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I want to "assess" where DS2 is before the SALT assessment tomorrow

243 replies

lingle · 16/11/2008 22:22

A SALT more specialised in receptive language delay (probably from an ASD unit? who knows) will come to assess DS2 (3.2) at nursery tomorrow. I know it will be more negative than how I think about him and that's ok - doing her job, etc.

Is there any accessible information that would help me find out what kind of place on the speech centile charts he would now be on if my "mum" assessment is right? I'll probably be a bit down after the assessment so want to think it through now.

This is how I would see DS2 in a "snapshot" right now, (sorry so long). If you remember my first posts you'll see how much things have changed....and I really do think that depriving him of recorded music has made part of the difference. It's like a drug for him!

receptive speech:
DS2 understands everything I say to him about our daily routine. He understands my 3-word sentences ("give a banana to DS1")in context. He can understand simple instructions from a different room ("DS2 come back to the kitchen and put your plate away please" REPLY "ok"). Have told DS1 he no longer needs to use 1 word at a time (DS1 did this instinctively to help) but can use sentences.

expressive speech:nearly 150 "real" words now (I said 200 on here in July - I was so wrong! I was just coaching him! but now it's qualitatively different). About 20 of them verbs with 20 other more "not quite consistent" verbs coming.

combining spontaneously into 2-word sentences with more fluency and variety every day (DH noticed a difference after being away for a week). These are increasingly natural-sounding eg "whatsthematter DS1" when DS1 burst into tears or "mummy got hurt" when I say "ow!" after being jumped on by DS1.

still uses a single word to represent the word he can't think of eg when tired he will use the word "open" instead of "cut". Many examples of this. Many overgeneralisations still. eg his water words are "water" "bath" "sea" "puddle" but all other bodies of water such as rivers, waterfalls, streams, etc are described as one of these or as "splishsploshsplash". So doesn't have a word for everything in his life yet (we live by a waterfall, stream, pond etc)

names family members spontaneously with ease ("hello daddy!"). Starting to do the same for other children. But if DH says "hello DS2" will still say "hello mummy" in reply (overgeneralising again - he used to just repeat and it was hard for him to learn to say my name instead of his own). Uses own name in sentences.

Echolalia fading - appears when tired or insecure or doesn't understand someone. Rare now with me but still uses assertive tone + repeat language instead of "yes". Starting to say "yes" before the assertive repeat but this is very much learned not natural to him.

Understands the basic "who" "where" and "what" questions. Just starting to understand answers to where questions that involve "school" "work" or other places that he can't see. Progressing fast here. Always answers "what can you see?" appropriately. Nearly there with "eat" "hold" and "wear" but still muddles them when tired.

No "why"or "when" questions yet. Progressing but not there yet with "shoes on first THEN park" and other two-event sequences. Understands "it's time to" but still doesn't always understand the description of where we're going next.

Just starting to get to grips with under/over on/off etc. Good with up/down.

Lastly, the grandma test: my mum says "this child talks just as you would expect a two-year old child to" (ie she found his speech pretty "normal" but a year or so behind other kids his age when we spent a week with her).

Other areas. Doesn't initiate socially with (new)nursery peers yet. Passive and quiet there. But joins in any physical game initiated by others (involving bouncing, falling, giggling, etc) with great skill, great care for others' space and excellent turn-taking. Visited "old" nursery friend and they trotted off together up to the bedroom after 10 minutes' hesitation (it was his first time in that house) and did about 10 minutes cooperatively on the train track.

Initiates socially with family and especially brother all the time.
When alone, "role-plays" conversations with brother (hardly sings now! poor thing! his cruel mother wanted him to talk instead! My psychotherapist neighbour thinks I'm terrible!)

Understands all my tones of voice and facial expressions. Understands when I'm joking, cross, playful, teasing, etc from either of these. Switched on and engaged with me at pretty much all times even if engrossed in trains or listening to music. There is no activity I can't join in. Not in a bubble. Not in "own world"

Not the most imaginative child but happy to play along with "doggy" going to sleep, waking up, etc. Pretends objects are other objects. Now pretends to be a "monsta" by holding out arms and making monster noise. Wants me and others to look scared and scream in response. It doesn't matter if we don't run away so he understands the meaning of the game is more than physical. When DS1 is a "monster", DS2 pretends to be scared and runs to me to pretend he needs protecting from DS1 but also laughing.

Fascinated by numbers, loves looking at the second hand on the clock, identifies speed limit signs and traffic light colours all the time. Since the days got shorter, adores turning the lights on and off. Lights on and off is the obsession. Does it about 50 times a day if nothing else is going on . Also flushes the loo about 20 times a day. Will pester to be allowed to do this at other people's houses.

Apologies and thanks to anyone who got this far....

