can someone who knows more about pdd-nos or autism please offer me some help

[bubblagirl]

my ds as you all know has just been classed as atypical in his development has speech delay but poor understanding on the simple things

right i'll tell you how he is and someone please tell me what you think as seeing his child doctor tomorrow and if sounds like more than speech delay i want to raise concerns as i'm sick of waiting as a yr later still no SALT and playschool are getting concerened

he has no repetitive behaviour is is loving and keeps eye contact

to get his attention if his not doing something can be fine otherwise you have to actually move his face to yours as he just appears to not hear you

does not understand things such as what is your name but can follow instructions

at playschool can follow instructions but only if asked one to one otherwise doesnt seem to understand

speech is delayed and cannot pronounce words mainly start with a k or g so goat gog the guilder

knows his numbers and alphabet

has great concentration but a bit too good as doesnt notice anything else around him

i think ive been in denial as everyone keeps telling me theres nothing wrong with him his just a bit slower but begginning to realise as bright as he is physically at same level as peers but communication and understanding wise so far behind

i heard lady on here mention pdd-nos and never heard of it before but he seems to tock most boxes

i'm going to mention it anyway but just wandered if any body thinks my ds sounds like there dc and have they been diagnosed as i'm sick of being fobbed off i just want whats best for him so we can get him the help he needs to progress

thank you

he is so loving but i'm just noticing simple things such as say hello he doesnt get but knows bye whats your name he tends to jusdt copy questions instead of asking

could that just be the fact his learning speech or should he know how to answer he is 3 next month

thanks TC i love him and always say he wouldnt be him without this but cant help but feel sad that were not chatting away to each other

hate the fact all my friends dc are all talking and some younger than him i'm no way embarrassed though his just alittle different he is so bright in so many ways can do more than my friends dc who are older so he has some strong points speech just not being one of them

i'll just make sure i help himas much as i can at home until i'm given the help we need i just fine i'm getting frustrated with him quicker and not sure why i guess part of me just wants him to be normal iykwim

but from today i will try so hard not to get frustrated its just when he whines and moans when he knows to ask for help or mama it jsut gets to me but i'll just encourage the speech and try not to get cross

as at least i know now there is a reason why he is like this what we dont know but we will xx

Hi Bubblagirl

I found the CHAT - Checklist for Autism in Toddlers? useful. Think its on the NAS website. Its not a diagnostic tool but gives you a number of 'red flag' signs that you can use to flag up your concerns to health professionals.

The key one for me was not pointing as my 3 yr old autistic DS has never pointed. He has a speech delay and doesn't really get receptive language (understanding instructions) but is very affectionate, has a SOH, brings things to your attention.

We got our diagnosis a year ago. Its taken a year and a few sessions with a counsellor but the hurt and anger have gone now. I feel really content with the way things are. I'll always strive for the best for him, but I accept and love him so much for who he is. He is just so special and gorgeous and quirky and unique! I think he's the best - no doubt you think your DS is too and that will never change! x

Hello its ecomum again. Just wanted to add that our lives have really improved since DS started to get the hang of PECS to ask for something to eat and drink.

Also - one of the pluses of having a child with special needs is that you can actually stop comparing them with other children. I've found that its a good thing in a way that I can forget all the aspirations I had for him (you know - playing cricket for yorkshire, winning a nobel peace prize). I don't have to worry about him 'meeting expectations' and all the pushy parent nonsense.

I can just accept him for who he is and ENJOY him! It quite liberating really as you can 'live in the moment' more. I've now got an 8 month old DD and I've found myself applying the same philosophy to her.

thank you ecomum sorry didnt realise anyone had posted on my thread thought id killed it lol

yes my ds is wonderful its just more apparent to me now that he is slightly different to his peers but good thing he is trying to communicate with them

his not feeling to well at moment so slight set back he tens to whine instead of using words he does know

i just feel so low not sure why ds is not feeling well i dont feel 100% but find myself telling myself i cant cope especially when he just whines all day it makes me so frustrated as i guess i feel were going backwards instead of forwards

and also shows where other dc will tell there mums whats wrong i still have no idea

he is so bright in many areas just speech doesnt seem to be coming alomg as quick as i would of hoped also sdounds he cant do b,s,f,t,nearly everything begins with g or k so trying to help him he can say the sounds individually just cannot say them as a whole word

still from a yr ago he was saying nothing we can have small talk now but i still know he has so far to go and i keep crying every day at the moment cannot work out why i feel the way i do

thanks for advise will look at website your ds sounds simply adoreable xx

just wandered if someone can help with this i was told today children with speech delay normally have sensory problems

my ds hates his nails being cut find sit painful and also cannot wash or cut his hair without him screaming place down does anyone know if this is related and could this also be autism

i never heard of speech delayed children with sensory problems before and thought he ws just being difficult but he seems to find each process painful

thanks xx

thanks again if anyone knows more on this as ive never heard of the sensory being part of speech delay x

hello bubbla, I can't say about speech and sensory issues being linked, my ds will be 4 soon, we don't have a diagnosis yet but he has asd traits, he has speech delay, plus other communication problems, he has sensory issues, one of them is hating getting his hair cut/washed and now he hates baths too...

