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.

How did your meeting go LightTripper? Hope it was helpful.

Hi all,

Also hoping the meeting went well LightTripper.

We tried Wallace & Gromit for the first time tonight. Not sure DS had a clue what was going on (I was trying to explain to him what inventions are ) but he was chuckling away which was lovely. Thanks all!

Has anyone had any success with social stories? I think we need to try some to help with emotions.

Chasing – glad you are seeing a difference with ABA. How long have you been doing it? Have you hired someone to do it day to day or are you doing it yourself? We are going to be doing it ourselves as the cost is so high and we don’t live anywhere near provision- the consultant was travelling over four hours to come to us. The appointment went really well- seems so natural while she’s doing it but a bit trickier when we are trying and me and DP seem to have interpreted everything differently to each other so looking forward to getting reports and targets on paper.

Liv - thanks for info re the assessment, I’m not sure how many people will be at DSs but definitely know there is going to be a clinical psychologist present, can see it would work well with two people delivering at once as I was surprised appointment is only 90 minutes.
Seeking - good luck with your ABA appointment in Jan. I wasn’t really sure how it would go and how demanding it would all be but she made it all really fun and motivated him with the things he wanted so despite a few upsets over being expected to work harder than he’s used to I think he will enjoy it and she got him co-operating more than I’ve ever seen.
Hurricane - are you doing the ABA yourselves? Glad you are getting results even if not in communication. Communication is my biggest worry so really hoping to make progress as DS only has couple of consistent words. We are waiting on a course that is something like Intensive Interaction but not heard anything yet.
I’ve been trying to get a referral to OT but not getting anywhere.

How was meeting lighttripper?
I have got somebody from a charity coming over to help me with what kind of things I need to be asking at the schools I visit. Totally know what you mean about wanting the best but not actually knowing what the best is or what would actually help my son the most. Hopefully this charity person will be helpful. There is also a autism education helpline I think saw an advert for it the other day on Facebook so that might be useful.

Is anyone else's child pretty much non verbal?

Mama my ds was speaking in sentences at 2 then lost pretty much all his language at 2.4. I would say he’s now on about 50 single words and occasionally puts two together ‘do it’ etc. Most of the progress has come about in the last 3-4weeks since he turned 4. Not sure where he’ll be at by the time he starts school though.

Seeking I’ve not tried social stories yet as the Salt and behaviour therapists didn’t think my ds was ready. They did say I could try very simple two picture ones so we did one for potty training which was simply a picture of a potty then an arrow to a picture of m&ms. He did seem to get the idea of that one pretty quickly.

Thanks liv that gives me some hope, my son is 3 and a half and I'd be really pleased if he progressed to 50 words.
We are just looking at toilet training now with the ABA therapist encouragement, everyone else has told us he's not ready. We are trying habit training, so just started putting him on toilet once a day. Only two days in and he's done a wee and a poo day one and day two DP accidentally removed nappy before getting tablet ready in bathroom so he pooed in his bedroom. Oh well, day three today and will see how it goes.

We only potty trained a couple of months ago, I was really surprised how quickly ds took to it. We did bribe him with an awful lot of chocolate though

We are thinking of trying potty training soon. Slightly terrifying prospect! DS’s understanding is so limited I think it will be tricky.

Mama - we have a tutor that comes in three times a week to do ABA with DS. I did some myself to begin with too but less now as I like to take him out and do stuff with our time together. It was daunting to start with but quickly became quite routine and straightforward once you see what works.

My DS has about 50 words and very occasionally will join two together eg ‘more swing’, ‘shoes on’. But a lot of his speech is prompted - so I will say ‘do you want a biscuit’ and he will say ‘biscuit’ for example. Recently he has started with what I think might be echolalia as I have read him these ‘that’s not my duck/ dinosaur/ tiger’ books and I will often find him saying the key words to them while chatting to himself. The speech therapist has introduced some sentence strips for him recently which seem to be helping. So on the back of the front door I have stuck up ‘Mummy open door’ and he will try and say it when he wants to go out.

Does anyone else’s DS/DD bolt when out and about? It’s my biggest stress and has been for ages. He hates holding hands and when I try to he will literally run off. Great fun on the school run with his big sisters

Hurricane I like the idea of the sentence strips, will have to give that a go at home.

We have a huge problem with bolting. I don’t take him and his younger sister out of I’m on my own, it’s just too stressful. Ds won’t hold hands either. We tried one of those back packs with the reins and he literally just lay on the floor and wouldn’t move. I now make sure he’s wearing bright colours so I can see him and hold onto his clothes while we’re walking near roads, not ideal.

We have a bolter too, I have to admit to regularly using a back carrier but he will soon be too heavy.
We have come here, stop and wait as targets for the ABA. Basically training him with treats. We are working on it at home to start with so it's not a high stress time.
We barely get seen by speech therapy and are nowhere near sentence strips. DS can't read so not sure they would help and he hasn't got enough words yet.

Reassuring we are not the only ones with a bolter. Really hoping he grows out of it soon. We use treats too but still struggling a bit. He ABA targets sound good.

The sentence stips have pictures on so no need for reading. We are literally using two words at the moment.

