Urgently need support please, so upset!

[SeventyNineBottlesOfWine]

Hello, I’m hoping for some support and advice please as I’m completely lost and heartbroken and don’t know what to do!

My son (3) has had difficulties since he was 1 year old.

I informed his nursery before he started (aged 2) there that we suspected he had ADHD and also that he was not reaching developmental milestones. We asked if they could support us with referrals etc if needed further down the line and they said they would of course do that.

His key worker when he first started kept talking to us at pick up time saying she thought there was something going on with him, which we agreed with and had taken him to a GP who had said he was fine, nothing going on.

His behaviour started to get really difficult. Tantrums multiple times a day which he couldn’t be distracted from and could last an hour or more. Very aggressive behaviour towards us and his older sibling and towards children and staff at nursery.

When he started in the pre school room in September last year we kept speaking to various members of staff about his behaviour and how concerned we were .

Finally in October last year a meeting was arranged with the SENCO. She did a support plan for him and SMART targets and referred him to speech and language therapy plus contacted the area Senco.

He completed an Ages and Stages questionnaire with our health visitor in February and scored 170. We were told that scores over 59 indicated the need for an autism assessment. We’ve been referred and are waiting.

There were 3 incidents of inappropriate behaviour at nursery where he put his hands down another child’s trousers. I was contacted by his room leader and told if there were any more incidents he would have to leave the setting. I asked what happened after the incident and if she spoke to him and told him not to do this. She said she’d just led him away. I spoke to him that evening and explained he mustn’t do that any more and there’s been no more incidents.

I contacted the nursery manager who said they weren’t at that stage yet and had other options to try first.

Every time we have a meeting at nursery we’re told what hard work he is and how much they’re struggling.

My concerns now are that the support plan has not been followed or updated since October. When questioned about this they said they didn’t have the staffing ratios to be able to do this.
A chew bracelet we brought into nursery for him to use when anxious has not been used and he repeatedly comes home with mouth ulcers from biting the inside of his cheek. A sticker chart we were using to support him and which was working very effectively - they lied about using it and when confronted admitted they’d forgotten!

We were asked to take different hours for him as they struggle with him at pick up times. We couldn’t do this as it didn’t fit in with our jobs and felt we had no option but to offer to collect him earlier instead.
We’re now missing out on hours we could be working and it’s having a financial impact.

We want to take him out of the nursery as don’t feel he is being supported but both my husband and I need to work and need child care so need to find another nursery first! They’re all full or unable to manage “another child with SEN”

I had to take the day off yesterday to keep him at home as he’d been left on Thursday without support although exhibiting quiet and withdrawn behaviour and had chewed the inside of his cheek severely and was flapping his hands and really struggling even at home. He had a huge meltdown that evening and Friday morning and I couldn’t face sending him in.

At home my son is easier to manage. We’re using aids for children with ADHD and autism and learning how to manage his behaviour and support him effectively.

We don’t feel his nursery are making any effort apart from complaining how much hard work he is and we’re finding it so upsetting. All I seem to be doing recently is crying, worrying and struggling to sleep!

Sorry for the long post. I’m trying not to drip feed!

Personally, I would keep DS in the current setting until either an EHCP is finalised or you get to a point where you need to appeal (i.e. the LA refuse to assess or refuse to issue). Or, if your LA has them, you are offered an early years specialist assessment place for those going through the EHCP process.

Thank you. I see what you mean.
Thank you so much for your support and advice.
I was regretting posting at first as I was getting even more upset especially when told I was being unfair expecting a nursery to care for my child properly! I’m glad I did now. You and Fixerupper77 have given me lots of great advice and support. It means a lot.
I don’t normally post on forums, but posted today in desperation and feeling absolutely awful. Thank you for being so kind to me and realising that I’m struggling.

please listen to the other posters. I know it is very hard and confusing time. Keep LO in nursery apply for ECHP and hopefully you can name your preferred placement when ECHP is being finalised. Taking LO out will only make things more difficult. Have a meeting with manager/senco/keyperson and advice that you want to review SMART targets. Advise them what works for LO and what your expectations are going forward. Follow up with an email and ask to include copy of plan. Start collecting evidence. Lastly please apply for DLA as they can support you if it affecting you financially.

Thank you. I’ve spoken to my husband and told him you’ve all advised we keep him in nursery until EHCP is finalised.
I made an application for DLA about 4 weeks ago but haven’t heard anything at all yet. I’m not even sure they’ve received it. I think I’ll have to try calling them to see if they have it.
Nursery keep telling us the SMART targets are a working document and they’re constantly updating and reviewing them!?
They've only written a couple of targets which were in October and it’s not been reviewed with us present ! I have a feeling we’re being fobbed off with this?

I had similar with our IEP being a working document but I insisted on a meeting with the nursery manager and Sen coordinator to review it. When you look at it, agree that you will review it again in a months time or whatever feels suitable and always follow up your conversation with an email what you discussed and agreed and who would do what so there’s a paper trail.

how did you find the DLA application? I haven’t got the headspace to do it yet

@Fixerupper77 the DLA application was a ball ache I have to admit, but I was determined to get it done as I thought if he’s receiving DLA we may be able to get more support for him- plus I really need the money to support him! We’re spending loads on sensory equipment etc and replacing clothes that he’s absolutely refusing to wear!

I filled the application out then included every report I have about him from professionals and am hoping that will suffice, but am prepared to appeal if needed.

We’ve asked for a meeting since December and they’ve finally put one in place for the end of April!

