I can't do it :-(

[beccablob]

Hi everyone

I rarely post on here and I know mumsnet isn't a fluffy, huggy kind of place but I don't know where else to turn.

My third child is 11 mos old. He has microcephaly and severe developmental delay. The paed says we are looking at significant long term additional needs.

At the moment we are stuck in waiting lists for lots of agencies/ therapies (physio, OT etc).

While he is tiny (and he really is! He looks like a 3 month old) he is gorgeous and cute and a pleasure to look after, but the future scares me and I don't think I can do it :-(

The thought of changing a grown man's nappy petrifies me (for sobs reason I can't stop thinking of that even though we have been given no indication of HOW severe his needs will be). How will I make sure my other 2 dcs aren't affected by it all??

Basically I think what I am asking is, how do you come to terms with this sort of thing??? Thanks for reading.

Hiya,

There really is no point dwelling on the what ifs.

I'm so sorry for the diagnosis you have received for your son. If he is only 11 months it must have been fairly recent and no way will you have had times to come to terms with it, especially as any baby that age is full-on demanding anyway.

The younger and early years are very scary, as there is just no indication of what the future might be, and the void is so wide you pour your worst fears into it. As your baby grows and you get to the top of those waiting lists, some things will become clearer meaning you can make plans and have some choice.

Your baby won't be a grown man for a long time, and if he needs the level of care that you think he might, then there are many different ways to ensure that he gets that.

This bit can be huggy. So (()) and

The grief and anxiety reduces after the acute shock passes. And finding out what you can do to help is useful. But till the shock does settle, you need to be really kind to yourself. No harm in telling the GP too. If you end up wanting medications or counselling later, it's useful to have given a heads up.

On a practical note, if you apply for dla it's not means tested or taken off other benefits. So there'll be a bit more money- you could get some private therapy, particular toys, or a cleaner so you have more time with him & the big ones.

She asked for a hug, not a vagina!!!

grin

OP, I didn't want to hear this particularly when we got out diagnosis, but the person who told be I'd get used to it was right. Times can still be tough, but you can still make your family life your own, even with the restrictions you might sometimes face.

Speech therapist expertise- free callback advice line

Your local children centre has to offer you something as well. Ideally portage drop-in etc, but if not, enhanced access to their regular activities

That's a what? Several children has taken its toll here....

[] awkward mumsnetty hug

And an idea (shameless cut and paste from here)

High or Special Needs: If your baby or young child has very high/special needs, then carrying them can allow you to easily meet some of these whilst still being able to continue with the other demands of your day. Carrying provides the constant close contact, attention, comfort and reassurance that your child needs whilst also giving them a safe environment from which to interact with the world on their own terms. We’d recommend a supportive, 2-shouldered carrier that will allow you to carry for longer periods of time, and possibly for a longer span than usual. Every child has different wants and needs for being carried; regular carrying usually decreases significantly once a child is walking and then continues until about age 2-3 depending on the child. A long Woven Wrap would be the most adaptable option for the long term. More shaped carriers such as Mei Tais and Soft Structured Carriers will also be supportive, but be prepared to size up as your child grows.

Its ok to feel like this. After years of walking down this path I have waves of shear panic and despair then go back on a even keel. None of us know our kids future for sure. My sons needs are less than yours but I have days of wondering if he will ever leave home, use cutlery, flush the loo or wipe his bum, but I look back and he's come on more than I dreamed he would. He's done things I though and was told he couldn't.

I can't worry about when he's 18. I have to worry no more than a year ahead. If I did, I would go mad. I'm no saint but this makes you stronger. It's like tempering steel. You get put in fire so many times and dunked in water you toughen up. You don't choose it, or decide to. You will amaze yourself. But it won't happen over night.
You can have a hug from me x

I'm sorry you've had such ttough news. Your reaction to it is normal - no one thinks I can handle this when they get the news their child has sn. The panic got less for me over time as did the grief. They still surface and it took time. My dd is now 4 so I'm still in the opening stages. Don't think about adult nappies yet just focus on the next year or two - getting support and therapists in place, looking after your health and mental health as you digest what is a huge blow.

Lots of hugs in this part of MN! People here know exactly how you feel and will always have something to offer to make things that little bit easier, even if it just shared experiences.

I have a little boy who cannot talk and in all likelihood will never talk, and I have found that very very hard to come to terms with. I worry a lot about when he is grown up. But day to day I get on with doing the best I can to help him to achieve his potential in the here and now. And you will do that too. People will say irritating things like "special children have special parents", or "God only gives you what you can cope with"..., as if you are meant to live up to some ideal of this super-parent, and if you don't you are somehow not what you should be. It's all bollocks. You are a PARENT, and like nearly every other parent in the world, you will do everything within your own ability and means to care for your child in the best possible way. That is all any of us can do.

Life changes, a lot, there is no denying it, when you have a child who has special needs. It's different, oh yes! (I'm NOT leading up to the "Welcome to Holland" approach her!). But: You will find you CAN do it, just like you have done everything you have no doubt done for your other children, not because you have to, but because you want to, because you love him. Sometimes when it is hard I remind myself that it is as simple as that.

Nothing more to add.

Bug hugs

Another hug from me. I think everyone on this board knows where you're coming from. You will cope, I know you think now that you won't but you will, and it will make you a very strong person and an absolutely fiercely loving mother. One foot in front of the other.

Big hugs from a very old mum.

Just would like to add your little man will not suddenly change into a big man. His pubic hairs will come one at a time and you barely notice them.
And you will cope and welcome to here there are some fantastic mums to help you. xx
Sorry if I sound crude

Well ds is 16 and I am changing nappies. I am still helping him get washed and dressed and.....
I never thought I would still be doing any if these things and if I had then it would have been very scary; but you just keep plodding on day by day, it becomes normal and you just do it.
Although I must say that ds prefers his Dad to change him...and thats fine by me!!

So sorry for my delay in replying to all these lovely comments.

Your words mean a lot to me. At the moment I spend a lot if time thinking 'what have I done?' (I do know none of it is my fault though, deep down) and the rest of the time feeling guilty for thinking that.

Ugh it is a horrible situation to be in

It will pass. Not entirely, of course not, but the anguish you feel now is normal.. totally normal, totally warranted and it's ok to feel that way.

I was a mess with DS2 (4th child) I begged my dh to have him adopted because I thought I'd ruined my childrens' lives and his, and I was so depressed I couldn't see past my own grief.

17 Years later I'm rather glad we didn't as DS2 is an awesome young man..yes with his own challenges and he will never be independent, but his brother and sisters love him to bits.

Take each day..or hour or minute at a time...

HUGS!

Thank you. It is nice to hear that it's ok to be devastated :-(

I very rarely post, so hope this comes across in the manner it is meant. 12 months ago when our youngest DS received his official diagnosis, I felt much the same, veered from numb to devastated to completely panicked about what his future will hold. A year on and we have reached a mostly even keel - don't get me wrong, I still have odd days of abject terror as new obstacles present themselves, and days of guilt about the impact his condition could have on his siblings, but these are few and far between now. He is a bundle of pure love and affection, his brothers adore him and he brings out the absolute best in all he meets.

There are some brilliantly knowledgeable people on this board, who really helped me with the feeling of isolation too. Take care and hugs!