I can’t do this anymore

[FranklyBoyle]

I can’t do this anymore. I have two children. An autistic 5 yr old girl and her sister who is 3. I don’t think the 3 year old is autistic but she likely is ND in some way. I don’t work. I was a teacher.

I hate my life. I can’t see a way out other than to go back to work full time and get a before and after school nanny. I’ve not done this yet as my autistic daughter is hard to care for and also is done in after school so we have tried to reduce stress on her.

We live with their dad who is helpful but has a shift job where the pattern and hours vary week on week. He can never do pick up or school drop off.

If I had one kid it’d be ok but the two of them and the dynamic makes it unbearable. I’m so tired of all the screaming and demands and the sibling dynamics. It’s hard to explain how awful it is. My autistic daughter can be lovely but at the moment she is upsetting her sister a lot and shouting a lot. She interrupts all the time and her sister gets so frustrated. She can’t communicate clearly which leads to so many issues. For example, her sister had taken her special teddy and the autistic daughter was so upset. I told the 3 year old to give it back otherwise she wouldn’t get any crisps. The 3 year old didn’t give it back so I said no crisps. We were in the car after school.
The autistic girl started screaming “give Jane the crisps” (not her real name). I thought she was saying this because she didn’t want Jane to have a tantrum (she hates the noise). In hindsight I realise it’s because she wanted the crisps and Jane normally gives her some. She has a different snack after school but Jane usually shares her crisps. But her communication is different so she couldn’t work out to say “can I have some crisps”. She screamed and screamed and screamed, kicked my seat, grabbed the hood of my coat as I was driving. She grabbed and hurt her sister’s arm. I almost crashed the car. She bit me when we got home. It was so awful. This is one example but it is like this a lot. I hate my life. I see the other families after school and the kids look so happy and like things are easier.

I’m so scared of getting a job. I was a pretty good teacher but not that experienced before I went on maternity leave for the second time and now haven’t taught in 4 years. I’ve lost all my confidence and my life is a wreck. Teaching is so intense and stressful and I honestly don’t know how I would do it and then come home to the shit show that is my life.

How can I change my life? I wish I had never had kids because it has destroyed my life but I have had kids and I can’t change that. Going back to work, finding appropriate childcare…it seems impossible. I wish I could just put her in breakfast club and after school club but she would not cope.

She doesn’t have an EHCP. I’m currently appealing a refusal to assess.

I know I sound utterly pathetic. Please don’t reply if you want to have a go. I feel so low

You need a Crelling harness for the car.

Have you had social care assessments? A carer’s assessment for you and an assessment via the disabled children’s team for DD1?

If DD was diagnosed within the last year Scope have a mentoring programme to support parents.

Have you contacted HomeStart to see if they can support you in your area?

I am so sorry you are going through this. Applying for social care support via your local authority may mean you could get some more support / an enabler. It sounds really tough. We have different issues as my disabled daughter has epilepsy so that is our main challenge but I know how utterly exhausting being a parent carer can be. Contact are a good charity for general support. A call to them may help point you in the right direction for support.

Thank you both for replying. I don’t understand about social care….what could that provide? I can’t cope with the daily reality of caring for my two children and I don’t know that can help that other than someone else doing it for me.

it’s the before and after school times in particular. Presumably because there are so many demands on both children. But equally there are days when it’s totally fine.

I find my three year old such hard work but she probably suffers having a disabled sister. Or is I think ND herself in some way.

I feel utterly pathetic and useless. Im not working and I can’t even do the thing I’m not working for ie care for the kids.

Social care can provide access to respite, including direct payments.

Have you started to assessment process for DD2?

Sibs will be helpful to speak to regarding DD2 coping with DD1’s disability.

Are you claiming DLA for DD1?

We wouldn’t get a referral for DD2 yet….I’m not sure there is anything it’s just she’s extremely intelligent (eg taught herself to read) and struggles with managing her emotions and is very defiant. But also 3. I’m on the alert with it all though.

we do get DLA for DD1 and I claim carers allowance.

I’ll look into social care although I feel sceptical. I don’t want her taken away for a break so I get respite. She would be so stressed by that. I want someone else to look after them in the house so I don’t have to.

I feel a shell of who I was. And feel traumatised by the car journey which I’ve not been able go process yet.

I’ve not heard of sibs so I’ll look into that.

and I’ll look into home start too. But they’re both in school for 30 hours a week so I do get a break it’s just the dynamics of them after and before school are so tough. Im
obviously not good at it and feel shit that I can’t even do the thing i’m meant to do.

but I think going to work and being less scared of childcare has to be the answer.

