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How do you cope?!

(9 Posts)
beyondreasoning Fri 01-Dec-17 14:49:10

Hi everyone,
I need some advise from parents who experience this in their everyday life.

I have a 3 year old DS who will be getting diagnosed with autism at some point, we are just awaiting the proper channels to be completed. It's already been determined that he has autism by a senco unofficially.

How do you cope with your autistic child on a day to day basis? I am completely struggling with his behaviour, and don't know how to improve things.

The melt downs are difficult, and there is zero reasoning with him. He can't follow my simple instructions, and irritates his baby brother and the dog constantly all day long. He cries a lot, and sometimes there is no reason behind the crying.

I have tension headaches all day everyday, and I'm so extremely tired I'm surprised I'm still functioning on a daily basis. I don't want to be this constantly stressed moody cow of a mother. I'm all touched out, and sometimes I don't even have the time to use the toilet. I deal with both kids up until my head hits the pillow at night. I only manage to shower by putting DS in front of the tv and bringing the baby in with me!

I have background of working with children, prior to becoming a SAHM, and have worked with children with additional needs. I know what he needs, and what to do to help him, but I'm struggling with doing it alone 24/7 as well as looking after a baby (DH works long hours, and I don't get much support when he's home). Single parents manage to do it though, so why can't I?

DS was our miracle baby, and he was wanted so badly. I completely adore him, and in no way regret or resent him for how he is. I just need to know how you do it, what are the secrets. Will I get additional help when he receives his diagnosis? I feel like such an awful mum for even writing this post, and struggling to parent him just because of his additional needs.

Also we do have a routine, and it helps. I'm sure things would be 100% worse without it. Also we have visual aids and a visual calendar, which are hugely beneficial.

I get them out the house daily, and maybe have 1-2 rest days at home doing crafts or general playing. He starts preschool next month, and I'm concerned he won't be able to cope and il have to pull him out.

Please share your tips, any advice and maybe some virtual love. Caffeine isn't even helping today, and I'm not much of a drinker wine.

Thanks in advance all thanks

Ps sorry for the complaining, such a whinge blush

livpotter Fri 01-Dec-17 20:33:36

Please try not to be so hard on yourself. It sounds like you are already trying to do a lot for him (pretty much on your own) and it's challenging looking after children with autism. Like you say, although you've had experience in the past it's a whole different thing doing it 24/7.

My ds is 4 now just been diagnosed but we've know since he was about 2.5. Tbh there is not much more on offer since the diagnosis. You shouldn't need a diagnosis to get access to Salt, courses or the other support in your area. Having said that there is not a huge amount on offer anyway.

Have you looked at any information about sensory problems? That can be a huge help in understanding why autistic children react the way they do (ie why he appears to be crying for no reason) We had one called 'raising a sensory smart child' which was good. The books that have helped me the most have been the Naoki higashida books (the reason I jump and fall down seven times get up eight) they really helped me look at autism from a different perspective.

Do you get dla and have you thought about applying for an EHCP before him starting pre-school? In any case it's probably good to speak to them before he starts to see what they can put in place for him.

We still have bad days but I would say that now my ds is 4 he is starting to understand more and we have more of a connection and level of trust, which allows us to help him more than we could before. Sorry that went on longer than expected. Basically be kind to yourself! thanks

GreyBird84 Fri 01-Dec-17 23:57:49

God j could have written that OP right down to baby brother.

I feel a shit Mum. I can’t leave house with the 2 by myself because of his unpredictable behaviour. I’m for docs this week I genuinely feel on verge of breakdown. It’s the non verbal that gets to me, trying to pre-empt & guess everything. It feels impossible.

GreyBird84 Sat 02-Dec-17 00:00:44

So no advice but you are not alone.
DS goes to pre school 1 hr a day until he has a 1-1 as they cannot manage him any longer than that.
It’s hard really really hard & the only time he is remotely peaceful is with iPad but when took off him it’s the mother of all meltdowns. I would love to read to him, do crafts with him but all he wants to do is run & stim. I can’t get him to sit to do anything.

beyondreasoning Sat 02-Dec-17 19:32:21

Livpotter thank you for your reply, I really appreciate all the information you have given me and I really will look into all of it.** A lot of his problems are sensory related and I feel I need to learn how to help him and learn how he processes things.** It's tricky and I'm sure I have a long road ahead of me, but I'm hoping I can learn how to be the parent he needs me to be.** I haven't applied for DLA or EHCP, I didn't know I could until he was officially diagnosed (that's another thing to look into - thank you).** I am feeling very hopeful after reading your post!

Greybird84 I'm so pleased to hear I'm not alone feeling like this, but I'm so sorry you are feeling the same.** It's hard work, and I really hope things improve for you.** I need to find the time to do some research into all of this (finding the time - as if grin), but if I find anything that works well for us I will be sure to post back.**

beyondreasoning Sat 02-Dec-17 19:32:44

No idea what happened with the bold font there confused

livpotter Sun 03-Dec-17 07:55:33

Hi OP, I'm glad my message was helpful. I'm not that far ahead of you and I remember 3 being really hard (we have a younger dd and a dog too).
You don't need a diagnosis for either. DLA just needs you to prove that your child's needs are different from or additional to a non special needs child of the same age. The legal bar for an EHCP is that your child may have SEN and may need to be assessed for a plan. Although having said that I think it's probably a case of the LA not assessing until your ds is in pre school and they can prove that his needs cannot be met by the nursery. I would definitely try and speak to the SENCO before he starts though.

Sensory was/is a huge thing for our ds. He's been seeing a private OT for about a year now and it has made a huge difference to his happiness and his ability to cope generally. They focus on sensory integration. Very frustratingly it's very hard to get OT on the NHS and if you do they don't tend to do sensory integration. I think most LAs do a sensory course (I'm going on one next week) so might be worth checking if they do one in your area. I hope you're having a better day today!

zzzzz Mon 04-Dec-17 10:27:39

Crying is always for a reason.

You will get a rest and see progress whenhe is happy. Find what he likes vest and fill his days with those things. Autistic children are much more like normal children than people assume. They communicate their emotions differently sometimes and are harder to understand if you don’t have similar stimulus to them, but otherwise just like any little person. Happy first, then learning.

Allthewaves Sat 09-Dec-17 22:08:44

I completely understand your preschool fear ds was utterly awful tbh. He could.have done with 1:1 but it was all a mess. In hindsight I should have moved him to a smaller setting as his daycare coped very well with him as they adapted to his needs which the preschool couldn't do.

I remember having to take baby everywhere I went as it wasn't safe to leave him near ds2. It's draining. And yes we used to do tv for 2 hours after lunch where tbh we all usually had a nap

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