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Here some suggested organisations that offer expert advice on SN.

Just had first appointment with the paediatrician

(46 Posts)
waitingforgodot Mon 27-Jul-09 12:07:57

She reckons its ASD and says its too early to tell how severe. DS is 3.2 . This is the first time a health professional has confirmed our fears. I am really upset and cant stop crying which is daft.
I dont know much about ASD-can anyone give me any good articles to read to help?

anonandlikeit Mon 27-Jul-09 12:58:27

Hi Waiting, crying isn't daft, its a normal reaction.
Even if the DR has just confirmed what you expected it's still hard to hear.
Did the paed offer a follow up plan or more detailed assessment.
Have you had a look at the NAS website.

There are many weel informed ASD parents on here who I am sure can recommend some good reading.

What about you? Do you have any support? Give yourself time & don't ahve any expectations of yourself, however you feel is OK.
Take things slowly & take care of yourself.
Remember he is still your little boy, he hasn't changed.

waitingforgodot Mon 27-Jul-09 13:05:23

thanks anonandlikeit

Our next appointment is with the SALT and some education people who will assess whether his early years provision is adequate. He will then have to be formally diagnosed I believe. Its a lot to take in.
Feel quite emotional and overwhelmed.

bubblagirl Mon 27-Jul-09 13:08:36

haven't time to write fully now but wanted to say he is still your adorable child its never easy to hear something may be wrong

my ds was dx at 3 and to be honest was the best thing as with the dx came all the help and he has made such huge progress i just know it wouldn't have happened with out the dx

he is still my little buddy and if anything has helped me as i see the world two ways now

dont read into too much or compare children all children nt and asd are all different with some factors the same that we can all relate too

i would just ask as many questions with the professionals never sit back and wait if there taking there time chase it up and ask for advise when needed

remember its nothing you have done or could have prevented they are who they are and are loved very much for it

ask if any sn groups near you they hold play sessions and therapies for children and courses for parents and you will be around like minded people too and of course seek advise on here its been a saviour xx

waitingforgodot Mon 27-Jul-09 13:15:28

thanks bubblagirl

mum2fredandpudding Mon 27-Jul-09 14:25:39

im so sorry to hear this godot. crying is absolutely what you need ot do right now. it will be a hazy week.

teh NAS website is good, plus the pamphlets they should have given you?

in books I liked Stanley Greenspan's ENgaging Autism as a really positive book which gives you an idea of how to engage nad help your DS in everd day interactions. He has a website (google him, he's an ASD guru) which has many articles and podcasts. I know that since me nad dh read that and put a few little things he suggests in place we have seen some good iprovements. I have also begun ABA therapy so book about that are what im currently reading

re: how severe -that confuses me. Ms DS was formally dx'ed at 2.6 and I was told that he was bang in hte middle of hte range and with proper attention had a great chance of becoming HF. And since dx and the attention, therapy and lave we have lavished on him nad the leaps nad bounds he has come in 2 months I have no doubt he will be HF. ANd he's only 2.9!! I would say that the paed is covering their arse - dont want to be liable. 3.2 is young to be dxed nad that is GREAT. THere is so much that can be done. He has a very bright future ahead of him.

ANyway - no time to chat as I would like as I have been wating to hear how things went but just wanted to say im sorry that this was the outcome nad that whilst it is unbearabley sad now, it gets better.

sc13 Mon 27-Jul-09 16:23:29

Sorry to hear about this godot, but to add to the others, it's tough, but it does get better. My DS (3.3) was dx-ed in April, there are good days and bad days but I wouldn't change him for the world!
Keep posting, MN has been a real life saver. Cry as long and as much as you have to; don't try to do everything at once because just absorbing all the information can be overwhelming at first. To read, I like Greenspan's Engaging Autism but everyone here has their faves.
Write and tell us more about your little one if you want.

juliaw Mon 27-Jul-09 17:33:34

Our DS3 diagnosed a few weeks ago at 2.8. The reports are much more bleak than we would have put him but they can only write what they see and he doesn't co-operate with strangers so they did not see what we see. They are definitely not saying my son is HF which upset me and are very reluctant to commit themselves until he is 4 or 5 - but he is particularly difficult to assess because of his non-co-operation. Everything I have read says early intervention can change the outcome and children who seem severe at 2 or 3 can move along the spectrum by 5 or 6. I think my son is more HF than the professionals do but he responds for me in ways he does not for them. If you look at Cerebra website they have a lending library you can use for free - they have some books on ASD. The Research Autism website is also good as it shows the work and research going on about early intervention very little of which is on NAS website. Its taken us 6 months to get a diagnosis and we are about to set up ABA. We wish we had started months ago but its hard to figure out what is around and what is right for you and your family, that takes time especially when you are in shock. What I would say is don't wait until you have made a decision about nurseries / therapies etc everything to do with autism has a waiting list so go and look at everything now and you will have time to decide what to do whilst on the waiting list. Go and see ABA now even if you don't take that further for now. Go and visit any special nurseries and find out more. Get in touch with your local branch of the NAS - other local parents will be the best source of information - especially about schools and nurseries. NAS website has list of courses which you might want to check to see if anything on near you. Also apply for DLA now - we got ours without a diagnosis - Cerebra website also good on this. When you see the speech therapist they might not mention the "A" word unless you do, if they agree autism is likely ask for therapy to start asap not await a diagnosis - if we had not specifically asked we would not have got any therapy at all pre diagnosis. Having said all this, DS3 is still a very easy going, placid, affectionate, funny, clever little boy and his diagnosis is moderately severe autism - you can read lots of stuff which is very frightening, but actually more and more children are having better outcomes - eg alot of stuff I read said that 50% of children with autism will never talk; however with good quality early intervention I now know many treatment centres in the US have got this down to 10%, so I would also say don't believe everything you read or the professionals tell you; don't lose track of the real child in front of you. He is still the same boy he was before and no-one knows him or what he is capable of better than you.

waitingforgodot Mon 27-Jul-09 18:30:31

Thank you to you all for holding my hand today.
A quick question-what is ABA?
I am going to look into the DLA thing tonight as apparently you can do it online.

sadminster Mon 27-Jul-09 18:54:13

Crying is perfectly normal I've been doing it for the past month - we're waiting for our paed referral - ASD has been suggested by the SALTs.