Social care support doesn’t have to be away from you straight away. It could initially be someone to support DD at home or in community with you. Although don’t rule out building up to provision away from you. Many parents think their DC won’t come but they do cope better than expected once settled.

Thanks. They’re both in school 30 hours a week so I do get a break. It’s just I feel so pathetic for not working and my self esteem is low as it’s not like I’m doing a brilliant job of looking after my kids.

I hate the dynamics between them.
they play and our lovely sometimes but it is always so hard after school. Probably because school is overwhelming.

Sending a handhold. Concentrate on getting the EHCP, that is so important. Can you carve out some time just for you during the weekend or evenings? Away from home, a little break once or twice a week can help a lot. If going back to work is best for your mental health, do it. Even doing something part time so you have a balance? You have loads of transferable skills as a teacher. You sound like an amazing mum, you can do this but you can't pour from an empty cup xx

@FranklyBoyle this sounds so tough.

Can the 3yo go to eg. a childminder for say 2 after school sessions per week to give you a break?

You have tricky ages - even if not ND 3yos are usually completely unable to regulate themselves and are not old enough to leave somewhere to play in their rooms (which is how I deal with sibling warfare in our house).

Is the 5yo hungry btw? My 7yo doesn't eat much at school and is hungry for ALL the food straight after school.

Thanks. I give the 5 year old food and drink after school while we wait for her sister at nursery. The 3 year old is like a bomb about to go off and it is often her behaviour triggering her sister. A childminder is a. Good idea except I think it’d make her feel even worse - she’s struggling with the 30 hours compared to 15 last year and I think gets such a rough time. Like her sister will not respond to her a lot so she’s frustrated and desperate for affection. Explaining she was going to a childminder would be hard and I think counterproductive.

but when she’s in reception next year she could do clubs after school she’d like I think.

yeah tricky she’s, too small an age gap I think. If I could go back I’d have one or ideally no kids.I love them of course but I feel destroyed by it all.

I meant to say “yes tricky ages 3 & 5”

I say this in the kindest way as I have an ASD son and worked when he was young. Can you not do something whilst they are at school or nursery for those 30 hours. It doesnt matter what just one day a week maybe or a couple. You might think your too tired and you just cant but it will give you that release you crave. Adult company and getting out of the house. I did 16 hours for years when my son was at primary and I couldn't have given it up I needed it to get through a week with him he was sooo hard at that age. But it gets better it really does you will cope just keep going.

OP you're not pathetic at all. You're doing what you can to survive. Hopefully you can get some extra support for your Daughter.

Be kind to yourself💐

Yes definitely I could do that but not teaching realistically. I want my old career back. I want someone else to do the mornings so I can leave at 7am and go to work like my husband does!

ive only had since September with them both in full time and that’s been beset with all the sickness bugs so I’ve not had enough time to think.

but it’s the thought of doing a stressful drop off, then work, then the stressful pick up. I need a better paid job so I can pay someone else to do the pick ups I think!

sorry that last message was to @tootiredtospeak

I know I get that but just for now. It dosnr have to be forever. If not a job maybe joing a group or something. Parents of other children with ASD will have been through all of this and to have that shared understanding of how hard it is really helps. You need to find something to get you through a week. Your light at the end of the tunnel. There will be something you just need to find it.

No advice as such, but you do not sound pathetic at all. It sounds like very hard work. I have a 3 and 5 year old who do not have any additional needs and I find it bloody hard too. Especially my 3 year old at the moment. She is exhausted after a day at nursery and that really makes her hard work once we get home.
I try and keep our mornings as easy as possible and one of the best tips I had was to get them dressed and teeth brushed before breakfast so no trying to drag them back upstairs to finish getting ready.
After school it's usually snack and tv or iPad. They are tired and want to switch-off so I let them. My partner is away a lot and it often feels like a real slog just to get through the week. Just keep putting one foot in front of the other x