Im finding it all so incredibly frustrating! I just feel that he’s being let down by everyone who’s supposed to be offering support!

The best advice I ever saw on the SEN Board when earlier in our journey I was like “I don’t know what I’m meant to be doing” was “YOU have to do the work. YOU cannot rely on others helping you or DD.” It makes me now feel like I have some control over it rather than being at the mercy or services that are under funded and under resourced.
the reality that no one is going to swoop in to rescue you and somehow “fix” DD was a hard one but a necessary one.
i spend SO much time reading - it’s hard and I sometimes want to crack from the pressure of not getting it wrong.
i also get overwhelming resentment at people and friends with neurotypical kids who just don’t ever have tk think about this stuff. Applying for primary schools isn’t an ordeal for them etc.

Thank you for sharing that! I really feel
like this is what’s happening!
My husband and I have been the only ones doing anything!
I hadn’t mentioned this earlier but I have a much older child (over 18) with cerebral palsy.
Things were so different with him! I don’t know if it’s because services were far better funded and more available or if it’s because a physical disability is taken more seriously by then or what!?
We had the EHCP sorted and in place for my oldest without me having to do a thing! We were offered many different services to support him and us and nothing was such a battle as it is now with my youngest!
I can’t believe how different this experience is and how frustrating and complex it all is!

And the resentment, yes! I feel it too!
It’s all been so hard since he was little!
We haven’t had a full nights sleep for years!
We often have to leave places early due to meltdowns and I can’t give my middle child the amount of support she needs as the youngest dominates everything which is causing resentment from her.
I just feel like I’m getting everything wrong and failing everybody in the process!

It is a very different political landscape compared to when you 18y/o was a preschooler. The SEN system has become more adversarial and hostile towards parents, with a huge about of parental blame these days. Presumably DC1 also started with a statement rather than an EHCP which changes the system too.

The assess, plan, do, review, cycle shouldn’t be a one off, it should be ongoing, but that doesn’t mean you shouldn’t be involved in the process, you should and there should be documentation. If you don’t already start following up all verbal communication with emails to create a paper trail as evidence.

If you are in an area with Portage and if in your area they continue to support preschoolers in nursery, it is worth a referral to them. It is worth looking to see if Home Start can support you as well. You could also request a referral to a sleep clinic - there will be a wait but in some areas this is less of a wait than for the ASD assessment.

Have you looked at any charities who offer sensory toys or grants for sensory toys?

For DC2, what is the local young carers service like? Some find Sibs helpful to speak to, too.

Have you and DH had carer’s assessments? And DC1 and DC3 social care assessments? Potentially CHC funding for DC1 depending on needs.

Agreed, it was far different with my eldest!

We were actually the ones that told the nursery that the assess plan do review needs to be a regular cycle! We have another review date agreed for the end of April, but this will be the first review they’ve done! We’ve had to pester for months just to get this!

We have started emailing every bit of communication now as we’ve found that the nursery manager will often fib about things that have happened or been said, so at least if we have it in writing she can’t deny it!

We were referred to Portage by the health visiting team, but the referral was refused by Portage.

Good idea about the sleep clinic I will look into that this week!

I’ve not actually looked into charities that do grants for sensory aids. I didn’t even think about it! Thank you!

We’ve not had carers assessments or social care assessments although they were something I was looking into. I’ll request them.

Thank you so much!

Why was the Portage referral refused? If it was because they claimed DS’s needs weren’t serious enough you should pursue another referral.

Contact has a model letter on their website you can use to request a social care assessment for DC3.
Here is a model letter you can use to request a social care assessment for DC1.
Contact also has a model letter you can use to request carer’s assessments for you and DH. You can edit the letter to combine it with this one so you cover the legislation for both children and adults.

There’s lots of charities that do grants, loans, etc. for sensory toys and equipment. Have a look at NewLife, Boparan Trust, Family Fund, Children Today, Florence Nightingale Aid in Sickness Trust, Elifar Foundation, Variety. Some are means tested, others not. I haven’t looked for a while, but if they still do them, Caudwell Children has some sensory equipment that they subsidise.

Portage said they could not accept the referral at the present time with the reason being 'Does Not Meet Criteria'.

Thank you for the links. I’ll look at them tomorrow and send the requests for assessment.

Thank you for the list of charities also. I’ll take a look at those also.

Thank you so much for helping me. I really appreciate it!

I would ask Portage what criteria DS doesn’t meet. It may be your area doesn’t support DC already in nursery. But it could equally be they just don’t have the right information or evidence to support the referral.

Thank you. I will do.
Also I asked the nursery how much Additional Inclusion Funding he’s received. They told me it’s 11 hours a week.
It seems a low amount to me. What are your thoughts?
Can this be contested if need be?

Did you sign any inclusion funding paperwork?

No I didn’t

I would be deeply suspicious!

I know every area will do things differently, but I had to sign all the forms off and agree with what was written as well as write my own statement, and there were forms that the nursery HAD to complete and send back to the LA to demonstrate what the money was being spend on and how effective it was etc etc.

Not all areas require parents to sign. 11 hours isn’t a really low amount for early years inclusion funding. It is worth noting early years inclusion funding doesn’t legally ring fence provision. The route to legally guarantee more support is via an EHCP.

So is it just a case of hoping an EHCP is put in place soon to enable support?

Support should be given even without an EHCP, but the only way to guarantee and enforce the level of support DS requires is via an EHCP.

I see, thank you