Your own needs as a SEN parent

[Fififizz]

I’m struggling with meeting my own needs as well as my child’s. Wondering if this is common? I’m an older mum so in the menopause too which I’m sure is impacting. My son has lots of little needs, which added together are quite significant. That’s how the EP described it and pretty well sums up the situation. He’s ASC with other bits thrown in. Executive function is a big one and I support massively behind the scenes. It’s almost like I’m the executive function brain for two people which I suppose I am. I have to plan for my son’s needs ahead of my own otherwise he’d flounder (he’s a teen) so I’m constantly putting myself at the bottom of the list. I know that’s a mum’s role but I suppose now the menopause has hit I’m struggling with everything a lot more. I wondered if anyone had managed to find a good balance between supporting themselves and meeting their own needs as a person and supporting their child too?

I here you @Fififizz, especially about being the executive function.

My eldest has been diagnosed with ADHD, youngest is being assessed and it's pretty obvious that Me and DH also have it although we've not been assessed.

So yes, I have to try and think of everything for the DC before I do anything for myself. The result being that my car is currently sitting in the drive with neither insurance or tax as I forgot to do it two days ago 🤦‍♀️

@PinkMimosa
Thanks for hearing me! I’m not helped by my own executive function being hammered by the menopause. I used to be so ‘on it’. I’m sorry to hear about your car. It’s so easy to overlook things when your focus is elsewhere. I’m just not sure how to start supporting my son to be more self reliant and responsible. He just seems oblivious to things. He’s a teenager now and we haven’t even cracked basics like consistent toothbrushing and showering. It’s not sensory either, it seems more like he just hasn’t got the idea about getting himself into a routine with these things and yet whilst I have to keep taking responsibility by chivvying him along he’s not doing so either. 🤷‍♀️

Does DS have an EHCP? If so, does it include therapies and PfA provision? Does it include anything like Brain in Hand?

Have you had social care assessments?

@ThomasWasTortured
Yes he has an EHCP.

I haven’t heard of PfA, what’s that please? Or Brain in Hand.

I do wonder if he has inattentive ADHD but CAMHS said no and that his difficulties are all attributable to ASC. I still wonder about that though as all CAMHS input seemed to be focused around finding evidence for hyperactive type behaviour and that’s not how inattentive ADHD presents from what I’ve read.

No. I didn’t understand about requesting a social care assessment at the time. Getting the EHCP was such a horrendous fight I’m not sure I can go through it again for social care.

Sounds like you need an early review of the EHCP as it needs amending to better meet DS’s needs. PfA is preparation for adulthood. From the Y9 review it should be considered with support in the EHCP. It also needs OT included as that can look at daily living skills and independence skills. Brain in Hand is a form of assistive technology that can help with executive function, remembering/routines, problem solving…, there are other similar systems.

Personally, I would be requesting social care assessments. A carer’s assessment for you and an assessment by the disabled children’s team or adult social care (depending on DS’s age) for DS. If DS is a child Contact have model letter’s you can use on their website.

Snap!

DC has ADHD/ASD.

I am struggling at work despite HRT. My memory is so shot - just missed a medical appointment despite large sign on fridge. Extended wrangling over EHCP has meant a lot forensic attention to paperwork. It's a lot, when your child's needs are already significant (I reckon I clean kitchen 4-5 x more often daily when in a school holiday than when DC is out of the house.)

DC loses everything, which is a trigger for aggressive behaviour, but they won't permit me in there room very often, which I try and respect as they are a teen.

I may try and see a menopause specialist to check whether there is anything else that can be done to restore my cognitive functioning.

OP what’s your situation? Do you have other dc, are you working? Do you have a DP to share the load?

Have you looked into HRT?

everydaybatperson how are you sleeping? A lack of sleep has a big impact on cognitive function.

@ThomasWasTortured
Thanks for the info. There’s a myriad of reports from the EHCP process but the actual plan is still large and clunky. The final plan’s so dependent on the quality of the reports that feed into it. It was such a steep learning curve and so horrific getting the plan I’ve been scared to engage with other services for fear of upsetting things. The placement we now have is pretty good compared to before.

