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.

I have a six year old who is normal and she is knackered after walking half an hour.

Unfair of you to expect your child to do day trips to Paris

Hi,

More of a background: She wanted to see Andy's dinosaur clock and real dinosaurs, she's asked us for a year to go, and watched all the YouTube videos of the natural history, she saved up her pocket money for the gift shop and was so looking forward to it. Unfortunately on the day she just struggled with it all emotionally and physically.

The show was booked as a Christmas gift which she genuinely loved. The Museum was the issue out of the day, and the train.

Prior to her illness she's travelled to France and loved it, we live right by the coast so its very quick on the euro tunnel and we are there, she's travelled to other countries and we've travelled all over the UK.

She wants to go to lego land this year, which shes been to before her illness. We did a long haul flight in the summer to see her family and she was also fine flying, time difference and with people she hasn't seen in a long time.

Every weekend when she is well she wants to go places and do something, during the week she wants to do clubs and is fine, it's just about us finding a way to make it work when she is well, keeping the balance, but she still has the physical exhaustion and sensory over load with the adhd.

Unfortunately her illness is silent, but her personalty is strong and shes fed up of missing out and hates being at home. She wants to live her life.

Perhaps the answer is just one activity, and in a pram/sen chair although she is very self conscious as her tics have knocked her confidence and thinks people are always looking at her.

This is probably very confusing to read I understand its hard for us to ever explain, I have a child who is high energy, albut burns out, loves to go to new places, will fixate on it but, but struggles with sensory over load and anxiety. She has a rare silent illness, her consultant has only seen 1 other case, we trailed a treatment plan but it hasn't worked, one minute she is well and fine, and the next is very unwell its totally unpredictable and try as we might we have little support.

She is a natural explorer. She always wants to be outside its just her body lets her down sometimes.

SN pushchair with a decent cosy toes/blanket system to help keep her warm.

I wonder if one of the microwave hot water bottles like my dog has would help too, she could cuddle it.

If you use blankets it needs to be under her as well as on top and windproof for it to be toasty.

Look out for a special tomato buggy. They recline and are hooded so great for napping in and look more like a regular buggy

Another vote for the maclaren major, get the GP to make a referral to the wheelchair centre, your DD is entitled to it.

I'm really sorry your DD is struggling with this, you sound a lovely mum ❤

We got my GC SN buggy free from OT. Have they been involved? It enables full days out and because my GC doesn't cope well with the cold, she's cosy under the hood. I don't drive and I'm my DD's childcare, so we haven't had the choice to not get one.

Get her a big buggy, wrap her up and do as much as she wants to do. Let her lead you in what she can tolerate and enjoy the day as a family. Even if you spend a couple of hours in the museum coffee shop while she recharges and naps. Do restrict where you go if she wants London or France do it, just slowly and stress free.

That's supposed to be Don't restrict where you go

Your update puts quite a different spin on the situation.

If your daughter is set on going on these days out then you do need a range of strategies to act as a back up to support her if she isn't well on the day (and one of those being not going, and doing it another time)

The SN buggy, ear defenders etc will be a lifesaver.

You say she's self conscious - that's such a shame when she's only very young - but lots of repeated, positive language about how much her aids will help her is needed there.

On an aside - France doesn't have a great reputation re special needs so I'd give it a swerve personally.

I'd highly recommend a centre parks OP or something similar. I wasn't looking forward to our first trip there - not my bag usually, but I couldn't fault it......kids had an absolute ball and it was a relaxing change for me not having to put so much effort into navigating everyone's needs......it felt like a holiday.

And I think having the lodge as your own little safe space to return to and chill helps with the overwhelm. Hope you manage to work out something that let's you all have a break :)

If she feels self conscious maybe some personalisation of the wheelchair/push chair would help. I'm sure there must be all kinds of services for painting or the personalised wheel discs, accessories, stickers etc I bet you'd find something on etsy and then you can just say that they are looking at her brilliant vehicle and they are jealous as they'd like to be pushed around.

If she wants to go on the trips then brilliant, take the wheel/push chair just in case and load it up with a sensory grab bag, noise cancelling headphones, sunglasses, floppy hat, fiddle things, blanket with tags ETC and use it for the walking to and from and then she can walk or be carried at the venue. Maybe get her a simple camera so she could be the trips photographer from her chair if she's struggling to walk.

I second a McClaren Major buggy.

I agree with other posters that you're being ambitious. I know you've been looking forward to doing these things with her, but MOST 6 year olds would fall asleep on the train home after a day out with the natural history museum AND a show. I appreciate what you say about her having other limiting factors, but 6 is still very very little. A day trip to France would wipe out my 11 year old completely (and me too, to be honest).