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Tclanger · 19/11/2008 14:45

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lingle · 19/11/2008 16:35

T - so your DH says "children on the spectrum don't have imagination and little T does have imagination therefore T is not on the spectrum?"

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Tclanger · 19/11/2008 17:57

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Tclanger · 19/11/2008 17:57

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lingle · 19/11/2008 19:32

T. It would be nice if the literature your DH read had been more accurate and informative in the first place wouldn't it? I sympathise with your DH here and cannot blame him (and I'm sure you don't either) for drawing a reassuring conclusion and being settled with it.

My DH is really pissed off with the whole intervention thing (and "intervention" is precisely what it feels like - like someone coming between us and our DS2 - I was right to be suspicious of that word) and doesn't even want us to see the paed. He says the biggest risk to DS2 is that all this will change our relationship with him and make our home life less pleasant. Neither we nor DS2 find DS2's language problems stressful at home because to us it seems normal because we had DS1 whose language was almost identical. To me, children who speak before they sing are - well most odd! And now he doesn't have to go to school till five, the idea is that we seek further help if progress stops.

But we will see the paed (DH doesn't know this yet but the mum always wins!) because I want to support those who are supporting DS2 (nursery teacher and let's hope the SALT will come good too - no doubt she means well and has good technical tricks up her sleeve re visual learning and maybe even audio processing). But if it wasn't for that and for reading the posts on this site I would probably agree with DH.

I have bought "More than Words". And I won't be hiding it from DH but I will be hiding it from everyone else who visits the house.

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Blossomhill · 19/11/2008 20:53

I think that like any other children with asd are all so different. My dd has a fantastic imagination, infact it really does run away with her at times. She plays imaginatively and has real, true friends. She is empathetic and understands emotions although finds it harder to relay how she felt when a particular thing happens but can understand how something would make her feel iykwim. However my dd's eye contact can be great with her family and absolutely awful with strangers. However my friends son who at nearly 7 is non verbal and still in nappies has great eye contact. It is such a huge spectrum and affects different children in different ways.
I know so many children with asd's (mainly hf although I do have a few friends who have children lf too) and we all laugh at how different they are. My dd could not go to the firework display recently as she was absolutely petrified of the banging and loud noises but other children with similar difficulties can. I would say I don't know any child like dd and would say the same about many children I know.
The asd dx can seem so daunting and distressing beforehand but once we found out it wasn't so bad really. I think it took me about a year to feel that way. My dd was and still is the same person, nothing has changed except if anything we have had more help and input which has been great. I see the asd dx as a signpost for people to understand my daughter not a branded stamp on her forehead and at the moment it helps people understand my dd's needs and will really help for when we go for our high school placement next year.

Blossomhill · 19/11/2008 20:54

Sorry lingle had to laugh about the speaking before you sing. My dd sang before she could even say hello and even now sings most of the time!

jimjamshaslefttheyurt · 19/11/2008 20:58

DS1 has been singing perfectly in tune since he was 15 months and still does Old MacDonald means you had better watch out- he is cross, although at the moment we're getting a lot of Abba.

Blossomhill · 19/11/2008 21:06

we had "if you're sad and you know it have a cry" when dd was little and upset. Funny how that was her way of communicating dd loves Abba too!
Slight hijack how are you jj? I have been meaning to message you on fb!

jimjamshaslefttheyurt · 19/11/2008 21:09

Stressed today! (ds3 ill, problems with ds1 at school) but otherwise OK. Have been meaning to message you as well but haven't been on FB much! How are you?

Weirdly Lucy Blackman (non-verbal now in her 30's) used to sing Old MacDonald when cross as well which cracked me up.

jimjamshaslefttheyurt · 19/11/2008 21:10

Oh BH I should have told you- ds1 has his first word- Mummy and he now sings "mummy mummy mummy' (money money money) and 'Mummy Mummy' for honey honey. Then he comes and gives me a big cuddle saying mummy mummy which is nice

nikos · 19/11/2008 21:36
jimjamshaslefttheyurt · 19/11/2008 22:18

PMSL - a big favourite is super trouper as well

I need to buy him a xmas karaoke (bought him a karaoke machine for his birthday last year )

Blossomhill · 19/11/2008 22:19

Oh no poor ds3. I know how he feels as I have had a throat type fluey infection for a week and it has knocked me for 6.
You'll have to let me know on fb about ds1, I hope it's nothing too serious! We are having to think about secondary schools for dd (gulp) and I really want either a small private type school or another specialist school but not sure if we are going to get it wihtout a fight but hey ho I will fight if I have to.

Aww that is fantastic about ds1, made my day How proud you must be

sphil · 19/11/2008 22:43

How funny - DS1 loves Abba (favourite song Money Money Money, sung in an Amercian accent for some reason) and DS2 always comes running in with a huge smile on his face when ever DS1 puts it on.

