I'm not really coping with any of this

[Lillypond]

DS was DX'd with autism last September and was born with plagiocephaly (odd shaped head). I know it's still early days and feeling sad is to be expected, but I feel like I'm full of pain and bitterness and it's like living with a broken heart. I can't forget about it for 2 minutes, I'm totally absorbed by how unfair it all is.

Christmas was horrible and I was glad when it was over. DS wasn't too bad but it was because I had to speak to people and appear to be happy when I didn't want to. DS's birthday was at the beginning of January and that was horrible as well. All those reminders in the form of age appropriate gifts that DS's development isn't age appropriate.

I hate the school run so much. DP usually gets home in time to pick DS up and I'm so devestated when he doesn't make it. Having to brave it twice in 1 day is just a really dreadful thought. I'm so jealous of the kids who can talk properly and run around happily. A boy in his class laughed at DS in his buggy the today and I felt so horrible that I'm still pushing him around at 4 years old when he can walk properly but I do it because I can't stand his behaviour when we're walking. I'm sick of grabbing him all the time to stop him picking up dog mess and licking lamp posts, and it takes so long for us to get anywhere.

I'm finding it so hard to talk to DP about how I feel. We're both behaving as if he didn't get the DX to one another and it feels like everything we say to each other is just rubbish. What's the point in talking about work or new furniture when we have this hanging over our heads. I can't see the day when anything will ever matter to me anymore.

My flat is on such a mess but I could cry every time I think about cleaning it up. I'm such a mess to look at as well. I'll be 30 in a few weeks but I look so much older and I feel it too. I can't even really blame any of this on DS's behaviour as he's been relativly good lately. It's all about how I feel about the DX and fear of what the future holds for us.

How did you all feel around this time? Is this normal or do I just need a good kick up the a*se?

there is no such thing as normal! everyone reacts in their own way. there is nothing wrong with your reaction. it is a kick in the teeth and it takes time to process. I know i've been through every emotion under the sun (2 boys with asd) and still do!

I can't cat at the moment, but if you would like to talk at all, i am [email protected]

So sorry you are going through this. It's a horrible time and it's hard to think that you'll feel whole again sometime. For me, it took about 8 months until I felt more positive (different diagnosis, deafness) and about 2 years before it was a constant, permanent thought. I also know the feeling of trying to protect your partner's feelings, but they feel it just as badly. It's a tough, tough time. We came through it and I just wish I'd known then how relaxed and happy I can feel again someday.

sounds normal to me as I could ahve writen your post

Even down to my messy house

It is so hard isn't it?

I am sorry I am no help, just wnated you to know you are not alone

can you talk to a counsellor ? It sounds like you are bordering on depression (with good reason), and really need help to talk through the things your are particularly struggling to come to terms with.

Also - is there anyone who can help you work out coping strategies - eg ways to walk with DS so that you can ditch the pushchair (you are not going to want to pushing him when he is say 6).

You are struggling to cope with the reality of your ds as he is, and also the loss of your dreams about what he would be. Try and be proud of him as he is - he is dealing with a difficult situation in the only way he knows how. Don't let ignorant people get you down.

I can remember feeling really bad when dd was dx. I read later that it is like going through a grieving process. You grieve for the child you have lost.
Sorry to hear you are having such a terrible time

Lillypond I think this is entirely normal and I'm so sorry that you're having to go through this. When my ds was diagnosed I felt bitter and angry that autism had to affect my little boy, and all my hopes of what my ds could achieve in life flew straight out the window. Like buzylizy said it really is like a grieving process. I really hope that you can recieve some sort of support, both emotionally and physically, I'm sorry I can't say anything that will help, but I do understand the sadness you're going through right now.

Lillypond- are you planning for ds to stay in mainstream? Special school can be kinder on the parents (never mind the children). DS1 in special school stuck out, children would point us out to their parents in the playground. He only took part in one play thing (xmas in reception) and was basically walked on stage and then off again- it was awful.

Now I love going to see him at school, he fits, he's with his peers and he doesn't stand out.

I no longer dread goong to pick him up to find out what's happened that day- and I get lots of positive feedback.

When ds1 started special school a lot of people commented on how I looked so much better, and how ill I;d looked when he wat mainstream.

No idea if special school is even an option for you, as I have no idea where your son is on the spectrum, but if it is possibility might be worth asking about it.

Lillypond, I too could have written your post. I think you are depressed and for the short term maybe think about ADs to give you a bit of a prop. I'm not in too bad a state right now but it won't last, I wish I could take ADs but I'm trying for a baby so can't.

My advice to you is put some music on, or the radio, grit your teeth and tidy and clean your flat thoroughly. Then sort yourself out - get your hair done, pluck your eyebrows, shave your legs, buy some nice make up. These are such positive things to do, and take time and energy - and they're things you have control over. You'll have something else to think about and you'll all feel so much better. You've got to keep moving and "doing". Look smart when you pick ds up, hold your head up and smile. x

Hi.

everyone reacts differently when their child gets a dx. Was the diagnosis a shock to you and your partner...I've always felt that the greiving process would be much more drawn out if you weren't expecting to be told 'your child is autistic'.

