What does your weekend look like with a child with SN?

[PictPost]

Another weekend stuck mostly in the house because we just don't have the energy or enthusiasm to take DS out.

He's 7 with ASD and severe learning disability. Going out means packing pads, drinks and all food and accepting pushing DS around in pushchair as he either refuses to walk or runs off so no-one gets anywhere in any normal time. We have a limited number of activities that the whole family enjoys, everything else feels like groundhog day to do the activities that DS enjoys. I'd just like to throw everyone in the car and go out for lunch but DS won't sit still, draws lots of stares due to his noise and i still have to feed him so it's not the relaxed fun affair I dream of it being.

We are continually trying to strike the balance of trying to make life enjoyable for everyone in the household but just feel so restricted a lot of the time. We know it makes sense to just get out and do something but the faff of packing bags, and working out how to keep DS as happy as possible is just relentless and soul destroying.

I'm clearly having a pity party here and know I've just got to push on through but does anyone else feel the same? Anyone got any sneaky coping strategies I can steal?

How many parents, any grandparents around, how many other children? You may need to divide and conquer.

Our average weekend consists of grabbing an hour to do the weekly shop whilst our son is at a disability club; and then spending the time either in the house or back garden, where our son has a swing and a spinning seat. It's rare for us to go out, as you say, it's like mounting an expedition. Only difference for us is that there are no expectations as we have no other children.

We're all entitled to a pity party occasionally, I had one on Friday night It's hard raising SN children.

Sounds pretty much the same as ours EggysMom, no real family support, the occasional overnight when we hit a wall and the grandparents will step in but they've made it clear childcare is an emergency only - that's another thread.

Think I'm having the pity party because access to disability clubs is currently quite restricted - trying to find some more but tough to secure enough sessions at the good ones and I couldn't leave DS at the bad ones.

Think it's hit today as we have an NT 2 year old as well and just see the impact on him sometimes and feel sad that SN has such an impact on him too. All around me everyone is booking their summer holiday and we (have DH too) don't quite know what kind of holiday we could even manage.

Boring! Hence why I am mumsnetting! ds2 doesn't like going out. dh is too tired to go out. And the one I can usually tempt out is meant to be revising.

All around me everyone is booking their summer holiday and we (have DH too) don't quite know what kind of holiday we could even manage.

We go to Haven, off again in five weeks. We generally either go to a Butlins, a Haven, or book a cottage independently - all in the UK. It means we can load the car with all the crap that is required for our son to have a good holiday.

Have you seen the Harriet Davis Trust (harriet-davis-trust.org.uk/)? We booked their ASD-friendly house, Caerwen, a couple of years ago. It was brilliant as it's so well designed with lockable doors, lockable kitchen, softplay room. And it's a good location for the south Wales coast. Maybe something to consider for next year (they open for bookings in late autumn).

Thanks again EggysMom. Think trying a holiday camp would be a good idea. Am trying to see if can trial a SN travel bed as at least will know DS is safe when he wakes. Problem we've had so far is making sure wherever we go can be made safe for DS otherwise I spend my whole time worrying he's going to hurt himself.

Will look at Harriet's, don't want to keep hiding from life for fear of DS needs making it too hard work

Problem we've had so far is making sure wherever we go can be made safe for DS otherwise I spend my whole time worrying he's going to hurt himself.

Please don't wrap him in cotton wool, little boys will get bumps and scrapes occasionally. Our son sports two scars on his forehead - one from bouncing on a bed in a caravan and hitting the overhead cupboard; and one from running, slipping and hitting the edge of a cabinet at school (that one needed stitches).

I don't feel we ever did "normal" family things together all five of us. In fact I think Dh got too stuck on the idea that we should, whereas I felt we were better dividing up. He used to take ds2 out for special things that ds2 liked, trains, mechanical things, airports, playground. Ds2 had ASD and toileting issues, and also would run off or sometimes melt down, but did not have severe learning disabilities. We still found it impossible to do fun things all of us together , it felt like an utter slog. In the end we got into a bit of Saturday rythmn of extra curricular stuff, ds2 would do a football club (dh took him)and in the afternoon swimming lessons with dd (his twin) and ds1 (they were all at different stages) I took all three. Dd did ballet class, and ds1 did choir. All quite local. we stopped going to the park or out to lunch. By the time they were older, we dropped most of the clubs, and ds2 was now obsessed with football so every Saturday afternoon he would attend a stadium match with dh (spectators) and the others did something different. On Sunday we would go out to lunch a nearby pub after church (which dh did not attend) and have exactly the same food every time (kids) possibly a little visit to park but it was a bit fraught.

So no sightseeing or museums or trips really, we didn't drive. I drove but only a short distance, not on any fast roads, and tbh ti was too stressful dealing with kids in the car.

I think people overestimate what other people do at the weekend...

We never ever went on a holiday to a hotel. Impossible. Even self catering felt like too much work. we would visit family with lots of open space around to run around in. they didn't help us much but at least it was anice place to do the outdoor "thing" and a slightly more relaxed way to socialise. Now at 17, ds2 has two hotel holidays under his belt and it has been very very successful. Holidays that before we would have found a nightmare, with food issues, soiling, screaming eetc. Now he is brilliant on holiday and very enthusiastic about travel and new experiences. having been terrified of plane travel at one point too.

