Extra help- Dla?

We want to hear from you: please tell us about your experience of the online community.

emmyjg

Hi, my 1 year old son has had developmental delays and had recently started to sit up so was referred to comm paeds. He has not been diagnosed with anything currently. 

He makes shaking head movements all the time and uncontrollable movements, flaps hands and curls feet, he is extremely sensitive to lights, struggles to get to sleep and takes longer to swallow and eat his dinner than his twin. We have also been seeing physio and have a treatment plan which we have to do everyday, however the exercises he is struggling with. He is not weight barring on his feet either. (His twin is basically nearly walking so we know he is slightly delayed) but also can’t compare to other babies but we always have the comparison. 

Also my oldest daughter has Pvl, so we are extremely worried. 

I’m just wondering what your thoughts would be on Dla for my son even though he has not been diagnosed with a condition we are still providing extra support with all his needs. Or any support groups or anyone else either experienced this.

thanks 

Cher_Alumni

Hi @emmyjg

Thanks for sharing with us your little boy's story. It's good that you've got a referral to the community paeditrian and I'm sure you are giving him the most wonderful loving care.

This government webpage outlines the support available for disabled children, whilst for DLA you have to be able to evidence your child:

has difficulties walking or needs much more looking after than a child of the same age who does not have a disability

Scope have an excellent advice page on Support for a child without a diagnosis, that covers DLA so please do give that a look.

Whilst, make sure to look after yourself. It's tough going being a mama, so keep talking to those around you and offload when you feel you need to. I have a boy who is also, what is described as 'developmentally delayed', not yet walking at almost 20 months, so I get some of those emotions you're feeling. If you can find a local inclusive baby group, or even other baby mums on your wavelength, then it makes a difference. 

Please keep us posted with how you get on, and wishing you and your little family all the best.