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.

If it's any consolation, I once realised that my NT (then) 2 year old was having great fun climbing the netting of the play frame. On the outside of it. Up at the level of the second storey. He's like the Flash when he gets going on some mischief.

Watching Ninja Warrior UK shortly before leaving the house was a serious error!

I would like to add 'other parents' to the soft play and autism 9th circle of hell observations. My ds enjoys soft play, not a bolter, but is a jumper and likes to clamber around and isn't great at knowing which is his body space, and which is everyone else's. Other parents tell him off - my eldest son comes to get me and I go and rescue him from interfering, sanctimonious, oblivious, smug, self centred grown ups.

Eatshitandleaves - yes, that's really difficult to be 'on' all the god damn time. I wasn't a huge drinker before I had DS, when I was out, but not really in the house, but still. I cannot and will not drink when he's in bed. Not even a glass of wine, it's just too nerve wracking. Even though alcohol doesn't really effect me, the thought of being slightly off my game is terrifying.
I start teacher training in September, and it's going to be so hard being further than 5 minutes away from his nursery. They quite often call us to help if he's had a bad meltdown as they're still waiting for a new 1-1
We can't relax ever, nobody (not even nursery) have passed our safety test when it comes to taking him outside. After him bolting in a car park from my dad, my parents won't take him out and nursery just couldn't cope.
He's broken my beautiful bugaboo pram 😭 by stimming (he rocks, and he rocks hard) so we're on tender hooks waiting for it to properly snap and crossing fingers it doesn't whilst we wait for his special needs pram

YANBU - aaah takes me back to those good old times, when I could 0-60mph, from a seated/any position leaving NT parents half my age oblivious to the targeted jet of energy needed to prevent a minor to catastrophic event. Years of it, years I tell you. It does calm down eventually, for most anyway. It's actually gone the other way now that DS is 15, and I'm far less energetic than I prefer to be as I'mRecharging Again.

My favourite bolting moment - watching helplessly at the back of the Roscoff to Plymouth foot passenger queue, weighed down by bags, as DS6 sprinted ahead for the Ferry. Thankfully DS responded well to the French Immigration Officer's response and returned to my deeply embarrassed self, surrounded by 'tutters'. At least with softplay it was still early days and I was keen and fast, albeit 40.

Dreams smashed - I thought I was going to be a 'soccer mom', taxi to sporting and other interests. Lots of camping and mates. I thought I would be a feeder, making lots of good, home-cooked food. I would be a good role model, working lots whilst DS grew in independence. All just things that I was, a life lost and more that could have been but isn't. We have a different reality than that now. New dreams to make and aspirations to follow.

I wouldn't call NT parents 'privileged' because that is unfair, as if anyone would choose otherwise....but sometimes I do wish for that 'shared, normal' experience that most have as a standard first, with a choice to deviate from it. Rather than have no choice in the matter.

Are you getting a MacClaren major op?They are fabulous prams, built like tanks. My 7 year old still uses his and it has many miles of use left in it.

Plan do you ever half yearn for the child you imagined in your head? My DS is funny, beautiful, kind, wonderful and so intelligent, but sometimes I do wonder what it'd be like if he wasn't autistic. I'd love for him to hear him say he loves me, or even just ask him how he is.
I know that's quite selfish, as he's happy, and that's all that matters, he doesn't exist to fulfil my emotional needs, but I will admit that it'd be nice sometimes

MrsBobDylan that's the one we're looking at, yes! We did consider the Silver Cross Pop, as its weight limit is massive! And the added bonus of DS2 being able to use it, but I think we may as well bite the bullet and get the McLaren, it's what we'll need eventually!

Yes I do, feel everything that you describe.

planisnoplan you have just expressed what I try to and fail. A big 'what you just said' from me, you summed it all up.

But, but, but - I recognize that now, the teenage years, I don't have to deal with the shared 'normal standard experience' of my child, after years of 'normality', suddenly and recognizably, deviating. We know where we are and we is cool with it.

