nearly 4 year old with physical disability ... no diagnosis... struggling

[ditziness]

DS is nearly four and has had difficulty with his mobility his whole little life. Getting more and more obvious that it's something that isn't going away. He walks as if he is drunk and falls over a lot. Like twenty times a day. He's covered in cuts and bruises. He can't walk very far, has no stamina. He's starting to become aware that he can't keep up with other kids his age. He's upset about it.

I'm struggling to cope. Don't know how to be. Sometimes he falls over i feel so sad for him and cuddle him and comfort him. Other times I feel frustrated and don't want to mollycoddle him just tell him to get up and carry on. Sometimes I feel so sad he can't keep up, sometimes I feel so jealous of other mothers whose kids are zooming about on scooters and running everywhere. Sometimes I hate having to carry him all the time, take the buggy everywhere. Sometimes I don't know what to say/do. I'm so scared for the future.

All tests so far are negative. only diagnosis "unknown muscle disorder"

I wonder too. I don't know where the line is. I worry about milky coddling him as much as I worry about expecting too much of him.

Molly coddling! Although I guess milky coddling sounds just as daft.

I guess what I mean is that he falls over so often that I think if I pick him up and make a fuss every time, am I just going going to teach him
He's a poor boy and it's awfu that he falls over so much. And then have that view of himself and his life. But if i ignore him, my heart feels so sad for my baby, having to cope with so much Sao young.
so usually i matter of factly clean him up, empathise and tell him to keep going. But it's hard. Especially on days when I've had no sleep, got a million things to do and the baby's crying and he's refusing to walk.

Yes, I don't think it is easy to know how treat those questions at all.

But I found the parenting class to be really therapeutic. It discussed issues like picking your battles, being assertive, attention-seeking vs power-seeking behaviour, discipline, positive attention, sibling rivalry, etc etc. So helpful.

If you have a health visitor she might be able to put you in touch? Or just come by each week to chat about these specific issues? Or maybe your GP could refer you for some support for you, some CBT perhaps, I don't know. Anger and frustration are TOTALLY UNDERSTANDABLE but will eat you up if they take over.

And I had to stop letting my kids take biked or scooters out as they would be so annoying about them...and they are able-bodied. You are the grown up who knows what is possible/likely to work.

but i see other wee boys his age zooming about on balance bikes and scooters, their mums gracefully walking behind.

it's grieving?

i just feel so sad and angry

I'm sure grief is normal to in your situation. It would probably be weird not to feel angry and sad.

All I mean is, yes, it would be nice for him to zoom around on his bike but you have a baby to contend with and it might just have to wait til the weekend.

Don't be fooled by everyone else's appearance or judge your circumstances by theirs. You can only do what works for your family.

Just my slant on it, but has he been tested for Guillan-Barre related issues? I've got CIDP (chronic GBS) and one of it's diagnostic criteria is "drunk walking". You can have the acute syndrome at any age - and the sequalae can be long lasting. It's a rather acute nervous system illness which often puts people in intensive care but can also be mild and undiagnosed, especially in children. I hope you find out soon about your ds's problems - I know how distressing it is not knowing!