I've realised that I always see DS as damaged/inperfect :(

[skewiff]

Sorry - don't want to indulge or feel sorry for myself. The reverse really. I want to find a way to stop seeing my son like this.

Ever since he was diagnosed with CP at 6 months old (he's now 5) I have tried so so hard to be positive, but been all out to cure him, and as a result I see him through the eyes of a therapist most of the time and therefore am always looking at his difficulties/disablities rather than how beautiful and lovely he is (which of course he really is!).

Its kind of been highlighted to me as I had DD last year and I am so so appreciative of her having no (apparent at the moment anyway) problems and I play with her so much and laugh and have fun. And now I realise that this didn't happen with DS when he was a baby because I was always so so worried and upset.

I don't want to carry on like this. I know that I have to continue to help him and be a therapist to a certain extent - because it is invaluable to him. With exercises he continues to stay physically healthy and to progress. But I just need to start to celebrate and enjoy my time with DS instead of always feeling that he is behind and not good enough in some way.

How do you balance the helping and therapy with a more healthy positive attitude mindset towards your SN children?

I don't want DS to grow up feeling that he is not good enough. He needs mental strength more than NT children.

Hi skewiff. I struggle with similar feelings about my dd who also has CP. It is really hard not to always be looking out for what they are doing and with the 'therapy glasses' on. I worry dd will always think of me when she's older reminding her to open her hand properly to pick something up. Also constantly saying 'be careful' as she falls over a lot!

But I would guess you are really positive about his achievements and milestones even though the worry has always been there. He will know he is loved and that you done everything possible to aid his development. Some things can be left to the therapists but I know as parents we are the key to the success of any therapy and nothing can change that.

Hi, if you get an answer i really really want to know what it is. My Ds who is 2 also has CP, and although i do sometimes manage to stop worrying and having fun it is always there, and always has been since he was born at 29 weeks and diagnosed at 11 months (actual age). My Husband is worse and says that he never really manages to enjoy the moments as all he ever does is worry and worry and worry. To the extent that at the moment he is refusing point balnk to have another child which I would love to do, partly because I would love to be able to enjoy some of being amother and I think another child might help with this.

And the paeds just say enjoy him, but they don't have to deal with everything so how do they actually know.

I was just hoping it would get easier once ds could walk and talk, but I am guessing that is not true now?

I had twins. Healthy boy and not so healthy girl. She was tube fed, trachied and deaf with Craniofacial syndrome. She spent the first 5 months in SCBU, while I was at home with her twin. It was really hard for a long time to not feel guilty about enjoying interacting with a baby who didn't scream in pain, constantly reflux and struggle to breathe. Things sort of settled down and 6 years later I had DS2 who is (so far) NT. I loved his babyhood and then I fell pregnant when he was 8mos with DS3 who as it turns out has the same cranio syndrome as DD but is also ASD.

Being older and wiser I tackled thongs differently with him, and it's paying off. I suppose what I am really saying is that each child is different. So it's ok to feel guilty or overanalyse, but just dont let it rule your life.

I don't have the best relationship with DD as it was always me who had to do tube changes, screw turnings and all the seriously nasty shit a mother should never have to do for her child. It coloured things for us, but we are working hard (now she is nearly a teen OMG) to build a better relationship.

Thongs things!

Oh, skew.

Thank you everyone -

yes you're right madwoman - even though I've not had much fun in the past it is not too late to start. I will start now.

DS does already do clubs and things on his own, but its just that I watch him, when I'm with him, always through the eyes of a therapist that is looking at his bits that don't work so well ...

I could get school to do his exercises actually (some of them, at least) - but I know they'd not be done every day or necessarily that well (plus I'm not keen on DS being taken out of play time which is when they want to do it) - so I'm preferring to do it all my self before school at the moment.

But thank you all of your thoughts. It really helps to know that I am not alone in feeling like this.