How can I best support DS4

[DinoDandy]

Hello,

I have found some very useful information searching these threads already. However, I struggle to understand what is most relevant for DS and I often feel lost or overwhelmed. I would be so grateful if someone more knowledgeable than me can help me understand what more I can be doing and how I can better inform myself to make the best decisions for him (education, therapy, support). Apologies if this becomes a long essay.

DS just turned 4 and we’ve been aware of developmental delays since he was a toddler. He didn’t start walking until he was 2, has speech delay, struggles to understand basic questions or answers, lots of sensory seeking behaviours (chewing, spinning, noises) and sensory issues (food texture). He has been seeing SALT for a few years now- typically every 6-8 months. He’s never really had therapy and I’m not sure what that entails to be honest. Usually they play with him, make some assessments and give us some ideas of what we can do at home (e.g. visual cues, turn taking games, etc to build his attention). They mentioned before
they didn’t think he was ready for group speech classes yet (that was last year and I haven’t heard back on that). They have recently called to find suitable times for 121 therapy so I would hope that starts soon. He has an assessment with the child development centre next month as SALT advised he has ASD traits. Alongside this, his pre-school have applied for an EHCNA- this is in progress and we’re on week 22.

He has a friendly personality and plays well with others, but he’ll lose interest quickly and will often prefer to play on his own (usually toy cars). He struggles to learn new skills (e.g he can’t figure out how to use a scooter yet); he also gets frustrated or angry if you gently try and encourage him and he won’t persevere.

We tried potty training when he was 3.5- he was out of nappies for 2 months but eventually put him back in pull ups after his pre-school noted he wasn’t making enough progress and it was becoming an issue for them. Tbh, I was over scrubbing dirty pants every day anyway… his main issue with toileting was communication. If I watched him and helped him to the toilet at regular intervals he would usually go (but would protest sometimes). The problem was that he would never tell us if he needed to go or even if he’d already had an accident. He would happily sit in dirty clothes without mention- didn’t seem to bother him. He also refused to
go to public toilets. He needs a lot of
help removing his trousers and getting onto the toilet seat or potty- if we can get him to be more independent he might be more willing but his issues with learning new skills are a bit of a barrier here. Poos are also causing sensory issues which I know can be a common problem. We often manage to catch it and put him on the toilet with lots of praise but he’s often upset when he does a poo (not always) and would always prefer to go in his nappy/pants.

He is due to start reception at a mainstream primary in September but I don’t think he’s ready. I’ve raised my concerns with the school but they have always been reassuring about how they can support children with SEN and that hopefully the EHCP will be in place by then. The school sendco will meet DS at his pre-school this month and then we can have a more productive conversation about what is best for him.

I really can’t decide whether I should push for a delayed start to reception or if he might be better off starting school in Sep. We never considered SEN schools as he doesn’t have the EHCP yet and his SALT and paediatrician said mainstream should be ok for him. I’m embarrassed he’s not potty trained yet. I’m aware this can be common with SEN children starting school and I’m trying to be patient with DS and myself- but it’s starting to get to me. This is not the only reason why we would delay- he has so many other skills he needs to learn too- particularly his speech and understanding. I just don’t know if he will get there in his own pace (seems to be the case with most milestones so far), or whether he will need constant 121 support when he starts school. Would we be delaying the inevitable or could the extra year at pre-school help him to be more prepared for school a year later?

What can we do to be more proactive to help him - maybe look into private speech therapy or anything else I haven’t considered? We’ve not seen any OT yet- should I ask for a referral or find one privately? What would an OT do for him potentially?

I feel quite lost about this- and I’m not sure what is best for him. I worry I’ll make the wrong decisions or not provide the right support for him. Thanks for reading.

How verbal is he? Have they done the needs assessment yet?

They mentioned before
they didn’t think he was ready for group speech classes yet

And yet the same (?) SALT says mainstream ’should be ok for him’. I don’t see how these two comments stack up really.

I think much depends on whether you’ve had the needs assessment and what professionals will be assessing him. Then you can potentially push for SALT and OT to be included in the EHCP, but you will need this to be recommended by a professional for it to happen.

If you want to go private you’d need weekly sessions for the most benefit and they are about £75 per hour here.

SALT can help with communication, speech, emotional understanding, attention and that sort of thing.

OT can help with gross and fine motor skills, coordination, sensory issues, sensory and emotional regulation etc.

The LA are not sticking to the statutory timescales. You need to email the Director of Children’s Services informing them of the situation and threatening judicial review.

Have you received a draft yet? If not, when you do you will get to state you preferred placement and that can be a special school if that’s what you want.

An OT assessment could have been part of the EHCNA. If you think you are going to have to appeal anyway I would just push the LA to finalise and seek an independent assessment when appealing.

You don’t need to pay for independent therapies. Ongoing therapies in excess of what would otherwise be available can be included in EHCPs.

You can request a referral to the continence service. In some areas you can self refer too.

Deferring is unlikely to solve the issues as the developmental gap is likely to remain or even potentially widen if DS does have ASD. Socially and emotionally DC are often said to be two-thirds of their chronological age. If however you need the time to appeal the EHCP it may be worthwhile.

