EHCP process and dealing with EBSA for 2 children at the same time

[MumofMaskers]

I’m looking for advice from anyone who has gone through the EHCP process for two children at the same time, while managing their needs and EBSA. I thought I could handle it with one but now it's both and I am not equipped to deal.

They are both masking at school but struggling significantly at home. We are either in EBSA territory or heading there with both of them (DD7 is on reduced timetable since before Christmas, DS5 now struggling to do full days most days).

They have different presentations but both probably ASD/ADHD and sensory challenges. Both hold it together in school to some degree and then unravel at home. They have big feelings and have both expressed in different ways that they want to die or have tried to hurt themselves, which is very scary at their young ages. My son in particular is exhibiting unsafe behaviours and we had an incident which led to my daughter being harmed and needing to remove all sharp objects in our house a few weeks ago. I am exhausted and often the recipient of his aggression before we get out of the door in the morning.

At the moment I feel like I am juggling SEND paperwork, chasing a small school with a one-day-a-week SENCO, trying to evidence needs that aren’t always visible in class, managing reduced attendance, doing bits of home learning, and regulating two dysregulated children.

Because they aren’t “causing problems” in class, I don’t always feel taken seriously. There’s a constant undertone of “they seem fine here.” Meanwhile I’m picking them up after an hour some days and feeling like I’ve failed at basic parenting and schooling.

We applied for an ECHNA for my daughter before Xmas and had a meeting with the LA a while back, following refusal to assess. On hearing what is happening with my son they said we should start the EHCNA process for him too. I know this is probably right. But I can't get any time with the school to discuss a plan.

Has anyone navigated two EHCP processes at once? How did you manage the admin and advocacy without burning out completely? How did you evidence needs when your children masked in school? Did things get worse before they got better?

I also have moments where I think about home educating just to remove the daily trauma, but realistically I don’t think that’s sustainable for our family long-term, and I worry about losing access to support altogether.

I suppose I’m asking both for practical advice and some reassurance from people further down the line. How do you get through this phase without losing your mind?

Sorry this is long and rambling.

@MumofMaskers @ExistingonCoffee
thanks both!

appreciate the advice. It turns out the back dating was an error.

We’ve decided to deregister rather than continue battling them and put our energy into our ds who deserves it far more than an utterly broken system.

I’m unsure what the other poster is referring to so just ignoring that!!

@MumofMaskers hope you’re all doing ok 💐

@Seahorsesplendour wow - good for you. It's a hard decision but can totally understand why you've made it. I keep thinking about it myself but not sure I can cope with 2 at home in the long term.

Things still aren't great here, relieved it's the last week of term. I ended up having a complete breakdown in the school office last week which was embarrassing and now they probably think I'm unstable. We'd decided to stop sending my son in after the lack of support and insistence on the unsafe carrying him screaming etc, but I hadn't asked for a meeting with the HT or SENCO because frankly, it feels pointless. The head, who sat in a room with me and assured me last June when we moved them to this school, that they would support the children's needs, has completely disappeared and I know he doesn't think what we're asking for is reasonable. I told my husband to take over comms with the school but he didn't. Then mid week I had an email from the SENCO saying she'd heard he hadn't been in school and couldn't he just try, then a shitty email from his teacher with home learning, saying I had to send it in with his sister and photos of him doing it. I snapped, and ended up driving to the school with an armful of his work, and lost it in the office.

Still no acknowledgment of anything from the SENCO or anyone else so it's stalemate really. My husband went there on Friday to talk to them and they just agreed they'll communicate with him from now on.

Oh dear @MumofMaskers that sounds really tough and upsetting!

Make sure DH follows up with an email. He should also request a meeting, then again follow up with an email. At this point, it isn’t just about the school pulling their finger out. It is about creating evidence.

Got called in by the head this morning, I know it doesn't make much difference at this point as he still clearly doesn't get it but I hate the feeling of being made to feel like I'm doing something wrong and failing my child.

