To have a little whinge about how privileged patents of NT children are?

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😩
It's half lighthearted, half just exhausted from a horrific day.

DS is 3 and is autistic. He's non verbal, a bolter, doesn't understand language, has no way of communicating and is EXTREMELY strong. (Took four very big male doctors to pin him down to examine him last time we were in A&E)

So stupidly, today, in half term we went to a soft play. 'The best soft play in your area!' It had amazing reviews, and I spent ages researching it, like, hours. Me and DH decided it would be safe, as it lets adults onto the main frame, and there was a gated 1-5 section that looked amazing, and there was a sensory room if it all went to pot and he needed to calm after a meltdown.

Well. We spent the best part of £20 for DS to have a meltdown, nearly be scalded by coffee and have a serve asthma attack from the panic attack he had. It was horrendous.
We lasted 20 minutes.
There was a second floor!!!! Not just a second floor in the climbing frame, a whole bloody second floor where kids could exit the play frame! And parents were m sat with hot drinks and food. I know to most kids and parents this would be fine, but oh god it terrified us! DS broke free from DH and was halfway down the stairs in mere seconds. He nearly tripped and fell, but luckily we had the reins on so DH caught him before he tumbled. And just the thought of there being an entire area where DS could be doing whatever he liked without us knowing was so bizarre, I've never been to a soft play like that before!

Then the exits from the soft play itself. Omg there were tonnes! We couldn't keep track of him at all! One went straight into the cafe area, where parents were leaving with hot drinks. It's not as if DS would exit the frame then go back in or even come and find us he'd just run, either out towards the door or to a strangers table.
The 1-5 area was full of older kids, the gate was never shut and it was absolute bedlam. There was even a kid ON TOP of the frame at one stage. The sensory room was in the middle of the baby area, so was louder than literally anywhere else so that didn't calm him down. Then to top it all off, our pram didn't fit in the baby change OR the disabled toilets (it's only a bugaboo donkey, not a bus)

It'd be so nice sometimes to not have to carry out personal risk assessments on a new place, it'd be so nice to not panic about losing him every waking hour. We take a picture every day before we leave the house, so we know what he's wearing in case he bolts. Even with the reins, he still occasionally manages to break free. I was so jealous of all the parents sitting there watching their kids, knowing they'd just come back to their table.
I wouldn't change DS for the world, but my god, today was hard work.

It must be very very hard for you. I am not sure using the word privilege which is a loaded work really helps but we will all understand how hard it is. As a single parent of twins without any disabilities mine would often bolt off in two directions at once - another challenge - at least there are two of you!

I have never once in my life gone to soft play however. It would be hell on earth. I have always gone to places I like such as a big field or a beach with no other people on it. Hell is other people!

Tiger by privileged I simply meant not having the added worries of having a child with SEN parenting is hard! Parenting twins single handedly would be even harder! I can't imagine what it'd be like, and that's kind of my point. Although each parent has their own set of problems and difficulties, for most parents of children with SEN, those difficulties can be endless.
I'd be so much calmer if when my son bolted, I had the knowledge that if another adult found him, he'd either be able to talk to them, or understand what they're saying. I'd love for him to have any vague concept of stranger danger or understand the basics of me telling him that.
The worries of your child being bullied is something everyone has however, my son won't be able to tell me if he is. I've recently reported a playgroup as a member of staff physically and unlawfully restrained him (for no reason other than to make him sit during song time) she really hurt him. He came out of that session really upset and couldn't tell us why. If it wasn't for another member of staff taking us to one side the next week and telling us (it was her boss that had done it, so I was so impressed that she came forward) we would never have known how he'd been treated, and why he was upset.
I'd sometimes love the privilege of my child being able to communicate his need for a drink, food, nappy change, toy or telling us where it hurts. It'd be so lovely sometimes.

This is just a general question for parents of children who have autism, but are your kids kind of giant?
DS turned 3 last week, and he's 106cm which is almost off the chart tall for his age. He's also made of stone, he's not visibly overweight, he's 18.5kg, so although he's on the 98th percentile, his BMI is calculated much more evenly and he's in the healthy weight range (because of the height!)
This makes everything so much more difficult, because it's like wrestling a 5 year old! Me and DH are tall, but I was just wondering if anybody else had this problem?

Dixi does your son have the strength of a thousand warriors too?
I did have to laugh when a strapping young doctor said he'd be able to examine him with just a 'little help from you, Mum' 4 sweaty doctors (built like bouncers) later, he wasn't so cocky
My DS has muscles in places I didn't know existed. He can physically pick up his 6 year old cousin and just move him out the way, like it was nothing! And my god, if he throws himself on the floor and makes himself a deadweight, i just have to wait for him to get up. We very rarely go out without one another, DH might be able to lift him for a short distance, but I couldn't!

