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?

I guess just me then!

This all sounds so so stressful.
can children’s father not help at all in any way ?
are you in any support groups eg for parents of children with diabetes etc
are you getting all the support you’re entitled to as a carer ?

It's not just you. It's a hard thing to admit. It's a hard thing for others to hear.

It's generally just hard.

Does it get better? Some things get easier (or you develop strategies to cope) and some things get harder (or it's a new challenge if you're feeling positive)

I think parenting is intense at times for most people. For those with additional needs children it's hard more of the time.

You have a real mix of physical and neurodevelopmental challenges to deal with - that is a really tough combination.

Do you get time off when they're at school? You need some time to rest or you'll break.

Not really, when theyre at school im doing house repairs, cleaning, dealing with their paperwork or appointments, ordering meds, i get phoned 2-3 times a week by the school.
The rest of the time i feel like I cannot relax as I have to be on call 24/7.
Dad isn’t involved. No charities by me for parents like me!

Sounds awful. I'm so sorry it's like that.

Sounds utterly bloody exhausting.

The diabetes - I’m diabetic and waking 3+ times a night - is this for hypos, or routine blood glucose checks? It’s not sustainable either way so book with consultant to either lower insulin (if hypos) or make sure he has a monitor that will set off an alarm if it goes too low. No more unnecessary wake ups.

Hypos usually or highs.
Hes having a stressful time at school which is causing havoc. The nurses keep adjusting but we can’t find any good raitos right now.

It's really, really difficult.

My son has bowel issues as well amongst other things.

It's never ending and bloody exhausting. I feel you, OP.

Oh my gosh are you me? I also have type 1 neurodiverse children. I adore them but it’s so so hard and I am terrified of how they’re going to manage in adult life.

People have no idea how hard type 1 is or even what it is. You never switch off.

Do you have a social worker? Or can you refer yourself to one? My friend gets 4 nights a month respite care and also 8 hours a week for “direct payments” so that she can have someone to occupy her son who has Cerebal Palsy whilst she spends time with her other son (you can use them for various things)
Involving social services may seem daunting but it can be a helpful thing too as they can signpost you to what’s available
We are in a very small town and even we have things available so you may be surprised
I feel really bad for my friend and I just do my best to be there for her and to listen as a lot of things I can’t help her with practically but I think her just having someone to vent to helps so I am very sorry that your friends have fallen away due to childcare. I appreciate you have forms etc to do as do does my friend as often that’s all she gets chance to do in her free time but we do meet up for a coffee and a chat or the other day we went for a walk- so if you do get the opportunity to reconnect with an old friend or make a new one I think just being able to let it out would you a lot. It doesn’t have to be a night out.
There are also potentially Carers groups with meet ups?
My friend has told me she is surprised she hasn’t had a nervous breakdown by now so I don’t underestimate how hard it is
sending you a hug xx

It's hard, everything is just that little bit more of a challenge. Broken nights are awful, I am up at midnight every night to reposition, give meds, change feeds and change O2 probes then back up just before 6 to do it all again. Many nights I am up in between those times too. I am trying to book a holiday this week but can't find accommodation that is affordable but has all of the things we need, 'accessible' accommodation often just pays lip service to the needs of the disabled. There are appointments every week and almost every day there is at least one phone call from school. Everything, absolutely everything, is a battle.

It sounds relentless. I'm so sorry you don't have more support.

If it’s bouncing around despite being consistent with dosage, then (I know this is hard!) make sure he eats at the same time every day and never less than 2 hours before bed. I find eating close to bedtime means they’re asleep by the time they spike & it’s hard to find a pattern.

I feel for you, diabetes is really hard to control for me so I can only imagine with a child.

I can confirm, I only hope nobody turns up with insensitive comments about eating less sugar etc

It’s 24/7, literally, and utterly exhausting

Respite?? Sorry but that’s hilarious. Kids that desperately need it don’t even meet the threshold.

It is never-ending.

Does DS1 have anything about communication included in his EHCP? Have ARs been carried out correctly?

Have you had social care assessments? A carer’s assessment for you and assessment via the CwD team for DS. Sadly, many have to force the LA’s hand, though. It is another case of DC whose parents know the law, can advocate for their DC and if necessary go through the legal channels get better support. It shouldn’t be that way, but it isn’t going for change in the foreseeable. You could look at a carer rather than a babysitter. That way, all medical needs can be catered for and training can be provided.

@Seawolves I don’t know what type of holiday you are looking for or where you want to go, but have you heard of Trevassack in Cornwall? Or if you want a city break in London, Ablestay. Although neither are cheap!

I couldn’t have said it better.

I have two children, both with medical needs and one with SEN. Everyone finds parenting hard but I’m often aware that I’m living a very different life to many parents and one of their bad days is a relatively easy one for us. For me the worst bit is the anxiety - there’s so much to be on top of and i feel like I’m constantly failing them, especially the eldest who has SEN.

Someone which absolutely no idea always suggests this.

Of course it's not just you, but give people a chance to reply.
Most of us who can empathise our probably busy grappling with our own SEN kids at this time of day!

My children aren’t entitled to respite apparently, I have asked. Basically I’ve been told to just get on with it, I can see why mothers have comitted suicide over the sheer lack of support for their disabled children. I even reached out on facebook stupidly to my “friends & family”, not one person repiled but hey ho.

When children’s services refused to provide support, did you complain, ask for an independent review (that’s not so independent but is a stepping stone), then complain to the LGO? If not, it is worth requesting another assessment then doing so if refused. Depending on the specifics of your case, JR may be possible.

If you have to appeal the education side of things related to an EHCP, you can ask SENDIST to also look at the social care sections, getting an independent social worker assessment if necessary (if you can’t afford independent assessments and you aren’t eligible for legal aid, Parents in Need can sometimes help fund them). The recommendations SENDIST make for the social care sections aren’t quite the same as the decisions for the education sections, but if the LA refuse to follow them, you can look at JR (or the LGO). And some social care provision is actually special educational provision so should be in F of an EHCP.

Don’t want to read and run, but it’s not just you

it’s so, so hard. You’re doing the work of multiple people

Im signed up with my carers charity who have supported me last year when I cared for my ex-MIL (spilt up with my partner not long after!) who died of cancer so i will ask about an assessment tomorrow.
Communication wise, both can communicate. DS1 has trouble communicating longer thoughts/longer conversations but I have learned to tell him to stop& think about what he wants to say and he does and then is able to tell me his needs. Its mostly swearing though.

Yes I’m sick of it. One child with chronic anaphylactic food allergies, eczema, and a genetic condition that affects her lungs, ears and reproductive organs. The eczema is so severe she has to have a biological injection every two weeks. It also affects her eyes so drops are required daily. She requires daily chest physio. Every three months she has IVs via a port for 2 weeks. All this is done by me. Whilst working 4 days a week. Other child has suspected ARFID but thankfully nothing else. My husband was in an accident last year causing a severe TBI spending 6 months in various hospitals and is not able to contribute. I organise plan and execute everything in our lives. Not entitled to carers allowance. At burnout.

Ah, sorry, I meant communication between you and the school in relation to you saying DS1’s school doesn’t tell you anything. Although there should be provision to support DS’s communication with others in F too.

On their website, Contact has model letters you can use to request social care assessments if you want.