Looking back I think ds2 would have loved a caravan, unfortunately we couldn't drive to a suitable place, and dh hates caravans. But there were some options which would have been great, but for individual reasons partly to due with family commitments we never explored.

Ds2 also got a lot out of seaside holidays, we went to a cottage in Broadstairs, he screamed a lot about all sorts of things (needing his favourite telly programme for example) but in the sea he was like a different child. It was amazing watching him enjoying the waves. At 15 he suddenly went off sand though.. There are always a lot of sensory challenges in a new place, some fantastically successful, some that you don't expect, don't suit at all..in ds2's case he took against the feeling of sand underfoot...as he became a teenager.

Thanks nettle, sounds like you really managed to make it work.

I think my pity party has been a lot about not being able to just get a proper break from the old routine and a big dose of jealousy about how easy others have it. I know grass is always greener and all that, and appreciate an incredibly lucky in many ways and we have a good life, just gets me down sometimes.

Eggy really don't want to molly coddle him but he's had some nasty nasty accidents due to his clumsiness, and we've had to accept he needs some safety measures in whatever room he sleeps in.

Refused to go to cinema /park/ barbers today, just wants to be at home (PS4!). So another weekend stuck at home

I occasionally try and plan things, unfortunately they rarely pan out! I have a younger child too and they miss out an awful lot which I feel terrible about, but I can't drag ds out of the house by his ears so I'm stuck. His anxiety is crippling for him, he loves the idea of things sometimes, such as going to the cinema, but in reality it rarely happens. The last time we went to the cinema I had to drag him out 5 minutes in because it was too much and then people started staring so he threw his popcorn at them 🙈

Ds2 started to like the only cinema when he was about 8 or 9. He preferred live entertainment or going to interesting places. Which you can obviously adapt to suit, in a way that you cannot with cinema, where you have to sit still and be bombarded. I think we just assume that cinema is the most enjoyable easiest thing for a child, when in fact it is quite a sophisticated thing to engage with. Unlike television, where you can watch the same thing again and again and it really is aimed at children (most of the time)

Pantomimes however he found much more fun early on.

Can I suggest to those who find anxiety about transitions stops their child leaving the house to think about it step by step, first getting your child to leave the house in the first place - practice that...come in again after ten minutes (post a letter or look at something down the road) but come straight home. Then the next stage is making the car journey if you are going by car an enjoyable experience, maybe just go for a drive and come home. And then you tack on a extra thing where you get out of the car for a short while, doing the same thing every time (like visit the same place (an interesting place, or playground)

Familiarity with the transitions make such a difference. For ds2 walking to the tube was the most familiar thing in the world, and taking the tube became second nature to him. The next step (the actual outing) could be different but that first transition was no problem for him because he liked tube trains, But he was incredibly impatient once we reached the destination place, and that was where patience from us kicked in, because you had to know exactly how long he would put up with a visit before he wanted to go to the cafe or go home again. And plan that mentally...

I feel the same at the minute. :-(

Have to say, it wasn’t easy, but DD (7 at the time) loved Center Parcs.

Our autistic son has no learning disability and we can take him out for meals, but we still do find weekends hard. We are just too tired.

Like Nettleskeins we rely on a routine of classes to get everyone out of the house, then we don't beat ourselves up if we don't manage much else. It's not very interesting. It's taken until DS was 9 to find the right fit - not autism specialist clubs but small local classes with good teachers. We also follow a local sports team and go to their matches which are quite chilled and accepting, and DS can run around at the back if he wants.

I really miss being able to take DC to Kids AM cinema for an easy Sunday morning. Dimensions autism friendly screenings do mean we can very occasionally take DS. Last time we tried a new cinema (it was a Cineworld) and they played the ads at full volume and brightness which completely freaked DS out, so next time we will stick to Odeon. We first went to autism friendly before DS was diagnosed and really felt he'd found his people. It's never been busy.

Theatre's also a bit much for him but if anyone's looking for a theatre show for kids who don't do theatre, we liked The Bubble Man

I think Centerparcs is a good shout. The restaurants there tend to be very family friendly. It costs a fortune in school hols though, it's completely out of reach for us these days.

I appreciate others have much tougher challenges though - this thread is a good reminder for me of how many options we do have.

I could be you op. DS2 is ASD, Epilepsy & Severe Learning Disability. At almost 5 all we can access is asd friendly soft play sessions which honestly remind me of the hunger games. He is usually the worst behaved noisiest one there.

I feel sick with worry all the time - even in the house. I’m his full time carer & we are starting daycare with DS2 (2yr) so he has interaction with neurotypical children.

It’s a complete shite existence.

Would never attempt a plane holiday with him. Have a bungalow booked in a nearby coastal area with a secure garden for a week in the summer which is all I can gather up the courage for - and I’m still panicking!

