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.

I hate Autism too I hate it even more during school holidays. I have 2 dd’s With ASD, they are now teens, some things have got easier, some things harder, I often wonder what life would be like without autism.

I have just managed to secure respite for my youngest and she will get one day respite each week during school holidays, this will help a lot and will give me a break for a few hours.

YANBU to hate your child’s condition, it’s bloody hard work.

I'm shocked you don't have a social worker! This must be so hard with such little support.

I have no advice, but I wanted to tell you you're a fantastic person and mother, things get hard and I couldn't have lasted 7 years before I admitted how hard it is ❤️ xx

Has your youngest had a child in need assessment by social services. Having one doesn't always mean you will get support but it can pave the way for direct payments and over night respite, especially as your child gets older.

If you are genuinely heading for a crisis and feel that you can no longer cope you can ring the mental health team in your area or social services and self refer. It is a good idea to back this up with a visit to your GP.

The only way to kickstart any proper action is through a crisis unfortunately.

Op , I don’t have much to offer but my heart hugely goes out to you. I think what you have said is just human and we would all feel exactly the same. I’m sure you have looked into everything but agree with everyone on making a fuss, contacting as many support options out there, would homestart be of any use? Could your gp refer you to any supports.
Apart from this and assuming you have a partner is there a way you can tag team and just give each other that headspace for a couple of hours a week or at the weekend? Even for you to sit in your car making lists and looking at all the options available, ringing numbers etc.
I’m sorry if what I have said is irrelevant. I just hope things improve a little in some way for you. At least your child was born to someone who cares

Yanbu to hate their condition. I have 2 asd dcs, plus me and one of them have type 1 diabetes. It's bloody hard work. Have you got in contact with Children's Services to access a social worker? They can help you access other services like personal payments, despite and holiday clubs. You're doing an amazing job

Respite, not despite

Hi Op have you looked into foster care? You all obviously need and deserve a break, you would probably find life a bit easier with regular scheduled breaks from that level of stress x

OP, I work with adults with autism, most of whom are non verbal. There are other communication styles to learn, and your dc will find their way as will you. Once in education a routine can help, and there is a lot out there about autism, learning, communication, as well as what others have said, respite is a must, positive behaviour support etc.
It is tough, and living with it 24/7 is toughest. Sending hugs and 💐

@Alwaysgrey Huge hugs

I too have a child with SEN, Autism... Aspergers in our case so I know a little of what your going through albeit my child is verbal so we have different challenges. I have just given up my career to SAH too.

I advise that you get in touch with the National Autistic Society for support and advice. Also, have you heard of Young Carers for your other child?
Carers Trust:
carers.org/about-us/about-young-carers

Also, I echo what others have said, get involved with a local ASD support group. I am a member of a few locally to me. Some organise Parent Workshops like Flower Arranging and chocolate decorating at subsidised rates. We can bring our children if needed.

Message me privately if you wish. Am very happy to speak with you. Stay strong. xxx

I have a child with similar needs, he has severe autism and learning disabilities t does your son have a paediatrician ? That can refer you for things you might need , my son is currently back under the learning disability team for various reasons ,sleep, behaviour etc, it doesn't surprise me you don't get any respite unfortunately ,the only respite we get is one day a week in the school holidays at a special needs holiday club

Sending you all my strength.
Thinking of you all. 💐

I occasionally do supply in SEN schools and I have nothing but admiration for the staff who work there full time. I do not know how you manage it 24 /7 as a parent, it must be the most difficult job in the world. I do not blame you one bit for feeling the way you do, is there any way you can get some respite support?

Would a residential school placement be an option? To give you all a break. Even if it's just Monday to Friday?

Friends of mine have a son with severe Autism. The father had a total breakdown due to the pressure. They have a very good respite package as a result of this. But it shouldn't have to come to this.

It shouldn't Toddler but unfortunately you have to push for everything and ime it's those who shout the loudest that get the most help.p s totally unfair .

