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Recent Asd diagnosis Ds1

(21 Posts)
BeauticianNotMagician Sun 25-Oct-09 13:58:41

Hi just before ds1 started school in september he was diagnosed with autism.Im really struggling at the moment and find myself in complete denial thinking that maybe i have imagined it all.Is this quite common after diagnosis.I just dont know where to start i have looked at NAS website and been on here before to talk about it but its only just sinking in now.

logi Sun 25-Oct-09 15:09:29

hi,my son was dx in september and i still find myself having days where im really upset i rang the NAS and they sent an information pack which was interesting,i cant offer much advice but can just say i know how you are feeling.

StarlightMcKenzie Sun 25-Oct-09 16:21:07

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BeauticianNotMagician Sun 25-Oct-09 17:57:12

Starlight I had a feeling before ds1 was diagnosed as well yet it still came as a shock.What is the parental diagnosis?I had a appointment last week for just me to ask any questions but can you believe i could hardly think of any.I had his letter of diagnosis this week as well which says he has Autistic Spectrum Disorder and that the main problem areas are social and communication with some sensory issues as well.

My mum says he will grow out of it and my friends say 'oh but he isnt that bad is he'.

I over think every little thing he does and i have been told to remember he is still the same little boy as before but its hard.

Im glad i posted as i just needed to know how im feeling now is normal.Im quite lucky in may this year i started work in a nursery and i really keep meaning to ask the special needs teachers there for any advice but at the moment i feel it almost impossible to say it out loud its difficult enough typing it.

BeauticianNotMagician Sun 25-Oct-09 18:00:03

Also ds1 has started putting things in his mouth constantly just recently be it his hand or an object every time i look at him there is something there is that anything to do with asd.Im worried he is going to choke.

StarlightMcKenzie Sun 25-Oct-09 18:15:14

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notfromaroundhere Sun 25-Oct-09 18:16:15

My DS1 was DX with ASD last December and it hit me hard despite knowing a diagnosis was likely. I think it's normal to question it; thinking privately your child has difficulties is one thing, but having it confirmed is another. It took me over 20 mins to reverse out of the parking space as I was such a state.

A member of the team who DX DS1 called me a couple of times in the week after his DX and this did really help - may be worth you getting back in touch with them even if just to mull over your thoughts.

10 months down the line and the sting has gone out of it - I do have occasional pangs where I worry about his future but it's no longer raw. We've got the support he needs in place at preschool and are getting statementing and schooling sorted atm so now there seems a real point to the DX.

Has a referral been made for a sensory assessment to be done by an OT? I found that very useful and insightful.

Go easy on yourself

StarlightMcKenzie Sun 25-Oct-09 18:19:28

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notfromaroundhere Sun 25-Oct-09 18:21:30

Ah yes the mouthing, my DS1 never did that as a baby but went through a phase of it a few months ago. He was vv over-sensitive in his mouth but as that has lessened thus the mouthing started.

BeauticianNotMagician Sun 25-Oct-09 18:26:40

Thank you Starlight BIBIC sounds like it would be very useful.

Ds is in a lovely mainstream school at the moment the teachers have been very supportive but im not sure its the right school.A schhol in my area has recently had an autism specific unit added but he would need a statement first.

Does your ds have a statement?I understand this can be a very long process but i need to know im doing everything i can.

BeauticianNotMagician Sun 25-Oct-09 18:33:06

Notfromaroundhere whats an OT sorry i still get confused on here sometimes.

Do either of your ds's have siblings as although ds2 is NT he copies a lot of ds1 behaviours especially this mouth thing.Starlight i agree it is very unpleasant ds1 wants to lick everything in sight and it makes me feel ill.

StarlightMcKenzie Sun 25-Oct-09 18:46:52

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StarlightMcKenzie Sun 25-Oct-09 18:50:24

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BeauticianNotMagician Sun 25-Oct-09 19:03:15

Starlight im glad you told me that about requesting the assessment myself as the school are very keen to get this done.So the first thing i need to do is prepare a letter to request an assessment.I think after the half term would probably be the right time to approach the SENCO at work.

Good luck with your proposed statement im sure you will be on mn to tell us all about it.

I havent too many appointments to log since dx so far just the initial diagnosis and then the further appointment for questions.Ds1 will be recieving more SALT as well soon as although speech has improved he has started to stutter during the last six months.

StarlightMcKenzie Sun 25-Oct-09 19:08:13

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StarlightMcKenzie Sun 25-Oct-09 19:11:05

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notfromaroundhere Sun 25-Oct-09 19:34:08

Sorry OT = Occupational Therapist. The referral for a sensory asssment was done automatically after his dx, possibly because of the set-up here (Mid-Essex)an OT was part of the ADOS team that dx'd DS1.

We are just at the beginning of the statementing process and have STeam Around the Child meeting 2 Nov where all the Professionals involved with DS1 plus preschool and me and DS1's dad are getting together to allegedly get everyone uptodate so that the statementing goes smoothly. I will believe it when I see it though!

I have a DS2 who totally hero-worships DS1 and practically copies his every move but his interaction and understanding are over-whelmingly NT so it just copying (but still annoying!).

BeauticianNotMagician Sun 25-Oct-09 19:51:36

Thank you both for all your advice i feel much better now as i have something to focus on with the statement i know it will be a battle but i will make sure im prepared for it.

BeauticianNotMagician Mon 26-Oct-09 15:25:05

Sorry another question.Have either of you applied for dla as im not sure whether to bother or not it just seems like it may be yet another battle from what i have read on here.

notfromaroundhere Mon 26-Oct-09 17:56:05

We did apply for DS1 but were turned down - this was despite having help from a charity completing the form and the Cereba guide plus reports from SALT, Paediatrician, OT etc. He was turned down due to having no behavioural problems at preschool. I was very hmm about this as although he doesn't lash out there he is overly-passive and has 1.5hrs 1:1 support per session. Apparently because he was only going 2 sessions a week when we applied they took the 3 hours support he got and divided by either 5 or 7 and thus this works out at less than 1 hour a day so doesn't count(!).

I have filled in an appeal form and sent it back on advice from the paediatrician and the charity who helped me but I am debating on whether to persue it or not as I was waivering in the first place as to whether he was really entitled to it or not. I do struggle massively with his behaviour but I'm not sure it's enough to justify receiving DLA IKYWIM.

StarlightMcKenzie Mon 26-Oct-09 17:56:23

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