I know Dixi it's so scary isn't it? I understand all parents put their trust into teachers/nursery works etc, but this is a whole new level

Our local soft play has specific sessions for children with additional needs. Perhaps you will have one of those locally.

YouR a brave brave women with any kind if child to go to soft play in half term.

I use to stick to toddler mornings - main play frame is empty or some do special asd sessions which are calmer, lower light

changedusername yes. My DD has just turned 11. She's 5ft 1 already

DS (8) is quite tall too, not had him measured for a wee while, this can cause problems in social situations where he doesn't know how to react / engage and those he offends think he's older so 'should know better' type attitude. Despite him having the mental age of a three year old.

Yeah mines tall my 7 year old is 4"7 ... but I am 5"8 & DH 6"4 so not entirely unexpected...

Well DH is 6ft3 and I'm 5ft9, so he was never going to be a dainty lad! But God, he is massive. He does look quite strange in buggy now, and does look too old to be on reins!

My nephew has sensory issues and global development delay (autistic traits but not autistic) Soft play used to be a disaster for him. I clearly remember my sis trying to keep him in th ball pool for babies when he was about 3 as it was the only place he would be safe. Both of them would be stressed out and on their nerves by the end of it.
Thankfully now at aged 7 they manage much better. He can cope better with the noise and activity but there is a playcentre near us exactly like the one you describe and we avoid it like the plague for all the reasons you outlined, even with our other 6 NT kids!

Can't find the poster who said they had the Maclaren Major Elite pram for their DC, but I'm just wondering if anyone has an the issue of having two DC's?
DS2 is only 6 months old and HATES the sling...how did you all get out and about without a double buggy??? It's not too much of an issue now, but in a few months I'll be starting teacher training so DH will be alone with the two of them. We obviously bought our Bugaboo Donkey with the view of it lasting a little while longer

I do think about the children under their autism. It's very hard. My friends do not understand how hard it is that my four year old can't talk. They complain how annoying their four year olds are that they're demanding or talk to much and it gives me the rage. With our youngest she needs open spaces as anywhere else freaks her right out. It's really hard and I know people have different problems but I do think people who don't have kids with Sen never realise how lucky they are. Most of it is staged and they'll grow out of it and go off and be independent. That might not happen with our kids with Sen.

You are the privileged one!!! You can avoid soft play !!!!!
You have an amazing little guy who is unique !!! He sees the world differently to everyone else !
I'm a mum to severely disabled DS7 who has autism, cerebral palsy, arthrogryposis, SPD, ehlers danlos, epilepsy and is fed via Mickey. Then DS9 who has HF ASD & ADHD. DD5 is NT!
Our world is different but fun.... r joy the chaos ..... but drink gin!!! 😜

Meffy my little nephew who we care for a lot, has Cerebral Atrophy is fed via mickey button, forever terrified he's going to catch his peg when he's going down the slide on his tummy! 😩

Msqueen yes, I definitely feel that way too. I'd quite enjoy if DS has a tantrum because he wanted a toy, rather than a meltdown because the shop had music playing too loudly for him to cope with

Bloody hell, sounds an awful experience! Glad you can sort of laugh about it but sad that it's just an everyday occurrence for you.

My dd is 11, she is being assessed (I've been hounding the GP since she was 4 for an assessment). She isn't a bolter and she's very bright and articulate but she doesn't sleep. Every night she's in my room at 1am saying she can't sleep. We have tried everything going over the last 11 years, I am so sleep deprived that I'm used to it. We have lavender drops, lavender bath bombs, lavender balm for her pulse points. We have tried making a den, leaving curtains open, closing them, nightlights, no light nights, reading before bed, not reading before bed. It is just draining. And the last time I saw a GP about her (when she was 9) he suggested I try and get her into a routine. FFS I felt like smacking him one! My 18 year old was never like this, there is very clearly an issue.

And the meltdowns are epic. Over such minor things and just exhausting. We had 90 minutes of tears and screaming yesterday because I bought her a new water bottle because we can't find her old one. Utterly distraught and I'm still not entirely sure why.

You have my sympathies.

msqueen My dd is the same, much happier on the beach or in a field than in an enclosed place with too much noise and people. Guaranteed she will have a meltdown but will find a reason to justify it, such as someone is annoying her or someone pushed her. I don't think she understands why she can't cope yet and I now try and just use avoidance of places like this because the alternative is too much like hard work.

YANBU, it must be so awful. Well done for even braving it, though!

I have never and will never go to a soft play (and I've got three very spaced out NT children so have had plenty of opportunity. They're now 14, 9 and nearly 3. Those places just look like hell.

Dixi I don't think my DS would even fit in a Phil and Ted anymore, he's very tall. So his head is way about the seat in our bugaboo, and that's meant for the same age range as the Phil and Ted