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Long vent - fear/uncertainity/disgnosis

27 replies

sadminster · 03/07/2009 00:17

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

OP posts:
sadminster · 09/07/2009 22:04
  • 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.

OP posts:
lingle · 09/07/2009 23:04

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.

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