I don’t see how these two comments stack up really.

Both statements may well be true. Teen DS3 is in mainstream (he’s having a difficult time at the moment, but has thrived in MS until now) and he wouldn’t cope with group therapy. His sessions have always been 1:1.

ThomasWasTortured I am struggling to see how a child couldn’t cope with a small SALT group but would be ‘fine’ in a ms class of 30.

Because therapy sessions are very different to a general classroom experience.

I would have thought the SALT session would be more low key and relaxed than a classroom, no?

Anyway OP, I’m not saying MS is or isn’t ok in your case as obviously I don’t know but it just seems that they say this in most cases just because of a lack of options, not be it’s necessarily right for the child.

Therapies sessions are different to a mainstream classroom, they aren’t comparable. I have supported many, many parents with EHCPs and DS3 isn’t the only one by a long way who is in MS (as the best placement for them) and has 1:1 therapies rather than group.

Ok then.

Thanks so much for your replies- to answer your questions about the group therapy I was under the impression that he just didn’t have enough skills for the class to be useful for him and he ‘wasn’t ready’. The class is called ‘come talk with me’ if you know anything about that? I interpret that as the class was more intended for children who had better understanding and that DS just wasn’t ready yet. I don’t think he would have any trouble coping with a group setting- he is quite sociable. I wonder if he’d be ok now as a year has passed and he has made some slow progress (everything is painfully slow progress as far as DS is concerned). They did send us on another course as I think they felt a bit sorry for us- but the class was more appropriate for younger children and seemed to cover very basic parenting and behaviour management which wasn’t really appropriate for him. The trainer also
acknowledged that we didn’t really need to be there but it was only 4 classes so we went along anyway.

He can speak 3 word sentences and he can usually communicate effectively when he wants something (surprise surprise!). So we don’t have issues in meeting his needs and PECs wasn’t really required as he knows the important words he needs. His manners are very good- always says please and thank you! He certainly doesn’t have all the words yet however, and if we try and have a conversation and ask questions he will often respond out of context or not the right answer which indicates a lack of understanding (E.g who did you play with at preschool today- he’ll respond with a friends name, but then I know that friend doesn’t attend on that day, or he’ll say he played with trains when he means he wants to play with his trains now).

The most obvious problem I have right now is he will often ask ‘where’s daddy/grandma/sister/whoever’ repeatedly and I will answer him the same every time- but he still keeps asking- it’s almost like a tic.

He is kind and gentle with other children and understands about sharing, etc. He really enjoys preschool and I don’t think he would have an issue when starting school in terms of coping/behaviour but I don’t know how he will respond to teaching and trying to learn new skills- this will be a new set of challenges and we don’t know he’ll cope yet.

OP I think important questions to ask the SENCO of any school you consider are: how will he access the curriculum (based on where he is currently) and how will that look as he moves beyond reception? The work starts to ramp up even in year one and by the time you get to KS2 children with SEN can be working several years behind the class. Additionally, will he have any peers that have a similar profile to him? Again, this is important as they get older and friendships become more complex. Dc with SEN often have an emotional age lower than their peers.

If you are interested you can see a brief outline of the sessions’ content here.

Thanks again for your input- I will raise those points with the senco. You’re right- although reception may not be an issue I just don’t know how long it will take for him to build the skills necessary for KS2, etc. This is one reason I’m considering a delay in starting as it gives him another year to catch up- although I appreciate he may never catch up to his peers and is likely to have more issues as life becomes more challenging. That could be another factor here- another year of preschool just feels like normality where I have no idea how he’ll cope with primary school and learning, etc. SEN schools are a bit of an unknown for me- I did take a look locally but most schools seem quite specific to certain diagnosis and require EHCP which we don’t have yet. The MS school has indicated that they can and do support SEN children with ASD and SALT needs.

I’ve seen the needs assessment from the SALT and the council has everything they need for the assessment I think- last time I checked with them they were waiting for Educational Psych to visit DS at preschool- I’m not sure when that will happen. We don’t have a draft report yet.

Thank you

Thank you

The ed psych should have already seen DS, weeks ago. You need to threaten judicial review. It is important you don’t let the LA continue acting unlawfully because if you have to appeal the waits are long.

Thank you- would you contact the case worker about this or go higher up?

I would email the Director of Children’s Services directly, use the words judicial review. If that doesn’t work contact SOSSEN for help with a pre-action letter.

Firstly big well done to DinoDS. Progress is fantastic (even small steps are fantastic). I agree with asking the SENCO how your DS will access the curriculum - especially in regards to what that will look like after reception. I would be mindful of a peer group too, does the school have something like a nest/ nurture group that DS could attend with children of a similar profile to help nurture a peer group in the wider school (I know schools are woefully underfunded but some schools do manage to run one)? Have you looked at lots of MS to see how provision varies school to school. A good SENCO is a godsend. You do usually need a EHCP to access SS schools. It wouldn't hurt to research those in the local area just so you know what is on offer if DS needs SS provision later on.

