Autism Diagnosis

[Lillypond]

Hello ladies

Some of you might remember me. I used to post under the username jenkins88, but changed it a few weeks ago because I felt that all my posts were so depressing and neurotic, and I was starting to think that DS would be okay after all.

I've had such a horrible day today. Took DS to Dev. Paed. for his second assessment and she diagnosed him as autistic. She said that he was at the milder end of the spectrum but would need lots of help during his school years. She's also going to test for Fragile X syndrome although she doesn't think it's likely.

I feel completely shocked, gutted, hopeless. After she gave her diagnosis she talked alot but I couldn't follow what she was saying. My throat was aching because I just wanted to break down and sob, but I was shaking and I felt like I was going to faint. DS just sat and looked at me and she said 'Is that how he normally reacts when he see's people cry'? I nodded and then she gave the student a kind of 'knowing' look.

I cried all the way home. Took him to nursery and told the teacher and started crying again. I feel like I'm never going to be able to speak to anyone ever again without crying.

I'm not ready to accept this and I don't really beleive her. This is all so nightmarish.

What do I do now? She did mention the autistic society but I just want to speak to other parents who are going through this or have been through it.

Sorry if this a big ramble. I'm not really thinking straight at the moment.

hello lilly pond, hope you are feeling ok

I just thought i,d let you know of my DS experience with IQ tests.

We were told back in april that DS was probably on the spectrum and are still waiting to be seen by the CDC.

To save time the child psychologists carried out the IQ tests on DS.

They were done over 2 afternoons.
DS really enjoyed them and when they finished wanted to start them again!

We were astounded when we got the results.
He scored in the very superior range for his age which is 8.

The psychs made the tests into a sort of game for him and i would say that we made the right decision to have them done-but thats only our opinion.

HTH

Homsa - feel free to hijack. It's a good question. We are really struggling financially at the moment and aren't really in a postion to fund much on our own. My plan has always been to return to work part time when DS started nursery (he started on Monday and was diagnosed on Tuesday), but TBH I don't think I could cope with it at the moment. It's been playing on my mind alot over the past few days. Realistically I know I have to return to work to be able to fund anything, but don't think I'm particularly empolyable at the moment in my state of mind.

I hope your DS's next asmt goes well and good luck with the move.

Hi jenk - Well done to your DS . He's obviously a really smart boy.

I haven't really thought about IQ tests properly yet. DS has to have a blood test next week to rule out Fragile X and he's having a FISH test. Does anyone know anything about these?

I'm curious about the IQ test because it would be nice to see what his potential might be, but at the same time horrible if he scored very low.

I'll wait and decide if and when it's suggested to me by his Doctors.

Hello Lillypond.
Thinking of you a lot.
What mama says is very true/Things arechanging so fast in the world of SN and ASD (although not fast enough for some of course).
I hardly recognize what is happening now to what was happening when I started work as a SALT (10 years ago this month!)
Things are really gaining momentum.

Just thinking about what you said about Liam singing 'Head&Shoulders'. That's lovely,really encouraging.I would get cracking on a written diary straightr away. Don;t ask them to do it,just buy a notebook yourself and tell them that you will be sending it in every day with a line or two about what he has been up to,how he is feeling,who he has seen and so on,and would they do the same please?

It is so important that precious snippets of information (like what he enjoyed singing) are not lost due to communication difficulties in a child. They must be seized upon and expanded.

I think your idea of keping a list of ideas/resources is great too. You will probably be ready to tackle the picture diary in a few months. The other kids will be envious-it always happens when I make one for achild.The others get quite cross and want one too lol!

Had a look at your resources thread and some very sound suggestions. Boardmaker is similar to Widgit.A lot of my colleagues love it,but I haven't used it yet.

Does Liam do a lot of physical activity btw? I have found that this really seems to drive off a lot of the frustration my dd experiences,so we do an awful lot of swimming and walking and trips to the park (last is bloody boring for me,so I always take the paper!)
She has also started riding (expensive I know unfortunately) and is coping well with the concrete language of instruction.

Hope you have a good day.

I haven't got time to read or post properly, but £50pa?????? who was this for? I pay between £7-£9 in London!!!!

Sorry for Hijack. Do you thin ABA would be good for dd????

£7 and £9.00 I dont believe it. Well i was majorly ripped off then. I am defo sending a letter. He is part of a charity which sort of has a monopoly in my area. He has a phd (big deal) So does my granny! But i guess he thought he was worth it. I sure didnt. In fact we spent 1 3/4 hrs just talking about aba and not actually doing anything.

Can any of you suggest where you would get an aba knowledgeable person to help?? I tried the universities but they arent allowed to let their students practice until they graduate.

