Im at breaking point

[Matilda07]

Hi, unsure how to use this properly so may be in the wrong place etc!

I have a nearly 5 year old non verbal, autistic daughter who has no form of communication apart from crying/screaming until we guess what she wants. A nearly 3 year old daughter who is above her milestones and an 18 month old son who’s behind in his speech, but no proper concerns, just a slower developer according to HV and dr’s!

I treat my job as a break (2 15 hr shifts a week), but means only 1 day off with my partner and kids all together as he works long days and also nights, so I’ve reduced my hours to one shift a week so im home that extra day as my partner struggles with the kids alone (my eldest is very reliant on me). I am struggling really badly mentally at the moment. I’ve had PND, anxiety etc, had CBT, offered anti depressants, but after a bad experience on antidepressants when I was 18, I’m too scared to take them when my children are so dependent on me, I can’t afford to react to antidepressants the way I did 7 years ago. My kids are hard work, I feel like instead of having a shoulder to cry on, I get hit with criticism like ‘you chose to have them’, ‘that’s what happens when you have close age gaps’ and people comparing their lives to mine when it comes to the struggles with my autistic daughter (no one I know has an autistic child to compare to me). I’m literally at breaking point. I don’t get 30 seconds to myself, I can’t go upstairs to grab something with my eldest or youngest screaming the house down. I can’t leave the room without being followed, all I hear is crying and moaning and I’m feeling like I resent being around them and that makes me feel like a crap mum when I love them to pieces and would be lost without them. Whenever I’m not with them, I feel anxious and want to go back to them, but when I’m with them I’m gagging for a break. My eldest daughter is on the highest dose of melatonin and it rarely works, I run on 2-4 hrs of sleep, mostly the 2 hr mark meaning im irritable, extremely tired and moody which makes me feel so guilty as I feel like I can snap at my kids sometimes and they don’t deserve that. Also, my eldest has been forced into mainstream where she does less than 3 hrs a day where the school can’t cope with her and accommodate her needs (fighting to get her into a specialist school atm), my other 2 go to nursery 1 morning a week (childcare prices are ridiculous around here, and we get no financial support) so my kids are home mostly all the time. I can’t go out with all 3 kids on my own because my eldest is 1-1 as soon as we leave the house, my family all work Monday to Friday, and busy places at weekends is a no go because of her anxieties in busy places etc.. my family will help on weekends like have my eldest so I can take the younger 2 out as well as they take them so I can have 1-1 time with her, but it’s hard to do anything apart from stay at home and I feel like im going crazy, a couple hours isn’t enough being out when she’s at school I personally think, but it’s what im stuck with! I’ve spoke to doctors, our HV is so helpful and even if it’s me ringing her crying when I’m having a bad day, she listens, but me talking about my problems doesn’t work. I just want a solution and I’m just too paranoid/anxious to use antidepressants again after an awful experience. We are going through bernardos currently as CAHMS declined us, so we are getting minimal support as a family. Has anyone experienced this feeling before or have any suggestions of what I could do?

My goodness, I was exhausted just reading it but you are living it! Is your eldest daughter at school? To have a child with no communication when your other two are so young and need you to must be exhausting. Everyone needs some time to themselves and if you don’t get it of course you will be resentful but that certainly does not make you a crap Mum simply one who has more demands upon her than most parents trying to cope in extreme circumstances. I have a child with special needs too but with different issues and I don’t think I could manage in your circumstances.
Apart from your family do you get respite from any other sources? Any support groups particularly for children on the autistic spectrum where you live? Can you HV not offer any info on this?

Just want to say you are amazing for doing what you do but you deserve and need more help. X

That sounds really difficult.

I worked with autistic teenagers.

There are a number of things that you might be able to do to support communication with your 5 year old.

The first is Makaton, which is a sign language. A bit like baby signing. So the idea would be that you make the sign for eg milk every time you give her milk, and then encourage her to make the sign herself. It's also quite useful for babies so you could also do it with your other children.

Another possibility is PECS. This is where she has a number of pictures (could be photos) of things and you exchange the picture for the thing. So say she has a drink in a mug, you practice give her the picture. Take the picture from her then give her the mug.

If you can get any support from a speech and language therapist they will be able to help you work on the communication.

Incidentally, legally school either have to cope with her or exclude her.

If they cope with her then you get additional downtime.

If they have to exclude her you get official evidence towards getting her into special school.

It sounds like they are illegally excluding her.

I'd suggest contacting Sendiass or SOSSEN for more advice.

She has communication delay. Everything’s on her terms. She won’t sit and concentrate to learn things! We’ve tried at home, her old nursery tried (specialist one), school are ‘trying’. She will push away any cards we show her with pictures etc! She’s not interested so means it’s a no go!

Honestly, at this rate, excluding her would be a dream for me as I’m sick of the school. Only good thing in that place is the class TA and the senco who are both fighting hard for her to get more support (we called an emergency annual review on her EHCP which we had Tuesday so hoping to hear back asap), but the fact she does 3 hours max a day when she’s used to full days Monday-Friday at her old nursery, I think it’s definitely thrown her, maybe being the reason of her behaviour declining

Hey, yeah she’s in school but does minimal hrs because they can’t cope with her. The school isn’t the best but we are fighting to get her into where she needs to be which is not proving to be the easiest! We live in the middle of nowhere basically, our county doesn’t offer much, but we’ve been told we are going to be passed over some info about day respite, so hopefully will look into that once we get all the info from her senco! My mum helps as much as she can like having her over night etc, but that’s one night a week max, which I’m extremely grateful for! But it’s still 6 more nights I have minimal sleep as when she’s awake in the night, I have to be as well due to being a danger to herself! Thank you, it really means a lot x