To hate my child’s condition?

[Alwaysgrey]

I know this awful before I get flamed but I can’t say this to anyone in RL. I have several dc. Two have special needs but my youngest (7) is severely affected. He has autism, he can’t speak, screeches every two minutes and has a health condition meaning he can’t eat certain foods. He has only just started sleeping through the night. I’m also trying to support my older child as she also has Sen. I’m starting to hate my life and my youngest child’s condition. Youngest cannot be with anyone but me or my husband or school. My parents thankfully take the older two out on occasion but holidays are so tough as I struggle on my own. This is probably the most terrible part but I wish I’d never had him. I know that’s awful and I hate myself for it but he has ruined our lives. I won’t ever work again, we can’t go certain places because of my youngest and we’ve become horribly socially isolated and I’m struggling to socialise as I feel in a deep pit. As I write this my youngest is screaming in a short, sharp blast. Somedays I look at him and hate feeling this way. As well as feeling so guilty. I can’t fix this, I know I can’t. He’s getting harder as he gets older. There isn’t any help. Disability services are on it knees. I’ve been taught to hide my emotions and can’t express to anyone around me just how fucking awful our lives are. I’m petrified for my son when he grows up and so scared that I could die early leaving my children to deal with him. I just don’t have any energy left to deal with him and life feels so so bleak.

OP, I completely understand how you feel. Please remember you are doing an amazing job in the toughest of circumstances.
My eldest DS is also severely autistic and non verbal. He is a few months off 19 and like you we had no social worker or any type of support in the early days, in fact we’ve only gained a social worker during our transition to adult services.
I agree that disability services are seriously stretched but ask and ask again if you have to, you deserve all the help and support you can get your hands on.

You sound quite depressed. I would be too if I was dealing with all of that. My children have additional needs but not to that extent and I am exhausted and at times felt close to depression. As far as I am concerned nothing you have said is judgement worthy. Your needs are not being met. You're not superwoman. How on earth could anyone expect you to take on all of that without it taking some kind of toll?!

Speak to your local health visiting team for advice. I know he's 7 but they'll likely signpost you to support. My DD has dyspraxia and she's 7 and they signposted me.

Also worth seeing there are alternative schools for children with additional needs. Our area has one and it's brilliant. Helps parents in so many ways.

You need to get some respite. There has to be a way. I understand that's there's often not. I went to 2 medical appointments today for my children and one of them asked for a follow on appointment at a difficult location - I very nearly burst into tears because it will be so logistically difficult for us. Life is so enormously full on and respite is hard to come by.

Is he is receipt of DLA and are you his registered carer?

You’re not a terrible person but do sound at the end of your rope.
I have no advice, but I wish there was more support for you

Don’t feel guilty it’s incredibly challenging and exhausting raising a child with additional needs. My oldest has autism and adhd although and we were pretty much left to get on with it for a long time to the point even hubbies family basically isolated us as my FIL hates boys particularly autistic ones. I managed to get to see a disability nurse recently who got us some funding for a little bit of care for him. It’s only 2 hours a week during school holidays but it’s a start and it helps. If your in Scotland you need to apply for SDS funding. You are exhausted mentally, physically and emotionally and you need to make it known to services you NEED help or they will do nothing sadly. It’s not because they don’t want to but because they are so over stretched.

Thank you all for responding. You’ve all been so so kind. I’m going to look into a social worker. Moving has crossed my mind but the kids are all settled into school and we have my parents locally. We’re in an okay County it’s just our part isn’t the best served. It’s broken into quadrants and ours is probably not the best served. We’re in receipt of DLA which helps. I love all my children but everything feels very tough and our journey is quite a lonely one. I’m definitely going to look at support groups. I don’t want to offend anyone who has autism but it’s hard not to be able to help your child and to see them struggle so much. My son used to use pecs but is very reluctant to communicate. He’s very rigid and inflexible so even the simplest things are quite hard. Residential maybe an option but I know he’d struggle being without us.

I am in a similar situation with twins who are developmentally delayed and speech delayed.

The only thing that has made me feel better is religion. I'm not sure if I am allowed to say this, but I think about how Mary was so loved by God and yet given the biggest hardship, to watch her son be crucified. I feel like there's something to that of God loving those the most who shoulder the biggest hardships. If you can find a parallel to make yourself feel better in religion, that is the only advice I can offer because it is where I take comfort.

I also have a severely autistic son and it's bloody hard work.
Sometimes it would be lovely to just get a babysitter and go out for the evening but even if by a miracle someone offered I'm too knackered lol .
Autism really is a shite but when I think I've reached my lowest I remember he's not doing it on purpose and life's harder for him than me 😢
Pm me anytime if you want to chat or scream

Hey op, firstly it's totally normal to feel the way you do!! I certainly do sometimes. Ds is 9, he has severe autism, a severe learning disability and is non verbal. I love him with all my heart but its so hard, mainly all of the time!!
You need to demand a social worker, you need respite. You are entitled to an assessment for yourself as a carer also. Ask about direct payments and shorts breaks respite. Ds receives both and it has made life more bearable. The shorts breaks respite has been great for ds and he loves having sleepovers.
Pecs didn't work out for us either. Have you tried any high tech solutions such as proloquo2go or lamp? We have had a lot of success with this.
I tried counselling about 18 months ago and it was the best thing i have ever done. I've never found support groups overly useful. Counselling allowed me to off load.

Big hugs for you op x

Oh God OP that sounds do hard.
I would be banging on the door of Social services screaming for help.
I know the special school near us runs support sessions for parents, if there isnt one at yours maybe you could ask them yo set one up.