Other posters will be far more knowledgeable in regards to navigating the EHCP process and assessments. I will say try and get this in place as early as you can and make sure provision is clear and quantified (again other posters will be better placed to advise on this).

In regards to helping to build skills. It sounds like your DS is progressing slowly and needs a bit more practice with aquiring skills than others and needs things broken down into smaller steps. One thing that can be tricky for children like your DS is P.E/ Swimming. This gets harder as they advance the years as children get more independent with dressing as they age. In nursery/ reception most children will need help but by mid year 1 most children are able to dress somewhat independently and start to notice others needing help. You probably already have but I recommend looking at adaptive ranges of clothing and easy to pull on and off trousers and shoes without buttons/ laces/ zips and practice getting them on and off at home. Break it down into really small steps and don't stress.

Good luck OP.

Your kid sounds lovely and a credit to you.

There is a risk that his good behaviour might not help him - overstretched mainstream schools tend to overlook kids with delays or other difficulties who aren't disruptive.

There's an AMA thread with an ed psych on at the moment that explains better than I can how kids that externalise (scream, run off, break things, hit, fight, swear) will get more support than kids who internalise (sit passively in class not learning anything, get obsessive and anxious about getting everything right, feel more and more sad and alone, hold it all in and then explode at home).

My impression for what it's worth is that the latter group are getting failed even more than the former.

This isn't teacher blaming by the way - I'd doubtless do the same if I were a teacher. What else can they do?

I think this is why it’s important to get a watertight EHCP.

OK. There are a few things going on here. You've already received good advice from others but first thing in the morning you need to fire off an email to the director of children's services at your local authority and threaten judicial review. (You can google it or phone your council to get their details.) Your DS absolutely must see an EP urgently. The LA is already over the legal timeframe for this.

This is what I had to do. Yes there is a national shortage of EPs but that isn't your fault or problem. The LA will have to commission a private one if they have to. It is absolutely essential he sees one - and that his EHCP is sorted for September.

Have you seen the SALT report that was done as part of the needs assessment? If so, do you agree with it? Personally, I don't think having SALT 'every 6 to 8 months' is anywhere near enough. My DS was having fortnightly SALT from 18 months. (I appreciate this was several years ago now though and I know funding is even more of an issue now.) When his EHCP is issued in draft, go through it with a fine tooth comb and make sure Section F is really watertight.

Ipsea has some good info here:

https://www.ipsea.org.uk/what-an-ehc-plan-contains

Have you looked at any ASD resourced provisions? There will be primary schools that have a unit attached to them for children with autism - they spend some time in mainstream class and some time in the unit depending on their profile. They may not be suitable for your DC but it's worth investigating, if only to rule them out. Or something to think about at a later stage if the MS option doesn't work out.

In terms of potty training. I believe it's quite common for it to come late for ASD children. My DS (who has ASD) was still in pull ups the summer before he started primary and I was so worried. He managed to 'get it' in two weeks though over the summer when he felt he was ready. I did speak to his reception staff though beforehand and they were completely fine with him starting school in pull ups/changing him if needs be. It's not uncommon.

In terms of trying to defer his place - it's pretty late to be looking at this and I think you would need to be contacting the school/LA if you're seriously considering it.

One thing I would mention - your DS doesn't have to be at school until the term after he turns five and I believe nurseries can keep them until then. We looked at keeping DS in nursery for one extra term and then starting him in reception later. In the end we didn't but it could be worth exploring if it turns out you need to appeal the EHCP - or appeal the school place (if you've found him a setting you feel is more suitable.)

The absolute priority though I would say is to get his EHCP sorted.

I'm sorry to say that you need to become 'that' parent and become a thorn in the side of the local authority. This may sound cynical but the longer they delay, the more money they're saving by not having to provide the support your DC needs.

Hi everyone thanks so much for your help and sorry for the late reply I don’t get notifications for some reason. DS started 121 speech therapy this week- it will be fortnightly but it’s only 3 sessions in total. He had his first session and they were pleased with his progress.

I contacted his case worker for the ECHNA but had to leave a message- they haven’t come back to me so I guess it’s time to send that email.

I initially enquired about delaying his school start date with both his preschool and future primary school last year- they advised me to apply for a place as normal and that we could decide after the spring term when they have a chance to meet him. They met with him at his preschool this week and we have a meeting in a couple of weeks to discuss. It does seem late to be talking about delaying now but this is where we are now.

There are 2 special schools not too far from us- I’ve looked at their websites but haven’t visited. Until we get an EHCP it seemed pointless doing that much research. We also need an ASD diagnosis for one of them which we may or may not get soon. The mainstream primary is quite large and has a lot of SEN resources- I’m comfortable with the support they can provide at this point. I’m still unsure how he’ll cope in a school setting so we may end up transferring him to a special school but that all depends on the EHCP.

I hope it all works out at the mainstream but reality is starting to hit me and I’m feeling anxious about all of this. We acted as quickly as we could and we’re at least a year into this process- I feel so bad for him. We are getting pushed along the process to start school and he isn’t ready :-(

If your preferred school would be a SS it is a good idea to have an idea of which school would be your preference as if/when a draft EHCP is issued you don’t get a lot of like to make representations and state your preference.