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Original poster

How do you guys cope with the day to dayness...

25 replies

Heytheredelilah1987 · 20/12/2016 13:59

... sorry to be negative, but I feel I need to vent somewhere about how I'm honestly feeling or else I may go a little mad! Grin

So I'm just back from a walk... just a simple walk around the woods and back and good Lord I could weep. It's just So Bloody Hard to do something so simple. Indoors all my dc do is fight (after a while stuck in, understandably) so we go out and it's just such monumental effort. My son is 2 this month and is undergoing diagnosis for ASD (just a formality as far as I'm concerned as we know he has it - as do all our family) he just won't walk , he has meltdown after meltdown and he is basically just so difficult to deal with when out and about. It's not his fault and I am super patient with my kids (I'm told) but I still feel it's such a struggle just everyday trying to do everyday things. I know in time it will pass and I love my son I wouldn't change him, but I find it hard to sometimes just get on with this day to day stuff. It's the little things that I find hard - for example a walk being such a monumental struggle. I can't help feel annoyed- not at my son , but just at the situation. My daughter is 3 and is nt - she's quite a diva herself TBH so this doesn't help haha! Wink

I guess I just wanted to vent in a safe place to others who may appreciate what I'm talking about. Sometimes I just feel I could go mad over the little everyday things ! The big things I seem to handle fairly well - appointments etc etc ... sorry for the moan.

OP posts:
bialystockandbloom · 20/12/2016 14:09

You're not alone Flowers It is often the fact that every day is just hard, and its relentless and repetitive.

My ds with ASD is much older now (nearly 10) but things that helped:

Getting away for time alone or with friends - essential!
Making sure dh and family are on board with consistency of approach (eg if one says no to something the other backs it up)
Finding what makes ds really tick and using that to have fun
Finding whatever helps to help ds where he struggles most - communicating, interacting, playing etc - and using that to have fun with him, and as a reward
Working out any trigger points and planning how to deal with them in advance

We started ABA when ds was 3yo - it was this really that transformed his life and ours at that stage. I know it's not for everyone on this board and it can be expensive but for us it was amazing, ds was 1000x happier as we learnt how to help him communicated and interact do his behaviour improved, we were all happier, and we could start enjoying 'normal' things as we felt we knew what to do. If you want more info let me know.

It's tough though, I know - and this is a good place to vent among others who get it Smile

PolterGooseFat · 20/12/2016 15:00

This reply has been deleted

Message withdrawn at poster's request.

flapjackfairy · 20/12/2016 16:48

I think the biggest sanity saver is acceptance.
I gave up on any expectations and thinking of how life should be and just accepted this was how it was ! I found that helped me relax and just go with the difficult things that derailed daily life.
My son is an adult now and things are so much easier but i remember it so well!
Big hugs to all coping with it!

Branleuse · 20/12/2016 17:13

its just so hard to do things. I hear you x

Ineedmorepatience · 20/12/2016 17:22

I created a list of local play areas with gates that could be supervised! We used to go really early in the morning. We went into the woods to streams and other empty places.

Dd3 used a large 3 wheeler all terain buggy until she was 4.5 and when she wasnt in there she was always on reigns because she had no concept of danger and used to run away!

Original poster
Heytheredelilah1987 · 21/12/2016 06:38

Biala - I've heard of this ABA , do tell a more ! :) Thank you, please!

Polter- oh no that must have been tough. Pretty sure my sons mobility is fine thiugh as he only starts messing about when we are walking outside...

Flapjack- that makes perfect sense actually. I need to work on my mindset and perspective and I'm sure time will help us along with that!!

Ineed- playgroups of any sort are a no go for us but we also visit streams and quiet outdoor places a lot :) My son loves water and streams. My son uses reigns too and I'm actually going to invest in a large buggy soon as he's very tall for his age- and use it more.

Thanks everyone for your support xx

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Original poster
Heytheredelilah1987 · 21/12/2016 06:39

Bran- indeed it is ! Hopefully time will help us :)

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Sirzy · 21/12/2016 06:57

I think you have to readjust your expectations to a point. Learn what the "normal" is for you now and as hard as it is try not to pine for what you expected - if that makes sense.

At nearly 2 I would stick with a buggy. Don't make life harder for yourself. I stopped the buggy with ds when he was 3. Just before he was 5 I got a SN buggy for him and it has been a godsend as it means we can get out with less problems.

Original poster
Heytheredelilah1987 · 21/12/2016 08:01

Thanks sirzy. I struggle with mum guilt a lot and feel bad sticking him in a buggy - but it's definitely the sensible thing to do for the most part as otherwise life is very difficult!

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Shesinfashion · 21/12/2016 13:13

How many children do you have? You say all your family have autism but your 3 year old is NT? Both my children were really difficult and awkward at 2. They call it the terrible twos for a reason. My NT child aged 4 was always refusing to walk and having awful tantrums. It'll get easier. The early years just have to be got through as best you can.

