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SN children

Summer holidays (severe asd DS)

4 replies

Bigjamsandwich · 20/08/2023 17:47

Anyone with ASD children on the severe end of the spectrum and how do you cope with the summer holidays? DS (7) is pre verbal, a happy little soul, full of joy. He’s still in pull ups, has to go in a disability buggy when out, is extremely strong and fast. Needs two adults to take him out ideally. I am getting to the point where I am struggling to take him anywhere on my own. DS (11) is a huge help when we are out with his brother. DH works very long hours (12/13 hour shifts) and I don’t drive.

How to manage?!

DS potters about happily at home and enjoys his trampoline in the garden. He has 3 hours per week where he does get taken out by support staff and gets to enjoy an activity which helps a bit.

Summer holidays are so so long and I really do envy those who can go off on long bike rides, cinema trips, into cafes or to the beach for the day.

I am unfortunately getting to the point where I soon might be unable to manage DS on my own in public. He likes softplay but will strip his clothes off inside the play area, last time he was discovered by my older DS going around quite happily completely naked! 🙈

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OvertakenByLego · 20/08/2023 19:49

It sounds like you need updated social care assessments, and depending on DS’s needs maybe looking at continuing care funding.

If DS uses an SN buggy while out, would he go in an SN bike trailer or an SN buggy that has a bike attachment?

Is DS1 already supported by your local Young Carers Service?

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Bigjamsandwich · 20/08/2023 20:38

OvertakenByLego · 20/08/2023 19:49

It sounds like you need updated social care assessments, and depending on DS’s needs maybe looking at continuing care funding.

If DS uses an SN buggy while out, would he go in an SN bike trailer or an SN buggy that has a bike attachment?

Is DS1 already supported by your local Young Carers Service?

Thanks for replying. I’d love to try DS in an SN bike trailer. I’ve seen some great ones although they are v.expensive-hoping to get funding for one.

Yes 3 hours a week respite in the holidays is hardly anything although I’m grateful for DS managing to go out and enjoy an activity that I wouldn’t be able to access.

Been told that he’s at the top of the list for overnight respite which will hopefully start in the autumn for 24 nights per year. He will access days out and activities with a little group of similar children which will be nice.

DS1 isn’t supported by the young caters service. I will contact DS2 social worker for advice about how DS1 can access this.

Do you know what is meant by “continuing care funding?” Sorry, new to all this! Thank you

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OvertakenByLego · 20/08/2023 20:54

Continuing care funding is NHS funding for DC with complex needs. You can find more information here.

Yes, SN buggies and bike trailers are eye wateringly expensive. It is often possible to get part funding at least. DS1 uses a Delichon Delta SN buggy which has a bike attachment. Unfortunately, he is near the weight limit for the bike attachment, so we are getting an X-rover which is being part funded by a local charity.

You may be able to find contact details for your local young carers service on google.

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SachiLars · 23/08/2023 18:56

I think you are a couple of years ahead of us. Your DS sounds like my little boy. It does scare me how fast and strong he is!

If you find anything that works, please do post!

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