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Aspergers/ASD support thread
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Aw, I can feel your happiness Dummie and you just keep on keeping us updated too!My second favorite household chore is ironing. My first being, hitting my head on the top bunk bed until I faint.-Erma Bombeck-~ Member of the MSE Celebdaq Minileague ~0
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I'm on such a high :j
The paedetrician's secretary just called and informed us that she had a cancellation and offered us the appointment. It's tomorrow at 1pm. Then 2minutes after putting the phone down, the MDA team co-ordinator (the lady who visited us 2wks ago) called to say she's gotten us a SALT appointment for 19 June.
I can't believe it! The normal waiting list for these appointments are around 3mths. I'm over the moon! She also said the occupational therapist appointment shouldn't be too long but unfortunately the psychologist appointment will take a while to come through.
So,
Paedetrician - appointment tomorrow
SALT - appointment 19 June
Occupational Therapist - on it's way soon
Psychologist - waiting list 3mths
Audiology - waiting list 3mths
Orthoptics - appointment on 4 July
Sorry, the list above is for me own records more than anything else :rotfl: Need to sort my head out to remember the appointments and to remember which one's we're still waiting for. All in all, I think we're doing extremely well. This is moving so much quicker than I anticipated.
Thank you for reading :TDummie0 -
Great news Dummie!
The Paedetrician's appointment is the most important really as she/he will have the power to push for earlier appointments with everyone else if she feels they are necessary! My sons Paedeatrician was the most fantastic lady.....very helpful indeed for both him and me. She pointed us in all the right directions!
Good luck and let us know how you get on!My second favorite household chore is ironing. My first being, hitting my head on the top bunk bed until I faint.-Erma Bombeck-~ Member of the MSE Celebdaq Minileague ~0 -
Just come back from the paedetrician's appointment. It lasted 1.5hrs during which she asked questioned, observed and played with Aidan. At the end she told us that her diagnoses is that he's autistic.
She said that her thoughts are that his primary needs are speech and language theraphy and if and when he starts talking the diagnoses might change.
She referred us to a dietrician and will be contacting our LEA to get him a SEN and to co-ordinate the extra help that Aidan will need in nursery and to educate the staff there on how to work with him. She also questioned whether he might be better off at a specialised nursery but said she will need to have the in-put of everyone else first before putting any kind of recommendation to us.
We have been expecting this so we're not shocked but we are somewhat surprised and disappointed that the diagnoses came so easilyI was always under the impression that Aidan needed to see the whole team and that comprehensive observing and assessing would be carried out before a diagnoses could be made and I think I was personally expecting everyone to fight to prove me wrong
It just seems too simple. Surely diagnosing something as big and serious as this should involve lots lots more. I've no idea what but surely more than what's just happened?
So off I go now to research the educational side of this. SENs, statements, our rights, our options.
Oh, when I dropped Aidan off at the nursery this morning, the teacher pulled me to one side and showed me an IEP for Aidan. I asked if all children got one of these and she said no. Only those who need the extra help.Doesn't the IEP usually come AFTER the statement of SENs? It looks like the nursery has taken it upon themselves to do this without any promting? Is this usual procedure?
Thanks for reading.Dummie0 -
Hi Dummie,
I'm new to the forum but have been reading my way through this post as my 6 year old son is autistic. I am absolutely stunned that your Pead. has diagnosed autism after spending a couple of hours with your Son. Our diagnosis took a year of multi-disciplinary meetings and observations in several different settings.
Out circumstances are a little different as we live on the Island of Guernsey. However my Son doesn't have a Statement but does have an IEP. I'm sure the IEP was a bit of a shocker but it shows the nursery are taking the situation seriously and want to help you and Aidan.
By the way my Son could only say about 10 words at 3.5 and now at 6.5 can speak fairly well (admittedly in a different way but he is pretty chatty now).
With a diagnosis you should be able to get financial assistance - again it's different here but I'm sure the other posters can help if this is of interest.
I remember clearly the day I received the diagnosis. If there is anything I can do then please PM me.
Best Wishes,
SezzToxic & Tired - Starting 2010 afresh :beer:0 -
Dummie I am sorry to hear the diagnosis.
Please don't let this get you down, be positive that a diagnosis has been make earlier rather than later and just go all out to get the help Aiden deserves and needs. Yes you probably will have a fight on your hands but go at it with all guns blazing and don't take "no" to anything as an answer! Parent Partnership are within your borough to help parents with anything educational so please make use of them if you need to. Get Aidens statement sorted out (PP will help you here!) and then he will have his one-to-one help with his education.
