What helps with lifting your large, non walking child

[Muminabun]

DD is 2. She can’t walk at all. She is currently having investigations etc. She is at 98% + on all centiles and 15kg. She also lacks muscle so she can’t really hold onto me or cling like my other DD did at that age. My other DD was the same weight at 4 years old but seemed much lighter and easier to carry and I think this is because of the lack of strength and grip. Anyway we have applied for DLA and she already has some diagnoses and we are hoping to have a much clearer picture at the end of the year as tests are completed and results are back and I I can t really find any others experiences.
What do you do when your child is too young for assistance but gettjng too heavy to lift. I am an older mum and I am finding I am quite tired by the end of the day and my shoulder, knee and ankle are starting to get quite stiff and painful.
She is a very long way off walking and being out of nappies if ever.
I would really appreciate any advice about what you do with your larger non walking kids especially in the house. She crawls and I carry her around but do you have a good changing table and high chair etc

When you say too young for assistance what do you mean?

Has DD had an OT assessment at home to look at what equipment or adaptations can help you/her?

Have you had social care assessments? A carer’s assessment for you and an assessment via the disabled children’s team for DD.

Has DD been referred to wheelchair services?

Thanks so much for replying.
I assumed that she would have to be three years old before I could get mobility help.
No to all of the other questions and I have never heard of any of these services before.
She has been under the care of the local child development centre team. They didn’t refer her to the local nursery inclusion team I did all that myself and researched it. I have told them I am struggling with her size and weight.
They have never referred her on to other services aside from medical testing.
I am seeing the occ therapist in a couple of weeks at home so I will quiz her on all of this.

You can’t get the mobility component of DLA until 3 (for HRM, or 5 for LRM). But you can get equipment and adaptations at home before then. And if DD needs more than a pushchair on general sale can provide, whether because of her medical needs e.g. needs more support or because she has reached the weight limit (not a problem now but may be soon), wheelchair services will help before 3 too.

You can ask social care for assessments yourself. You can also refer yourself to portage and apply for an EHCP yourself too. If DD hasn’t seen a physio in some areas you can self refer there as well. Have you heard of HomeStart?

Thanks for your fantastic advice imitatingdory . I am off to google and do a list. I also have a kids charity which is local for disabled children so I will contact them to find out if there is anything else I need to do.
I wish there was a handbook for being the first time parent of a disabled child there is so much to do and think about as well as worrying about her progression and future.

It’s good that you are seeing an occupational therapist soon, they should be able to help with equipment such as a chair for home which will double as a highchair and an activity chair. They will be able to provide something that has postural support, make sure you say you want this to be adjustable in height - it makes things easier. Google “Leckey squiggles” for the sort of thing I mean. Is your daughter under a physiotherapist? If not I would speak to your GP, or the OT about that. The OT should also be able to refer you to wheelchair services who would provide a more suitable pushchair. Is your health visitor any good? Or if not ask if there is a health visitor for special-needs children in your area who might be able to help more

If getting in and out of the car challenge, there are special car seats which swivel – they can be expensive unfortunately but there are charities who will help. Again your occupational therapist might have details of these?

@Muminabun

Thanks for your fantastic advice imitatingdory . I am off to google and do a list. I also have a kids charity which is local for disabled children so I will contact them to find out if there is anything else I need to do. I wish there was a handbook for being the first time parent of a disabled child there is so much to do and think about as well as worrying about her progression and future.

I don't think it's exactly what you're after, but just in case this is helpful... contact.org.uk/order-your-copy-of-the-helpful-guide-for-families-with-disabled-children/