Raising ASD child is draining the life out of me

[JuneBop]

Took my 2.5year old DS (has suspected ASD/SPD) out to a familiar cafe just as something to do with DP for partners day. DS had an epic meltdown that echoed around the whole room and caused many disgusted looks and stares. Ended up having to leave with DS and wonder around outside in the rain while DP finished his coffee before we swapped over and I went back in and sat on my own to finish my now cold tea.
Then DP rushed off early to see his DC from a previous relationship saying he wanted to actually be able to enjoy father's day.
So I'm now sat at home alone as usual just thinking about how miserable the rest of my life is going to be.
I can't do anything any more because DS doesn't permit it. I have to repeat the same routine every day. Go through the same meltdowns every day. Be hit and kicked and hurt every day. Be on my own every day as I can't have a social life when my DS can't go anywhere without having a meltdown.

Antidepressants don't work, have tired my different ones at different doses.
Couldn't attend the mindfulness course I was referred to as the creche there couldnt cope with DS while I was attending the course so had to leave and withdraw.

I just feel so low and alone. I don't want to carry on but I know I have to for my DS. The future seems so bleak.

I'm sorry, I don't know what to say. I'm facing the same thing but DS is now 10. He's horrific. AD just keep me from topping myself but for how long I don't know. I have experience of horrible disease with another of my children but tbh, autism is the worst thing in the whole world when you have one like my DS, just the worst thing in the whole world.

Father's day* not partners day.

I'm sorry you're going through what you're going through Tuxedo. It's a very very hard life to live. It seems so unfair that some of us get this lot in life.

It's very unfair and I'm getting to the point where I'm like, fuck this shit, I'm out. It's crap and you have my total empathy.

So sorry OP. Is there a way to get your DH to do more of the hands on care?

Out eldest daughter, one of five, was always different. It took us pestering from 3 onwards until she was 10 to get a diagnosis. We knew her behaviour was not normal. We knew from experience that she was suffering and making us all suffer in turn (I worked with children with ASD for a long time). Even now she can't be left alone with her younger siblings. She needs constant monitoring. She sets herself and generally has no idea about conforming or is able to conform to expectations that will In the long run make her life better and easier. It's hell. You are not alone. I'm so sorry you have to go through this. I just wish I didn't see posts on FB saying how special people with ASD are all the time because often I'm just trying not to murder someone or run away.

I totally avoid most social media for that reason, Alone. There has been nothing positive about life like this and I wish we were both dead. It's awful to live with.

"Then DP rushed off early to see his DC from a previous relationship saying he wanted to actually be able to enjoy father's day. "

He what? What a shitty thing to say and do to you.

OP your child will go to school when they're four and you will then be able to breathe again. I know that's a long way off.

In the meantime, have you access to social services/respite? There are bound to be services you can use that will help you - centres you can go to, people who can help.

You need time to get your head around what you have on your plate. It will get easier. It won't get easy, but it will get easier, and you will adjust (I speak from experience as the mother of a teen with SEN).

On another note, your bloke doesn't sound very kind in what he said about his other child. That must make you feel awful.

Be kind to yourself - have long baths, read nice books, treat yourself. You will cope and things will improve. I promise. x

In some place, there is no help, Ivegotthree. We've run in this right now and cannot afford to move. I keep hoping things will get better, but they just get worse. He was up screaming till 4am.

We get funding towards childcare but the local nursery to us can only have DS for a very shortened amount of time as they can't handle him. We are still on the waiting list for an official diagnosis so not much resources available until then.
I agree that there is nothing positive. I feel like I have missed out on every positive aspect of being a parent and only have the hard times but multiplied by 10.
DP doesn't cope with DS very well, and spends most of the time at work.

It can be a hard and lonely place to be parenting a child with complex needs, OP.
I understand.

My DS (with ASC) is a teen now and there are different challenges, it’s still very hard, but I remember pre-school age being a particularly lonely and draining period for me. I just felt so isolated, judged and utterly exhausted.

I found some relief in a parents group for families with children with ASC. It didn’t change our reality or my DS’s challenging behaviour, but it felt good to be able to share my experiences and just hang out with people who ‘got it’ and didn’t judge. Is there anything like that near to you?

Your DH needs to step up here, too. What he said about enjoying his father’s day was unkind.

often I'm just trying not to murder someone or run away.