Im a bit late to this.

I have 2 kids with SEN, done 2 appeals, one specialist, one EOTAS and currently going through S19.

It is bloody hard. Its shit, demoralising, relentless. With my eldest when she was younger I did force her to school and its something that I regret and always will it made her incredibly mentally unwell.

Here's some things I wish someone had told me, or things that I do now to help.

You know your children best and your gut instinct is spot on. Trust and have faith in yourself. We hear "mum knows best" a lot through the early years and then they get to school and especially with SEN children, suddenly the LA thinks they know best after reading a peice of paper. YOU know best.

If you have the financial means, consider a SEND advocate, a good one takes a huge weight off of you, they communicate with the LA, chase reports etc. Honestly, they're a life saver.

It seems simple, but sit down and have a think about what your kids need right now. School, is it helpful? Does it make them happy or sad? Work out what it is they need and do it. Dont worry about others opinion, follow that instinct.

Think about what you need. Whats getting on top of you and what can you do about it. Hellofresh/gousto/ ready meals, safe foods. Set up a snack tray the kids can graze on and juice bottles. This helped me feel like I didnt get up as soon as I sat down. If dinners a little late, you know they have snacks. And hopefully it reduces pressure.

On my worst days id repeat "everyone's fed, no ones dead" and it helps.

Cleaning/tidying, short term, paper plates. Do a quick 10minute sweep.

"Better, not perfect" my absolute favourite. I was so set on solving issues, that i forgot that I may not be able to solve the issue, but I can make it better. My daughter has complex needs and eats in her bedroom but bringing plates down is too much of coordinated steps that she couldn't manage or remember. So I bought a black tub with a lid, that goes out side her room. The plates etc, she puts in the tub, its outside her door so she has a reminder and its less processing. I empty and wash stuff up every other day. Bow the absolute ideal would be that she brings her plate down once shes finished but that wasnt achievable. So I made the situation better. I do this with everything now.

It is so tough and the pressure is immense.

5pm is my shut off time. At 5pm I know im not going to get any answers for the day. If theres something you need to do. Set yourself a limit of 30 mins or an hour. Its better to have spent some time on it and not feel the heaviness of the overwhelm after which then you struggle to sleep. Have a transition ritual from SEND admin etc, to evening, cup of tea with a particular biscuit (chocolate hobnobs for me).

You may not feel like it, but youre doing amazing.

@SENcatsandfish thank you so much for this, truly. Crying reading this after an absolutely awful morning. My last ritual for my sanity was popping to Sainsbury's to get a Costa after drop off, and now I have my son with me all the time even that's no longer possible because the toy aisle causes issues. I thought I'd try it this morning just because I really needed a few bits and wanted my coffee, but it resulted in a huge meltdown, the kind where others are either staring or intervening, him running away, trapping himself in the self checkout area, then eventually smashing his head into mine when we got in the car. I feel so broken.

Your advice is all spot on, I will re read it again later when I've calmed down a bit and try and take it all in. One positive for this week is that I've managed to pin down a date for one of the best ed psychs in our area to come and assess both of the kids in June, so trying to hold onto the wins. Even if they take a long time to come to fruition.

If you need to manage the money side of things, you should prioritise money for independent assessments over representation. The best representation in the country can only work with the evidence. If there’s no evidence or weaker evidence, the case is much weaker.

If you go down the advocate route, choose wisely. It is an unregulated area and while there are some good ones, there are also ones who do more harm than good.

My current thinking is:
Private EP for both
Son needs ASD diagnosis but on long waiting list and struggling to even get RTC but hoping that will work out - the EP we chose should be able to pick up on the ASD traits anyway so even though he can't diagnose he can assess and state need
Advocate - yes if we need and have a situation where there's 2 appeals running at once and we're struggling to cope. Have had some good recommendations as I know you do need to be wary

It's a shame as I can't work now and all of our savings are having to be channelled into this instead of moving into a bigger home which we desperately need. But I know we're lucky to have some money to spend, not everyone is in that position.

