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UmaPuma

I am a mum to a severely disabled child. It's very hard watching her, missing all her milestones and knowing she will be different. I look at other normal children and it breaks my heart. I longed for a child and went through miscarriages and ivf. No one can even find a diagnosis. People stare, whisper and that look of pity. My own mother has said my daughter will probably die before she reaches adulthood.
Feeling very depressed and sadden.

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Comments

Ami2301

Hi @UmaPuma I am sorry to hear how you are feeling. Have you heard of our new service, Navigate?

Navigate is a six-week programme that aims to put you in touch with a personal advisor, helping you to talk about your feelings and concerns.

Below is some information which may be of use to you.

Feeling comfortable being in public with your disabled child

Going out in public, on the bus or to the shops can sometimes be hard for you as a parent of a disabled child or young adult. Here are some ideas on how to cope with people who do not understand what your child needs, or react in a negative way.

People who react in a negative way

People can behave in a way that’s hurtful to you and your child. This can make it harder to keep your child safe and happy when you go out.

It’s fine not to respond if you’re too tired or they’re being hostile. If someone is staring, make eye contact and smile. Or try talking to them about your child, but only if you’re comfortable doing this.

Talking with your family and friends when you are the parent of a disabled child

Your friends and family may find it difficult to accept that your child has different needs. This could be for a short time or they could stay in denial. You may also feel that they’re judging you as a parent. Other parents of disabled children may find it easier to understand what you’re going through.

EmmaB

Dear @UmaPuma

I'm a disabled mum and I have a disabled child. I'm not sure parents of non disabled children ever really get how hard it is to have a disabled child and I've found it really useful to reach out to other disabled people and parents of disabled children.

Your mother's comment didn't strike me as particularly helpful... is she saying that based on any facts, my guess is not. Often even doctors make such drastic predictions and they are not right either. A disabled friend of mine was not expected to see her 2nd birthday, she is now over 50! But at the end of the day it doesn't have to be about quantity but quality, and how this can be maximised.

Is there anything your daughter enjoys eg swimming, baths, touch, lights, music? You don't say how old she is but I'm hoping perhaps you can find some local support?

You could try Contact - for families with disabled children: https://contact.org.uk

This might also be a useful link: https://councilfordisabledchildren.org.uk/resources-and-help/im-parent

Remember you are not alone, and it's OK to feel sad that things haven't turned out how you wished they would, the question is how to make the best of the situation as it is?

Best wishes.

Emma