@PictPost..Bit late posting this but im in the same situation. My dd6 has ASD and places to go is limited due to her hyperacusis and screaming top note in busy places..so people stare, tut and all that nonsense! Im learning to deal with it and politely smile..its getting easier. My dd6 loves going for drives in the country but my ds9 is travel sick so its difficult...but today wev had a slight breakthrough as i have found a private swimming pool not too far from where we live...who hires their pool to families! As its half term..the idea of going to a public pool is hideous and no way would my dd cope. Maybe you could have a mooch and see if their is anything similar in your area. HTH x

Hello im reading this with interest i have a nearly 2 and half daughter who has undiagnosed autism and not really aware if her surroundings so i always had big plans of going all different places once I had children and now im at loose and feel really sad about it and it's kinda kept us just staying at home and not going out which isnt really fair we also have a 13 week old so prob need to not be so hard on myself, just sad about it, really hope this sadness passes

We r staying at home because we could spend a load of money getting in somewhere , where ever we go and she will have no real idea we r there or appreciate it , im hoping with 2nd grows up she might want to go out to places but that wont be for while

Going some places is too hard and not enjoyable. We tend to try achievable things only. Two autistic children one of whom is hypermobile,the other ran off. It was easy when little as changing happened in car and we used that as a base. It is easier again now but ex has had to walk three miles home following autistic child who ran off and refused to get in the car.

This weekend was not exciting. I'm sure other people have more exciting, active weekends!

Saturday morning - watching television, waiting for supermarket delivery.
Saturday afternoon - he went to a disability club (and we breathed out)
Sunday morning - I took him to Sainsburys, mainly because it's our nearest supermarket with a lecky/goto seated trolley. He still shouted.
Sunday afternoon - he's played in the garden, in the drizzle.

My son is 15 and Autistic. We rarely leave the house. He is too exhausted after a week of socialising in school. He spends the majority of his time in his room. Same as during the week!

Holidays are the same! I can usually encourage him to leave the hotel room for an hour to eat!

Family gatherings he doesn’t want to go, if I can persuade him, he just goes into a different room, away from everyone, complains about going home, every 10 minutes!

Pretty boring and lonely for me.

Ds2 went to a university open day last Friday, which involved a 2 hour train journey. Again, I am astonished at his ability to cope with new situations and large crowds. He, like your son Claw, never really liked family gatherings unless they were entirely predictable, same place, same people, same formula. We had a lot of perserveration about the train (first class second class, table seat, which carriage etc) and the train times which I think is how he now enjoys these events. We used to have a standing joke that he much preferred the train journey to the actual place we were visiting. (ie Bath at 14 got a cursory glance, after an hour he wanted to go back on the train to London again)

But it has made a very solid base for him venturing out. I think if you can find just one thing he really likes to do, which is outside the home and doesn't have as many negative associations noise, crowds, randomness, it can be beginning of getting them out.

I want to remind everyone to make sure your child has enough Vitamin D; if they don't go out much they may be deficient, and that affects your anxiety levels, your energy levels, your immune system, as well as your bones. In fact bone health is the last thing to be affected when your vitamin D is too low. I supplement Ds2 and I try and make him go in the sunshine a lot without suncream. And I supplement myself too!!!!

Oh yes Vit D, my son has been deficient! He has had prescribed Vit d, currently taking over the counter now. Regular blood tests.

He has photophobia too, hates the outdoors, gets hot very quickly and will not expose his skin ie long sleeves and trousers regardless of the weather!

Family gatherings, just to get him to agree to leave the house, he needs to know who will be there, how long we will be out, what time we are leaving etc. He will attend, but doesnt want to. He says hello to everyone, some brief socialising, then goes into another room, to be alone and usually falls asleep!

He has APD too and finds communication effortful and very tiring, trying to follow conversations, while not hearing words correctly. Piecing conversation together to try and get the gist, like a puzzle. He has prepared ‘scripts’ for every interaction, which are exhausting and build up to he has a breakdown, if he pushes himself too hard.

He tells me after a week of socialising/interaction in school, he just cannot cope with more. He needs time to unwind and recharge and he does this by being alone in his room and sleeping lots.

He does walk to the shop everyday. I give him pocket money, just to get him to leave the house!

Such a difficult balance.

We used to do that too Claw with the pocket money. Football trading cards and stickers were our motivator for quite a while. Ds1 used to go to the shop in order to buy The Guardian which had tv listings in The Guide for some reason he didn't realise the other papers also had tv listings

It makes me sad to think how many teenagers used to get out in the fresh air in order to buy the latest single (which they[I] then listened to in a darkened room], and now it s music online they don't have too..

anyway..I digress.

motivators are becoming harder to find. He is 15, going on 30!

He enjoys his walk to the corner shop, he has befriended neighbourhood cats along the way! They run to greet him and head butt his legs this motivates him. He loves animals!

Unfortunately he has extensive allergy testing next week, I’m hoping animals isn’t a trigger.

Oh yes walking to the record shop, to buy your 7 inch home to dance and sing along to ‘everybody was king foo fighting’ 😂 good memories!