I am pleased to know he has an IEP already, this hopefully means his school are on the case and will support you all along the way!
Join the National Autistic Society and get along to their local support groups, you will find support in these meetings for yourself. My local group has pamper evenings and guest speakers to guide you through things.
Most of all, good luck and you know where to come if you need support!My second favorite household chore is ironing. My first being, hitting my head on the top bunk bed until I faint.-Erma Bombeck-~ Member of the MSE Celebdaq Minileague ~0 -
Been following this thread (and had a rant about vit D on an associated thread!) - but although a diagnosis of autism might seem to be a bad thing, it has to be better than the last 6 months of just waiting and not knowing! Now he can ge help with things and you can get support too. I'd also take the nursary's actions as a positive thing - they want to help too! Hope the dietician visit helps.
There's lots of us thinking of you and Aidan! hugs!:happyhear0 -
Dummie - I wanted to post and say you are a fantastic lady. <p> <p> I had the same fight for diagnosis as you last year, only I had to wait til my son was 7.
You are doing a great job and you son is very lucky to have you.
When my son was diagnosed I got depressed too, even though I knew what was wrong in my heart since he was about 18months. It took a while to readjust how I looked at everything. My lightbulb moment was when I realised that that aspergers was like xmas presents - one is the most fantastic gift, it's perfect and the other is a piece of tat from a poundshop. But you cant have one without the other and you have to learn to love both gifts and show them off together (sorry if its waffling), my boy wouldn't be who he is without his aspergers and I wouldn't change a thing about him.
Just wanted to wish you and your family wellProud to be sorting my life out!
2007 YouGov £7.50
2007 Pigsback £10.45
2007 MT Credits 28
2007 Credit union £100 :j0 -
It's been some time since I've last posted.
We've come a long long way. So far we have seen the paed, the SALT, the clinical psychologist and orthoptics. Still waiting to see the dietrician (8 Aug) and audiology (19 Sept) and the occupational therapist. We've been very lucky as they put us at the top of their priority list and have offered us last minute cancelled appointments.
Everyone is in agreement with Aidan's ASD diagnosis. The paed and CP both recommend that Aidan attend a specialist autistic nursery which is about 1/2hr drive away from where we live. They are getting the ball rolling for us on that one and if they do have any space, we might be able to start in Jan next year when he is 3yrs.
The SALT tried to brush us off and wasn't really willing to do anything until Aidan turned 3yrs. Luckily, when I mentioned this to the paed and CP they both expressed their concerns and said they will be pushing for more to be done. I think they are keen to start Aidan on PECS.
I've got a portage working coming to visit (9 Aug) and I've just enquired about the NAS Earlybird program.
The LEA has been notified and we've been referred to a educational psychologist but we're still waiting to hear anything further.
So lots have been going on. My mind is spinning with trying to keep track of everything and everyone and trying to make sure I'm prepared for each appointment so that I ask the right things etc.
Aidan has been described as having significant social interaction difficulty and moderate learning difficulty. His IQ level is that of a 2yr old so only 6mths behind. His receptive language development is that of a 12-18mth old (1-1.5yr behind) and he's not yet talking.
We've still working with him at home and he points and makes noises now when he wants something. We're now working on eye contact but this seems to be taking longer for him to understand. We're also experiencing problems with him not generalising what he's learnt. For example, he'll point and make a noise for stuff he wants when he's at home but doesn't understand the same can be done at nursery or when we are out and about. So it's likely that any new skill will need to be taught repeatedly and specifically.
Where Aidan used to be totally silent just 9mths ago, he's now found his voice and certainly knows how to use it to let us know his fraustration and displeasure. Tantrums are now part of everyday life but I can't complain. At least he's trying to communicate with me. I'm usually OK if this happens at home but get really stressed when we're out. People just stare.
So, that's everything so far. Just wanted to up-date those who I know are thinking about us and to also offer some kind of hope or information to anyone who might happen to come across this thread in the future with the same concerns I originally had not so long ago.
Thank you for reading. I don't know how I would have gotten through these past few months without everyone here who's been such an overwhelming source of support, strength and encouragment. THANK YOU. THANK YOU. THANK YOU.Dummie0 -
I am so pleased everything is ticking along Dummie!
Well done you for getting this all sorted out and being the wonderful mum that you are.
Hugs xxMy second favorite household chore is ironing. My first being, hitting my head on the top bunk bed until I faint.-Erma Bombeck-~ Member of the MSE Celebdaq Minileague ~0
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