Here are some suggested organisations that offer expert advice on special needs.
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Waiting for babies diagnosis. How do we keep our shit together for our other kids?(3 Posts)
In a nutshell, 23 week DD has exhibited jerky movements, rolling eyes, was delayed in smiling and is a bit floppier than she should be. She twitches her fingers most of the time. Also has a 25% centile head compared to 75% centile body length.
Awaiting genetic testing and an MRI scan. Had one EEG that came back normal.
Despite no diagnosis yet the consultant has painted a bleak picture of the future and told us she won’t live anything like a “normal” life.
This is week 3 now since doctors confirmed there is definitely something wrong with her and I’ve held it together until last night when the tears started and haven’t stopped. Older children are 6 & 8 and DP has taken them to the cinema so I can pull myself together but he’s sat watching the film in tears too.
How do you retain normality for your other children? I can’t carry on like this in front of them but I truly cannot get a grip of myself at all, didn’t even know it could be possible to cry so much.
Also once diagnosed, do they just say here you go this is your new life or is there any kind of emotional support for families? Counselling etc? Feel overwhelmed, sorry if this is jumbled and hard to understand.
Ime, all parents are shattered by a diagnosis - grief for the “normal” child they thought they had, and the realisation that school, college/uni, career, marriage and children might not be as straightforward as they dreamed!
All I wanted to do was sit on the kitchen floor and cry for three weeks! At first, all parents see is the label (or lack of it); but gradually that fades and you see the child again - until another report arrives to bring the grief back! 😞 Just take life one day at a time and cross your bridges when you come to them - don’t worry about the distant future.
Remember your child’s personality is still there.
Ime, the best support is from joining a group for parents of children with SEN. Educate yourself about how the NHS and later the education/social services for disabled children work. Knowledge empowers parents. Charities for a specific condition often have helplines for parents; or some help generally navigate the education system. There are also support groups, for parents who don’t have a diagnosis for their child, like a rare genetic disorder.
You may get some sessions of counselling through your GP’s surgery? If necessary, antidepressants help.
It does get better, like any grief with time.
Really feel for you OP - my daughter's needs are very different but I know the feelings of sadness, angry and feeling lost.
Mont has given excellent advice. Anti-depressants really helped me as they stopped me from bursting into tears in front of my toddler. Joining groups like Sense has been fantastic as well.
In my experience consultants only ever give the bleak outcomes so try not to think to far ahead