Fairylea · 21/12/2016 13:19

I empthaise a lot with your post. My son is 4.5 and has asd and dyspraxia and sometimes even something as simple as popping into Tesco for bread feels like attempting to climb Everest. Grin

Definitely use the buggy. If your dc has sensory issues along with their asd (very common) then it may be that their senses are becoming overloaded and they are shutting down as a way of trying to cope and this means they struggle to walk. (Dla recognise this as "virtually unable to walk" as part of their mobility criteria by the way).

We have a special tomato eio special needs buggy through Newlife charity and we can't go out without it. Ds can walk but in busy situations he will try and run off or will refuse to walk. If he has a meltdown there is no way I can carry him. The buggy has been amazing. Before that we had an out n about nipper - a larger normal buggy that was brilliant for rural walks etc.

At 2 most "normal" children would still be using a buggy, definitely don't give it up yet! Anything that makes your life easier grab it with both hands...!

Msqueen33 · 21/12/2016 14:49

My youngest is four and non verbal. She wakes okay but tends to run off and is impatient so we still have her buggy. Her six year old sister has asd and use to do this at a similar age so we left them in buggies a lot.

The day to day stuff I find hard and tiring. My youngest is hard work and often the stress reduces me to tears.

Frusso · 21/12/2016 17:54

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Message withdrawn at poster's request.

Sirzy · 21/12/2016 17:57

I also always keep a blanket available for ds so when he is in his buggy he can hide under that too. Ear defenders help him too

RocketBaba · 21/12/2016 20:37

My DD will not walk at four, logically she physically should be able to but she just doesn't walk at all outside a house. Gets out for stairs though, I think it's more about being safe.

At three I'd walk her and we'd have tears and all sorts. 60 metres and on the floor screaming at best. At 4 we use the buggy, ear defenders and I just don't think t worry about looks we get because we can actually have a lovely trip out together. I tend to roll with it and don't worry about age related expectations much anymore and we are happier.

Msqueen33 · 21/12/2016 21:18

I think like a lot of people have said the sensory side of things is overwhelming especially when they're young. My dd is six and is fine now but at three went to ground numerous times.

Original poster
Heytheredelilah1987 · 21/12/2016 21:23

She's in fashion- we don't all have autism. Just my son. My daughter is 3. I understand the terrible twos are that for a reason and therfore I'm very careful about not labelling all my sons behaviours as autism related. As his mum I can tell .what's what most of the time! :)

Ms queen- so sorry you're finding it so tough too. Xx

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Original poster
Heytheredelilah1987 · 21/12/2016 21:27

Fairylea- my son definitely has sensory issues so I think you're right there. I'll be sure to use the buggy more !!

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Original poster
Heytheredelilah1987 · 21/12/2016 21:31

Rocker and sirzy- good ideas. Thanks !!

Frusso- the hypermobiloty is something I'll mention as I have noticed he says ow ow ow which could indicate pain? But he also makes that sound for various other reasons and whenever I've checked him there doesn't appear to be anything hurting him that I can see... but the more I think of it the more I need to mention that to the paediatricians... just one be sure. I'll def use a pram everytime we leave the house now. Poor lad! Hope it isn't that ; I feel awful

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Sirzy · 21/12/2016 21:36

Don't feel bad. It's so hard to try to figure what is going on for them sometimes, and the communication issues which often come with Autism make it even harder to try to figure things!

It's all a very big learning curve!

Ineedmorepatience · 21/12/2016 22:19

Be kind to yourself! You came to the best place to ask and you got great advice.

You cannot know everything, having kids is a massive learning curve, kids with special needs even more so.

Keep coming back and good luck Flowers

Shootingstar2289 · 22/12/2016 19:19

I feel for you. My son is five and has ASD. We cannot really go out anywhere because of his behaviour in public. The problem is that he is obsessed with anything to do with buttons - parking ticket machines, ATMS, vending machines, arcade machines and even children's coin operated ride on toys. In his Autistic mind, he must think these are only in place for him to 'play' with and e refuses to come away from them. . But I live in a busy tourist area and these type of things are EVERYWHERE you go so we are very limited.

He has no sense of danger either so everything is a struggle. We went to take him for a walk around a lake the other day. Thought it would be a good place - no buttons to press but he kept trying to run off and get into the water!!

There is only one 'relaxing' place we can go to. It is a local beach that has a lady collecting parking fees in a hut rather than a machine and there isn't a lot there.

Just nipping into the local shop is a struggle with him. Hmm

Original poster
Heytheredelilah1987 · 22/12/2016 20:27

Thanks ladies. It's up and down isn't it. I know a lot of it is adjusting my perspective. I do try to sympathise as much as possible.

Shooting that sounds very tough x

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Msqueen33 · 22/12/2016 20:42

Hard to stick to the adjusting of expectations isn't it. Especially when you see all these people out and about are having fun off to pantos etc.

Original poster
Heytheredelilah1987 · 23/12/2016 06:15

Yes ms , it is hard sometimes. I'm hoping with time acceptance will help with that. I guess it's just getting used to it , isn't it?

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