Similar situation here too. I have three with Autism but it's the youngest who is the most affected. Mine are all verbal though. I found the learning disability nurse to be the most helpful person so far. She's promised that she will get me extra respite for my youngest (he currently gets 3 hours per week). You aren't being unreasonable at all, while some parts of autism for some of us are actually quite beneficial, an awful lot isn't. I really wish my youngest didn't randomly attack other children, if I could take that, his extreme ridigity of mind and lack of danger awareness away, I would.

A residential placement may be exactly what he needs.

He'll thrive. You'll all thrive. And be able to enjoy your time with him.

My dd finally went into residential school at the age of 17 after years of misery. We're all happier for it, my only regret is not doing it sooner.

YANBU. In a lot of areas, too, there just really isn't any help out there. We're about to transfer custody of our son to my sister. Just cannot take him anymore, there is no help in this area and we cannot afford to move. It's destroyed what was left of our family and driven me to the brink of suicide. I hope you get some help soon.

💐💐💐 OP. I know I and many other people on this thread would have exactly your feelings if we were placed into your shoes! I've had a couple of thoughts, one being have you considered actually moving house into an area which could service you and the DC's needs more effectively....perhaps nearer to a town. I know this seems extreme, but surely something pretty damn radical has to change in your life here....you cannot continue to live under this kind of day to day strain and I worry for you OP.
We have 5 autistic people in our family. Some parts of the country are way better serviced - by charities, social services and support groups than others - you and your DC's need those services OP. Our relative in Greenwich is brilliantly provided for....he is severely dependent and autistic. Please think about whether upping sticks could be a real life option for you.
My other thought related to your comment one 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 - you can set up a discretionary trust for your DC and in particular for your son with high level needs. We have one for two family members with the Mencap Trust who have a lot of expertise. What it means is that you can plan for your child after your death....I know that sounds v depressing, but you are clearly worried about this and understandably so. Having a trust in place can help with this worry and particularly the burden falling on siblings. Hope this helps OP and gives food for thought.

You are not aibu. You said you hate the condition NOT the little chap. My daughter has a condition which I, too, hate. I love her. Thinking of you and sending support.

You can’t help how you feel, and I know how you feel.
My son doesn’t have autism but he does have a developmental delay - he’s also 7.
I have 4 children and he is the only one who has Sen, it’s a struggle for my other children as they don’t have the patience with him.
Especially now with it being half term he is driving me a little insane at the moment, my 16 month old is poorly so we can’t go anywhere

This sounds unbearable for you and you need help. I hope there are residential care options for you and others in this kind of situation.Wishing you strength to find a better way to live with this.

We’ve been where you are now with our ds who’s nearly 19, when he was 10 we were literally on our knees with him, he has asd, severe learning difficulties and is non verbal, I think a lot of the frustration that came from him was his inability to verbally communicate with us.

For us it all came to a head when he was 10 and on the edge of puberty, he was previously toilet trained and almost over night forgot everything he had learnt and would wee and poo wherever he was standing, honestly it was awful, he would be crying most of the time and be very clingy with me in particular, it nearly tipped me over the edge.

I was particularly concerned for his younger sister and the effects of this going on around her and the fact our ds was taking all my attention that I worried about her feeling neglected.

I remember saying to my dh one day I can’t do this anymore I’m exhausted, I love him but I just can’t do this he will have to go into care I honestly can’t live like this anymore.

We both cried and talked and then contacted his Autism nurse at the hospital he was assigned to, as up until then we never had a social worker.
We said to his Autism nurse we need help and now otherwise social services will have to take him into care as we can’t continue like this.

Before we knew it we were allocated a social worker and given 28 nights respite a year and ongoing help with social services which has been a life saver, I remember them saying at the time that our ds reaching 10 with us getting no help or support was amazing, but honestly I would of set the ball rolling a lot sooner if I had my time again.

Our ds is now a young adult and yes its difficult at times but much more manageable with the respite thats in place.

That sounds very hard. I have ASD and so does DD. I see a lot of autistic people very angry about parents who say they hate autism, understandably if their own parents have said as much to them directly. But there is nothing wrong with hating the way the world is not set up for him, nor set up to support you, and YANBU to look for support here, because the posters in the SN chat section are brilliant.