Advice please DS 3.5

[CoffeeLover90]

Hi, I've posted before but on other topics but really would appreciate some advice please?
Basically DS3.5 starts reception in September. I raised concerns for his development for over a year, mostly due to the fact he did not speak at all. I've had one appointment with a speech therapist 6 months ago and a referral was raised for pediatrics as he showed a lot of signs of ASD even during her time with him. I've chased it up and been told I can't be given an aprox time but we're looking at around 8/9 months currently. So he has no diagnosis. DS currently hitting the milestones of a 2 year old. His speech had improved massively however, not on a conversation level. He will repeat what you say, pointing at things and naming them. His motor skills are not so good, he's unable to do a thumbs up, uses a finger instead. He goes to nursery 5 days a week and has senco support there. I'm very worried about how he will cope in reception at this point. Potty training is also not going well at all. He cries for a nappy when giving pants, left naked or commando. He has peed in the potty on a few occasions and he's always very pleased with himself and is happy with the praise and stickers. But then cries for the nappy.
I honestly just feel drained. I'm so worried about his future. I want the best for him but it's also impossible to push him if he doesn't want to do something (e.g the toilet)
Please some kind of tips with the toilet training and reassurance that starting school won't be as traumatic as I'm imagining.
Thank you in advance and I apologise for the length.

Have the nursery mentioned applying for an EHCNA? If not it is worth thinking about it. IPSEA and SOSSEN have lots of information on their websites, including model letters.

Has DS seen an OT? If not it’s worth seeing if you can self refer.

The crying when not in a nappy may be a sensory difficulty, and OT will help with this. If that is the case some people start by sitting on the potty in the nappy, then making a hole in the nappy whilst sitting on the toilet etc. If DS isn’t ready yet, don’t worry unnecessarily. You wouldn’t worry if DS was 2 and not yet potty trained and DS is developmentally 2 it may take longer.

Thanks for the reply. I did ask nursery about EHCP but was told he'd need a diagnosis and would be best for when he's at school. They said they already have a plan in place for him, which I follow at home.
I've asked for OT as well as SALT. They said I'd need the diagnosis first. This is what we're expected to wait months for.
My worry is he will be so behind in September when he starts school, I don't know if he will cope.

You have been badly advised by the nursery, you don’t need a diagnosis for an EHCP, they are based on needs not diagnosis. You should apply yourself ASAP.

Whoever told you a diagnosis was necessary for OT input is also incorrect. In many areas you can self refer, so it is worth seeing if you can in your area.

I did look into doing this myself. The LA website asks for the support of the educational setting, by way of referral and/or supporting statement. The occupational health on the website says referral needs to be made by the pediatric consultant (who we are waiting months to see). There is phone number though so I'll give them a ring this week to ask.
I can't help but feel we've just been left to get on with it. Haven't even seen a HV since his 2 years check.

Your LA are acting unlawfully. You can apply yourself, use the model letter IPSEA have on their website.

OT shouldn’t be only accepting referrals from consultants. It is worth challenging that.

Have you requested further input from the HV? You can do that yourself you don’t need to wait for them to contact you.

I'll contact the council this week too, there is a helpline on the website but does state I'll need input from nursery so I will need to raise it with them.
Specifically says OT referrals are to be raised by the pediatric consultant but I will contact them to ask.
I'm sick to death of chasing the health visitor, he's had 2 phone appointments with one of their 'nurses' although I insisted on a home visit, since I raised concerns 2 years ago. At the time of these appointments the majority of the restrictions ended. HV did a 'drop in' about 10 months ago, she was here for 5 minutes and her only response to my concerns were that she'd be in touch after his appointment with SALT as she was due annual leave. I contacted them 2 weeks after the SALT appointment, HV was on sick they said and actually asked what was the purpose of my call? They've been 0 help and as he will not be under them after turning 4 I didn't see the point in continuing to chase them. But if it turns out they are able to refer to OT then I'll make sure they bloody do. I've even mentioned my concerns about DS development and the waiting times at his GP appointments (for unrelated illnesses) and they just shrug and say its all in hand and we simply have to wait.
I'm hitting brick walls everywhere I turn.
I need to look for other employment, current job doesn't pay a lot and I don't enjoy it, but I've even put that off incase these appointments are given soon after a start date, where I'd be unable to take time off.
Sorry to rant but as you can imagine it's very frustrating. I'm so worried at the thought of him starting school with no support in place. To be fair to him he has come on very well the last few months with just mine and nursery support and I do hope the progress continues.

Actually just to add, I forgot about this... almost 2 years ago I contacted the SALT department myself and was told I wasn't allowed to self refer for that either. I'm going to ring the OT now.
Thanks again for the suggestions.

The council can say whatever they like, but the law says otherwise. You do not need to nursery’s input to request an EHCNA. If the LA agree to assess an OT assessment can be part of the EHCNA.

Outside of an EHCNA if the OT service insist on a consultant paediatrician referral it is worth following it up with your ICB, especially given the long wait to see a paed. Even if you are in an area where you can’t self refer there should be more than just a pead who can refer.

Once DS is no longer under the HV team it is worth making contact with the 0-19 school nursing team.


Are you receiving DLA for DS? If not, you should apply.

I've just got off the phone with the pediatrics after i was transferred by OT. So they said the OT referral needs to be done by the consultant. He's looking at a 4 to 6 week wait for an appointment with the consultant. In the meantime I've been invited to a playgroup, once a week for 4 weeks with other parents and children with SEN. The purpose of the playgroup is to observe the children and 'intervene if there is any kind of kick off' at the group parents are given the opportunity to speak with the nurses observing who can give advice and feedback on managing behaviours. I don't mean to sound ungrateful or obstructive here but I can manage his behaviour 99% of the time, especially lately as his speech and understanding has improved. Its also on a weekday morning which will prevent me being available for training when/if I get the role ive applied for.
I don't get DLA and I've been reluctant to apply without any diagnosis. I know I don't have to wait for one.

I would follow up OT requiring consultant paediatrician referral with the ICB as it isn’t acceptable. Although a 4-6 week wait from now isn’t too bad. Lots of areas run similar playgroups, some are helpful, others don’t find them so helpful. As it is only 4 weeks it is worth going, imo.

You should apply for DLA, too. The Cerebra guide is helpful when completing the form.

The role ive applied for (waiting response) has start date this month. The first playgroup is in 2 weeks, then one a week for 4 weeks. As the first few weeks are training they will not give me time off for this. I'm angry about it because first they said a letter of invitation was sent 2 months ago, I didn't get it, those sessions have already started and I also can't believe such a thing isn't also offered on a weekend.
I'm not keen on the wording she used. It sounds very similar to the work nursery are doing. The SENCO does daily observation of DS, this is documented and we have meetings every 4 weeks, more if there's something important to bring up. I've followed the advice from them and also what I've found online, so far his behaviour is manageable.
I'm going to keep fingers crossed I get this job, the pay rise will be enough to just skip this craziness and get the SALT and OT private. The EHCP I'll follow up on. With the DLA I was reluctant because it's just another thing to complete and follow up. I'm not providing much more care or attention than another child his age, it's just a little more support.

If DS is developmentally around 2 you will be providing more support than others his age. Often parents become accustomed to it and don’t see everything they do that counts. Sadly having a disabled DC brings with it lots of paperwork.

The support may be similar to that nursery is providing but it may offer you access to other professionals and evidence from them to support an EHCP, and to meet other parents. Nursery have also let you down by their incorrect advice so attending another group may help you receive better advice. Most of these types of groups are weekdays, whilst I appreciate you don’t think it works for you weekends wouldn’t work for many.