You and your partner NEED to talk this through, things aren't goign to get easier if you don't both acknowledge your feelings and fears for what the future holds.

You do sound depressed, and I think you should seek some help, be it counselling or short term medication.

How affected by Autism is your son? with the right help and intervention ASD children can make a lot of progress.

My son was diagnosed last july, I felt nothing but releif, we have been able to move on from the constant wondering of 'is it?' and work our family life around the autism, so that it isn't so all consuming, but it is certainly been addressed. he still rides around ina pushchair when we're in busy or built up areas, he freaks out, has no concept of danger, I personally would rather kids laugh, or people stare ask stupid questions etc then put him, my older son, or myself in danger. Next january he'll start primary school, an d becuase of our councils Inclusion service, he'll be going into mainstream, hopefully with a statement in place, I don't know if thats best for him, but i know I have to try, because IF he can cope then I owuldn't wnat ot deny him that opportunity.
I've wandered from my point a bit...

What I mean is, you don't need a kick up the arse, you don't need to develop a thicker skin, you just need to find a focus and get on with things. Whack a CD on and dance your way through the cleaning, you'll feel much much better.

take care

emma

I agree too, you do sound very depressed. I had depression a long time ago and your description of not caring about anything or looking to the future is spot on. I had some little red pills that were marvellous and didn't have to take them for long.

The housework thing is a must if it's making you feel worse. Try to tackle a bit at a time and don't let yourself look at how much is left to do! A quick blitz whenever you get the chance will make you feel better.

If there's anything you really enjoy doing, move heaven and earth to avoid giving it up, even if it seems like you haven't the time or energy. You need something for yourself. When ds was dx I was lucky enough to still have my elderly pony. It was a struggle to keep him but he was my little oasis of peace where autism and housework didn't exist. I've no doubt that made coping with everything else a lot easier.

Please don't think you are abnormal. You have a lot of adjusting to do and you seem to me to be still in shock. I agree with JJ about special school lifting a huge burden off parents. My son only went to mainstream nursery, not full-time school but I remember that terrible mixture of isolation and being the centre of attention. You say you aren't coping but I think you are being very brave!

You are normal - everyone copes in different ways and the fact that you are keeping going is great. I still have moments where i cry about DD's deafness - usually just after having seen friend's babies responding to noise or (my personal bugbear) presents of toys which make noise. I'm sure things like that will always happen but will get less over time.

V nice friend of mine told me that you are only given what you can cope with and that only special mummies have special children.

PS Bugger cleaning - you won't get a medal for it. Will the mess fit under the settee?

Once again i can relate to you so much its like reading about myself.
You sertinley do sound depressed, i think you could do with seeing your doctor, you see i was exactley the same like you still am a bit!! if i was in the supermarket and i seen a "normal"child i would breack down in to tears thinking why couldnt it be there child noy my baby why him whats he done to deserve it nothing, then i got worse and was diagnosed with severe depression it wasnt untill then with the help of antidepressants that i could feel my self getting a little better.
Even now it still hurts a lot the only way i know how to describe it is its like a grieving process, grieving for the child you will never have grieving for all them hope and dreams for their future you had for them, knowing hih dad will never will able to take him down the blues to watch football, will he even understand the game of football, will he have friends to play football with the list just goes on and on. I definatley think you should look in to special schools for him see your doctor and start a little hobbie for your self like baking riding a bike i found reading does it for me as i can eascape into a whole new world where i have no problems.And as for the housework just leave it till you feel ready instead of wasting all that energy in to it you will make your self feel worse just leave it till you know you can tackle it. keep strong make an appointment to see the doctor and DONT PUT IT OFF!!!

gah- just read read my message- should say- ds1 in mainstream stuck out... makes more sense now....

Lillypond - I am so sorry that you are feeling this way, I truly am. I can also relate to alot of the things you are saying.

I agree with Jimjams, are you sure MS school is right for him? Possibly special school may beable to develop stratagies to really help him? Please feel free to CAT me if you want a chat. I also have a 4 yr old ds with autism and really do understand and feel the same way as you sometimes. Take care x

Also take some time out for YOURSELF. Have a facial and go out for drinks with friends. Do something that might cheer you up a bit. I go out pretty much every weekend () it gives me a life and something to look forward too. A bit of clubbing can make you feel SO MUCH better! Where are you based? I am in Brighton...

Sorry you feel bad hun, I too could have written your post, particularly at the moment when i am going through a very black phase. Take care x

I can't add much to what's already been said. I agree that you may be depressed and should see your GP and/or a counsellor. Apart from anything else, this may be a way to start to talk about it with your DH. When my GP gave me ADs I felt better knowing I had them although I didn't take them but I would have in a heartbeat if I'd felt I needed to.

