6 year old cant walk far days out are an issue

[TheStandardLife]

Our sweet child has a rare autoimmune condition, from the outside she looks totally "normal" if you will, however from time to time it can really wipes her out.

Half term is coming up and I'd really like to take her to London and possibly a day trip to France.

The only thing is, she won't be able to walk all day. She will physically burn out especially if its cold she will just shut down.

We try to take breaks in the warm and have snacks ect and have a rest but its a big sensory overload for her aswell (recently diagnosed adhd has tics ect when anxious) so burn out from that also.

Last month we went to London we went to the natural history for an hour and then had a break and then went to see a show she fell asleep in the pram (please don't come for me) we then made our way home and she fell asleep again on the train, she wasn't even interested in the history museum she was too tried from the journey up.

I just don't know what to do, we don't own a pram I borrowed it from a friend just in case and to carry our picnic ect. She was only diagnosed with her autoimmune condition last year.

She just goes pale and cold and she needs to take a nap. A friend suggested ear deafenders for the journey and to just do one thing.

I just don't know what to do. A 6 year old in a pram isn't ideal. Shes quite tall too love her.

Despite her little world being rocked she has such a zest for a life and fighting spirit, she wants to create leaflets and art and take pictures of where she has been.

She wants to see the world, see the UK go places do thing's. She understands as much as she can at 6 that she has " a little thing" in her own words.

Its been hard to adjust with little support to navigate this autoimmune disease but the recent adhd (we saw the signs but its taken forever and things changed when her health declined) it really added another layer, were just winging it as best as we can.

Some great ideas here, I do spend hours looking at things but its always great to hear from other parents/care givers recommendarions.

Thank you

You need to make sure you're getting her the all access ride pass in theme parks, that way you're not standing in queues and just go to the disabled entrance when it's your time. Makes a huge difference.
Some kids find a proper wheelchair a lot less embarrassing than a SEN pram.

I live in London, and wouldn’t do a museum and a show as well as travelling with my healthy 7 year old.
i think even for a healthy child of that age your plans are ambitious.
your DC is clearly not getting much out of it - why don’t you do something that works better for her?

You can get a pretty decent pram from argos for £35

I don't know if it helps at all but I recently bought one of these to use on a very busy city break when I knew DC (6 yrs) would get tired of walking at times

It's not perfect by any means but it fits in your handbag and takes a little extra weight on the times you need to unexpectedly carry her?

Children Carrier, Portable Ergonomic Baby Sling with Adjustable Comfortable Shoulder Straps, Soft Baby Sling Portable Shoulder，Baby Carriers from Newborn, Baby Wrap Sling for Newborn. amzn.eu/d/9b0xkn4

McLaren Major Buggy used to squeeze DD into one of these including for trips to London. They fold up umbrella style so we could use the tube

I was horrified aged six when my mother put me into a buggy because I couldn't manage to walk far or fast enough for her. I think a wheelchair would have felt less humiliating for me, as it was OK in my mind to need a wheelchair, but to go into a baby buggy, even if it had been designed for larger children, was probably the worst thing she ever did to me as a direct result of my physical issues and pain.

I also hated the 'No, you can't do that, not with your joints/I know what you're like/You won't be able to cope' narrative. I also bitterly resented being restricted to little, close to home trips (or in my case, not doing anything).

Agree with others, a Maclaren major buggy or something similar, let your daughter help choose & accessorise it. They’re lightweight for public transport and easy to manoeuvre.

“Normal”. Would you like to try that one again?

Do you mind me asking what the condition is?

I would try for one activity and over time she may be able to manage more.

I would stick with the pram though to help.

Buggy or wheelchair and only do one thing a day when she is up to it.

If you wanted to try the museum again, they do Dawnosaurs for kids who can't cope with the usual overwhelming experience. It's early opening hours (8-10am), free but you need to book. I think only about 150 people attend rather than the usual thousands. It's nowhere near as noisy, plus it might help her to see other kids with tics and health conditions.

By the way you know that lots of venues do have free wheelchairs and seats to use, right? Most museums have wheelchairs, certainly the big ones. Usually adult size though. Also worth asking any venue she's interested in whether they run neurodiversity friendly/quiet/relaxed events.

@user1473878824
Agree normal!!!!!!!!! No
However OP used it as a help way, and in any circumstance don't take your child to a
City. Asking for help for an atypical child they hate being in a city more than any child. Just because other people say that can strap their children into a pram and they can be quiet in a museum doesn't mean any other person can

If you can't get hold of a SN buggy/wheelchair, what about a one seat bike trailer?
Agree with the others who say planning, limit number of activities and more planning!