Hi mizmiz

Had a really indulgent day on here yesterday looking through all the things you suggeted. I've ordered a Winslow Special Needs catalogue and emailed Widget and asked them for a catalogue as well. I spent hours on the 'Inclusive Technology' site as they have SO much. I'm gonna ring them tomorrow and ask for a catalogue.

Widget do a package called 'Communicate in Print:2', that I think DS would really benefit from. It's got all the rebus symbols in black and white and full colour, and according to the description you can make your own worksheets and activities etc. It's £89, so much more affordable than Boardmaker. Has anyone used it?

I was discussing the communication book with DP this morning and we both feel that a lot of opportunities are being missed to help DS communicate. I'm going to write her a note and leave it on her desk tomorrow, asking her for a chat one afternoon after nursery. Then I'll bring up the communication book and ask how he's doing in general. I really need to know about things like toilet visits. He can't manage all the stages of undressing etc. on his own so I help him at home and I'm worried that he's trying to ask for help and they are not understanding him. A couple of times when I've picked him up he's been absolutely desperate but won't let me take him into the toilets in the nursery. I'm wondering if he's been told off for wandering in there and is now confused about what he's supposed to be doing. So I think the communication book is going to be essential for dealing with issues before they become major problems. I really wish I could just take the book in tomorrow and tell her what it's for, but I am a complete wimp with anyone in authority .

DS loves physical activity, especially rough and tumble, running, jumping on his mini-trampoline etc. I don't know whether it's autism related (sensory maybe) but he is extremely senstive to heat so we have to be careful that he doesn't over-do-it. He's been like this from birth. He was born in January and I can remember when he was a couple of weeks old putting him to bed in just a vest and one blanket because he would sweat so much. He still sweats alot but gets very red in the face as well so we have to integrate activities with lots of breaks and drinks. He won't sit down in the bath unless the water is cold and hates coats and hats.

Thank you for thinking of me. It really means a lot.

mmddww, posted more on the other thread, no help after 2 mos.
Lilypond, also posted on the autism resources thread.

Hi Lillypond.
Just been looking at Communication:In Print in the Inclusive Technology catalogue.Haven't used it,but I know they're all pretty similar.

The great thing about Writing with Symbols is that when you write out a word (eg 'cat') a picture of a cat automaticallly appears.In fact,you will have a choice of cats to choose from.
This means it is fantastic for writing out song waords,important sentences,making visual timetables and so on.You can also slot in your own photos too,so could technically write 'Lillypond' or 'Mizmiz'and have picsof you and me! You can also choose not to have picturesfor words so,for example if I am doing a written version of a nursery rhyme,I can control how many and what kind of pics (and what size) will appear with the words.

I have even written an incredibly simple 'idiots' guide' to 'Writing with Symbols' as I know that many people (like me!) freak at the sight of a computer manual (zzzzzzzz)

You or anyone else is welcome to a photocopy of it.

Hi Mizmiz

Writing with Symbols does look good, but the price is a bit scary. I keep flicking between the two programmes trying to work out which one suits DS's needs the most.

I decided not to write his teacher a note in the end and had a chat with her before nursery today. It didn't go particularly well! She was happy to talk until I mentioned the communication book. She said that she had informed the SENCO of DS's DX and felt it was 'inappropriate to discuss this without the SENCO's input'. FFS It's not much to ask from her is it? Then she really got up my nose by saying 'I've taught autistic children before and if Liam is on the spectrum then he is only mildly so'.

I was finding her comments very encouraging last week, but I really don't feel that this is her expertise, or place to pass judgement. I've been ranting all day.

I'm going to leave it to the end of the week and if I haven't heard anything I will write to her and request a meeting. It would be helpful if the SENCO was there but not essential at this stage. I've also wrote to DS's SALT as I'm not sure if she would have been informed.

If I do decide on Writing with Symbols I will definetly appreciate a copy of your user guide. Thanks so much for offering - without it DS will probably have left school before I figure out how to use it.

LP,I know the price seems scary,but I assure you that it is mine (and many other people's most important resource to use with people with comm. difficulties. I couldn't do my job without it.

Sorry the nursery teacher was a bit off.Maybe she just wants to make sure you are all in agreement? Unfortunately,there is often differences of opinion between all the different factions. Health and education are traditionally old enemies lol!

Maybe write out what you are thinking of doing over the next 18 months or so and discuss it with the salt?

eg

Written communication book
Picture communication book
Visual timetable
PECS course

and so on.

You could see what she thinksand then decide on a timeframe.
I find my biggest stumbling block is as mundane as the practicalities of who does what in terms of picture/symbol preparation,book supplies and so on.
People generally like the ideas,just don't like the drudgery of the preparation.
The hours of my life I have spent printing,laminating and velcroing!!!

