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.

This is my thought.

natural history museum have wheelchairs you can use - we borrowed one for my disabled niece when we went there, ditto the British museum - but she is adult I'm not sure if they do smaller ones. Also they will take you to the front of the queue if you have are or are with a disabled person.

I think your days out are too ambitious. Going somewhere local that isn't full of people and doesn't involve public transport or hours in traffic might work better. I'd forget city trips and France.

Is there some nice garden or park you could get to? Somewhere she could feed ducks? A small local gallery showing an exhibition? A choral or orchestra concert in a local church or auditorium?

You should look for a suitable adapted pram or buggy from a charity or organisation, or see if you can find one second hand online. I can't believe anyone would give you a hard time over using necessary equipment for your child, and if anyone does, remind yourself you didn't ask for the opinions of ignorant people.

Unless you’ve got other children or reasons to pack a lot of activity into one day, you should be planning and organising a day out entirely based on her needs and wishes. Don’t exhaust her unnecessarily.

Those plans sound too much for an average 6 year old - my extremely energetic eldest who loves to be out and about would have fallen asleep/been too tired to enjoy them when he was 6.

Are you particularly set on those trips to please other children or something?

They just don’t sound realistic for your daughter. I have an autistic 6 year old and we’ve massively changed our plans and what kinds of trips we take to accommodate his needs.

I don't really understand why you plan days out that you know she can't cope with, much less enjoy.

This. Very strange.

Forget all the 'rules' about parenting typical children; they don't apply to your daughter.

Don't reduce opportunities; just accommodate the shit out of everything.

You need a special needs buggy (the special tomato jogger is brilliant and suitable for a tall 6 yo). They sell wool seat covers etc to fit, so she can be warm and cosy.

Are you skipping the queues?

Another saying get a special needs buggy.

A 3 wheeler jogger/ mountain buggy is ideal as they are spacious, lay back and have a large hood.

My ds has a rare neurological condition. One minute he's bouncing around and the next in his wheelchair. You just have to go with it.

I'd also look at getting her under layer clothes to keep the warmth in.

Get a wheelchair.

My daughter has JIA, and we got one to use on bad days when she was first diagnosed. It has been a godsend.

We rarely use it these days, but when she has joint injections, it means she doesn't have to miss out on things. Or indeed, as you say, if doing big days out it helps with her fatigue etc...

If it's a long term condition, then having something on standby is worth its weight in gold. Just buy something a bit bigger that she can grow into. Or if money is tight, hire one.

I dont think its very strange. I think its someone coming to terms with the limits their child's fairly newly diagnosed condition places on their family life.

I think you do have to go back to basics OP start small and work out what adaptations work for your child and eventually when you have more experience (I.e knowledge of how to arrange queue jumping/quiet sessions etc) you will find you can start to do bigger trips that your DD will enjoy.

I was going to suggest the tomato. You'll find so many available second hand.

What does she want to do?

You said you'd like to take her to London and France, but that's after saying the journey alone to London completely wipes her out. So is it something you think is in her best interest or is it just something you want to do? Does she enjoy these trips if she spends half of it asleep? If that was my child, I know she would be more upset about falling asleep and feeling like she's missing out.

Is there more local stuff that may be more enjoyable? Less far to go so more likely to be able to enjoy any activities?

But yes I agree with the other saying to get a buggy for larger children. I have a trike with a parent handle for when my 5 year old gets tired, but they're not as comfortable and much more difficult to nap in.

if you are going to London how about a boat trip - you can sit and watch the scenery and than get out for a short outing the other end -and you can sit inside in the warm.
For instance a trip to Greenwich
Or perhaps The London Eye which you can book.

I agree: not weird at all.

Pre school sling? Could you carry her in a sling?

I don't know why you wouldn't just use a pram. It's not like she's just being lazy, she has a reason for it.

Because as a 6 year old and as she gets older they will not support her body correctly and will be uncomfortable. A special needs buggy is designed for use by older children.

Why don't you just buy a special needs pram? Who cares what anyone else thinks.

My son is huge at 4 and needa pram, ear defenders and dummy for sensory regulation. You learn to turn off the stares.

To be honest I'd also plan easier days if she gets that tired or use taxis. If she gets so tired she can't stay awake what's the point of planning tons of stuff

I think you are expecting too much really - a day trip to France would wear out any 6 year old, never mind one with the condition your child has. London is similar.
You'd be better off sticking to shorter trips locally, or staying in a hotel in London or in France (I'm assuming you are somewhere in the SE if you can take a day trip to France). Stay two nights - then the first day is travelling, second day doing a couple of activities with a rest in the hotel in between and third day travelling. That's if you really want to go to France or London with her. It would mean you have a base where you can go back and get warm, get some food, make a hot drink and relax for a bit - she can sleep if she needs to.

Speak to whoever looks after her medically to see if she can get a SN buggy or wheelchair through your local.NHS wheelchair service. They're not the greatest (as in there won't be a lot of choice, and they will do the job, but no frills), but buying one can prove expensive - whether she stops needing it, or grows out of it and needs the next size.

I had a brittax b agile buggy (the four wheeled version). You can pick them up on eBay cheaply if you can't stretch to the maclaren.

It folds in half so was better on trains as it's the right size for luggage racks.

The seat is huge with really good back height. I had it for a younger child but my tall 8 year old could fit in it when messing about.

Busy streets are no fun for walking at the best of times so save what she can manage for the more enjoyable parts of the day. If you are planning any picnics the small fold waterproof blankets take up no room and are light to carry but mean you can sit on damp benches without getting wet or down on the grass.

Be great for other types of day out

You could also get a buggy sun cover. Then she can have a bit of somewhere to hide if it all becomes too much and no judgy looks from anyone!

Our Brittax had a huge hood that would cover her more with being taller.

Her needs come above what anyone else thinks so do whatever makes life easier for both of you.

When DD was smaller and I didn't have as much money a few days in London would be a big deal and I'd pack our day full of exciting things to make it worth it. We'd get there ditch our bags at the train station storage and spend the rests of the day doing touristy things. Everyday was packed with exciting things morning, noon and evening. DD was always exhausted and never really seemed to enjoy it.

Fast forward a decade later and I now know DD has autism, she gets sensory overloaded and shutsdown rather than melt downs. We still do trips but factor in a travel day where we do very little else both ends of the trip. Travel in the morning, book into the hotel (same one each time at Stratford) and in the evenings might do a walk around the Olympic Park. We'll do a busy activity in the morning, a matinee show instead of evening where we can be sat and relax and then to the hotel, dinner and back to the room.

DD enjoys them more, has more time to process and it just means the other touristy stuff we leave for another visit.

If you want to do Paris pair it with a trip to Disney at their Centre parks type resort, a few days in the park and then take the train or a tour into Paris and spread the whole thing out.

People aren't going to "come at you" for an unwell child being in a pushchair no matter her age. You could buy an older child's pushchair, a child's wheel chair (our local red Cross rent them if you want to trial it) or a wagon with a garden bench cushion in the bottom which are good for festivals and beach trips. An additional needs pushchair would probably better if being used often and for sleeping in.

We've learned to pace things like trips to London to make them more managable for DS's needs. No mobility issues but he finds sensory input draining, and struggles with anticipation of the unknown. For us, going for a bit longer but doing less each day and having a few hours down-time between activities helps. Going to familiar chains like Premier in and chain restaurants so there is some familiar ground. We can't hop from one thing to another in a fully packed day like we would have done.

Getting a SN buggy/ wheelchair will do a lot to help as it's a chance to relax before burning out. It will save the energy for the interesting bits.