I also agree that you should consider special school if its possible. Struggling in "normal" settings is so hard sometimes, I used to feel like the freak (with the freak child) and I hated it.
Have you contacted the NAS? An Earlybird program would be great or find out if they have a branch local to you or know of any other support groups. Personally I didn't talk to other people for the first year, it was much easier to avoid in those days with few people using the internet! WHen I was ready I found that getting to know other parents of children with ASD really helped.
And DO try to do something for yourself. I'm not one for facials and treatments etc but if that's your thing then see if you can do it. My treat is time at home on my own during the daytime with an old movie and a copy of Heat.
Hope you'll be feeling better soon xxx

Oh Lillypond, I am sorry you feel so bad. There isn't much I can say that hasn't been said but I wanted to add my support. It helped me a lot when Dh came on board and since we have been making decisions together, I felt so alone. If you can find a way of talking to your dh about it I think it could help - he probably feels exactly the same.

Thank you all so much for you lovely supportive messages. It really does mean so much to be understood

I'm not really trying to protect DP. He's quite positive about DS and I suppose I don't want to take that away from him incase we all fall apart.

It's hard to think of anything to feel proud of DS about. I do love him but there is this thought in my head that if I didn't love him then this wouldn't hurt so much and then I feel quite angry with him. I've developed this huge inferiority complex and feel stupid that I ever thought I could have a normal child with all the bits working properly. Normal head, normal brain etc.

I haven't thought about special school yet. He's apparantly on the mild end of the spectrum. He's verbal but not talking in sentances and not conversational. I'm not sure whether SS would be an option for him.

The DX was a shock and happened very quickly. He was referred by our H.V last July and was DX'd in September. During the months leading up to seeing the Paed. I suspected it was autism and then changed my mind just before the DX, thinking how silly I'd been, and it really did knock me for six when I was told.

RnB - We're in SW London. Shudder at the thought of going clubbing again but I suppose some kind of social life would do me good. I've been so unsociable lately, even a natter on the phone is beyond me.

I think I've been depressed since way before the DX. I was depressed about DS's head after giving birth and was treated for PND but I never really felt well again. I think the DX just added more stress and sadness to what was already there. I don't have very much family support at all. DP's family don't know about the DX because they really wouldn't know how to deal with it. The only relative on my side who knows is my mum. My sister and dad both have addiction problems and I'm not clsoe to aunties, cousins etc. My mum has been quite supportive but she can be blunt. It's definetly better than having someone who refuses to accept the situation but she is negative and often refers to DS as a 'poor little sod' which I find hard to take. My best friend knows but she has a 2 yr old DD who is more advanced than DS and I can't stand hearing about her achievements at the moment.

Davros Earlybird was mentioned to me but I haven't done anything about it yet. I do feel like a freak at school. I long to be involved in the chat but get flustered if someone talks to me. I keep crossing and uncrossing my arms and putting my hands in my pocket, looking at me watch etc. I even walk the long way home to avoid the other mums as I feel sorry for them incase they feel they feel they have to walk with me. It's horrible.

I'm going to phone the GP today. I had AD's for PND and although I think I came off of them too soon they did help. I'm dreading the first couple of weeks of them though as I remember they made me feel worse at first, but these feelings aren't going away on there own so I have to do it. I've sent an email to the psychologist at my DS's craniofacial unit as she's helped me before when I was depressed about his head. She can't give me counselling sessions as she's in Oxford but she's happy to offer advice and coping strategies by email. She's seen DS regularly over the last 2 years so she knows his history and she's experienced with parents feelings relating to cosmetic issues as well.

Lillypond - i'm in SW London too (Wimbledon). We sometimes get together in the cafe at Debenhams in Centre Court. Are you close by?

lilypond - just want to say sorry you're feeling down and add to the support already posted.

Hope GP is helpful.

School runs can be awful - my younger son used to find collecting his brother really difficult (I think we were very well known, by sight, by every parent in the town!). I used to turn up as late as possible and force myself to smile at everyone in passing - while DS2 acted up....!!!(ASD). And nice mums smile back, and it does get better from there!

And Earlybird was brilliant, I went on it a few months after we got the dx and it was so so good to meet other parents in the same boat - with children who do the same things as our DS2! The course gave some useful advice too.

And, just to say, I think one of the best, and worst things about having a SN child is that my emotions seem so much more intense. So the good things, like being able to get into a shop and buy a paper, put me on a massive high, but the difficult things seem endless while they're happening and seem very hard to shrug off.

And time to yourself is invaluable - even if it's sitting with a book for 30 minutes! And housework isn't the most important thing!!!!

Good luck

Lillypond, you already sound more positive. ADs sound very likely to help so good to go and see the GP. Also contacting the Psychologist who helped you before is a very good idea. When I posted I forgot about the added dimension of the plagiocephaly, you've been through the mill
If you can get on Earlybird than that would kill 2 birds with one stone (ha ha), getting advice and support and meeting other parents without having to go out and do it for yourself iyswim. As I said before, just doing these things will give you a way to talk to DH about it all without having to plunge into "what's wrong with DS". xxx

erm don't want to throw a spanner in the works, but isn't Earlybird officially for pre-school kids? There was another one (shout??? no but one word) that was for school age. Help maybe?