

Personally I don't really care what they call his problems. I'm just interested in trying to help him in the areas he needs help with. Therefore we hardly ever use visual timetables (except in a school like environment) as he doesn't need them. Lots of autistics may, but he doesn't. But we work a lot on helping him control his OCD, and on copying and language.

I don't think the name matters if you are aware of the problems. I know several children who could have been given an autism diagnosis had they seen a certain paediatrician, but I don't think being given the dx would change them in anyway.

bornworrier · 27/05/2004 11:12

I posted this message almost 2 weeks ago and still not much movement on the speech at all apart from lots of blowing raspberries, more oooohs and ahhhhs and lots and lots of pursing his lips like he is going to say MMMmmm. But silence then giggles. It's almost like he wants to MMMmmm but can't.

worriedsick - my doctor said it was too early to be worrying about speech development at 9 months and that her daughter didn't start babbling until 10 months old. (I have done a lot of research and some books/papers give a range for babbling to start at between 6 and 12 months.) Doctor refered me to an ENT specialist as I have some worries about his hearing.

I have had SUCH different viewpoints around the effect of hearing loss in one ear on speech development. Sally Ward (thanks jimjams) indicates that it DOES cause a delay. ENT specialist said it doesn't. Anyway, specialist tried to test for glue ear and failed as ds2 wriggled around so much. Has refered me on to someone who will do a proper hearing test (no appt. yet). The ENT specialist also said that it is too early to worry about lack of speech.

Not worrying any less though!

worriedsick - interesting that our children are the same age, with hearing problems in one ear and both have not started babbling. Please feel free to contact me via my e-mail if you would like to swap experiences.... especially as you are worriedsick and I am bornworrier!!!

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BlossomHill · 27/05/2004 16:15

Jimjams - thank you for your reply. I agree with everything that you have said and know that the label shouldn't really be an issue. It's like a catch 22 situation I feel comfortable with the dx but deep down I don't - if that makes sense. The thing is that I haven't buried my head in the sand I have always been upfront with every professional involved with dd. I always ask do you think she is asd and they always say no, even on her statement it says that it is higly unlikely. As dd is the only child I really know with a language disorder it is hard to compare. I do have lots of friends with asd children and they are not like dd but dd is definitely quirky!!! Thankfully we have dd's annual review and hopefully things should be clearer, fingers crossed.

mrsforgetful · 27/05/2004 22:41

BH- what you said about the 'word' autism scares you....i totally agree!!!

Having 2 boys with it makes it no easier to 'suggest' to others about their kids....another thing you start doing after a while....you start to notice it all over the place!!!
It seems easy to say "he seems dyslexic" or "He is dyspraxic" ....whereas if you said "your son seems autistic" the parent would run a mile!

My sons 'score' mild/moderate too as they chat away and are sociable.....however just rock one of their boats and it is clear just how severely they are impaired in many areas.

On the subject of 'Labels' Jimjams is right....it is a Signpost.....when we got the aspergers diagnosis that was all we got. I have now explored all the 'conditions' that are cosidered to be 'on the spectrum' and also those which are called 'cousins' as they overlap into the autistic spectrum.

i imagine it like the olypic rings hoops....but larger and more like a flower....each circle overlapping another untill the child has so many symptoms that it affects them daily. i believe there are many kids who have a slight impairment that is in the spectrum....but that is all they have so it does not cause any distress...

recently read loads on semantic pragmatic and realised how much my 7 year old struggles to comunicate...though he's very able to chat.....in a way that others are interested....it really hit home why he cannot read signals as to turn taking in conversation and why he screams a high pitched screech if he is not given full attention.

so......if you like imagine an umbrella with the letters A-U-T-I-S-M printed on each panel- and then at the end of each panel is all the many 'conditions' that affect the child on the spectrum......Dyspraxia,Dyslexia,ADHD,and Semantic Pragmatic Disorder........but remember there are many people who have these conditions that ARE NOT autistic......however what i'm trying to say is in my case my son's are Autistic....and have bits of dyspraxia and ADHD etc too.....it no longer matters to me what the 'heading ' is for my sons...it's how they are understood that counts!

