AIBU - Fed up of being a parent to disabled children?

[SENmumof22026]

Before I start I love both my children, they bring me so much joy & happiness and they have cracking personalities however days like today I have had enough.

DS1 has autism, ADHD, sleep disorder, learning disabilities.
DS1 has autism, problems with his bowels that doesn’t work properly & type one diabetes.

I just feel so alone, day in and day out this is my life. Neither sleep very well, DS1 struggles to sleep and refuses melatonin and with DS2 diabetes I can be up 3-4 times in the night with him.
I am constantly getting called into DS2 school when I pick him up as he rarely does his work despite being capable of doing it.

Starting the ECHP process this week with school, but I am not holding up much hope it will get done, the school SENCO was supposed to do a sen plan for him, had a meeting and we did the plan and then it never saw the light of day afterwards.
He constantly bounces around and just never stops talking from 6am to 11pm.
Been called into school numerous times lately as another child keeps complaining about mine, despite this boy picking on ds2 for his diabetes and making very nasty jokes the kid got away with the jokes saying it was “roasting” ds2 even though he didn’t find it funny.

DS1 is in a sen school, but they never tell me anything on his progress. I have to beg them to tell me how he’s doing, I didn’t even know if he was doing gcses or entry levels as they never bothered to tell me! Ds1 is a nightmare in the mornings and most of the time I have to taxi him in making ds2 late.
I’m constantly jumping appointment to appointment, no time to myself to even just sit down and let my brain unwind.

Not one of my family members help, my mum makes all the right noises but spends most the time moaning about my nan or my brother which is grinding me down.
I have no friends, lost them over the years as I can’t get a babysitter that’s trained in type one diabetes or sen needs.

I just feel really grinded down and fed up today. Does it ever get any better?

It is exhausting and it feels very lonely. People talk about parenting being hard for everyone as if they are in the same boat. I had a child without disabilities 12 years before my disabled one and it does not compare, not even close. The constant anxiety and worry not only for now but for the future. The never knowing how a day is going to go, sometimes it is non stop for days and I can't even shower. Thinking progress has been made then there's another regression. Having to constantly monitor and guess what's going on because they don't have the ability to reliably communicate.
I don't know if it gets easier. I'm still in the thick of it. I do work with adults with disabilities and there is more support in theory once they hit 18 as it's no longer the parents' responsibility, however, finding good quality accommodation and care agencies isn't always easy.
I wish I could provide some good advice but all I can give is solidarity.

That sounds horribly difficult.

As regards thinking the school won't do the EHCP, as you probably know you can get the ball rolling and apply for one yourself. They are then under a statutory deadline to respond.

I hear you my oldest has type 3c ( treated as type1 diabetes ) and my youngest is severely autistic
We do get overnight respite but I need to point to other posters that it took years to get it and unfortunately its generally only available to those children with highest needs and csn be very area dependent.

I have a friend with SEN children and honestly it sounds relentless, there’s no getting off the round a bout. I think trying again for some respite might be the way to go.

The issue is you are soooo tired from daily life but supppse to advocate for yourself and push for all the extra support none of which you have the energy for. Is there anyone else who can help with the paperwork / phone calls etc?

Is your mum in a position to help? If so, could you be really honest about how burnt out you are and ask whether she might be able to offer a few hours of respite every other weekend?

Yes, it’s relentless.

My kids are a mix of autism, adhd, severe anxiety, trouble with sleep, social issues.

One so ill they’ve been out of the long fought for specialist setting since may with threats of off rolling.

Between meltdowns, shutdowns & agoraphobia and constant deregulation we’re exhausted & that’s before you think about the shit show that’s work.

Constant meetings. Every morning is a battle & we’re having to ferry one of them 45
minutes each way to school. Then attempt to get though the working day & make sure you get your work done correctly & on time.

My house is disaster as one of them needs almost constant supervision/entertaining. I can’t hoover as the noise is triggering. Even putting the kettle on is rolling the dice.

We are exhausted. I don’t know how much longer we can keep going.

Oh gosh, you can tell i’m tired. 😂

Nothing in the echp for communication! Most I get told if he needs his migraine tablets or hurts himself. Don’t get told anything else, such if hes having a bad day etc hes in year ten and not due a echp review till next year now. Trouble with a carer is that again its funding!
I will speak to my carer advisor tomorrow if she’s around and ask about this, last time I asked for help getting respite and they tried to help but it was denied.

She won’t help, she is two hours away and won’t have either of them overnight.
I have asked before if she would be willing to have them for a few days at hers or mine, but she’s scared DS will need insulin/go low in the night and that she will panic even if my dads there to support her it’s still a no. She doesn’t even like watching him by herself for a few hours and then moans about having to help my eldery (but very active in the community still) nan.

If you request social care assessments and are refused assessments or assessed but refused support, post back on MN for next steps on how to challenge the decision.

You can request an early review of the EHCP if you want/need. On their website, IPSEA has a model letter you can use.

