is it normal to feel like this.

[ashamedmummy11]

I have namechanged cos I am ashamed of how I feel at the moment.

My amazing little boy is 3 years old. Exactly a year ago we decided he had some quirks which may indicate something is different about him. A year later we are well on the road to a diagnosis of ASD and a place at special needs nursery. He has minimal speech and very limited understanding of language. He recently had his educational psych assessment and has moderate to severe learning difficulties.

I feel so ashamed but I cry a lot. Only when im on my own. I cry for all the things he will miss out on. I cry for all the horrible moments he will experience when ignorant people are mean to him.

I am working my butt off to make him the best he can be and I am trying to be strong for his daddy who is totally unaware of the implications of this condition. I have read so much about this condition now and I feel so sorry for my wee man.

is this normal. do other mummies feel like this or am I actually just a bitch.. I sort of feel like it at the moment. I just love him soooo much. I want to protect him from it all and I cant, I get so frustrated when I cant access the services he needs because of limited resources or because in my area children from disadvantaged families are prioritised and we aren't one of those families.

just need to know how other mummies cope with this.

(sorry for poor spelling and grammer)

Thank u. ZZZZ. I'm just reassured to hear u cried.
No one knows I cry. I feel afraid when ppl say how good we r with him. I'm not good. I'm terrified. My husband is fantastic but I can't tell him how frightened I am. The one time he saw me cry it made him cry. He never cries not even when his father died. But he cried that night we both did.

This post sounds so selfish. I know it's not all about me. It's about my wee man. I guess I need to pull myself together. I will. I'm trying.

you've nothing to be ashamed of whatsoever. Nothing remotely strange or bitchy in worrying about the future, or being upset by diagnoses. The pre-school years are very tough, as you are stuck on waiting lists, and have the uncertainty to contend with on top of everything else. My advice for coping at this, most painful stage - make sure you make time for yourself to do something non child related - and consciously make time in your day not to worry about your child.

Again, I can't answer for others but yes I went through similar to you. My situation was slightly different in that my DD was diagnosed a couple of weeks after birth with a chromosome disorder. But yes I cried. A lot. More than a lot. I grieved for the daughter I had 'lost'. Rightly or wrongly, it really did feel like a loss. All the things I had imagined for her - things I didn't realise I had even imagined for her until they were snatched away - I cried for the loss of it all, for her and for me. 4 years on and I do still cry, sometimes. I still feel very sad but like you it makes me feel guilty too as she is wonderful and I am not disappointed in her. I suppose I am disappointed for her if that makes sense. I worry about the future and what will happen to her, and how she will be treated and a million other worries, but I try not to dwell as it will send me insane and won't provide the answers anyway!

So not sure my ramblings help you but just to say, no you are not the only one to feel like this. Honk honk x

MooMummy u hit the nail on the head. I feel sad. I am not disappointed in him either and I guess that's why I don't want pple to know how sad I am. I don't want pple to be disappointed in him. He makes little progressions and honestly I am ecstatic. I have 4 children in total and his little advances always make me smile that little but longer. I suspect as has been said. The trick is not to dwell on it.

Totally normal. It's like a grieving process, grieving for the normal, straight-forward life you thought you/he would have. And at this stage when you have no idea what the future will hold, you imagine the worst things. I spent about two years crying on and off around the time ds was diagnosed (3 years ago). But now, not only has he exceeded all our expectations and more, but his life is not like I imagined in the worst moments at all. It's not all plain sailing of course, and all of us still have pangs of 'what if' and some bitterness about the unfairness of it al, but he, and life, is nothing at all like I feared.

I also found it useful to pour myself into trying to do everything I possibly could to help him (whether that's finding out about therapies, battling with school etc to get the best resources for him) - all that anger and grief needed to be channelled into something. You can't protect him from everything but you can do as much as you possibly can to help prepare him as much as possible.

This board is also the biggest lifeline and support ever, don't think any of us would have coped without it. Just take one day/week/month at a time. Things change so rapidly, we just have to deal with what there is now and try and plan as best we can for the near future. But then doesn't every parent?

And you are good, great in fact. Look at what you've already done for him. He is lucky to have you.

I think we all cry in the early days- especially in the early days when still realising, worrying, hoping, and then slowly there is adjustment and survival to a different present and future for our child. Ds is 14. He was 7 before we had the full dx (ASD/SLD) so I had worried for many years, fought for help, statements, special schools etc- and I 'knew' he had autism and SLD long before it was finally diagnosed. I still got very sad at the diagnosis - the confirmation of my fears. I suspect the grief (and it is a kind of grief) is more concentrated when the diagnosis is very young, although the advantage is that the child can start getting appropriate support early. As the years have gone by we have adjusted. I still have sad moments and of course there is always the worry for his future happiness and security.
Ds is happy, funny, kind and lives in the moment. He has the future mapped out - he will live in our house, and have daddies car and his bank account once we die!! He will use it to buy chocolate and lego! I think he has the right idea!
Don't be ashamed! I attended a course for parents with children with SN, where the stages of adjustment to disability were discussed. All of us knew about the grief,- those of us with older children were further along the adjustment and survival path.

Thank you to everyone who has given me advice here. I feel so much better knowing other parents have a cry about things too. Thanks again and yes I agree this board has provided me with mucho support and advice. Thanks again x

I went through a phase of being very down about DS2's condition, when he was smaller. He has ASD and at 3, he was passive, non-verbal and had gross motor delays related to hypermobility and hypotonia. Approaching his 5th birthday was the hardest for me. I was tired of explaining that he wasn't ignoring people, he couldn't talk. I was tired of children younger than him pointing to the baby in the pushchair. I felt pangs when tiny babies waved at me and chattered at me because DS2 couldn't do all that. I was painfully aware that he was coming up to an age that was considered significant when it comes to delayed skills and that there was an increasing chance that he'd be dependent on very close adult support for his entire life and that, as a result, he would be extremely vulnerable.

It's very normal and it's part of the mourning process. It would be abnormal to not go through this to some extent, at some point, when you have a severely disabled child.

Please don't be ashamed

Yes it is normal to feel like that

Time is a great healer...I went through similar when ds was about 4 years old... I still remember it very well.

It will get easier

He will be ok