Just a moan

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I have two high support needs kids aged 6 and 2. Both are non verbal, need help in every aspect of physical care and daily tasks and have a very limited amount of the NT world that they can access due to their needs.

But what really annoys me is when the tiny bit of the NT world that they can access is made difficult by the business or activity putting their SEN sessions at either 8am or after 6pm, on a week day or even if we can get to the session/activity then they are clearly not expecting SEN presentation like my children. So we end up in an even smaller slice of the wider community because of useless definitions like 'reasonable adjustments' or similar.

The thing that has caused this rant is my attempts to find a dance club which will understand that my oldest might not learn the dance steps but she will thoroughly enjoy being surrounded by music in a big room. I would happily pay full price and I would obviously remove her if she was disruptive but not one of the five clubs I have called will let her attend. But ALL of them talk about inclusion on their websites and have SEN policies. It really fucks me off...

Perhaps they are right and I am expecting too much. But all I want is for their worlds to expand beyond home, school, parks and National Trust type parks.

Anyway, I know there isn't really a solution but just wanted to moan. If you've read this, thank you.

I have read this, and I hear you.

I'm sorry you're experiencing this. Have you tried anything like Guiding or Scouting for your eldest? They are run by volunteers so it may take some time to find a group that's the right fit but maybe worth a try? My son with ASD has got a lot out of scouts (although I will be honest and say it's not always been plain sailing).

I did think about scouts/guides but most of the activities are beyond her abilities and interests so I don't think she will enjoy it. I am going to see how she gets on at her new specialist placement as she is thriving and then reevaluate what groups she might like at the end of the school year.

Late to this but came to say - I agree and it drives me MAD!

I haven't experienced anything as thoroughly isolating as attending a SEN activity/group and finding my daughter is too disabled for that community. It honestly destroyed me when I tried to attend a few activities.

To attend those spaces and still be 'othered'. Parents sat together at SEN sessions whilst their kids run amock - which I get the point is meant to be that the kids can be more themselves but what it actually means is that it's MORE dangerous for my disabled daughter because shes surrounded by kids who likely need supervision, not being supervised, and with fewer regard/understanding of adapting to others needs.
But yeah... to go and feel like my daughter is still the most disabled in the room absolutely broke me.
I want a life beyond parks, national trust too. She loves her specialist school, but the weekends are so damn repetitive for us

I agree, sometimes "SEND" sessions are just too much for my son. They often aren't designed for people with high support needs. We pretty much only go to parks and national trust here too.

Not to mention the cost. My son has 1:1 swim lessons as there's no way he could do a group session and it costs £150 for half a term.

No village, no one who wants to babysit (can't blame them rly), no activities, it's all a bit pants really.

SEN groups don’t work well for my DC either. Not least because they are often noisy.

For DS1 (complex physical, medical, psychological a developmental needs), who has the most complex needs out of my DC, we find 1:1 SEN things work better. For example, Wet Wheels, adaptive surfing, hiring a sensory room. Not without difficulty and sometimes more expensive though.

@Komododragonchocolatecoin depending on where you are and what disability DC has, have a look at Level Water for SEN swimming lesson. Some people have more luck looking for a PA/carer rather than a babysitter.