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   Our SN area is not a substitute for expert advice. While many Mumsnetters have a specialist knowledge of special needs, if they post here they are posting as members, not experts. There are, however, lots of organisations that can help - some suggestions are listed here. If you've come across an organisation that you've found helpful, please tell us. Go to Parents with disabilities, SN teens, SN legal, SN education, SN recommendations.

Long vent - fear/uncertainity/disgnosis

(28 Posts)
Sorry this is so long, we're pretty early in the whole process of 'assessment' & are finding it awful

I'm not even sure what I'm asking - really I just want someone to say it'll all be okay ... I realise that isn't going to happen though.

DS is 2 & 8 months. He has a language delay (has about 10-15 words that he uses constistently - all nouns (mostly animals, also stick/ball/apple) he makes no attempt to put words together) which we are having assessed. He has had his hearing assessed, they were unable to complete all the tests so we're having it repeated. His language development was completely normal until about 16-18 months old (I was actually pleased that he was talking far more than his sister at the same age) but since then he has fallen further behind his peers. HV who did a brief (distressing for ds) assessment of him described him as 'immature with possible sensory issues'. His motor skills seem fine.

He's generally very happy, he loves other children & is interested in what they are doing & wants to be involved. He is very affectionate, he copies motor tasks (e.g. playing a game in a new way) and learns pretty quickly how to do something new. He likes to share what he is doing with us - bringing books & toys over to us. He sleeps well and isn't at all bothered by new places, people (although he's a little shy to start with), activities or crowds. He waves 'bye bye'. He follows our gaze, isn't distressed by eye contact and will look when we point at something. He understands a certain amount - walk, bath, food, drink, daddy's home, garden, chocolate, biscuit & will respond to if we mention those things.

He seems to have some awareness of emotions - he gets upset if people are angry, hates being told off (will cry), looks to us for approval & puts his hands over his eyes during the emotionally charged bits of films.

He enjoys are variety of toys and doesn't seem obsessed with any (though he chews pretty much everything). He doesn't have meltdowns when thwarted - will complain/scream briefly then get over it. He dances & likes us to dance with him. He claps (to get approval if he's done something good), can feed himself with spoon & fork, he is extremely fussy wrt food but is usually willing to try something new if it is sweet. Loves to bounce (trampoline) & swing. He isn't aggressive or violent but is definitely less able generally than his sister was at the same age.

However - he never responds to his name, seems completely oblivious to 'stop' or 'no' (we have to physically intervene to get the point across), often ignores loud or startling sounds. He did point at 16 months but somewhere along the line he has stopped - if he wants something he will drag us over to it, he sometimes points at things to show us but he has to be very excited to do this. He often uses our hands to point at things he is interested in. Much of the time he is silent in new or stressful situations he completely clams up.

He has no pretend play & isn't imaginative in the way he plays - he likes to do puzzles, Lego & building blocks, play with his cars & trains, balls, sticks & pouring sand/water, he likes to scribble & enjoys physical play (being tickled/swung around etc). He doesn't copy sounds or words. He does smile & laugh but tends to have a very solemn/aloof expression much of the time - 'in his own world' seems to apply. He won't point to body parts/colours/animals etc when asked. He doesn't pay any attention to 'bring me ...' type requests (even if he knows what we're talking about). He is completely obsessed with trampolines & water
(e.g. ponds - if there is a pond he will sit on the edge/chuck stuff in it/sip his bucket in it for as long as he is allowed).

His SALT spent a long time assessing him - she said he is happy/not distressed, adapts to new styles of play, learns quickly, has good concentration but is prepared to move onto a new task when she prompts him.

She felt he was strongly visual and picks up on visual cues rather than what we say (when he appears to understand us). She felt his behaviour suggested hearing loss at some point in the past but could see why people might suggest a autistic spectrum disorder. We're waiting for her full report but she recommended getting his hearing checked again, felt he would benefit from SALT and did agree hs play was immature and he lacks confidence with language.

