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So sad for my son

24 replies

Ferfecksackmammy · 24/06/2023 10:45

My son is amazing. He's 4 years old and has been through so much. He's got a genetic condition (SMA) and is a wheelchair user. He smiles through every challange and rarely complains.
There was an end of term get together yesterday for nursery. It was in a softplay which I wouldn't normally attend but decided to last minute. There was nothing he could play on. The other kids were running around and he ended up sitting with me playing with a toy plane. He did try and interact with other kids but it didn't really work.
Summer holidays are next week and it'll be just us for most of it. I've lots of days out planned but he'll be missing out on interaction with other kids.

Most activities for 4 year old involve lots of running around and he just can't take part.
Nursery have said he's very social and has plenty of friends.
Any words of wisdom would be appreciated

OP posts:
GoodChat · 24/06/2023 10:48

Oh bless him, poor thing.
I'd have expected nursery to check out their facilities first and make sure it was accessible.

Ferfecksackmammy · 24/06/2023 10:52

It wasn't organised by nursery it was a last minute thing organised by the parents.

OP posts:
AtrociousCircumstance · 24/06/2023 10:53

Just sending a hug. It’s great he’s got loads of friends and is well liked and happy. And a loving mum ❤️

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ODFODeary · 24/06/2023 10:54

Im sorry if I sound rude as I'm not sure about his condition but could he not lie down in the ball pool or would that be too dangerous?
The nursey should have thought this through though as visit to an animal park would be more inclusive

ODFODeary · 24/06/2023 10:55

Ah just seen, not nursey organised

Mmhmmn · 24/06/2023 10:55

Ferfecksackmammy · 24/06/2023 10:45

My son is amazing. He's 4 years old and has been through so much. He's got a genetic condition (SMA) and is a wheelchair user. He smiles through every challange and rarely complains.
There was an end of term get together yesterday for nursery. It was in a softplay which I wouldn't normally attend but decided to last minute. There was nothing he could play on. The other kids were running around and he ended up sitting with me playing with a toy plane. He did try and interact with other kids but it didn't really work.
Summer holidays are next week and it'll be just us for most of it. I've lots of days out planned but he'll be missing out on interaction with other kids.

Most activities for 4 year old involve lots of running around and he just can't take part.
Nursery have said he's very social and has plenty of friends.
Any words of wisdom would be appreciated

Is there a relatively local group he could also attend with other kids who use wheelchairs to give him some time with kids who would have that in common? Might find something online through a charity?

7Worfs · 24/06/2023 10:55

It’s thoughtless of the nursery to not have 1-2 activities planned where he can participate…
Are you in a position to host play dates where you can plan games and activities?

My 4yo loves Lego, puzzles, painting, colouring, and sometimes at the end of play dates they also like to eat sine snacks and watch TV together.
A lot of board games suitable for that age too.

Ferfecksackmammy · 24/06/2023 10:58

There was no ball pit. Even the toddler bit was not accessible

OP posts:
CookieCutter8 · 24/06/2023 11:01

Might be worth looking for groups within your area for children in a similar position- alternatively why don't you reach out on social media and start your own meet up group - I bet there's many other Mums in your position who would be glad of activities/meet ups/chat etc! Great way for both you and your son to create friends 😊 sometimes it's upto us to make things happen 🥰 he sounds like a lovely little boy and you're a great Mum so I'm sure you'll both have no problems making a network of friends

ODFODeary · 24/06/2023 11:04

Well that's shit then, why aren't they automatically thought about? It's the same with children's play parks
@Ferfecksackmammy organise a similar trip to somewhere your child can join in the zoo or cinema, slowly educate them

GoodChat · 24/06/2023 11:11

Ferfecksackmammy · 24/06/2023 10:52

It wasn't organised by nursery it was a last minute thing organised by the parents.

Ah fair enough.

Was he upset?

Ferfecksackmammy · 24/06/2023 11:20

He didn't seem upset.

None of the local groups feel like a good fit. There's groups for older children which is great.

I'm going to try and set up some play dates over the summer.