It is is complete rollercoaster - some days (hours) I think everything will be okay somehow & other times I have life long neurodisability ringing in my ears & am terrified of 'non verbal' and 'no independence' and I just feel sick (having a bad moment right now).

I really don't like the NAS site (brings me to the point of panic attack). ABA is a type of educational/therapeutic method for helping children with ASD learn more effectively - there are lots of very useful threads about it here.

I don't know how they assess how badly affected a child is - does it come down to language skills? My Ds is 3 in October & has very little useful language (quite a few nouns) though he points & is quite good at gesturing/shared attention.

We're going to get a BIBIC assessment then look at starting ABA as soon as possible.

waitingforgodot Mon 27-Jul-09 19:35:08

Hi Sadminister. You have it spot on. I am worried sick too and I think thats why I am so upset. The people on this board are the most supportive amazing bunch ever. I am wholeheartedly appreciative of the support and help given to me today so thank you all.

Whats a BIBIC assessment? How do you sign up for ABA?

thederkinsdame Mon 27-Jul-09 20:14:15

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mum2fredandpudding Mon 27-Jul-09 22:15:19

godot - lots and lots of threads on here about ABA - think there are currently 3 or 4 threads on the matter on hte main page as i type. I have literally just started my ABA program and found lots of sound advice on here about that therapy and many others. I agree with sadmister. Time is of the essence so in a week or two when the haze clears, start fighting it. You can do so so so much with early intervention, the future is sunny.

juliaw - i agree that the paeds dx was much bleaker than the reality. He failed to see my DS's enormous potential, his amazing ability to engage and interact. But I dont care about that anymore. I look forward to proving him wrong.

Today, 2 months on from dx I am so happy to have it. Without it I would have my head in the sand watching hte clock tick. Now Im doing something, fighting hard and EVERY day I see my son do amazing things.

dx brings about such a shift in perspective, it inspires such passion and love. It will get better and your DS will come along wonderfully.

waitingforgodot Tue 28-Jul-09 13:28:45

thederkinadame-I saw your post about having another child. Thats a concern of mine too.
Mum2fredandpudding, I will go search for ABA threads. Thanks for listening to my moans and for your positivity.

thederkinsdame Tue 28-Jul-09 22:50:14

waitingforgodot I hopethings are looking a bit brighter for you today.

waitingforgodot Wed 29-Jul-09 10:51:41

I am feeling much brighter and positive today. Thanks! I look back on this thread and think I was a bit self-pitying but I think it was shock. How are you all today?

mum2fredandpudding Wed 29-Jul-09 22:47:07

who me? why thank you for asking

today has gotten prgressively better. DS1 had a bit of a health scare and had to go to hopsital (longer explanation on ABA thread started by sadminster) but is back and in a right cranky mood. WHich is all good and being sick is no fun and absolutely the time to be demanding of mum.

I am feeling good nad positive about DS's future. Im 2 months down the track from you two but have just stared therapy and finally feel like things are coming together and that we are dealing with an issue which has been worring us for a year. So Im good today. Plus I have had a few wines so even better (and perhaps not ht etime to be attempting to post on MN)

waitingforgodot Thu 30-Jul-09 15:40:59

Hi mum2fredandpudding
I read your other post-tough week then? Glad you are positive! Therapy sounds great. The wine sounds well deserved!!!

StarlightMcKenzie Fri 31-Jul-09 09:52:18

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waitingforgodot Fri 31-Jul-09 10:49:12

StarlightMcKenzie
Thank you for your support. I allowed myself one wobbly day and the next day I picked myself up and thought bugger this, I am going to proactively read all about different theories and approaches and decide what my options are. I have started to fill out the DLA form, have registered with Cerebra, have the nursery fighting for one to one assistance and have the health visitor come see me to go over options. Oh and have booked some therapies for ds next week.
As you can see, I am not taking this lying down and I hope to help others on Mumsnet as much as you lot have helped me over the past 4 days. Thank youi all

StarlightMcKenzie Fri 31-Jul-09 11:09:59

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waitingforgodot Fri 31-Jul-09 11:21:07

I'm not sure about Surestart. Will google and find out. Thanks for that. Are the Sure Start centres ru by Social Work Department or did I imagine that?

StarlightMcKenzie Fri 31-Jul-09 19:22:06

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waitingforgodot Sat 01-Aug-09 11:16:54

thanks! Will go investigate. Bought a notebook thingy to keep details of everything so far. Health visitor has offered to help me fill out DLA form which is great.

jemmm Sat 01-Aug-09 11:32:36

Hi WFG,

I'm not sure I'd just go with the health visitor, certainly get her opinion, but look at Carers Resource too - we've just had our DLA rejected, and we're about to appeal - we've spoken to someone at Carers Resource - they're going to help us - the guy we spoke to said specifically that the DWP are "absolutely crap at ASD - they just don't understand it".

So it's brilliant that your HV is involved and onboard - it maybe worth getting a little specific help now to save the pita that is appealing later.

Added bonus Carers Resource, will almost certainly be able to help you with other aspects of help that your going to need.

<waves @ starlight - hope you're ok!>

Good luck!

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