We are besides ourselves with worry - will he ever have any useful speech? We are so desperate for him to communicate with us. We're terrified that the loss of his pointing means he's regressing - anytime he is a little withdrawn or uncooperative we feel that we're losing him a bit. I feel sick at the prospect of him losing the skills he has
Add message | Report | Contact poster By Thu 09-Jul-09 23:04:11
He's come a long way and it's only week 1!

when you have the "people" pictures together you can do the "that's DS, that's baby, that's mummy, that's daddy, that's big sister" "Is that mummy? NO! that's baby!" thing over and over again using his new-found pointing prowess. You can also use it to warn him when a specific visitor is about to arrive. Have they told you to make your house pronoun-free until he's mastered proper names?

when you have the places together you can point out where you're about to go and where you've just been.
Add message | Report | Contact poster By Thu 09-Jul-09 22:04:54
- saw the GP yesterday & he is going to do a paeds referral - need the SALT report first (which was supposedly posted yesterday).

- HV is coming on Weds to do developmental review, organise SALT follow up & repeat audiology. She's also going to refer us to portage & a great SN nursery - it specialises in therapeutic play ~ the idea of having some respite is heavenly (I home ed my 8yo as well as having the baby).

- BIBIC have got back to us & we're going to have an interview asap.

- managing to get vitamins & oils into ds - we're going to do the Sunderland test, he has skin problems as well as horrid nappies.

- got More than Words (did indeed send me down the fear road of 'he's autistic, he'll never talk, never be independent') ... think he's mostly at the 'requester' stage & It takes two which I haven't had a chance to look at yet.

- been making a massive effort with ds - he's pointing really well now (but only to indicate he wants something, no pointing to express interest & he rarely looks at me when he points - also point when I ask 'more?') and waving hi! & bye! well. No news words ... many of his old words have degenerated into babble but there is definitely joint attention & lots of babbling. We're going to get pictures of people/places/thing together this weekend.

I'm certain he's somewhere on the 'spectrum' ... I'm so desperate for him to talk.
do you have sn group near you i managed to get ds into some therapies to help with language and social play could be worth a try he was virtually non verbal at the time and had no social skills it really helped a lot taught turn taking social interaction it was with 1 other little boy and we chose to do music therapy he responded really well to it
Add message | Report | Contact poster By Tue 07-Jul-09 22:34:28
1. say 'mummy' 'daddy' 'his name',
2point to body parts,
3sing nursery rhymes,
4yes/no,
5show me questions,
6choices

So six things to work on with the help of visuals and the books that are coming your way.

Presumably it is definitely the case that he has a receptive language delay. You may find it best to concentrate on that problem. In the (unlikely frankly I think but who cares what I think?) event that he has autism, accelerating his ability to understand language will make all future problems milder.
Add message | Report | Contact poster By Tue 07-Jul-09 21:06:02
It's a bloody rollercoaster. I had been feeling slightly better - in part due to this thread, thank you all!

I've had a week of being 'with him' as much attention as I possibly can, taking nothing for granted, simple language - no questions, lots of games etc & I really felt he was responding to me, he's

- very happy & engaged
- initiating games (catch), bringing books to us etc
- good eye contact
- following our gaze & point well
- lots of prompted pointing ('show me') when he wants something & twice today he's spontaneously pointed to get something (he seems to hate it though & will go to great lengths to get what he wants by himself)
- mimicking us with new ways to play (no new sounds though)
- I've caught him making his toy animals kiss each other & kiss me, waving goodbye to them when he hides them & giving them rides in his cars (is that imaginative play? He won't wave to people though although he was last week)
- turning to look at me when he 'talks' (i.e. says the names of animals he knows/makes their sounds - usually when he sees them in books or on a dvd), looking at me expectantly when something funny is about to happen. Looking for my reaction to things he does.
- he waved to indicate he wanted a balloon with his asking phrase - "eyeeyeeye bush?" (!), then said 'balloon'
- followed a few commands - lie down, go for walk, sit down, wipe hands, upstairs bath, bed now, PJs on, clothes off, arms up, step out.
- he was whispering to himself as he played this evening (gobildegoop but I haven't heard him do that for ages)
- we have no behavioural issues, he'll express his displeasure at being made to stop doing something he wants to do very loudly but it never last more than a couple of minutes & he's happy to more on to the next activity
- he's taking his vitamin drops & sleeping really well.
- I'm making everyone 'stop doing stuff to him' i.e. not just treating him like a baby, but making an effort to tell him what is happening ... he's been much more cooperative generally.