OP posts:
DryIce · 24/06/2023 11:27

Oh he sounds wonderful OP, such a happy little chap. I have a 4yo, and it is true they do lots of running around ,but we also have playdates and do lego building, board games, colouring, dress ups - we did face painting and hair chalk (in the garden!) last week

itsgettingweird · 24/06/2023 11:33

How close are you to splash parks, beach or country parks etc? Do any country parks have accessible play parks? (Ours does).

Places you can take games such as swing ball or skittles etc as well as be on the floor?

As children get older they are much more able to play together and so 4yo will be good in nursery setting at including him and should be fine in school too.

It's just finding things outside of nursery setting you can suggest to meet up that your ds can access too.

I'm sure the other parents would be more than willing to attend alternatives if you suggest them and explain.

And anyone who isn't doesn't deserve to be your friend and your ds deserves better people than them in his life Flowers

Brandspankingnewandshiny · 24/06/2023 11:45

What about music classes? That's something where you'd be encrypted not to be moving around. Or maybe drama classes?

Brandspankingnewandshiny · 24/06/2023 11:46

Swimming?

Marblessolveeverything · 24/06/2023 11:48

Would water based play activities suit him?

Outofthepark · 24/06/2023 12:17

That end of term part must have sucked and I'm so sorry there wasn't a proper provision for your son because there should have been.

As for summer, I remember because of where we lived a few years back, my little guys were mostly always with me. We'd run into other kids now and then but not so often and they genuinely loved it. We still have so many memories of the awesome activities we always got up to, and we're so close.

SayHi · 24/06/2023 12:23

I would look into groups for children with wheelchairs so he has friends who are like him.

I would also think of ideas that he can do and then invite friends round and do these - cinema, playing ball, swimming with a flotation device, cooking, messy play, karaoke, clapping games, toy cars on a table where they can draw the road, Lego etc.

I would too feel sad for him and kids are so inclusive but they don’t always know what someone is capable of doing (neither do their parents).
So I think if you show them what he can do then they’ll be able to include him much more.

KitchenSinkLlama · 24/06/2023 12:32

I'm so sorry for him - he sounds like a brilliant little chap. Have a lovely summer together. 🎈🎈🎈

HidingUnderMyDuvet · 24/06/2023 12:37

Not helpful at the moment perhaps, but our school does have a few clubs that aren't movement based (lego, textiles, art, etc) is there something like that he could access?

JenniferBarkley · 24/06/2023 13:06

Definitely organise the play dates for the summer, especially if any of the kids will be in the same setting as him come September Flowers

C152 · 24/06/2023 13:19

It might be a bit easier as he gets older. My DS's friends (aged 6-7) run beside him in his wheelchair, they play frisbee and the other kids will often offer to collect his throw and return it to him, they offer to push him (which I politely say no to).

Does your DS have a couple of friends he is closer to? If so, I would invite them over for play dates. Children are pretty good at adapting to their friend's needs. If my DS is having a period where he's too tired to leave the house, one or two of his friends will often come around and uncomplainingly play Monopoly or do some art with him. (I suspect their parents may have explained in advance that he's not well enough to be active at that time, so expectations have been managed in advance.)

Parties are harder, but so far the parents involved send a text or call to say, 'this is what's going to happen at the party' (e.g. trampolining, slime making, climbing etc). So far they've all been very welcoming and said DS is very welcome to come, regardless of how much he is able to participate. I just decline the invites which are for very physical things, like being held at a trampoline park. We've been lucky and most have been parties where DS can fully participate, like slime parties.

I would consider being referred to a community physiotherapist, as they often have access to soft play areas that are accessible. Also look for charities that support children with differing needs as, again, they often have access to particular spaces, arrange days out to places that can seem difficult to get to when you're on your own and organise big summer parties and sports days etc.

Your little one might be a little young, but it might also be worth looking into things like wheelchair basketball groups?

Eve171 · 24/06/2023 22:14

I agree with everyone saying about finding something accessible for him, but also, can you write to the soft play centre? They 100% need to look at their accessibility. This isn't just your child affected. I know it's not your job to "fix it" for everyone, but if no one speaks up, they will NEVER make it right. Please use your voice as your son is too young to use his for things like this.

I'm so sorry this happened to him ❤️

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