If you are not due one before, the next AR should be in the autumn term of Y11 for phase transfer.

Do you know any other diabetic parents? I’m fortunate enough to have a community and have met some other parents locally who are always in my phone for a rant or help when needed.

That sounds really hard, OP.

This will sound like another job to do, but the local Disability Direct offered me 12 weeks of counselling, as I am a carer for my disabled daughter. She has lower care needs than your children. It did really help. I could say the taboo things and ponder over whether I'd have still had her, had I known, in safety and compassion. It was free, I self-,referred and it started within 2 weeks of me asking. Might be worth a look.

Why is dad not involved at all?? You had two kids surely he must be invested (hopeful I guess but he might be a complete let down!!)

I get it it’s crap! There is no reason you shouldn’t know about your son’s options though ?? There is an annual review every year. If not, call and ask, it’s not rocket science.

I have severely disabled child, I know it’s shit, you can’t expect to live like someone with normal child. Fact.

Bring the parent of Sen children is EXHAUSTING. You’re just in a constant state of worry and there’s always something you need to do. Sleep is a nightmare, there little to no support and it’s just constantly having to fight for everything.

I know his options now, originally they had him down for just one GCSE but I know he’s able to do science as well. Managed to get him swapped from
entry to gcse and hes doing great, the school did apologise for putting him in the wrong level without consulting me. But still the communication is deafening I only hear off his science teacher the other teachers don’t tell me anything they even took him on a trip to a college I didn’t know until he came home and told me!

Yes I do, but their children are much younger so not quite the same. He’s part of a diabetic kids group but its all over the county the meet ups so we struggle to go mainly.

Yes, it's hard.

There is no support out there. There is no money out there for respite. Your children aren't disabled enough to be considered.

I'm sorry that I have no words of comfort to offer you. You're doing a bloody amazing job with the hand life has dealt you.

Keep loving your kids hard.

Sometimes love isn’t enough though, it has me resenting people. I am becoming really bitter as a person.
Can’t stand my own parents, I was diagnosed later adulthood with autism & a genetic condition of Ehlers Danlos syndrome (which I suspect ds1 also has but genetic testing takes years) and if I had known before my dc i wouldn’t of had dc as it wouldn’t of been fair to pass on, but my parents couldn’t be bothered with all that hassle of trying to figure out what was going on. More interested in what was at the bottom of a wine bottle.

Think I’m just having a bad week, off to see if the senco will do dc2 echp today fingers crossed she actually acts on this one. Is there any way of knowing shes put in for one as I don’t trust her after the sen plan she failed to do.

The EHCP is a legal document which the LA do ,if the SENCO hasent applied for it you can apply for it yourself as the parent.

thanks, ill give it two weeks if not appiled I will just do it myself. I have a horrible feeling she will say she’s doing it and then not bother.

On their website, IPSEA has a model letter you can use if you want to make the EHCNA request yourself.

Echp meeting went okay, shes going to run mutiple assessments on dc2 she said right now if we requested it would be denied which she doesn’t want to happen so shes going to get mutiple teams involved and assess him and before easter hols put in for an echp. He’s being allowed to use the “nuture” room for sen kids one or two days a week to stop him burning out & shuting down and once a week see the school counsellor to help him with his diabetes & feeling like he doesn’t fit in.
So here’s hoping it helps, feeling slightly more optimistic. It might not be respite but if it helps him feel happier its a win, win all around.

I'm so sorry it's so tough OP - my oldest two both have SEN, eldest with more significant needs - neither have any major physical problems but I find it hard enough going even with DH's support.

On a purely practical level, for babysitting (and realise this very much depends on where you are in the country) do you have a local medical school, or university that does nursing? If so, students there may well be open to being taught how to manage the T1DM for babysitting purposes, obviously with you reachable by phone for backup. I'm a doctor and as a student babysat occasionally for a little boy with very significant physical needs, because I was up for being taught all the stuff that needed to be done. They paid me a bit more than basic student babysitter rate, but a lot less than a childcare agency had been asking for someone fully trained to manage his needs! Plus medical/ nursing students will all be DBS checked, usually up for acting quickly in a crisis (even if the action required is 'call an ambulance' you don't want someone who will flap), and like most students are chronically in need of cash.

Personally, I wouldn’t wait. I would make the request yourself now. The threshold for an EHCNA Is relatively low. You only have to show DS a) has or may have SEN, and b) may need special educational provision to be made via an EHCP.

I'm so sorry OP this all sounds so much especially one person. You sound like you are doing such a good job for them and it's great your son is doing his GCSEs.

I was thinking today how stupid it is that parents of disabled kids usually get no respite however if they said they couldn't cope or neglected the kids they'd be taken into care and looked after 24/7 by staff that work incredibly hard but get to go home and sleep at the end of their shifts whilst other staff come on shift. Surely it makes far more sense to give parents a bit of time to re-charge so they can continue to care for their kids most of the time so full-time residential care isn't needed as often.