We are having a family Mamma Mia singalong on Boxing Day - maybe your DS1 should come! . Have you thought of buying him the DVD for Xmas?

lingle · 19/11/2008 22:58

lol about our singing children. My DS1 sang unbelievably from 12 months - like a choirboy - you wouldn't believe it (well maybe people on this board would as we've probably seen it all between us!). no words or consonants - just "awa" for about 12 months. No wonder the distant-relative speech therapist we met when he was 19 months old looked so worried. If it was neurological difference (well it certainly was different) not musical talent, that explains so much about his current appreciation of the X Factor and "Joseph" . DS2 has always been a little duller - put "'tar" into twinkle twinkle right from the beginning.

It has been a real eye-opener to learn that DS1 - who has no difficulties with anything except fantasy as he can't imagine being the baddie - is so similar to autistic children. I had almost no idea till I came on this board. I ask you all not to assume that I have negative assumptions about autistic people (virtually all the little I know about autism I know from you) or am a disciple of whatshisname the "Einstein Syndrome" man (who certainly does have very negative assumptions from what I gleaned as I skim-read his book) but to recognise that I am the mother of a 3-year old child who has amazed me since birth by his extraordinary similarities to his brother. My children are like no other children but - and I hardly ever hear anyone else on mumsnet say this - they just seem like delayed twins. We make our cautious assumptions accordingly whilst suffering the anxieties that everyone on this thread knows about and, thankfully, understands. And Blossom thanks for that post - it's good to know that what seems from here like such a frightening alternative outcome is not so bad after all and so he would still be my cheeky-chops.

OP posts:
jimjamshaslefttheyurt · 19/11/2008 23:10

ds1 comes up to me and says "ayee ya" and I have to sing close every door to me. I have video of the pair of us cuddling up and BELLOWING close every door to me .

Or he comes up and says " uh ee uh uh" and I have to sing "potiphar was counting sheckels" although I kind of assume he wants me to sing "letting out a mighty roar' because then I have to open my mouth and looking in open mouths is a hobby.

lingle - I really have no idea whether your son would tick the boxes for a diagnosis or not, but if he does I hope we've made it less scary for you and if he doesn't I hope you remember how mad and funny and human our babies are.

Tclanger · 20/11/2008 07:56

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jimjamshaslefttheyurt · 20/11/2008 08:06

oh dear Tclanger

All I can say really is to go with how you feel - if you feel that there's more to is than SLI then keep at it (unless- the only reason not to imo- you want a place in a language unit which doesn't take children dxed with ASD).

To say that you wouldn't look after him properly if you think he's on the spectrum is utterly ridiculous- I mean what sort of looking after does he think autistic children get or don't get???

I can say that it's not unusual for dh's to be like this. I know someone who had a very hard time with her husband - she said to me by the time he'd accepted it she'd sorted everything and if she hadn't sorted everything then he would probably never have accepted it. DH just refused to process it or think about it much until we had the diagnosis - he did come round slightly before it was given but half heartedly to begin with. As soon as it was official he was great. Another friend has said her dh made her feel as if she was wishing it on their child,

I think you just have to plough on and get the answers you want, then assume that dh is going to get to wherever you end up eventually.

Tclanger · 20/11/2008 08:30

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Tclanger · 20/11/2008 09:11

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TotalChaos · 20/11/2008 09:26

sorry you are having such a tough time discussing it with DH TClanger. Does your DH have bad associations with the Aspergers label due to his experiences with his brother? Possibly that's partly why he's resisting it? It doesn't even make sense his comment about looking after M - as by getting in the private SALT and OT you are looking after the speech/social/sensory areas - a DX would hopefully build on that support in terms of what school/NHS might offer but probably wouldn't change what you are already doing off your own bat.

Tclanger · 20/11/2008 09:58

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cyberseraphim · 20/11/2008 10:06

''as been a real eye-opener to learn that DS1 - who has no difficulties with anything except fantasy as he can't imagine being the baddie - is so similar to autistic children. I had almost no idea till I came on this board.''

It reminds of something I read in a book by George Orwell. He asked a woman who was living in a basement flat with 8 children. 'How long have you been living in a slum?' and she replied 'Ever since they told us' ( Ever since the council told them the flat was officially classified as a slum). The label is only a way to describe what is there anyway. I think you have to be pragmatic and decide what help you want and then try to get a dx that enables you to get it.

kettlechip · 20/11/2008 10:41

agree with Tclanger, MN is a real haven. I had a visit from a lady from our local face 2 face group the other week, she has a child with severe DS, who is mainstreamed locally.

She was lovely, and we had a great chat but she asked me if I'd got any friends in similar positions for more support. I suddenly realised, and said to her that I feel like I get all the support I need from MN, would never have thought that possible a year ago when I'd never been on a forum in my life! I sometimes wonder how many more people there must be in our position but aren't so fortunate as to have found this site..