That is depressing when something small like that seems impossible!

I have an AuDHD girl, now a teen, and I remember getting absolutely unreasonably annoyed because she wouldn't let me do a drawing for 5 minutes in peace even though we were in a perfectly nice playground.

You WILL get coffee in peace.

Just not this year probably.

Can you make yourself a nice coffee in a keep cup, keep a stash of only tasty to you treats in your bag (mint Aeros work here!) and have your coffee somewhere DS won't cause havoc?

Online shopping/DH does shopping.

I don't think in the short term moving house would help because it's stressful and paperwork heavy in itself.

Yes, there's a few things I probably need to let go of/accept they might need to look different. I know it's so silly but my coffee ritual was so important to me! I just need to adapt it and let go of it, I guess it was a bit of a moment of peace in the day but it definitely isn't now.

And yes, agree re the house really, it's just we're in our too small house all the time and watching my son break things every day is so disheartening, I feel like we're too cramped. But two ECHPs is too much let alone a house move!

DH does do shopping at the weekend, but just need to get top up bits or nice biscuits sometimes.

It's not silly at all, it represents time, compassion, peace for yourself. Its something that matters to you, and when thats taken away from you, of course thats going to feel shit. Its something that a lot of people take for granted, and its difficult when a part of what makes you you, outside of being your children's carer, advocate, voice etc, gets taken away too. Because you realise that at the moment you cant be a mum that pops to costa after the school run. And really, its not a lot to want.

The suggestion of getting nice coffee/treats is a really good shout. If its possible in your area you could even get a costa delivered, obviously not everyday but say on a friday maybe. Its not the same I know, but its an option.

100% if you go down the advocate route, research and ask around. Because there absolutely are some rubbish ones. But there are some brilliant ones too.

It really is so hard, and its ok to feel that and to feel like its something you just dont want to have to do. Fighting so hard for your kids to get access to basic education feels so unfair, because it is.

Do you drive? How is DS in the car? Do you have a drive through coffee shop locally? Would that be easier? I have been known to make a de-tour unless I’m with DS1 who can’t cope with that.

Have DC had a home OT assessment?

When you say the house is too small, is it only too small because of DC’s SEN? If so, you could look at a Disabled Facilities Grant. Not quick or easy and more stress, but something that may help longer term.

Can you afford to have shopping delivered rather than DH going shopping? Free up a small amount of time.

@SENcatsandfish yes that's exactly it, it's that gradual erosion until there's so little left. My job was first, then things like I joined a gym with off peak membership just before my kids stopped being able to go to school, so I now can't use it. You end up feeling trapped.

Costa delivery and drive through are good shouts - my son can be ok in the car depending on the day, it's a bit of a drive to get one but could be worth doing!

@ExistingonCoffee We haven't had a home assessment for OT, but I'd like one. They've both had private assessments but home visits weren't offered. It's really hard to get OT round here, I have tried a few times on the local NHS pathway but you have to do courses, implement strategies then wait 3 months. I always end up giving up.

I think we just generally need a bigger house, hopefully one day but it probably has to wait for now.

We just started shopping at Aldi after years of online delivery - so annoying they don't deliver! But we could always switch back to online.

I completely get that. I did the same and havent been to the gym in months.

My kids are pretty good in the car, i make them a snack pack, drink and I just drive. Ive been known to drive them to McDonald's for a mcflurry just to get out. My home stopped feeling like a home and started feeling like a prison.

For shopping, I actually enjoy shopping on my own so when I couldn't actually do the shopping it was rubbish. If you enjoy shopping then could you alternate with your husband?

I often use amazon morrisons. You can get next day free delivery, link your morrisons more card, it comes in bags (which makes it so much easier for me) and they often have money off coupons, especially for a first time delivery, I think the current offer is £20 off a £70 shop.