We do regular short trips rather than whole day outings.

I strip it all down to the essential activity. That's the highlight & focus.
But she know in X weeks we will be back again to do Y.

There is no point booking morning and afternoon activities when by the afternoon she's too exhausted and struggling with sensory overload to get the best from it.

Try a referral to your paediatric occupational therapy service. In many places you can self-refer or go through your GP.

Depending on local criteria they can either refer you to a wheelchair service or support you with a grant application to purchase one.

It's pretty simple that if these things exhaust her and leave her ill afterwards, she is unable to do them at the moment, sadly. A six year old doesn't really understand this but you as the parent can.

I'm not saying don't get specialist equipment to help her (in fact I recommend it) but start small.

I wanted to swim with sharks when I was 6. (Yes, I was an odd child). It doesn't mean my mother shipped me off to France for a day trip to do it.

You sound very caring OP, and that you want to help her live her life, which actually is wonderful and will serve her well with coping with this illness as she grows. But one of the biggest things that is hard for anyone to accept with an immune illness, is that we simply can't do everything despite our brains wanting to, as the body cannot cope.

Even as an adult coping with such an illness, my brain tells me I want to do things, that in reality, will make me poorly. Whilst I have supportive people around me, who encourage me to live life and will help, they also, importantly, remind me about the effects of this and how I will suffer afterwards, if I try to pack too much in too a short space of time. Obviously you can't explain this to a child as such.

I totally understand the travel etc exhausting her. It's about balance. Start small, with some good equipment, and you can see about building it up depending. I wouldn't bat an eyelid at a child of any age in a buggy. And if I did, I would assume there was good reason for it.

This is new for you all and you will find your way. She sounds wonderful & like she has such a zest for life. I wish you both the very best.

Sounds like you could be eligible for DLA and with that, carer entry for things like Legoland and priority queuing etc.

I think the points about finding out if she would rather be in a standard wheelchair vs a medical needs buggy are worthwhile.

And good ideas re theme park arrangements.

I wonder as well if it's worth keeping a basic diary of what she gets up to and the severity of her symptoms. A bit like a food diary when one is trying to work out what triggers intolerance type symptoms. It might be that there's nothing that flags up as correlating but it might be worth a try. i.e. maybe it's that if you want to do something big at the weekend you have to plan a totally quiet weekend the week before and skip school clubs or whatever. I don't know but you might be able to spot a pattern if you write it down.

My 6 year uses SEN pushchair, she has ADHD/Autism. Plus a stomach problem so also finds it hard to walk hard for too long.

My daughter actuals loves her buggy, she only tends to use it when she gets tired. Who cares what people think, looking at my daughter she is very much fits into the hidden disability.

We put off the buggy purchase for a while, really wish we had got it sooner.

Nothing wrong with using a buggy, for now a larger "normal" buggy is fine, you can also get "special needs" ones that look similar but take a larger children (much lighter than a proper wheelchair) I think headphones to reduce the sensory overload on the train could be a good call but you also need to pace yourself, hard as it is. Do not feel bad about resorting to buggies - I used one at Disney for mine (they rent them) they were 6&8, elder is autistic so gets overwhelmed, younger was a lazy so and so (she's the really fit active one now)

I used a McLaren major for my eldest, it even coped with being flown to Spain. If eldest was walking the buggy carried the stuff instead, My younger DD had a self propelled small teens wheelchair, meant I could push it for her when she got tired. McLaren was great for a kid who could walk some and needed rest some. The wheelchair was much better and comfortable for a kid who could not walk. McLaren folded smaller and was much lighter. could be used on most transport. DD wheelchair was heavy, bulky and took up all of my car boot space. Might be worth chatting with an OT and physio as to what might work best for your DD and suit your families life style. TBH with my DD got very slowly back on her feet and learned to walk I used the wheelchair to get her to where she wanted to go and she would use her crutches to see what she wanted to stand to see. Wheelchairs larger wheels coped better in rural places such as national trust parks than McLaren. McLaren was better for cities. Second others suggestions of picking the fights. Aim to do just the one thing per trip out so it’s fun and enjoyable and not to tiring. Have a second idea in reserve for a really good day that is close in distance to the first I.e museum and if she is not too tired cafe.
from experience it is also worth contacting places in advance to ask about their accessibility. some gave my DD priority and she could go straight in rather than queue and offered extra support from staff to access direct wheelchair access routes in buildings etc that are closed to general public use.

Eg amazon has a reasonably priced one for up to 50kg (approximately 10 years) foldable for easy storage and travel.