I don't think anyone should have to live like that, OP. You sound absolutely at the end of your tether. I think you should find a full-time, permanent residential placement for your son - and not feel guilty about doing so, either. You deserve to have a life, not a miserable existence.

I really feel for you. Can you see if there are services run by charities for adult and young carers in your area?

I can't offer you anything other than positive thoughts. Life can be hard with NT children so I can't begin to understand. But a PP suggested respite care. I think she'd mentioned potentially wanting to put her child into care when the help suddenly appeared.

Of course you're not U to hate this. Nobody would actively choose to have a child that can be such hard work. It really isn't fair. I hope you can somehow manage to get respite care so that you can recharge.

Yup sounds awful, and it is increasingly hard to access any support as all services are being cut to the bone

I have no idea how people manage to cope with things like this. I know I couldn't.

@NoHolidaysforyou Me too, my faith has gotten me through some dark times.

@Alwaysgrey I have also been fortunate to meet some amazing folks through local Autism charities, too. These people have been there for my family when we have felt at our most socially isolated.

Stay strong OP xxx

Are there any charities in your area that help children and families with disabilities we are lucky we have quite a few the best advice I was given was find your people , you are not alone there are other families like yours, over the past couple of years I have made friends with a lovely group.of women ,we all have kids with autism they are all on different parts of the spectrum but my friends get it in a way other friends and f family just can't they don't judge and we support each other when times are tough and tbh it's nice just to be able say I'm struggling and have people understand .

I hope he never knows how you feel. I have mental health issues and my mum got drunk one new years and told me i ruined her life, it will hurt forever knowing that, especially as she then died leaving just my dad alone, unable to work as he was my full time carer. I struggle with feeling i should get rid of the problem and free him, its horrible.

People cope because they have too BlueSkies most people wouldn't choose to have a child with severe disabilities but first and foremost it's your child and you love them and you do the best you can ,nobodies perfect we all make mistakes but until it happens to you ,you have no idea if you can cope or not.

AlmostAJillSandwich I'm really sorry your mum told you that. What we say as parents, occasionally, especially when drunk, is not the full picture.

My dd has autism and mental health issues and at times I've found it very hard.

However, I love her to bits. She is engaging with counselling and getting all the help she can.

Please do not do anything to shorten your life because that would almost certainly devastate your dad. All you can do is engage with any help you can access.

I very much doubt the OP's son knows how she feels. As parenta, yes, we do convey out upsets but also our love.

The OP is reaching out for support here. It's not the same situation as your situation and I think it is important parents can vent in a safe space.

Honestly, as mum to a child with mental health issues I just want her to be as well as she can. The OP really needs solutions to help her and her whole family.

I hope things will be better for all of us struggling with different issues

Please OP let us know how it goes.

My DS has ASD, while he isn't anywhere near as bad as your child, any ASD child can be hard work. The not sleeping, meltdowns & mood swings are exhausting. Could you look in to getting respite care to give you a rest? Get in touch with Child social services & ask if they can help or speak to your health visitor. If you have claimed DLA, look to see if there are any grants you can claim for care or ask social services for a care assessment. You may find that you could be granted carers to give you a rest & chance to recharge your batteries. Don't feel guilty about what you are feeling, when DS was younger & we hadn't got his sleep & meltdowns under control, I often felt like running away, as he has got older it has got easier. If your child has a consultant, speak to them to see if there are any therapies that will help your child's development.

alwaysgrey

The thing to remember is that everybody needs a break from caring, and it is totally understandable to feel the way you do at the moment when everything is down to you and your husband.

I am amazed that you have not been offered any support when they assessed your youngest’s education and health needs. You and your husband are entitled to an assessment under the Children and Families Act (am assuming you are in England but there is similar legislation in all of the UK). You might also be entitled to Carers Allowance as your children have DLA and I don’t think you said you were working. The you.gov site explains how to claim.

You can check with your local council about a carers assessment as well as support for your child. For instance, they can arrange for a support worker to be with your youngest or an after school/overnight stay at a resource centre/unit. Action for Children run several respite units.

Do you have a carers centre near you? It is very likely your council is funding an organisation for carers who can offer advice and support. You can also contact Carers UK or the Carers Trust nationally.

Thought eggsandwich’s post was so good at showing what a difference proper support can make. Hoping so much you get the help you are entitled to soon.

That sounds awful poor you. You sound on your knees. Have you considered having him put into Foster care to give yourself a break?

Thank you everyone. Its just been nice to offload. My mum scoffs when I mention how I feel so burnout. The holidays have been hard and left me in tears more than once. Ds has smashed his computer as I hadn’t noticed he’d gone outside and thrown it over the shed because the battery had run out, he needs constant supervision and the screeching is every two minutes. I don’t think being up all night again last night with him has helped my mood. I’m going to see if a social worker can help us as I feel very low at the moment.

There is nothing I can suggest - but what I found worked best for me was total acceptance, almost like complete submission, to the life that I/We were/are going to live. I don't compare life to how others lead theirs, nor try to think how my/our life would be different if.....

I have a thick skin, I care little for how others think...and yes, that could or would be different too, if.....

DS is now 17, we've both done ok, it could have been different if only...but it hasn't been different and the 'ifs' are irrelevant because this is our life and we can both be proud.

Keep venting OP, be proud of yourself and of all your dc - you will make it work - in the way that works best for you, and if....anyone thinks differently...ignore them.