1 thing only, really. I was was taking my kids (much older than yours) to London for the day I would think V&A OR Science Museum OR Nat Hist Mus., and bracket it with food, then train home.

She sounds so lovely and you sound very caring and your recent post explains the situation well ❤️

As she matures and with your support hopefully she will get better at understanding why and how to balance her needs better.

Could you have a big planner on the wall and put on her favourite regular activities and talk about how doing too much more will make her unwell. Then discuss her priorities of what to do on top of her regular stuff?

Also keep a diary with her of how her day has been (have a ranking system for pain, overload etc) so you look at cause and effect together to help plan what she does and doesn't do and when.

If she is small and under 22kg I'd recommend finding a second baby jogger city mini they are quite big but very easy to fold. Not sure how big your daughter is but my nephew is 6 tomorrow and 18kg so if she's under 22g there are lots of pushchairs she could still fit into. X

*second hand

I have the same with my DD. Its hard but you have to learn how to manage it. So one activity, she cant do what she used to do. But planning things so she doesnt totally miss out. So with Legoland I would see if there is a nice hotel you could stay at. Travel there and if she is up to it a short visit that day. Then next day another short visit and then home.
My DD often has to nap in the afternoon - she is a teenager. A full day awake is too much. And I do everything when we go out to minimise her getting tired from where we park, to going later so she can have a lie in.
Its hard, but you cant live as you did before.

"On an aside - France doesn't have a great reputation re special needs so I'd give it a swerve personally."

That got my back up. How has a whole country not got a "good reputation" when it comes all "special needs"? That's ridiculous. And certainly shouldn't stop anyone going anywhere. I have a very obviously SN daughter and I have no issue, whether in France or in the UK. People are usually lovely and accommodating.
In France people do look more but it can absolutely be out of interest and it is usually in France that people ask questions whereas here I know they notice but they pretend not to. Which is not particularly better in my view.
In any event I didn't like the sweeping statement! (yes I am French)

What about a wagon type chair that you can pull her in rather than a buggy? She could have a hot water bottle and blankets and then chose to get in and out at will? I've not seen too many people use them in UK but we had to use one previously on holiday after an injury and they're very common in the US for kids of all capabilities x

Oblada

That's your view, and your experience and that's fine. Mine and others I know have had very different treatment in France.

Sorry it got your back up.

If you're talking about Little Red Wagons and their ilk, I wouldn't recommend them. They're heavy and unwieldy, and you'll end up with a very sore shoulder after an hour or so.

My ds has mitochondrial disease which presents similarly to many autoimmune diseases. It's mostly completely invisible to strangers and he looks like a normal healthy child. When he was young, we would just bring a Maclaren buggy with us (ostensibly for his sister who was 2 years younger, but wanted nothing to do with it) and he would sit in it when he was tired and often fall asleep at random times. But he still wanted to go on all the outings and participate when he could. His disease wasn't diagnosed until he was 11 and shortly after that point the doctor did the paperwork for a blue badge so at least I could park near things (we're in Los Angeles, so not a lot of walking to things).

Other Ideas:

All the amusement parks here (Disneyland etc.) will give you a special pass if you have a disability (and here they don't even make you prove it with a doctor's note) which lets you (and your family party) go to the front of the line which really helps make the visit easier for a child like my (or your) ds.

Also, I read somewhere about sunflower lanyards that they have in the UK for people with invisible disabilities...is that only for airports, or could you just hang one on your ds or his buggy?
The hardest part for us was when ds became a teenager and then he didn't want anyone to know about his disabilities and overdid it all the time (and then would get really really sick). He's now 22 and only just starting to grow some frontal lobes and recognize his limitations and how to not let them limit him from living life. I think if he had been diagnosed earlier, I could have done a better job of working through these concepts with him.

Can I suggest you look into disability sport? There is so much available now. I thoroughly recommend wheelchair basketball!
It is something she can do that is accessible, fun, very physical, but also allows her to interact with other people with disabilities. We internalise so much ableism even from a very young age and even with the most well-meaning parents.
It's early days for you and takes time to adjust to limitations, especially with fluctuating disability.
You're doing great but mobility aids can be exciting as they open a whole world for you, not embarrassing. It really helps to have the right equipment though.

Oh bless her, poor girl.

I would just buy a buggy- you can get specialized ones for older children; she clearly needs it, and nowadays people are more aware of disability- nobody would bat an eyelid.