Can I just chat to you? For the first time in forever I'm at the end, I can't cope today

[DreamInLavender]

I just feel as if I need to type all this here so I don't hurt anyone in real life.

My DC is 2.5 (almost), with suspected autism. I had a very good job before having him but went part time to be there for him as we were almost certain we weren't going to have additional DC... From about 11 months I knew something was off. My fears were confirmed and he's under S&L therapy, plus waiting for assessment officially from the multiple disciplinary team, there is a hefty wait.

DS also has Kidney issues and possible growth issues. He's under Great Ormond Street who are fab and I wouldn't remove him from their care, but it's a pain to get to and that combined with appointments for that, his own paediatrician, S&L and everything is a LOT to organise. It's fine, I just get on with it.

Recently been offered a full time job and I just don't know how this will work. It's a great career step but what I do requires my dedication 100% whilst at work so I don't think taking time away will work very well.

I'm always smiling and feeing realistic and stable, but today I'm tired. I can't see a way ahead. It just feels like there are constant obstacles in our way constantly. I want to cry.

My son is truly the light of my life but the lack of communication is hard. Simple instructions such as '' Where's shoes? '' are lost on him. He doesn't seem to understand. He's very loving towards me though and so beautiful. He has a firm dislike for other children and avoids at all costs, although loves nursery, even though all he does is the same thing, carrying a bucket around and filling if with stuff, pouring it out and repeat. He doesn't say 1 word.

Sometimes I just feel so frustrated. I suppose this job offer has put things into perspective for me. I have done well from an early age with my work but took something basic and part time where I'm happy but not working full time or moving up the career ladder. I feel as if people will look down their nose at me if I stay. Another young mum to add to the statistics of never doing anything worthwhile with their life. I'm in my earlyish twenties.

I moved away from my own family when I got married. I go to see them regularly which is nice but I don't have a support network really. DH is great but very set in his job and won't take time off to help with appointments etc unless I give lots of notice. And to be fair there are so many it doesn't make sense to have him at every single one. He finds DS's differences difficult and seems to get very annoyed with it all a lot. I just go with the flow and accept there's nothing I can do to change him. DH can't do that yet, I don't think. He isn't the normal he was expecting.

We lost our surprise DD late last year. It was difficult but as always, DS pulled us through. It's been tough though. I still feel so hurt at times but try and just focus on what I need to.

I don't really know why I'm posting. Thank you for reading. I don't resent my son at all but I feel full of worry and I do feel like crying today. I'm usual very happy. He's incredibly close to me and will give me some eye contact when it is just us which is lovely... I suspect its only because he's breastfed though Nothing to do with killing myself to keep him at his very best

I knew I would get my just deserts one day. Babyhood was a breeze and I find parening in general easy enough for now. It's everything that goes with it now that's hard

I'm here if you want to talk. You sound like a wonderful mum and it sounds like your son adores you. I'm sorry you have had heartache. Sending hugs xx

I didn't want to read and run.
You've been through so much , you're allowed to have days where things don't feel great. Be gentle with yourself.

I hope that writing this down has helped a bit.
Are you a person who CAN cry? You are perhaps grieving as well as coping. Does your husband know how you're feeling?

You are allowed to cry you know. Trying to force emotions away tends to turn us into human pressure cookers instead.

Hello, I know it's hard, it can get better. Have you anyone to talk to in real life? Some time out each day can help, just for you, even if it's only 5 10 mins coffee or walk or quiet.
It's ok to cry or shout at the world, it can help you to work through it.

