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Original poster

DS with ASD starting school Sept 2018 - I am feeling overwhelmed

992 replies

Hurricane74 · 07/11/2017 14:48

Hi

My son has a diagnosis of ASD and is due to start school next Sept. We are in discussion with the LA about an EHCP and have a Joint Assessment Meeting for early December. I had hoped he would go to a mainstream school and see how it goes, with the option of a school with an autism unit or a SS is things don’t work out. But now am feeling very doubtful a mainstream school could meet his needs. We had a report from the LA yesterday based on observations of him at preschool and it makes such sobering reading. It puts his developmental age at 8-20 months for most areas (he is 40 months) and his understanding and listening skills at 0-11 months. (His moving and handling skills are almost age appropriate). His main issues are social anxiety, sensory issues around noise and his lack of understanding and speech. Has anyone experience of a child with similar issues managing in a mainstream setting? If so, what kind of provision did you ask for and receive? Thanks for reading.

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seekingsummer · 13/02/2018 11:01

Oh wow 2 hrs! No, that doesn't sound the same. I have forgotten so much so can see why you're trying to jog your memory

mamapants · 13/02/2018 11:45

Yes Im worried we will be sitting there just saying ummm, ummm, not sure or coming out with totally different answers!
So difficult to remember things.

mamapants · 16/02/2018 20:09

Just popping on to recommend the book The Reason I Jump by Naoki Higashida.
A book by a 13 year old boy with autism. Very interesting and gives an insight into what my son might be thinking.

livpotter · 16/02/2018 22:16

That is my main go to book. Also the second one Fall Down Seven Time's Get Up Eight. He is amazing.

seekingsummer · 16/02/2018 22:32

I also love that book. Totally inspiring.

Another good one is Thinking Club by Alex Lowery. I have seen him speak (and his lovely mum who comes along with him to give her insight into his childhood). He is really good at explaining why he does things like stim and the things he finds confusing. He also gives an insight into the high levels of anxiety that our kiddies suffer from

mamapants · 16/02/2018 22:45

I'll check for both of those books at the library next.

livpotter · 17/02/2018 07:44

I haven't read the Alex lowery one. I'll definitely check that out.

seekingsummer · 17/02/2018 09:05

It's really good and covers so much (he had very delayed speech, went to a special school, was home schooled, did an ABA programme and he talks about each and how he found them). If you ever get a chance to see him speak it's so worth going (and his mum, as so much of what she says resonates). He answers questions too. It was really interesting hearing him answer a question about crossing the road (how he still finds it very difficult if he's somewhere new). He's an articulate, brilliant public speaker but some every day things are still a struggle, even as an adult. Of course they are. I found that helpful to hear about as a mum, things I need to be conscious of for hthe future, but with the uplifting high of seeing just how much he has achieved. Sorry for the ramble. I just found him very inspiring (and I actually cried when his mum spoke, as she could have been talking about me).

mamapants · 17/02/2018 09:18

I've read some articles by Alex and I also saw an interview with Temple Grandin mum which was interesting.
It's quite difficult to comprehend just how different their experience of the world is to ours.

seekingsummer · 17/02/2018 11:12

Yes, I'd love to understand a bit more about how my DS sees things. I'd be interested to see an interview with Temple Grandin's mum. She was well ahead of her time wasn't she? I remember reading that she hired a nanny to play with Temple Grandin for 2-3 hours a day, concentrating on turn taking games. Intensive interaction.

mamapants · 17/02/2018 17:37

It was just an interview I found on YouTube.
Was very inspiring.
My mum has borrowed The Reason I Jump, then need to get DP to read it. He was getting very irritated by me reading excerpts out to him yesterday.

livpotter · 21/02/2018 16:50

Just got the news through that they are going to do the EHCP assessment for my ds. So relieved!

dimples76 · 21/02/2018 16:58

That's great news livpotter!

seekingsummer · 21/02/2018 17:12

Brilliant news liv Smile

How is everyone else? Struggling with cutlery here. Hands are still the go to!

mamapants · 21/02/2018 17:44

Great news

livpotter · 21/02/2018 20:49

Thanks! Only the first hurdle but at least we're on the way!

Seeking cutlery is definitely optional. I also realised the other day when we went to a birthday party that my ds won't drink out of a cup without a straw! Not sure how we came to that.

SueVide · 21/02/2018 21:39

Congrats on the needs assessment liv hope the process goes more smoothly. We're in the assessment process and should find out if they are going ahead with a plan soon. They have all the reports so keeping our fingers crossed.

seeking the kura cutlery has been a hit with DS but if he's in a hurry or it's cake only hands will do!

seekingsummer · 22/02/2018 01:13

Good luck sue - we're at exactly the same stage. Waiting nervously!

liv my DS won't drink out of a cup at all he still uses a large flip top tommy tipppy thing. He said developed a habit though of picking up our glasses and drinking out of them and then looking for some praise so I'm hoping that's the start

I am going to persevere with the Kura cutlery!

dimples76 · 22/02/2018 07:13

Sue and seeking we're at the same stage too and have a multi-agency meeting next month at what will be his school in September. Feeling v nervous now.

I think I raved on here a while ago about kura cutlery and my boy does find it a lot easier to use but still prefers using his hands. Liv, I guess using the straw is good sensory experience for him.

Our main challenge seems to be toileting at which he is either perfect or terrible. For example a week with zero accidents is followed by a day at nursery with 5 accidents. I just can't really figure out what is happening on the difficult days. I also keep counting down to September which is not helpful!

mamapants · 01/03/2018 07:14

Can I ask those who have a diagnosis for their child how long was it between assessment and getting results?

livpotter · 01/03/2018 08:32

We had the assessment end of November, got the results at the same appointment and then got the paperwork just after Christmas.

mamapants · 01/03/2018 13:14

Its been two weeks since final assessment now. But a friend told me she waited three months for results for her son!!

livpotter · 01/03/2018 13:48

Did they say anything at the end of the assessment? I gave them a phone call after 3 weeks to check what was going on.

mamapants · 01/03/2018 19:13

Its OK, have an appointment booked now for two weeks time.

mamapants · 16/03/2018 08:06

How is everyone getting on?
DS now has a diagnosis of ASD. They are hedging their bets on whether there is an intellectual disability or not.
Education meeting next week.
Headteacher and class teacher (of village school) have been in to the unit to meet him.
We've had another ABA consultation visit which was good.