I hate soft play with a passion! Whenever I've been it's always one of mine that gets clobbered by someone else's kid. The last time we went someone's toddler took a runny poo in the ball pit ! Mother called over the staff to clean it up as she felt that was their job not hers. Their idea of cleaning up was shocking! Removed any contaminated balls spray cleaner used for tables and blue cloth wiped over balls and thrown back in. I honestly never ever want to go to one again!

A big dose of hope to you all G'Night Waltons Style :)

How stressful OP you sound like you're doing an amazing job and remember that people are growing in their knowledge and understanding of SN of all kinds and people don't judge or anything. Well SOME people do but we all know what they can do!

We had this.

Botany bay...... we thought we had all exits covered.........the lady on the desk hadnt mentioned they also had 5 party rooms with a fire exit each.

We'd just started to look for ds when security brought him to us, he'd got out......for those not familiar with Botany bay it has a motorway behind it and a canal in front. Thank god they'd caught him on CCTV slipping out the door. DS was 8 or so at the time, by the time we'd risked soft play again he'd outgrown the damn things.

But yes I do envy parents of nt kids at times, mainly those who could stand in a park with a brew whilst the kids played. I never had that

welllll... we just got a free party at soft play because he is autistic.

given this is AIBU and hanging around forever, then it is enough to say it was hard work getting them both there in one piece across town.

anyway, yes, parents of children without additional needs have not got a clue. nor has the stupid idiot who said I know what it is like as I have a great neice with autism... no you fucking don't as you are not living it everyday on your sodding own with no hope. you only see her at family occasions and are not dealing with it all the fucking time.

oh and the parents who say: "you ought to just... "

oh and I hate fucking professionals recomending doing stuff for dd that will not work for ds, like she lives in some sort of vacuum (and vice versa)

no we can not walk and stop at benches to rest to increase walking tolerance as the other one runs about and needs to keep moving when we are out. no I can not park the not so good walker on a bench as they get distressed if not with an adult and I can not be intwo places at once. the mobile one needs constant supervision when out as they tend to go a bit boistrous.

and the all kids are a bit.... (insert behaviour) is fucking piss-off making.

our version of french immigration was supermarket worker when I discovered what a code 6 means..

God, no. Don't do soft play. Ever. Not unless you can get in on an SN night where it is closed to everyone else and is big enough for parents (or sensible older siblings) to follow round the frame.

I think you deserve a medal and several large glasses of gin
I'd also recommend a trampoline place as soft play is the work of the devil even with NT children;whoever thought of it should be shot at dawn.

YANBU at all. I have 5 dc with various different SN. I've got one who needs constant help, one who is a bolter, one who has sensory issues, one who has a hearing impairment and another with Aspergers syndrome. It's a fairly lethal combination and there are very few activities that are suitable for all of them. But if I say no to "helpful suggestions" from people who have no clue then I'm being negative.

Totally agree with you Susan. I hate those "I know what it's like, my nephew/friend's child/whoever has SN" No you don't. And all those people who spend an hour with my children when I'm there and then try and tell me that I'm making a big fuss over nothing because they seem fine. It's very different being with someone for an hour and being their full time carer.

I dont think I'm privileged to be honest. I have an NT 11yo and an 8yo with SNs.

The amount of times we've had to leave places because of DSs meltdowns is so incredibly unfair to NT DD so I wouldn't exactly say we're privileged. The worst one I remember is the art gallery we went to, I still feel guilty about the time i took DD to an Art Gallery (she loves art). DS had already been there on a trip with school no problem, so he'd be fine, right? Literally all it took in that gallery was five minutes amongst the bright colours to set off his sensory overload and DS was unreachable and we had to leave we still got a lovely walk around the lake and saw the show outside but it's not the same as looking at all the cool stuff is it?

You do have my sympathies though. DS becomes an absolute nightmare when entering anything we hadn't expected / planned for (hence the art gallery disaster) Soft play is hell on earth I always try and avoid that place like the plague.

EatsShitandLeaves yes I agree. That's how I always describe DS. It's like looking after an overgrown toddler, constantly with no let up.

Away - of course you're not privileged! You still have all the worries a SEN parent has, as well as the worries about how being a SEN parent affects your other child. That's one of our huge worries too. Already DS1 gets more of our attention that DS2, because DS2 is just so chilled