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DX meeting tomorrow and nervous

39 replies

claw3 · 22/06/2010 22:08

Have Specialist SALT report and was wondering whether you would consider ds's difficulty mild or not? High functioning? it reads

Attention and listening skills

Ds was described by his teacher as being able to focus in the classroom, however on a 1:1 basis, he seemed quite agitated and moved around a lot on his chair. Within the class, he was observed to call peers to focus their attention.

Verbal comprehension

Ds is a little boy who is often confused by instructions and explanations. He is able to respond to simple questions about what is happening but finds it difficult when these questions involved any kind of inferring or deducing of info. He has some early concepts established including first and last but other more complicated time concepts such as before and after are not yet established. He has difficulties understand pronouns. Additionally, it was noted that he had some specific difficulties in understanding emotion based vocabulary and was unable to label. On many occassions, he seemed quite confused.

Expressive Language

He had some specific difficulties with sequencing ideas even at quite a simple level eg sequencing three pictures. This was also reflected in his ability to relate a narrative. He has some specific difficulties with vocabulary and often referred to things tangentially eg "13 one's candles" His output in general seems to involve quite simple sentence structures, often with quite muddled ideas within them.

Ds tends to talk in quite a lot of detail about topics in which he is interested, particularly ideas such as star wars.

Speech Sound Difficulties

Ds has some residual speech sound difficulties with blends and more complex high level sounds.

Non verbal Communication Skills

Ds eye contact was reasonably good when he was initiating communication with an adult but was not consistent with an interaction. He used nodding and gestural communication within his output.

Social interaction skills

Within a conversational context, ds was able to initiate some ideas, giving info about his grandmother etc he was able to cope with simple questions and a back and forth conversation involving a couple of different turns. However his conversation skills remain quite limited.

Within the classroom context, ds's teacher reports he is not a loner, however on the occasions that he was observed, it was notable that his communication attempts wre not directly specifically at other children and therefore missed by them.

Within the school context the following were observed.

Talked repetitively about some topics ie star wars

Ds is engaged in some repetitive behaviours eg rubbing his chin and mouth causing sores. There was also eye twitching observed and rocking within the assessment.

Some repetitive hand movements.

What kind of help should i be asking for, tips please?

Feeling nervous, his future is in my hands and i want to get this right

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justaboutblowingbubbles · 22/06/2010 22:21

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BigWeeHag · 22/06/2010 22:22

He sounds similar to DS1.

I have been referred for training for me, we have been referred for outreach support (they will come and give us timetables ), referrals to community paed for sleep and toileting issues, some arse kicking for OT and some for SALT. But I didn't ask, that is what was offered.

Hope you get the outcome that will help you both xx

claw3 · 22/06/2010 22:27

Bigweehag, what dx does your ds have?

Justabout, im so used to dealing with incompetence from experts, im fully expected to be offered a visual timetable! I might be pleasantly surprised, EP will be there, then again i might not be!

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claw3 · 22/06/2010 22:30

Does ds sound like typical high functioning ASD? What is high functioning and what is not?

I have nothing to compare it to.

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BigWeeHag · 22/06/2010 22:30

PS, DS1 has been diagnosed with ASD but verbally the paed said HFA.

TheArsenicCupCake · 22/06/2010 22:45

Claw.. Not a lot to offer to you.. Tomorrow hopefully you'll get some answers.
Be ready to feel relief, worry, sadness, guilt, worry, relief mixed with a big brick. ( it doesn't seem to matter how much you expect the dx.. It still happens when you get it)

take some tissues and have some alone time after.. You might need it.

Thenafter you can really get started on knowing how to help him. X

claw3 · 22/06/2010 22:56

Thanks Arsenic, ive heard lots of people say that you cant prepare yourself, no matter how much you think you might have done! It all just seems so final.

They have already given a verbal dx of autism, this is to decide 'whereabouts on the spectrum'.

Do you get the 'paper' dx there and then or do they send it?

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Goblinchild · 22/06/2010 23:29

When we had ours, they sent it to me and asked if there were any personal bits I wanted removing before they sent it to the school. There were a few facts I asked to have edited, the school didn't need to know all of the family's past history.
Then I got a copy of the edited report as well, and they sent that one to the school.

TheArsenicCupCake · 22/06/2010 23:37

Ours was sent same as goblin

claw3 · 22/06/2010 23:48

Thanks Goblin and Arsenic.

Does anyone know what the difference is between high functioning autism and autism?

Obviously i know there are more severe cases and less severe cases, but what is the deciding factor.

Is it communication, speech delay etc, where is the line drawn?