Thanks liv. DS is really struggling with other people getting very upset, especially at nursery. So if a child is crying he is getting very anxious and they can't settle or distract him. If he's with me he'll bang his head off me when it happens It's great that pictures helped for potty training. I think I'll try something simple to start with.

My DS has lots of vocabulary but his speech is very disordered and he has lots of echolalia. It has helped him with learning stock phrases and he's got quite good at generalising, but by learning phrases wholesale he often doesn't get the individual meaning at all. So he'll say "it doesn't taste very nice" when he's talking about the feel of something. 4 was a turning point though, his speech and back and forth suddenly took off so I really think this is an age when all our kids will make a lot of progress

Liv - I like the potty and m&ms image! We are using 'First and Then' picture cards a lot at the mo. Although my son's speech is actually his strongest areas I have found the visual reinforcement really useful and I think he (and me!) are calmer.

We started potty training three months ago and he can go days without accident but then we afternoons like today when he wet himself twice and pooed in his pants. He seems completely immune to bribery. His key worker says that she hasn't met a child so unsusceptible to a bribe. He is fine about 80% of the time so I'm hoping it will be okay by the time he starts school.

hurricane is the person you have doing ABA trained or have you trained them up yourself?
I'm feeling pretty daunted by the whole thing now. I've done some random bits since she's been as I've been at work and weekend but today was my first time with any one in one time with him and I'm not doing very well so far. And the toilet plan has been a complete disaster since I took over. DP had two good days, with an accident imbetween. I have managed to make a complete mess of it and feel like giving up.

On the plus side I have someone coming to give advice on what I need to be asking Senco at mainstream. And I have booked an appointment to go visit an unit.

Hi Mamapants - totally understand you feeling daunted. I was exactly the same when we started ABA. Do you have a BCBA case manager/ consultant who has given you advice on how to work with DS? I got a lot of support from our tutor when we started which helped when I ran into problems. I can only recommend carrying on trying and eventually you will see what works and what DS responds to. If you want to PM me I’d be very happy to chat more about it? Our tutor has had a lot of experience with previous families and some training with them so we just have a workshop with the case manager every few weeks where we set the new programmes and review progress and that is very specific to DS so kind of like top up training.

Sorry the potty training is proving difficult. I am sure it won’t be anything you’re doing. We havent tried with DS yet but even with my two NT DDs it wasn’t straightforward and we often had a few bad days between good ones for no particular reason. I think it’s just a case of ploughing on for a while especially if he’s responded well initially. Hope you are ok x

It’s good news on the advice you are getting about schools. Would love to hear any insights! Hope it goes wel.

Mamapants try not to be too hard on yourself about the potty training. It is challenging! It was very one step forward, two steps back here. But like hurricane says it’s great that your ds has already had a good couple of days. Hopefully tomorrow will go better.

hurricane we will have a very similar set up to you but rather than having a technician come in we will be doing it ourselves. Just need to get the hang of it. Just frustrating seeing what she could do and then not being able to replicate it. Am sure we will get there.

I realise I've made the potty training sound more successful than it is. We are only trying on the toilet once a day. But DP got the timings right so DS was doing a wee within 5 mins of going on toilet. Whereas I've gone off his timings but DS hasn't weed and I've been keeping him on the toilet for about 45mins, making him mad, not getting a wee and totally reinforcing wrong thing and making him hate the toilet. I don't know if I need to be adjusting it so he's going on toilet much. Later than I am putting him or if he's withholding because I've made him stressed or not wanting to. Feel like I'm doing more harm than good at the moment. Had he had two full days going well I would have been over the moon.
I think I might try him without a nappy after his drink and rush him there just so I can get an accurate idea of timings while not stressing him out. Then I'd it appears he's withholding because of the toilet will get back in touch with consultant to ask for advice.

Oh and I'm meeting the charity lady next week so will pass on any good tips I get

So pleased to have found this thread. DS is on the waiting list for an asd diagnosis and we're looking for mainstream primaries. He's at a great school nursery where he has 1:1 and they have applied for an EHCP. We found out this week that the LA are going to do a needs assessment but I have no idea what that entails.

The school attached to his nursery has just been academised due to poor results/ofsted and I'm worried about how accommodating the trust are about SEN given their need to improve SATs scores. So hard to know whether to keep him where he is (SENCO is great) or move him somewhere which looks better on paper for SEN but might be an unknown quantity.

Sorry for the essay.

Are you going to visit the other school sue that might help you get a feel for the place.
And talk to the Senco at his current school.
Hard to know what to do isn't it.

Hi everyone and hi sue. Sorry for the radio silence, we're all I'll here.

It's so hard to know what to do. Agree that speaking to the SENCO can give an idea of how amenable a school may be to SEN and just how geared up they are.

We are really worried that our DS will not get 1:1 in reception as our LA is currently fighting them all and using progress in nursery as justification for saying children can cope without 1:1. We're going to see an ARP next week so will see how that looks.

mama how is the potty training going?

My new project is trying to build up DS's hand strength. His hands and wrists are very hypermobile so he hates any kind of crafts, stickers etc and can't hold a pencil or crayon for any time at all.