So my sons are the same whether they are labeled 'naughty rude ignorant spoilt and clumsy'....but i prefer the description 'Autistic' as that is the reason for the behaviours people see.

take care BH.... there are many of us (including me) who still feel as you do....despite my positive words...i wake up each day and never know what's in store!!!!

tamum · 27/05/2004 23:06

Gosh MrsF, what an amazing, moving and thought-provoking post. I take my hat off to you . Have you ever thought of writing a book? That was the most fantastic description of the autistic spectrum.

bornworrier · 28/05/2004 06:45

Staring at, and analysing my son's behaviour is driving me mad. Two things happened yesterday, that may mean nothing, but I was uplifted a little by them.

His brother was banging on a xylophone with a stick, ds2 grabbed the stick off him and started trying to bang too. He really was trying to copy him.
ds2 has started trying to pull himself up on his cot. I now bang the top of the rails of his cot and he knows I mean "go on give it a go again". He grins his head off every time and reaches for the top of the cot to try once more to pull himself up. I was pleased because he so obviously understands what I am indicating to him non-verbally.
Oh and when I carry him with him holding a biscuit - he always tries to feed it to me and when his brother and I are throwing a ball to each other and he gets hold of it, he now tries to throw it too.
I know these are little things, but for the first time I feel there is some real communication between us, rather than just crying or laughing.
Am I reading too much into these things or are they good signs?

Oh and agree with Tamum - Mrs F, you should write a book - that was so well written

OP posts:

dinosaur · 28/05/2004 10:31

This reply has been withdrawn

This has been withdrawn by MNHQ at the poster's request.

maddiemo · 28/05/2004 10:40

His trying to feed you a biscuit is also a really good sign as this is a social interaction. My autistic son never did this and I remember my mum commenting on it.

BlossomHill · 28/05/2004 14:01

Mrs F Thank you so much for your lovely post. It has made me feel so much better - honestly In lots of ways I have excepted dd as that is the only way I have ever known her and love her for the brilliant little person that she is. I do get sad sometimes though, a little bit for me but mainly for her.
I also agree that you could def. write a book!

coppertop · 28/05/2004 14:42

Well today I took both boys to a soft-play centre. Ds2 looked far more autistic than his brother did. Ds2 walked round holding one of the balls from the ball-pit. He was only interested in toys that he could spin or toys with wheels that could be spun round. The other children didn't even exist as far as he was concerned. He was far more interested in a set of flashing lights. I think if I'd seen any other child acting as ds2 did, my first thought would have been "That child is somewhere on the spectrum."

tamum · 28/05/2004 14:44

Coppertop, I'm really sorry. You sound so convinced

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coppertop · 28/05/2004 14:51

Today was probably the first time I've had to really observe him around other children. I could still be wrong but I'm about 75% sure that he's on the spectrum. A lot of the autie-type things that he does are things that his brother used to do before ds2 was born and hasn't done since. Strangely the thought that he's probably autistic isn't as upsetting as I would have thought it would be. I think if anything it would be a relief to get a dx so we can get on with things. It's very strange.

coppertop · 28/05/2004 14:56

Should add that when I say it's the first chance I've had to observe him with other children, I don't mean he's never mixed with other children! I mean it's the first time I've been able to sit and watch without having to 'manage' ds1's behaviour.

tamum · 28/05/2004 14:57

Well, the only thing I would say is that my ds did interact a little bit with other children at nursery at that age, i.e. children he was very familiar, but he would never, ever, have interacted with other children at spft play, or birthday parties or anywhere other than nursery, even if it was the same children. He was 4 before that happened. Again, I don't want to be peddling false hope, but I would still have said that what you've just described wasn't incompatible with NT-ness later on.

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