But
- HV gave me the long list of what he can't do ... say 'mummy' 'daddy' 'his name', point to body parts, sing nursery rhymes, yes/no, show me questions, choices etc - pretty depressing
- he still pretty much ignores his name (may stop what he's doing momentarily when I call him - sometimes)
- I've read an awful lots that suggests ruling out ASD in an child with this type of language problem isn't easy (& nothing that he can do will lead anyone to say 'he hasn't got autism' )
- very little imaginative play - I think his play is immature, more what I'd expect from 18-24 month old - although he's very good at catching!
- haven't managed to get any oils into him

When I feel a bit more optimistic I think I may be deluding myself - I really don't trust my judgement at the moment.

Off to GP tomorrow with the aims of:
- repeating audiology assessment
- referral to developmental paed (anyone recommend one - we're in Reading but are willing to travel pretty much anywhere)
- referral to Nuffield Speech & Language Centre
- referral to local SALT

In the meantime we are planning on starting weekly sessions with the private SALT & my HV is going to do a developmental assessment too.

Thanks for all the new suggestions, very much appreciated.

... and that was long, sorry!
oh i haven't changed ds diet but i do give him eye q tablets but they do eye q smoothe now to which may be easier and within few weeks found my ds to be more responsive
Add message | Report | Contact poster By Tue 07-Jul-09 14:03:21
Hi,
I don't usually post things on here, I'm a bit of a shy lurker, but what you describe in your post I can really relate to with my DS now 4.3. My son has expressive/receptive delay and at 2.8 only said a few words too.

You mention you've had your son's hearing checked but what about his vision? I had my son's eyes checked about 4 months ago, and it turned out he needed glasses for distance. Since he's been wearing glasses he has become a different child. His speech has improved without doubt and I think it's one of the best things I've ever done.

The other significant thing I've done with my DS is have a look at his diet, we decided to remove gluten and again, like the glasses the difference in him is amazing.

In my experience I've found that examining all options and possibilities have uncovered some interesting things- however unrelated they may seem. My DS is still behind his peers in terms of his communication and social awareness, but he's catching up and getting there, and for that I feel I did the right thing by exploring all options.

I really really understand how you feel with regards to the is he/isn't he autistic, I've been like that for ages, but the more I've seen him progress the less I'm thinking he is, and when he starts school in September he'll have an IEP and his needs will be met (hopefully!)
sadminster

totally get what you say about everyone fobbing you off for ages about a dc being just a late developer and then next minute saying there are big problems.

I've got it takes two to talk although my ds 3.6 does talk a bit it is still useful. seeing a salt has help to break down the areas where problems are occurring - in ds' case comprehension and enunciation are particularly poor.

and because we spend much more time like other posters speaking, modelling language, commenting rather than asking endless questions he is improving - though he is still very unclear. i'm so happy that he is moving forward again with language tho still v behind peers

One thing I really struggle with is giving him enough time to respond - i can't stop jumping in (this is one of my big probs in real life, i'm too quick to interupt blush
Add message | Report | Contact poster By Tue 07-Jul-09 13:49:41
Having problems staying logged on angry.

Seeing GP tomorrow re referral.

Will be back on line this evening.
my ds was also a visual learner so pictures of throwing ball etc drink cup we had pictures on wall that he could point to for food and drink etc we then verbalised his need back to him everything was verbalised i didnt stop talking all day every day but something must have clicked as he attempted to use more words or at least took it all in to suddenly wake up and speak in a sentence few months later

language regresses when ill or tired and he did have periods of what he'd learnt he wouldn't do any more but it did come back i always said that was his way of knowing it first then shocking us with his new words
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