Son will be going into yr9 so I need to start thinking about PfI, he has zero independence skills and zero interest in acquiring any currently! 🙈

Is there anything helpful I can read about a social care assessment to explain it before I bite the bullet and request one? Like what can be provided. My experience of our LA is sadly tainted by the EHCP process. I tried to read and read all about that and it still ended up being a mysterious and torturous process.

Thanks for your replies previously and your help.

If the EHCP is woolly and vague without all the provision necessary you can request an early review and then appeal when you next have the right of appeal. A vague and woolly EHCP without the necessary provision isn’t worth the paper it is written on, sadly. If you do appeal and need independent assessments but aren’t eligible for legal aid Parents in Need can sometimes help fund reports.

As well as model letters Contact have information and booklets on their website explaining the legislation behind social care assessments, the process and what support it can provide. For example, the support could be direct payments for a PA, support at home, social and recreational opportunities, equipment, adaptations, counselling… I even know a few people who have had cleaners funded.

Do you have any friends who are parents of sen kids? That was a game changer for me. We try and go out for the night once every few months and it resets me so well.
On a weekend, DH and I take turns at having a lie in. It's something we started when DS was tiny and now we just have it as me time. Its great to refresh and rebalance, then I'm good to go for family time as a relaxed and regulated mum. Little things but they all help.

@Fififizz - have PM'd you with an account of a social care assessment.

Know what you mean about the EHCP process - I found the gas lighting and the casual disregarding of evidence in order to reduce provision, traumatic. I'd give your LA a ring and see whether the assessment will be done my the disabled children's team, or by generalists (child protection). If the latter think carefully. Cerebra research report.

@everydaybatperson
Thanks for your insight, tips and the heads up. I’ll investigate.

I have a feeling, based on the experience of others in our LA, we won’t qualify under the disabled children’s team but I get the impression, again, from others with our LA that the general team aren’t much cop even if they’re main agenda is safeguarding. It’s good to be forewarned though.

The whole EHCP process was hugely traumatising for the exact reasons you say. We did secure a great placement on appeal but I’m worrying now about what comes after school and being prepared for stuff which the current EHCP doesn’t yet cover. I was told if we get any social care provision awarded now via a PB it can really help with provision post 18 too as adult for social care there’s very little provision available. However, it’s all hearsay as different LA’s operate differently.

@MoominMamasTribe
Not really. We were late diagnosis and struggled through mainstream not really fitting in/ having it work but not knowing why. That experience alone was isolating from others and then during lockdown I did the parental request and fought for a plan and a suitable placement at appeal. It was hard. Now the specialist school’s a taxi journey away so I don’t meet the other parents. I’m active in various FB groups which helps and on here is a big support too. The teenage years are a shock though and not easy.

If you request social care assessments and aren’t assessed by the CwD team do challenge it.

In the future you appeal the educational side of the EHCP again at any point you can ask SENDIST to look at social care provision too.

@ThomasWasTortured
Thanks. I’ve been told informally that our LA child disability team won’t assess unless the child has a complex physical need. Our LA broke so many rules during the EHCP assessment though I’d happily challenge them on anything they actually tell me as a fact!

I was hoping I’d never have to go through another appeal ever again. The deceit, delaying tactics, ignoring procedural requirements etc was horrific. Wishful thinking maybe….

I know a few LAs who try to say the same about only assessing DC with complex needs, such a blanket policy is unlawful though and can be challenged.

The deceit, delaying tactics, ignoring procedural requirements

Sadly, this is all too common. I think every parent hopes to never have to appeal again, unfortunately many do have to. The system is broken, I don’t know how it can ever recover.

@ThomasWasTortured
No, it’s a dreadful process. I don’t even know how our LA has the nerve to call it a ‘service’. It definitely isn’t that! The appeal process is a particular kind of hell and we were relatively lucky as the waiting times now are unbelievable. I feel sorry for other parents and kids.

