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

[Hurricane74]

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.

seeking agree totally about trying to do as much as we can at home. We are looking into ABA at the moment. Been reading up and got a consultant visiting tomorrow!

Our LA has just agreed to issue an EHCP. Though we are now working on the specifics of what it will be.
For us we had a meeting after all the professional assessments had been carried out and the LA panel had decided they would issue a plan and at what level.
The meeting was more to gain our view and ask for input on outcomes and targets to put into the plan.
I'm guessing your meeting is earlier on than that Hurricane? I will help in anyway I can.
For me I had to be quite firm about what I thought and knew of my son because the professionals that conduct the assessments (although very knowledgeable) don't really get a chance to see that much...iykwim. I also found our Ed psych to be particularly un aspirational. Even the future school senco was surpised at her low expectations.
Don't be afraid to put forward your opinions, you will know your Ds better than anyone else in the room. And as I have read on here before you will also be the only person in the room with ONLY your Ds interests at heart.....they are always thinking of budgets and practicalities as well etc.

I feel a bit behind with the EHCP. We were trying to build up enough evidence and waiting for his ADOS, which we had last week and confirmed autism. Now trying to get the nursery to sort themselves out to apply.

You can start the application process yourself if you wanted to speed things along or if nursery aren't as willing. Nursery would still be required to submit a report but if you were accepted for assessment the council would ask them for this. There are template letters for parents asking for EHCP assessment on IPSEA and SOSSEN websites.

What was involved in the ados liv?

mamapants we have been doing ABA for a little bit and have felt it has helped our Ds enormously. We haven't been doing it for that long and only part time.

Chasing yeah I did talk about applying myself but my Heath Visitor and the CDC said it’s better if nursery do it. They are willing just being a bit slow. I’m doing an IPSEA training course in a couple of weeks too.

Mama the ADOS was two people, I had two speech and language therapists but usually the second person is a paediatrician I think. One went through a series of questions with me and the other played with my ds focussing on particular areas. They then sent us out of the room while they each added up their scores separately, discussed the results and came to a decision. They then bought us back in to discuss the results and where to go from that point.

Sorry, crazy day today! (I'm so glad his thread is keeping going!).

Our LA have agreed to assess so I guess the next step for us too will be a meeting. We are trying to get an Ed Psych report of our own at the moment. I feel like I'm about to go into the lion's den!

Chasing it's good to have a reminder that we are the only real advocates for our kids and we have to be as forthright as possible at any meetings. My son has had a big leap in language (although from a limited starting point) but his expressive language is much better than his expressive, so it gives a really false picture of how much he understands. He still needs so much help. I'm so worried the LA experts will simply not get that (knowingly or otherwise). I will keep your words in mind in any meetings we have!

Let us know how the meeting with the consultant goes mama! We have found a consultant and are due to start ABA in January. It's good to hear that your little one has done so well with ABA chasing. It seems like the only game in town to help doesn't it? I'm the meantime, I'm working on numbers and letters at home. My DS has finally gained an interest in things vaguely academic having had zero interest before and having dug his heels in when I tried to teach him anything. At the moment(!) he seems keen to learn, having been impossible to teach anything to before, so I'm trying to do as much as I can before he changes his mind! If he doesn't want to do something, it's absolutely impossible! Definitely think he has some PDA traits. Bodes well for ABA...

Sorry. Long day-that should say my DS's expressive language is much better than his receptive!

ps, liv it's really good that your nursery are on board (but annoying that they're slow). We started the process at my DS's old nursery and it's been taken over by his new one, who are also willing (but a bit too keen to talk my DS up!). It dis feel to us like it helped having nursery take the lead and say that DS was struggling, so I can see where your HV is coming from, but like chasing said if they're just too slow you could also do it yourself

Can I join you. My son is also starting school next September. The LA have just refused to assess - I need to get on with the appeal. He will definitely need 1:1 to be in mainstream (their Ed Psych agrees)

There just don't seem to be enough hours in the day. We've just had noro virus and now I'm behind at work

Hi dimples sorry to hear you are having a hard time with your LA. I agree it is so hard to find the time to do all this extra paperwork when we have children that need us and work to do...as if our lives aren't hard enough without this nonsense of refusal to assess in your case. On what grounds have they refused?
I have heard many LA do this as at every refusal they knock out a few who don't then appeal therefore saving themselves money...they do it even when blindingly obvious needs assessments need to occur. It makes me sad and cross. I wish you strength recovering from NV - what a horrible thing to have to deal with on top!

Thanks CMT. The grounds for refusal are to my mind nonsense. They do not dispute he has SEN (they already fund 10 hours 1:1) but they state that he is making progress (with support) and that the school can apply for top up funding when he starts school if needed.

Whilst he is making steady progress with support it is clear that the gap between him and his peers is not narrowing.

I think it's v clear that legally they should be assessing - I guess the next stage about whether he needs a plan is less clear cut. Like everyone else on this thread I just want the smoothest transition to starting school that can be managed ...these constant battles are very wearing

Wow that’s pretty infuriating dimples. Can you appeal?

Thanks seeking and chasing.I have a meeting with the nursery in a couple of weeks so if they are still dragging their feet I will just apply for it myself. I’m hoping my heath visitor is going to sort them out, she can be pretty scary!

We don’t do ABA as I didn’t feel it was the right thing for my ds, although I know it can be really effective. Something that has changed his life has been OT. We’ve been doing it for just over a year now and it’s been worth every penny. We also started some behaviour therapy in the summer (not ABA based) which is also making a big difference.