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Goblinchild · 22/06/2010 23:51

I've always seen it as autism being the line, and HFA being a point on that line. Or several points.
The opposite end used to be known as Kanner's, don't know if that's still the correct terminology. One of the best things you can do is keep talking to parents in the same situation.
That's how you find organisations, advice on how to access and what you might need to help your child. It's also where you get the knowledge to bite professionals in the arse to make them function effectively.

claw3 · 23/06/2010 00:05

Thanks Goblin, i suppose ds is high functioning in some areas, but not in others.

Im just trying to decide which i feel fits him best, shame there isnt a medium functioning autism!

He has an advanced reading age for example, but its his understanding of what he has just read that is not advanced. To him its just looks of single words on a page, rather than a story iyswim.

His eating, toileting skills are definitely not high functioning.

He has an high IQ, but he cant apply that same logic in daily life. For example he is scared of food being near him.

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TheArsenicCupCake · 23/06/2010 00:33

It comes down to language delay and IQ .. I believe... Where that line is I'm not actually sure.
Ds2 is asd spectrum ( aspergers.. Although they are getting rid of aspergers and asd is going to be called asc.. )
as and hfa can it seems be almost one and the same thing.. And stratagies seem to be the same. ( I'm trying here to remember what I've been told and read).

If there is a language delay it is more likey to be typical autism.
However ds2 although he spoke words and sentances at an expected NT age.. His communication skills are pants, and the way he uses his language is basically odd.
Eating and toileting for your ds, could be to do with sensory issues.. Hyper/ hypo.. Reading but not understanding the words is common . ( although we have the opposite problem as ds2 is also dyslexic in nature).

StarOfValkyrie · 23/06/2010 00:34

claw Try to avoid HFA as a diagnosis, but make sure 'very capable' and 'academically able' is there instead.

Say that you think he is too young for that kind of prognosis. It isn't the worst thing if they do, but sometimes you have to battle harder for services, as people interpret as meaning not many problems, which is often the opposite.

And good luck. It will no doubt be draining, but it is a necessary hurdle and it will be over in less than 24 hours. Good luck again.

claw3 · 23/06/2010 01:12

TheArsenic, yes definitely sensory issues in many areas.

Star, exactly, high functioning gives the impression in all areas. Seems silly that HFA, means a child is verbal, but struggles with every other aspect including being verbal.

Also seems to go against all my protective instincts, to let a room full of relatives strangers tell me what is 'wrong' with my ds and label him.

Part of me feels, why is this necessary. Just so someone can tick a box and access help, that should be readily available without a label.

Oh well, for the greater good and all that.

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claw3 · 23/06/2010 01:26

Anyhow thank you everyone, im off to bed.

By 11.30 tomorrow i shall have the verdict.

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fightingtheLA · 23/06/2010 06:40

Claw at least you will know after today and can carry on getting the best help you can for ds. New school sound great so I'm sure ds will start benefitting from that and be a lot happier. Haven't had our dx yet but I can imagine how you'll be feeling. Take care.x

StarOfValkyrie · 23/06/2010 09:22

Thinking of you claw. Hope it's going okay and you're not too tired from the late night.

debs40 · 23/06/2010 09:43

Good luck for today Claw. Let us know!!

justaboutblowingbubbles · 23/06/2010 10:12

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StarOfValkyrie · 23/06/2010 12:10

Hope you're having a nice lunch, - with wine!

(probably unreaslistic but I hope it all the same)

claw3 · 23/06/2010 13:15

Drum roll...........general ASD dx. They did not mention HFA.

Myself, DP, new SENCO, CAMHS, EP, Paed, and specialist, observed SALT interact with ds (which was taped and we were not in the same room)

Ds behaved typically, lots of fidgeting, scratching his skin, limited interaction etc

Myself and DP were then asked to go into the room and interact with him while SALT left the room for 10 minutes.

Comments after that it was noticed that the anxious behaviour decreased while interacting with us.

I resisted the urge to pull up my dress and moon them through the 1 way mirror

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claw3 · 23/06/2010 13:18

Star, no lunch or wine! Dp left with ds after the observation at 10.30.

Dp has now gone to the pub with his brother to watch football boo!

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StarOfValkyrie · 23/06/2010 13:25

Oh Claw, thank goodness that's over. It sounds to me like it wasn't so traumatic. How's ds, is he okay after all that?

If you're anything like me you'll be both relieved because the path ahead will be a bit easier and shell shocked that your secret hope for it all to be a horrible dream is over.

I sincerely hope that you'll now start to get some decent provision and some sensible input. Don't lower your expectations just because things aren't as bad as they were though. Still keep pushing for your little man. He is so lucky that you never gave up on him, or left the nonsense unchallenged. I hope this helps you all to move into a more positive world!

silverfrog · 23/06/2010 13:44

oh well done claw - you got there in the end (and very and that there had ot be an "in the end" tacked on there!)

never mind mooning htrough the mirror - are oyu now going ot send a "told you so" letter bomb to old school?

great result, and agree - now yu can start getting the services your ds needs.