I can totally relate to the sadness, I think I get phases of feeling really down about it all, especially when I am coming up to another meeting with all the professionals involved.

I feel quite overwhelmed by how much information there is and knowing where to start.

have you looked at the NAS website?

hello aefondkiss thank you i was told for some reason it was linked as he hates hair washed and cut and just going through a hate bath stage

its just so upsetting as apart from speech he looks like any other kid his age plays with toys tries to communicate its just every now and then you get a hint of thats not right and we know it but just guess we dont want to believe it

how is your ds does he socialse and how is his speech now? i just like to know other dc who are similar to my ds as in rl i know noone and have noone to talk to

it brings me down probably because i want to sit with a hot cup of tea and pour my heart out and have no one

brb dd wants a bed time story

your DS is very young, so whilst I think you are right to be alert to the possibility of sensory problems, I wouldn't jump to the conclusion automatically that dislike of some of this stuff is not just normal toddler behaviour. I think that sensory problems can be linked to things like dyspraxia and other things that aren't ASD. I don't know much detail though. You might want to google Sensory Integration Disorder for more info. I have to say that DS also hates having hair cut/washed. He hates the bath in our new house but is fine with the bath at his friend's house [hmmm]

I think the whole going through finding your child may have sn, isn't "normal" is pretty devastating, especially when you have spent the first 2 years or so thinking they were fine.

it is pretty obvious to me now that my ds is not NT, he is so different from the other children at nursery, when I first got a hint from someone that they thought our child had something more than speech de;lay, I and my family were not ready to see it, we thought he had a speech delay, and he would "grow out of it" (not saying your ds has anything like my ds!)

my ds speech has very slowly improved over the last year, he doesn't speak like other 3, nearly 4 year olds, he is sociable, and he does try to communicate - which is good, but being the odd one out at nursery is hard for him and hard for me to see - his behaviour isn't easy to deal with either, he has meltdowns, can be very loud, shouty, ach the list is endless, but he is a very happy, loving fun wee boy, he hasn't got friends, which `I find very sad, but I am hoping to talk to his school about creating some kind of buddy system...

at least we have got mumsnet!

thanks TC he did go through a phase of not liking baths before but the haircut and touching head has been about for some time

he also hates his ears being touched and when cutting nails he holds fingers out for ages as if really stinging we have to file his nails now

i thought he was being difficult so waited for him to fall asleep and cut his nails

first thing in morning he came out fingers out stretched asking for kiss meaning they were hurting him so def problem there

i have looked up everything and doesnt tick many boxes in each so cannot pin point in perticular what it can be as he has great balance eye contact gestures for things understands facial expressions

but has no concept of simple language but could just be down to the delay as they have to understand it before they speak it

just frustrates me that i could be doing more to help but have no help in doing so ive been left in limbo for a yr and feel i wish i could do more for him

aefondkiss i cried when i read yours your ds sounds so adoreable and the buddy system sounds great

im glad i can come on here and have a chat as all my friends do the awww he'll be ok anyway my ds has done this today

no one fully understands how worrying it is and dont seem to want to listen either but ive sat at the end of the phone and gone through there dc not eating teething colic dried there tears and now its me OOOHHH NOOOO couldnt possibly take notice

thanks you guys you make it much easier for me but just feel so deflated and scared hate how i feel at the moment

((bubbla)). I do identify with how you feel - how I felt a year ago when it dawned on me that DS was hitting 3 and the speech wasn't magically going to come. DS still has big receptive speech problems, but this time last year he couldn't put two words together, had the odd phrase - up the stairs/all gone but otherwise was on single words - now he can put together some really good sentences, "I want mummy run on grass/I don't like mummy switch it off" etc. He was only understanding at 1 word level 12 months ago, but now is at 2/3 word level. So even with problems such as ASD etc possibly underlying the speech issues, significant progress is still very very possible. DS has always been fine with colours/numbers/shapes/jigsaws - did all that at the normal age or possibly earlier, so sounds a bit like your DS in that respect.