Hi Dimples, hope you are feeling better now. Sorry to hear your LA refused to assess. Have you had any advice from anyone to help you appeal? I spoke to the National Autistic Society Education Rights helpline the other day and they were really helpful. I have also heard good things about IPSEA. What are your son’s main issues?

Mama - we have been doing ABA for about a year now, around 10-15 hours a week. It has helped a lot with many things, particularly helped his willingness to cooperate, interact more with others, his interest in a wider range of activities and also helped with strategies to help with his social anxiety. What it hasn’t helped hugely with is his communication - but that may be different for others

Chasing - It’s really good that your LA has agreed to issue an EHCP. I wonder I s there anything in particular that you think strengthened your case? One thing I am a bit confused by is the issue of how much to point to the progress DS is making with the additional 1:1 support the LA already fund at preschool. On the one hand, I have heard that they will want to see that this is making a difference in order to continue to fund it, but on the other hand, if you talk up the progress being made there is a risk of being told it is therefore no longer required! Seems like a bit of a tricky tightrope to walk down but perhaps I am over-thinking things as I am inclined to!

My DS does also have a hearing impairment which I think strengthened the case for assessment of needs. We also already had an ASD diagnosis so that helped. Nursery were also very supportive and when I requested assessment I made it clear we had reports in place that proved he was struggling with current provision and why.
As far as what to say with regard to progress i would always bare in mind what your dream 'provision' for school would look like for him. If that is 1:1 with a TA for example you want all your evidence to prove that this is what he needs to access the curriculum and fulfil his potential. Therefore evidence from before he had the current 1:1 would be helpful, as I'm guessing he didn't thrive as much hence them offering you that at pre school.
If you can show that he needs 1:1 to learn then that will go in your favour for future provision. However I don't have much experience myself so don't want to suggest the wrong path...
Are you looking to get any ABA funded by LA Hurricane? Do you have good evidence from your current ABA programme that you could use to show how he best learns?

Thanks for your reply. It’s really interesting to hear views and experience from other people. I don’t especially want an ABA tutor for him at school (and our LA are not keen on ABA aparently so it’s unlikely they would fund that). In my view it’s more important that he has somebody who understands his needs and is sympathetic and patient. The ABA has been good but we have also been trying out some Intensive Interaction with DS which is much more child-led and I think it’s doing more to bring him out of himself and increase his confidence and give him the motivation to communicate which is his biggest area to develop at the moment. So I am not totally wedded to the ABA approach.

Agreed getting ABA would be hard with LA which was why I asked. What sort of intensive interaction have you been doing if you don't mind me asking? Have you read anything that you have found helpful on this approach as I would be interested :)

Hi Chasing, I did a one day course with the Intensive Interaction Institute which was brilliant. This booklet gives a really useful overview: issuu.com/treatingautism/docs/ta_i.i._handbook_final_single_pages
There is some stuff from Dave Hewett on You Tube as well. A lot of it features quite severely impaired autistic people or those with severe learning difficulties but I am told the principles work well with more HF as well.

Hi everyone. Hi dimples, hope the dreaded NV has now gone. Also sorry about your LA. That really is unbelievable (but sadly totally believable if that makes sense). I found IPSEA really helpful for advice. It does seem that any progress our kiddies make at nursery and preschool can be used as a way of denying provision.

hurricane that sounds fascinating. I have to say I'm slightly worried about how my DS is going to respond to the ABA programme we're hoping to start in the NY l, as much of what I've done with him which has been most successful has been child-led. We'll see though. I'm definitely interested in the I.I you've been doing.

Does anyone have ideas about helping cognitive development? My DS has made good progress with speech and communication but there are still massive cognitive gaps. I take him to a kids football class and I really see it there when they are doing the various play exercises. Some things he just doesn't get at all. I guess improving speech will keep helping, but I'm wondering if there's anything I could be doing/if there's anything you are doing. Maybe books is a good place to start. He loves books. I'm trying to find ones that give him a bit of awareness of the world (seasons etc). Not easy to find ones that are simple enough but also engaging.

We did intensive interaction as part of NHS course and ds definitely responded to it. They also do it at therapy.

Seeking my ds loves movies so when things happen that he particularly enjoys I try and help him replicate it in real life. For example Gromit building a card house then we try and build one. I also try and relate things outside the house to movies as well. Autism requires a lot of creative parenting I think! Like you said earlier about being really enthusiastic about things he loves, you could then use those things to build up scenarios that will help him understand more? Not entirely sure what to do with drainpipes though.

Thanks liv! Yes, you have to get creative when trying to get excited about drainpipes 😂 I'm trying to convince DS that scaffolding is similar!

We haven't really done movies yet (the Peppa film was the first he saw). It's a great idea and one I'll try, thank you. hurricane not sure if your little one likes Peppa but I did find that DS absorbed the language in it like a sponge and it's pretty functional stuff, so quite a good one for learning. I actually found an interesting article about its use as a language teaching tool. Will have to try and dig it out. It's pace that DS struggles with when watching things, and it's a bit slower than some so easier for him to understand.

Liv, any movie recommendations gratefully received!

Would also love movie recommendations for Ds. He loves Peppa and Mr Tumble, show me show me etc.. but if love for him to be able to enjoy a film :) Ds has a lot of echolalia but agree Peppa language is a favourite for him!