Our LA doesn’t even appear to have a CwD team now! Look…

‘Disabled children and young people

Information about the referral and assessment process for children who have substantial and permanent disabilities.
Review of services provided to disabled children

There is an ongoing review of social care support for disabled children in our area.
Requests for further information, including assessments, should be made to our customer service centre. Contact us.’

@ThomasWasTortured
I’m assuming you can challenge any blanket policy on the grounds of the LA setting its own unlawful criteria about how disabled you need to be to be assessed by their CwD team? As in are the LA with such a policy suggesting a child isn’t disabled enough to be included in an assessment by their CwD team? That’s a pretty dire state of affairs for an LA but nothing would surprise me nowadays!

Your LA will have a CwD team even if they are being called something else and can’t be contacted directly.

LAs cannot gate-keep by limiting assessments/support to those with certain types of disability. Other unlawful reasons include: too young, too old, no diagnosis, too academically able, attends MS… Steve Broach has previously written about some unlawful practices. Where I have supported parents in similar situations with EHCP appeals SENDIST have recommended the involvement of the CwD team (although SENDIST social care ‘recommendations’ aren’t legally binding they are expected to follow them and depending on specifics if they don’t they may be open to challenge via JR or LGO). Including one situation where the LA told SENDIST autism wasn’t a disability!

Besides any DC with an EHCP does have substantial needs otherwise they wouldn’t have an EHCP.

@ThomasWasTortured
Thanks. I wouldn’t put it past our LA to be using the review as some peculiar form of gatekeeping too. I’ll make enquiries.

Thanks for expanding on the reasons they cannot lawfully refuse either. That makes sense.

I get confused about the role of SENDIST now with social care. Is the trial for appealing social care still running? Can you only add on a social care appeal to an EHCP contents appeal? I have a feeling this was how it was done previously. I understand that any recommendations the Tribunal makes are only advisory but in practice the LA are likely to follow unless they want to face further action.

Your knowledge is amazing and I’m very grateful for the input. Half the battle for parents is actually getting information about the system in the first place. The EHCP was a baptism of fire and I know more now than I did before but still find it’s all confusing and a minefield at times. The LA still did a number on me as by rights I could and should have insisted on a social care assessment with the EHCP but when I got a ‘not known to service from MAST’ I left it as I was expending all my energy on pursuing an OT assessment which eventually I did get.

It is no longer called the National Trial but SENDIST still have Extended Powers. All EHCP appeals other than refusal to assess can also look at social care and health.

Half the battle for parents is actually getting information about the system in the first place.

This is so true. Unfortunately, DC whose parents know the system and can advocate for them to enforce their rights get better support. It shouldn’t be like that, but isn’t going to change any time soon. This is why I’m a firm believer parents should be supported through the process, and supported to challenge unlawful practices rather than accept them.

@ThomasWasTortured
Thank you.

I was loosely calculating that if I start getting assessments now then I should have reports to inform the next AR or even the one beyond that and can pursue appeal rights then as necessary.

From previous experience everything takes so long as well. Particularly if you have to make internal complaints to the LA get things to happen!

Going into yr9 I’m looking ahead to try ensure the future EHCP is fit for purpose and provides support for PfI and whatever comes post yr11.

I’ve now found the contact details for the Head of the Disabled Children’s service. So regardless of any ‘review’ the service exists and therefore should be able to assess upon receipt of a request!

That sounds like a good plan. If the LA do agree to support without having to appeal, the support should begin following the assessment, you don’t need to wait for the next AR.

For PfA these 2 links are a good starting point - resources from the NDTi and checklist from educational equality (not all will be relevant for all DC, especially as a young teen, but it’s a helpful guide).

@ThomasWasTortured
Thank you.

Currently I’m struggling to find the ‘threshold documents’ mentioned in the Cerebra guide that set out the terms of reference/delivery for a CwD needs assessment. I don’t think our LA have made them available anywhere that I can sensibly see they’d be they’re not obviously under CYPS info of the local offer. The LA are probably utilising the ‘under review’ to fullest effect. I feel I’ll be complaining about this process before it’s even begun at this rate!