In terms of the friends - I find friends with kids usually worse than ones without - the ones with friends seemed to trust in my judgment as a mature adult, and urged me to go private if necessary, the ones with friends by and large treated like a neurotic nutter - once the private salt confirmed he was very delayed I did get more respect that I wasn't just making it up in my head that there were problems, but people do tend to be artificially positive. They by and large mean well and think they are offering you hope/reassurance, but don't realise that they are undermining you.

I can identify with that TC. It makes you feel isolated, as though you're being neurotic, as though you're imagining things.

to my infinite shame bullet, i remember doing that once with you on a thread on the other site - when you were complaining about DS1 taking ages to walk anywhere, and I chirpily said - oh mine does that too, think it's normal (before all my concerns about ASD)!

I don't mean you or anyone else on the other site TC . I think the slow walking is normal, unless you're my Ds2 who likes to try and break the four minute mile. I've had so much support online. I was thinking particularly of when I was at a book group the other month and was explaining how Ds1's receptive language is so poor he couldn't understand a simple board book about Iggle Piggle's Lost Blanket. Five pages, one or two short sentences on each page, he was very interested in it, but didn't know who had found Iggle's blanket despite just being told. This other woman said "oh I think most 4 year olds can't understand that something has gone missing". I replied that most four year olds could understand that very simple story and be able to give the main points of it. This woman has not even seen my Ds1 for ages now as well, which made it all the more infuriating.

oh no I wasn't meaning anyone from t'other site either Bullet! Funnily enough I had a spookily similar experience with my good friend on Friday - when I was explaining DS's receptive speech problems, so he couldn't say what birthday presents he had got if you asked him, she claimed that was normal for a 4 year old , particularly as her 4 year old's speech is fabulous, when this child had just turned 3 they had a discussion about death when her child noticed that her favourite cow at the farnm park wasn't there any more.

DS is starting to be able (with much prompting_ to talk about past events!

So

DS- X's party!
Me - yes, we went on Saturday, and played egg and spoon race
DS - Dropped egg!

Ds1 has started remembering things as well. He comes home from school and says "W bread! And T bread" .

thanks guys my CNN phoned today she has been fab throughout this wanted to see how ds ahd got on with gp

so i told her she would be refering him but no referal has been put through yet so she said she would do it today as mda team have a short waiting list at moment and she is part of team so will get ball rolling for me

while in limbo she came out once a month to play with my ds and teach him few things was such a help nice to know someone takes there job seriously

she genuinly had good relationship with my ds and he really liked her and i was so grateful for her help

so now with any luck appt wont be too long coming through

glad you are feeling a bit better. What is a CNN out of interest. Are you not UK based?

yes i'm uk based CNN is community nursery nurse

she has been helping me and ds since he was just gone 2 coming to my house to work with him

not feeling great it is weird last 3 days hardly able to eat just feel so deflated so worried but ds has not been well running temp not eating whining constantly so guess i'm just run down and dp on nights so on my own

feel i could walk out go somewhere quiet and just scream really really loud i think that would make me feel much better lol

his on alively one now so not wanting to sleep so mummy can have some me time lol at least his in his room i can be on here moaning

wish i could feel more human again i'm finding i cant handle anything at moment want to tell every thing to shut up and want to be alone somewhere just me with no worries nothing and i'll just cry and sleep

but hey tomorrow is another day i just hope i wake up and feel better and not that i could just keep crying think all these months of bottling up my worries and agreeing with everyone that it'll sort itself out has now just came crashing down and i feel such loss and so alone.

thank god for mumsnet and you guys you really have been such a help even just knowing i can moan and someone understands how i'm feeling in rl no one really cares as there lives are uncomplicated or there dc are i should say so they cannot be bothered to try and understand just as long as im there when they want someone to talk to

hey bubbla - I think I know how you feel, the thing is even if you have understanding friends it is you who has to go through these feelings, I think people can understand you are having a hard time, I get lots of sympathy, and I know most of my friends really feel for me, but it doesn't stop me feeling heart broken, sometimes.

sounds like you are having a really tough week, I always feel much worse when I am sleep deprived or my ds has been really hard work for whatever reason, that coupled with a bit of good old pmt and sometimes I really struggle to get through the day.

can you go and visit your Mum? is there anyone who could just meet up with you ? I think getting some time out is really important when you feel like this( I know it is easier said than done!) when is your dh next off? make sure he lets you get a few hours to yourself to re-charge!

I regularly go away for weekends with my dd, once every couple of months just to escape, get a little perspective when I am feeling low.