It sounds like you're operating on anxiety and fatigue. It's tough enough with one needy child, and I can't imagine the hard work involved in raising 2, but I promise you God will give you everything you need to do your job and do it well! I can relate to the feelings of not wanting to do it anymore, feeling stuck and like a shell of your former self. I catch myself thinking "why did I want kids?" and feeling sorry for myself that I cant go clubbing with my mates, or even go out on my own to the corner shop, and can't smoke cigarettes anymore to help chase away the stress. But I just focus my mind on the future and things I wanna do, no matter how far away that future is, I know it's gonna come when I can go take a pee without baby screaming LOUDLY coz I've left the room, or because I didn't press 'Skip Ad' quickly enough, and not have to break my back convincing baby to sleep when feeling sleepy. It's tough for you because your children are still very demanding at a time you would've expected them to be more settled, and you could enjoy more freedom. This must add to your stress and frustration, not knowing when that day will come when they'll grow out of it, especially when you're seeing other families with kids the same age seemingly having an easier time of it. I'm sure the other parents you see have their own unique struggles too, maybe it's just behind closed doors, so beware not to make yourself feel like you're all alone in the battlefield. From this maybe you'll feel reassured that you can absolutely do this as the other mums are doing and have done in the past. I also chat to my mum (she birthed and raised 6 of us including a set of twins) and I talk to my mates' mums and listen to all their crazy struggle stories. My mum's stories are the most impressive and inspiring though! I come away super hyped up and raring to go with raising my 1 needy clingy infant lol, so having a different outlook, perspective is a powerful tool for me at the moment. In certain areas in certain countries, there are no pain meds for mums giving birth, no hospital beds, no mat leave pay/allowance, no access to schools. My mum always reminds me that the same week I successfully gave birth in a hospital across from the London Eye, a woman she knows in Nigeria died that same week trying to give birth on the dusty floor in 35° heat with no pain meds, just a wet washcloth. My mum is constantly reminding me to quit complaining and crack on with it because the alternative (giving up) is not actually choice! Apparently we are all waaay too privileged in UK to just give up with all the (free) govt help, support groups etc etc. But definitely, you are 100% right to feel the way you do. For me, pep talks and a glass of Prosecco helps keep me going positively. I hope you can find something or someone to keep you going, and also I would consider sourcing some outside help.

Thanks @pinkorchid1 We do that after school too. It’s the walk to the car and the car journey and either or both of their moods and the dynamic between them. Once we are home it’s better. Or at least less stressful as we are secure at home. It’s unfortunate we have a 5 min walk then a car journey but we had to pick a school that was right for my autistic child. One idea might be to get to pick up at half two or something to bag a closer space. But even go make that change I’d be worried would set my autistic daughter off. I could make a social story to explain but it’s just so much effort and then I’d lose more of my time just sat in the car every day. Although at least in peace.

We do the same thing too in the morning as you. Although it isn’t always the case with the 3 year old who can be up super early and it seems madness to be brushing our teeth at 5 am! Then I get scared she’ll wake the other one up with a tantrum. We even have a rainbow chart they move up as they get ready but it’s still crossness and difficulty from them. I think they’re are spoilt.

I don’t know how to effectively parent them anymore.

@tootiredtospeak thanks. I do hear what you are saying. Maybe something that was just mine would help even if it can’t be a full time job straight away. I do know some other parents of autistic kids but it’s the sibling dynamics that seem to be what is screwing me over. If it was just by autistic daughter we would be fine. It is so easy caring for just one of them but two together I hate.

Ouch 5am wake ups are tough.
Ideas for the car - snacks at the same time after school. A playlist of songs they both like - I often put on a Disney playlist of songs they like that keeps them entertained for a while. Or audio story (mine still both like to listen to a Peppa pig one). Maybe even move one of the car seats into the front so they are not sitting next to each other if that would make a difference?
Sorry, if you've tried any of this before...just trying to think of ways that might make things a tiny bit easier.
But you are doing great. You are not a bad parent. You clearly care about your children and worry about how they would cope in certain situations and try to minimise their distress. It does sound really tough and it won't be this way forever x

Thanks @pinkorchid1 We do have a Spotify playlist which I’d got out of the habit of using. I give them a snack after school straight away in the playground. The crisps in the car was an extra thing I added as a bribe and because I didn’t want a whole packet of crisps in dd2s lunch box which she says other kids have.

I suppose it’s just their mood which is the problem and I can’t solve. Dd1 is actually generally ok thanks to some reasonable adjustments school and I put in place. But dd2 is usually difficult, trying to provoke her sister and I can’t work how to fix it. If I could just pick dd2 up on her own it’d be better. She constantly wants time with just me and I try to do “special” blocks of 10/15 mins when I can but it is hard. I did think of reducing her hours to 15 but not sure I could cope. Maybe I should negotiate an earlier pick up for her with school so we get some time together first. But it’s hard as school is a drive away and it’s so much back and forth.

3 year olds are so hard. My 3 year old is also quite difficult at the moment too - I don't remember dd1 being so hard at this age so maybe it's a second born child thing. I am at home with her 2 days a week as I work part-time and I can't say that the 1-1 time with her seems to make a difference to be honest 😞 I'm trying to do better at getting her into bed by 7pm latest as I'm sure she needs more sleep but it's not always doable.

And I know I rely on screen time too much but often it's the easiest option so I can get some peace and quiet for a few minutes!