I'm here too op. I can feel your hurt and sadness and frustrations through your words. Also the live for your little boy shines through. Life can be unexpectedly cruel sometimes, to the least deserving. All we can do is soldier on, knowing we are doing our best with what we have.
From one boys mum to another

Hey OP i am sorry you are having a tough day. But that is ok you know. I have a son with Autism and i have had some very dark days.
He was diagnosed aged 3.5 and he has an older brother who doesn't have any difficulties. My youngest was so difficult at that age 2-3 and beyond that too. He also had huge communication issues and repetitive behaviours and didn't give anything back. He was so hard to deal with and a complete danger to himself. I work PT so that i have the flexibility to attend appointments and even now he is 12 i still am unable to work FT.
Over the years my son has changed so much, he is still incredibly hard work but in totally different ways now. He talks non stop now i have to ask him to stop and give me a break so i can do other things.
I think the best coping strategy is one day at a time and one battle at a time. Dont add to your stress by having unrealistic expectations on yourself. And dont lose sight of the fact that he will change and develop and will overcome so many of the things he finds difficult now.

One day at a time, some days will be more of a struggle than others but you will get through and it wont always be this way.

Thank you For some reason reading people's kind words has made me bawl my eyes out. Not sure why! I'm always until someone asks

I don't think I've really told DH how I feel. He's obviously struggling to process that his son isn't 'normal', whatever normal is. He accepts there's definitely things that aren't right but accepting that he has to go with the flow and can't fight against it is what is so hard for him. I'm a 'put on my hard hat and face the world' type but my husband can get quite hurt and angry when bad things happen.

We had to take our DD away from the hospital because they spoke of her as medical waste products etc and some other awful things happened, such as delivering her with just DH in the room whilst we heard laughter through the corridors. He was so brave and supportive but the next evening he'd just had enough. Things like 'Nothing nice ever happens to us' were said in an angry voice. He just wanted out and got very angry waiting. It hurt because I felt like it was directed at me or that he just wanted to forget our DD had come and just piss off home.

He was also back to normal pronto. But I couldn't move with grief at times. I wanted the funeral, he didn't etc. But we bounced back

Our boy is the centre of everything and I can't imagine life without him. But my goodness, I can't breathe sometimes with the weight of it all

smartie Thank you so much for sharing that. It's hard because I sometimes feel like I'm cheating or guilty for working part time, like I'm trying to wing my way out. But it's just so hard to juggle it all, I am just one person. Just one. And despite my best efforts I can't be two places at once, I can't

Op, what a hard time yiu have had, and it sounds like you’ve just had to batter on and get on with all the stuff without time to process? Sounds like you’re doing a great job with your boy,, but you need care too. It’s like the oxygen mask in the plane analogy: do yours first so you can manage to do your Child’s.

Two things.. I think counselling would really help you, it’s been a lifesaver for me. And could you possibly do the job, or one like it, part time or job share?

Thank you Madame. Funnily enough I thought of the oxygen mask thing recently.

We are off on holiday in May which will be nice. Last year I took my son alone and it was lovely. Everyone said I was mad going abroad alone but we had a great time just the two of us! Pool, sea and sand. Nice change of scenery and he's a real water baby, plus a fabulous traveller. Not long back from a short haul just the two of us. This time DH is coming too though. DS is a little angel on the plane and even waiting around. I would love to see the world through his eyes.

I couldn't do this particular job part time. It is a PA role and very full on. You do get some PA roles part time but they're like gold dust and exist mostly in London

You have been through so much, OP.

Could you access counselling? Does the hospital offer any support groups or services that you could access? In my area the children's centres have groups for children with additional needs and their parents. Somehting like that might help to build a support network.

I daresay your friends would be happy to be there for you, without you needing to worry that you were hurting them. I really hope that you can quickly identify some support in real life.

Just want to say it’s normal to feel the way you do. Not easy being a mum to young children so must be more challenging when a child has additional needs.
Have said a prayer for you and your family. You are doin your best!

Thank you

Another young mum to add to the statistics of never doing anything worthwhile with their life. I'm in my earlyish twenties.