Another thing I find useful and bare with me because it sounds a bit odd. I had therapy last year and one of the things I was taught about problem solving was to write down the problem and then think of ways to solve it, BUT it could be anything, if the problem is for example, my car has broken down and I need to get to my appointment, as well as the sensible suggestions of public transport etc, there are silly ones too, like hire a hot air balloon, steal a helicopter, and though this sounds odd, it really helps to open up your problem solving brain and help you think of a solution better.

@SENcatsandfish Yes I normally enjoy it as it's a bit of me time, but I can't at the moment because of my back - too many heavy bags! Yes, have used the Morrisons delivery a few times for an emergency shop and it's so fast, bit of a lifesaver especially if I feel it's one of those days a shop visit would be disastrous.

How do I know if he's in burnout? We really have tried to reduce demands this week but from morning to night he get so distressed at any demands, perceived corrections or being stopped from doing something dangerous, he lashes out and hits us, we stop him again and the cycle continues. The easter holidays are going to be fun.

I really like that tip from your therapist - it makes total sense. I will give it a go!

Burnout shows differently i think in the child.

My daughters burnout is more quiet, lethargic, low mood, tiredness, irritability.

My sons is a shorter fuse, easy to trigger, more emotional dysregulation.

When my daughter was younger and I was first putting together she might have SEN i would watch her, what her facial expressions and body language was doing. And I realised that she wasnt ignoring me or anything, there were distractions, the tv, I saw her eyes go to the tv and I literally saw "can you get your pyjamas on" erase from her brain.

Along this line, I started picking apart what was happening with a meltdown. Id think more generally, are they ill? Hungry? Did they sleep well? And note that. Then id "analyse" the 10minutes before, where were they, what could they see? Smell? Did they step on something? Fidget with their clothing so maybe a sensory issues. Id put myself in his shoes, id imagine i was sensitive to the things hes sensitive too. What caused the tipping point. How the meltdown progressed, what my actions were, did they help or hinder, what could I do differently.

This helped me try and work out my sons pattern and there are patterns with my son.

It helped me also think of what I could try next time and that gave me some hope.

My son still has meltdowns and there are still difficult times. But I can sometimes see his triggers and redirect or interrupt the pattern. I think of it like my son getting on a bus heading to the depot, my aim is to help him get off at the bus stop as soon as possible. If my son is tired (poor sleep) then I know I likely wont be able to. And knowing a bit more about where we are heading helps me because it doesnt come as such of a shock.

This is just stuff thats helped me and might not help for others.

Yes - this is exactly how it is with my children. My daughter went through burnout last year and it was quieter, less noticeable until it wasn't, no major meltdowns but it was like all her distress was directed inwards, tummy aches, unable to sleep, really withdrawn and distressing thoughts.

It's totally different with my son and more externalised so it feels relentless as he needs constant supervision. Constantly scanning to make sure he's safe, he's climbing, jumping off everything, pulling down curtains and then there's the hurting people, plus the fun of random weeing in places this last few weeks. He is never calm or still - at best it's major sensory seeking and chaos, at worst inflicting pain on someone or himself. I do try to look at triggers, he doesn't want to eat a lot at the moment which is a bit of a vicious cycle. I will try and keep a diary though, that's a good idea. I have a running note on my phone anyway of what happens most days!

Hi,

Thought I'd see how you're doing? You sound exhausted. What kind of sensory equipment do you have? My son has a sensory swing, wobble board, balance board, spinning sensory chair, compression bedding, weighted blanket, this helps with movement, my son is always running around, he has "zoomies" every night about 5 for an hour where he runs from the back door to the front door being a dragon.

I might have missed it but how old is your son?

@SENcatsandfish thank you, that's kind. I am exhausted - just slightly grateful for the holidays and no school to deal with, but of course no easier at home.