Yep this sums up how I feel a lot of the time with ds who is being assessed for ASD. Then I spend the other time I'm not with him feeling guilty. It sucks. And ds saves his worst for me, so other people rarely see how bad it can be. OP

My child with ASD was a nightmare when very young. An absolute bloody nightmare. At times I would have wished anything for someone to take them away. Horrible but true.

The turnaround came when we saw a fantastic developmental paed. Really stretching my memory now but think they were 7 or 8yo. Child was put on meds. Child was so much happier in themselves. Didn’t find life nearly as scary, anxiety reduced greatly and behaviour changed for the better. Also, with meds they were able to take in other therapies which had basically failed to that point. Actually made friends. Never had friends before and it was a huge turn around. They were much happier. We were also, obviously.

Even now as an adult they still take meds but have a great life. They are at uni doing a course they are interested in. They have sports and hobbies they are engaged in. They have a group of true friends.

Just to share our journey and give you hope.

I'm so sorry tuxedo . And OP. It took us years to get money from the council which we now spend on respite. That time gives me my sanity back.

OP once you have a diagnosis it will be much easier as you can apply. If it is ASD he has there will be places that can handle him. I remember thinking no-one could handle my DC but then I found out there were loads of people and places that definitely could.

Is there a local parents' group for SEN you could join? I'm in a couple and they are great - meeting people in the same boat really helps. But at the beginning it is particularly hard as you don't believe anyone else is going through what you are. But they really are, I promise.

Feeling quite tearful reading all your posts. The isolation, feeling so damn alone in dealing with it all is sometimes worse than what you're actually dealing with!

I too have some really bad days where I literally can't think of a good reason to carry on. Those days it never feels like there is anything to look forward to. I too have zero choice other than to pick myself off the floor, brush myself down and carry on and pray that tomorrow is better. Sometimes it is and that's what keeps me going.

I have moved house quite a but and that has led to more isolation but there is a support group locally that meets every couple of months (good job I only feel like shit once every three months or so ). Your partner was bloody cruel to say that to you. Your son is as much his as yours. To leave you feeling abandoned like that was really unkind and he needs to realise that.

You're not alone OP

Doesn’t get much better. People are less understanding the older they get.
My ASD teen is 17 can you tell I want to give up

I hear you, Pm.

Sending hugs OP. And interested in the meds that helped the other family.
I hope you can access so sort of nursery / respite soon. I dont know the best way to access it. Maybe a social services early hekp assessment. Not sure. Life is very limiting with a child with special needs. If you can find one friend in similar circumstances it helps so see if there are any asd support groups in your area.

I'm not surprised your partner scarpered. Autism breaks up a lot of relationships. It ruins lives. It's total shit.

OP your child will go to school when they're four and you will then be able to breathe again. I know that's a long way off

The reality of school for the parents of children with challenging behaviour is often not as relaxing as that sounds.

Misty, I hear everything you’re saying. Our DS is also being assessed and it’s certainly me who gets the worst of it(seemingly because he feels safe with me, but I wish people wouldn’t say that like it’s meant to be a comfort!) He can keep his shit together at school, but cracks appear some days, then when I pick him up it’s meltdown time. DH fucked off out earlier announcing he can’t cope. All I could think was don’t bother coming back because I can’t be doing with his shit as well. I’m utterly drained.

Same here. DS aged 7 has just had the mother of all meltdowns.
I'm already on medication for anxiety and depression which mostly works.
i'm just sick to death of being punched, kicked and screamed at. Even very laid back DH is struggling to stay calm now.
I feel so so sorry for 6 year old DD who has to witness it, it's heartbreaking :-(

Are you involved with any support groups for ASD families? Or have any friends who get it? This has been the single most important thing for me. Have other friends who are dealing with the same things. I can quite honestly say those early years were very challenging. I dont think id have been able to take any of mine out for a relaxing meal, but that doesnt mean there arent still nice things you can do, but it doesnt sound like your partner is supportive or understanding or even in it together with you, so im not surprised youre finding it overwhelming. You need a lot more support than you are getting right now. Your son is of course your son, and you and he are in this for the long haul. It will get easier, especially if you get the right support, and try to let go of the picture of what you think its supposed to be like.

Are there things your little boy enjoys doing and copes with?

Our relationship and lives have been ruined by this. Our relationship is at breaking point as I am forever bitter that DP gets time away from it all at work and on weekends when he takes his other children out and gets to do family things and I'm constantly left out stuck at home caring for DS. I do love my DS but if I could take all this away in the flick of a wand, I would.