I know you are worrying what people would say, and you would never ever say that to anyone else who was caring for a toddler with both special educational needs and a serious medical issue. Please, please, please don't say it to or about yourself. Caring for special young children is virtually invisible in society, so it is hard to put the right moral value on it. You have to learn how to see your job as important, even if no one else does, even if your DH doesn't get it. Hope you can have a few heart-to-heart with him over the next few days where you can put your POV across.

I suspect your DH's anger is frustration that he can't make things better. A lot of men see their role in life being to fix things, so he can't just go with the flow as you can. He wants to DO something, but he (deep down) knows he can't, he wants practical solutions but knows there's no magic formula. So he gets annoyed, buries himself in work, and won't accept how things are because that would be giving in, and he's not ready to give up the challenge yet.

All the above means he's probably not good at talking about his feelings either, but after your DS has gone to bed, could you both take time to talk, to try to explain to each other how you're feeling? It won't happen in one discussion, but you will hopefully be able to work towards understanding and therefore supporting each other better.

It doesn't sound like the job is a workable option right now, but please don't think you're a failure because of it. Use the fact that you were offered it to bolster your self esteem, but your little boy needs you now.

I just wanted to say it sounds like you're doing an amazing job!! Also people's priorities change as they have families; there is absolutely nothing wrong with work coming after family in the hierarchy. A saying my grandad used to always say was 'work to live, don't live to work' and when I feel like I should be more focussed on work or prioritise work, or up my hours I just remember that. There's plenty time for career progression. As long as you can manage financially, why take on extra stress for now? Time is something you can never get more of and the memories you'll make together can never be replaced by anything work can give you

The face ain't supposed to be there, just the flowers

You are working full time. And you are doing something worthwhile with your life.

It may not be full time employment by a company but it's certainly something not many could do and takes a lot of skill.

What do you want to do? Do you want to work FT because you feel you should or because it's what you really want?

I also have a child with asd and other difficulties. I work school hours term time only. It's not the career I wanted or hope to even have (I'm late 30's) but for now as a LP it's what I need to do to and I've finally accepted that.

I haven't been through any of the heartbreaking things that you have however I had Dd in my early 20s, single parent gave up university. I remember the crushing thought that whilst I loved my Dd life would never be the same and I would amount to nothing and felt that crushing feeling of having lost myself. I couldn't get a job s I had to look after her.

However, 10 years on, I'm finishing a new degree have had several jobs that fitted in exactly where I needed them at the time although they may not have initially been the idea of a dream job.

Things will be tough as your DC has autism and you have many battles to face however that also means you have many battles to win. Counselling sounds like it would help you deal with the loss of your Dd. You need to rethink what and who the new you is, our dreams from before having children sometimes have to change and it is difficult to accept that. At the moment you are your DSs PA, perhaps viewing those tasks as a job might help and remember to make some time for you, if you cant get out the house then make a nice room where you can go and do something quietly for an hour and relax.

OP I'm so sorry for you reading your post, you've been through such hard times

I too have a little boy with autism and just want you to know it does get easier as they get older.

When he was 3, he had just been diagnosed and I was hugely struggling with my feelings and juggling all his appointments, and trying to do everything I could to help him. I did it while working full time, I took holidays to be able to get to his appointments. I know it may seem selfish but I didn't want to give up what I had studied and worked so hard for.

With the appointments and the work we did with ds, he began to improve. The older he got, the better he got and needed less appointments.

He started school at 5 and once he was settled I switched jobs again to try and further my career more. In a way it's for me, in a way it's for him because I want to be able to pay for everything he needs and to be able to support him.

Overall I think it's working out well for us. The only one thing I regret is that I put on a brave face and pretended everything was ok the whole time. I bottled everything up and didn't tell anyone how I was feeling. In the last year it's all caught up with me and I have struggled mentally. I've been to counselling and realised that I shouldn't be putting on a brave face, I dont need to be strong all the time. So please, if you are upset, tell someone how you are feeling, dont bottle it up.

I am also so very sorry about your DD

I second Madams advice.
Those hugs and looks are special with your son, enjoy them.