My son is 5 (just) - we don't have enough sensory stuff although we've tried and borrowed things over the last few years, but that's part of the reason for wanting to move, to have more space for this stuff. He has an indoor trampoline, weighted blanket, sleep sack type thing, but I would love things like a spinning chair. He also has this grappling dummy thing which sounds weird but he does jiu jitsu and it's really good for sensory feedback, he just kind of rolls around on the floor with it.

He is so full on at the moment, he cannot stand being corrected, told no, anything like that but as he is in full danger mode and often lashing out it's hard to be completely low demand and not slip into that, even though I know it doesn't help. His latest thing is going up to his bedroom and trying to open the window, saying he's going to jump out in these moments which is terrifying. We have window restrictors on the way but it's hard having to be so vigilant all the time. He is always climbing and using furniture to get to higher places etc. I'm amazed he's not seriously hurt himself yet.

Thats such a SEN parent thing, grateful for no school pressure, but then you've got the 24hr grind.

My son has definitely benefited from sensory equipment, the peanut ball is brilliant because my son also likes rolling around and the peanut ball is something he can roll off, on, sit on and move. Similarly the wobble board, because he can watch TV whilst wobbling. He needs to move.

Something that really helps me with the demand thing, is to give closed choices. For example, if its time to go upstairs for bed, instead of saying "come on then bed time let's get ready" ill ask "what toy do you want to take upstairs whilst we get ready for bed" "what pjs do you want to wear". Or "we are getting our shoes on, which socks do you want to wear" "which shoes do you want to wear?" It doesnt work all the time but ive found it can work really well because you are getting what you need (getting them ready for bed/shoes on) but they feel like they have a choice and control how they are doing it.

It sounds like your son is seeking proprioceptive feedback, so finding sensory equipment that supports that might help but obviously tricky if you dont have room. One thing my son likes is when we hold hands and he "crashes" into my well padded belly 😆 as it gives him that pressure and feeling.

Youre doing great btw

@SENcatsandfish such methods, adjusted for age, work surprisingly well on my 50-something almost certainly AuDHD husband 😂.

OP, do you have a green gym in a park near you? DD's always liked those and it's surprising what younger kids can do on them.

DD was praised by two muscular young men for her core strength once!

Thank you, it doesn't always feel like that! Regularly losing my patience. Today my husband is home with the kids while I am getting our windscreen replaced and sitting in a coffee shop while I wait. Bliss!

I will definitely try a peanut ball again, that's one that doesn't take up too much space. It's so frustrating, this is why I want to move especially as we are so housebound now and I dream of more space to allow the kids to do what they need to do to feel better. Maybe next year.

Proprioception is huge for both of my kids, especially my son. It is ridiculous as we live right next to a park with a few climbing frames and one of those outdoor gyms, but it's so hard to get him to go as he thinks it's boring! He is very driven by novelty so things wear off quickly. Maybe I could make into some kind of game. Also looking at local climbing walls, he is short for his age so they haven't been an option but he might just be big enough now.

My daughter is similar, people see her on the climbing frame at school and think she's a gymnast but she's not! It used to be a really good regulation tool for her when she was struggling to go in until the school put a stop to it.

Losing patience isn't something to feel guilty about on its own. We all have a natural tolerance, and when you're already heightened, when something tips over the edge it tips over higher. I remember days where I felt almost rage. Like a burning that I could not tolerate.

I did similar recently because we are home a lot too and its just a normal house with normal space. I turned my sons bedroom into a sensory bedroom. Took the legs off his bed which makes it floor level, as be prefers to be on the floor, it then created more room as his bed becomes part of the floor space.

Perceived demands, even going to the park and going out is still a demand and I find that my kids cope better when they have something else to focus on. 2 things I call it. So ill do the park, and headphones with an audio book. Headphones help my son feel a little distanced from the world, so things like going out dont seem as overwhelming. I might also do Pokemon go too, it gives a purpose, you can also do pokemon go in AR mode so you can take photos and catch the pokemon actually "in" the park, the pokemon might appear on a slide or something.

Is there anything your son is really into? That you can incorporate into a park trip?