I don't mind it though-quite soothing.

The nursery teacher sounds like a nightmare tbh. Sometimes a little knowledge can be a dangerous thing IMHO. Some people who have worked with/met a child with autism presume that all children on the spectrum are the same. They're not!

I use a visual timetable for ds2 (2.7yrs) and ds1 (5yrs). Ds2's SALT is very good and prints out copies of any symbols we need so that we don't have to buy any packages.

Ds2 started at a mainstream pre-school this term and the SALT and SENCO are working together to set up a visual timetable for him there. This is also one of the targets on his IDP/IEP. The SENCO should now be setting up meetings for you, the nursery staff and any professionals involved to set up IEP targets for your ds. This would be a good time to bring up the dressing and toileting problems ds is having at nursery.

FWIW my ds1 was unable to dress or undress himself until he was in Reception. The staff were happy to give him plenty of encouragement to do it for himself but were also more than willing to help whenever he needed it. I also have a strip of symbols to help him put his clothes on in the right order. Each time he puts an item of clothing on he is allowed to put the flap down over that symbol and then move on to the next item. We've started using this for ds2 as well now.

Hi mizmiz and coppertop -

Mizmiz, hope you don't mind me still going on about software, but I'm a bit confused. I'm pretty sure that WWS would be a better overall product than Communicate in Print, but just wondered whether you could clear something up for me. As I understand it WWS has all the rebus symbols (but in black and white) and all the PCS symbols (some colour, some back and white). Whereas Communicate in Print has only the Rebus symbols (but in colour and black and white). I'm just wondering how much of a difference this would make. Is it a big advantage having both sets of symbols? Also are colour symbols likely to confuse someone with communciation problems? I think DS would be more drawn to the colour symbols but I can imagine it causing problmes with deas such as: a car, not a green/red/blue car, just a car. I hope that makes sense . Sorry, I know you haven't used Communicate in Print, but would appreciate your opinion on whether using colour encourages or confuses. Hope you don't mind.

Coppertop - I like the idea of having a strip of symbols to illustrate getting dressed. I'd also like to do this kind of thing for toilet visits. Congratulations on your pregnancy BTW

Awww! Thanks, Lillypond.

You ask away lillypond! HTH and not working at present so its fun to think about these things.Getting things right now will same so much energy and really set Liam on his way to frustration free and effective communication.

I don't use Rebus that much. Some of it is a bit complicated in my view. I just love the WWS symbols. Not remedial looking at all iyswim!If you need a picture of a specific thing (eg car or toy),you can slot in your own photo easily.

I don't think colour would confuse your ds at all. Sounds like he has grasped all these early picture skills form what you say.
Would benefit most kids,apart from those still struggling with the concept of a picture (in which case we are talking about severe learning difficulties.)

Someone at the catalogue will be happy to advise you. Ask for Ian Wedgewood-think he's still there. Lovely guy.

(Must stress that I am just giving you general pointers and stuff to think about.This stuff needs to be discussed with someone such as the salt who knows your lillte boy.)

Mizmiz - thanks so much, I've really appreciated your input.

DS's salt phoned me yesterday and she is going to try and see him again in October. She thinks a visual timetable would really help him. She has seen DS at his worst and understands the problems we have with tantrums because he doesn't understand that CBeebies isn't on all day, and he can't go to school at bedtime etc. She has offered to print out symbols for all the basic activities, such as brushing teeth and nursery to get us started. She said that she'll give us some ideas about how to make it into a timetable at the appt.

As soon as I can afford it I'm going to splash out on WWS. Hopefully DP will buy it for me for Christmas .

Great news Lillypond!
Keep me (and everyone else updated!)

I certainly will mizmiz.

I'm so sorry - I completely forgot that your DD had an appt/asmt on Monday and I've been bothering you with all these questions about software . I hope it went well for you both

Hope it all went well Mizmiz

Thanks girls!
Wasn't too bad at all. Dd did some stuff and not other things but my 9 page report that i had prepared earlier and given to the paediatrician (who I know professionally) seemed to answer all the questions raised.

Good news was that she agreed with the language disorder diagnosis and will mention this and her recommendation that she be considered for a language unit place next September so I'm happy.

(Pleased with myself too that I managed to discuss all of these things without breaking down. I am apt to be rather emotional but kept it together completely.)

Oh that's great news. I'm really pleased for you both

There is a language unit at DS's school and I'm hoping that he'll get a place next September, although I think I've read that they don't normally accept kids with an ASD.

I hope she gets her place though.