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Newly diagnosed- what now?

(9 Posts)

DS saw Daphne Keen this week and although we are waiting for specifics she said he meets the criteria for ASD and sensory processing issues. He's 'fine' at school apparently although their report has a few flags that they're probably not aware of with 29 other kids in the class. He has a home/school communication book which at the moment gives us enough information to start a conversation with him about his day as despite his large vocabulary he struggles to articulate his feelings or answer questions

I have joined NAS and downloaded their guide and I am hoping to meet with school to discuss what they can do to help but really because he looks fine there I don't know a) how supportive they will be with doing anything if they think he doesn't need it or b) what to ask for if they want to help

I have a few print outs about masking and how common it is to start the ball rolling but I would really appreciate anecdotes or examples of what might help and also if there's anything else we can do to help him.

I've also enquired about the early bird course as he doesn't reach compulsory school age until April (he's been at school since September) but not sure how we will manage it with 2 other DC and no childcare

Any advice on how to handle this period would be much appreciated. I feel pretty all over the place at the moment and anxious as well as almost a sense of relief that my suspicions were spot on. It's been a tough road as nobody (including multi disciplinary) believed us- I know it doesn't open doors having a diagnosis but I hope it gives us a starting point

My other thought is whether it's worth saving for a private OT assessment to pinpoint DS's sensory needs. We saw one after CDC who was convinced he was fine but very nice - I would feel a bit silly going back to her. Is it something we can work out at home? I have most of the books you wonderful people recommend but haven't had time to read them, I also struggle to digest and make sense of stuff with all that's been going on. Any pointers would be great. Thank you in advance

PolterGoose Thu 10-Dec-15 16:05:22

Message withdrawn at poster's request.

Thank you. That's probably exactly what I need to do. Instead I'm driving myself to distraction 'researching'. I will wrap it up, I probably need a break

PolterGoose Thu 10-Dec-15 17:12:54

Message withdrawn at poster's request.

Youarentkiddingme Thu 10-Dec-15 17:44:28

Researching is great. And IMO opinion so is having the diagnosis - though it may not bring support it brings protection.
I agree wrap up research until new year - there's enough to do up until then with Xmas etc.

One trick I'd suggest is type the words you want to know about into Google. Eg asd and ....... It may be words such as sitting still, loud noises etc. The search results often pick up related reading and sometimes I find that it gives me information that makes the penny drop and I say "ah! That makes sense now" grin

Mainly well done on perusing what you believed for your DS - that alone shows you are in tune with him and will be a great parent and advocate for him.

Thank you youarent that's a great trick that I had forgotten about just now - I've been using it for some time as none of the usual behavioural/parenting stuff was cutting it. It's the hyperactivity I'm finding hardest to cope with right now. So will use your tip to see what I can come up with.

Christmas is low key and has been since DS was born but it's still Christmas! He loves it but has always had a tendency to crave stimulation and then become overstimulated with no visible warning. I have enough on my plate with finding enough to fill each day of the holidays to minimise unstructured time and yet not over scheduling to avoid overload. I feel the diagnosis will give me confidence though - that I know my DC and that its up to me to fight for what he needs until he is able to fight for himself.

I will try and schedule a meeting with school for the new year and then do my best to chill out over the festive period ha ha.

I'm so grateful to have these boards, I have no idea where I'd be from an information and support perspective without them. Thank you fgrin

ArtichokeHeartsAppleCarts Thu 17-Dec-15 23:57:35

I found lots of useful info in this thread nicecup and used it as a guide for what yo ask school for before DS started

ArtichokeHeartsAppleCarts Thu 17-Dec-15 23:58:31

to not yo!

RoaringFirePlease Fri 18-Dec-15 22:24:24

Well done on getting your diagnosis.

Regarding earlybird and childcare, some courses offer a crèche for your other children so that you can attend the course. It would be worth asking about this. I think if your child has started school, they sometimes instead offer something called 'Earlybird Plus' which may have some relevant bits about schooling:

"EarlyBird Plus is for parents whose child has received a later diagnosis of an autism spectrum disorder (ASD) and is aged 4-8 and in Early Years or Key Stage One provision. The programme addresses the needs of both home and school settings by training parents/carers together with a professional who is working regularly with their child, the aim being that a child will be given consistent support. We work to build both parents' and professionals' confidence and encourage them to problem solve together."

More info at:

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