I don't feel strong enough to be an autism mum

[meggymoosmum]

I am sorry if this is long and i babble Have just had a terrible day with DD and i really feel at the end of my tether, unsure of who to turn to who will understand.

DD is 2yr9m. We have no dx yet, but she is in the system, speech therapy is in place and we have an inclusion support worker. I know she is ASD.

We have our ups and downs. Good days and bad days. It doesn't help that i suffer from depression so at times i can magnify problems a little in my mind.

Each day i try so hard to convince myself that today will be good. DD will walk nicely. 'Lets not take the buggy'. I explain to her that she is going to walk nicely holding mummys hand. I long for her to walk with mummy and daddy like the other children do. We usually last about 5 minutes before things start to go wrong. And so, today, 5 minutes into the store and she kicks off because she can't run off. She throws herself onto the floor, landing on the beaker that is in her hand, splitting her lip. She's now throwing herself around the floor, blood pouring from her mouth, and she won't let me touch her. People are starting to look and i am unable to communicate with her, unable to comfort her, let alone control her. And today i gave up. I sat on the floor next to her and i cried.

There are good moments. Magical moments. But these are so easily erased. I don't feel i have the strength to go on She starts pre-school in september and i know deep down things will get easier once that routine is in place, but right now it just feels too hard. I really don't feel strong enough to be an autism mum. I wouldn't change her for the world but at times i wish life was easier and that i had a 'normal' little girl. Life feels unfair.

How do i get through this?

I'd love to know how you are all getting on now, 13 years later... I've had "one of those days" with my son, in fact every day seems to be "one of those days". Similar situation to what you described, he is now 2y10m, he is clearly ASD but not diagnosed yet, very little help as, for all he's in the radas of a few specialists, everything takes FOREVER. I'm worried for my son, but also, I'm starting to get worried about myself... because I can't see a way out of this "problem" "circumstance"... it just all feels never ending. I've stopped living, I've stopped going anywhere, I no longer meet with friends, I'm so exhausted and drained that o have had to sacrifice my career too. I'm wishing the years away in the hope that things will eventually get better, but what if they don't, and if they will... when!? so, how are you now? hope everything is looking up for you, might help me see light at the end of this long, dark, and never ending tunnel. x

@Stefanny stumbled across this as your post brought it up. Also hoping some previous posters may still be on mumsnet and can provide an insight. My ds is almost 4 and sometimes things feel better but others are just awful. I am struggling and he deserves better

This popped up in “threads I’m on”.

I still say”use the buggy”.

Stefany is he your first?

He is my second, my first was a very easy going child that developed "as expected". There's a big age gap (9y). I would say my son is not profoundly autistic, he can talk a little, it's more sensory stuff, problems getting him to eat, and like a delay in his development. He doesn't say mamma, just drags me to what he wants -this is improving, now sometimes uses words to ask for what he wants-, he runs away when we are out anywhere and doesn't turn back to see where we are, so some dangerous behaviours; we struggle with food, he obsesses over sweet things and for all I try to be strict and not give in to what he wants it is hard because he spends the day dragging me to cupboards and crying wanting biscuits, chocolate and snacks, to the point he will point blank refuse to eat ALL DAY. He is not interested in other children, eye contact is improving but obvs not what you would expect, attention not great, response to name very poor but improving. One of the main things I struggle with is that at almost 3 years old he doesn't have much communication/understanding (IE. can recognise every letter of the alphabet, every animal, animal sound, numbers, colours... but doesn't understand "let's go to the park"). So I can't negotiate with him... he pays no attention when he wees and stuff like that, and because there's no understanding I haven't been able to get him to even acknowledge why I am trying to sit him on the toilet, he wets himself and doesn't actually look down curious about what is happening so I'm no where near potty training him yet; I can't negotiate with him, as in "have dinner first, then pudding" so everything is a battle, sometimes getting him ready to go out to the park van be a battle because he simply doesn't get that we are taking him somewhere nice that he will enjoy... his sensory issues means, apart from the struggle to eat,, that he is obsessed with putting papery stuff in his mouth. My house is destroyed, torn wall paper in every room, books or anything he can "peel" and put in his mouth is wrecked, we have to watch him outdoors with plants as he will put leaves in his mouth too... it's just exhausting and draining. Over a year we have been waiting for "help" now, apart from the odd call, a visit from the child development team in which they only spoke to me and didn't actually see my child, we've had NOTHING. He is very clearly autistic, perhaps (hopefully) a mild case as there is some speech, and some "traits" are improving, there's no hand flapping, no major tantrums, he isn't aggressive or anything like that, he can play nice and there is some imaginative play... I have hope for him. But it's just so hard work at the moment, and the unknown of how his condition will unfold over the years as he grows scares me and worries me. The uncertainty. I love him more than words can tell but I've lost myself in this situation and would like to hope things will improve for both of us. My husband and family take it a lot more in their stride.

I’m so sorry about lack of help and angry too.

what strategies are you following?

have you got “more than words”.

also-why sit him on toilet?

Sorry, I should be more candid. I think it is much too soon to even think about potty training. I potty trained at 4.6 or so, as did my neighbour who is a consultant paediatrician. And yes my son is fine! And so is hers! But he wasn’t fine at 2.10 and needed different help.

www.amazon.co.uk/More-Than-Words-Fern-Sussman/dp/0921145411/ref=asc_df_0921145411/?tag=googshopuk-21&linkCode=df0&hvadid=526013244141&hvpos=&hvnetw=g&hvrand=4376327783923497238&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=1006553&hvtargid=pla-349700072818&psc=1

@lingle I was just naively hoping to potty train him, my daughter was potty trained age 2... there's a lot of pressure around potty training children by the time they start school, and he's due to start school based nursery in January, so I am worried and trying to do the right thing. Maybe this isn't the right thing, but I have no one to advise or guide me. Just doing my best and finding out the hard way what works and what doesnt. Glad your son is doing well x

well, if you will take some advice from a stranger, I would drop it for now.
focus all your attention on his understanding.

I would use the sweets obsession to motivate him re language.
you will need visuals - photographs of all his favourites.
please buy the book linked to above if you possibly can.

the goal isn’t to eat better but to communicate better.

if you use pictures you can hopefully give him the concept that symbols are not just for playing with (like animal noises) but can get you what you want.

empty the cupboards, hide them all, show him pictures of his favourites see if he can choose.

take pics of healthy food too : “first pasta then chocolate” would be a good goal

OP, I could have written this post myself when my son was that age. I can so relate.

Toddler years are tough anyway and ASD and communication delays add another layer of challenge.

I don't know if it helps, by my DS is now almost 9 and is a totally different child. Fun, affectionate, kind, quirky and curious.

We do have bad days, we do meltdowns. But as we've learnt to understand our son's triggers, these can be anticipated and/or managed more easily. DS can speak, read, swim, attends a mainstream school, has hobbies and one or two friends. (At 2.5 I was almost certain he would need to be in a SEND school but he's surprised us all.)

I'm not going to tell you it's all plain sailing. But the future might not be as bleak as you fear.

Find out what support is available in your area and access all of it - SEND family groups, clubs, benefits advice, resources etc. We received very little support formally from NHS or LEA but have accessed a wealth of useful guidance from other SEND services in our local area. Consider claiming DLA for your daughter to pay for equipment, therapies or activities that will help her.

Good luck x

It is hell tbh. I have two with asd and they are now older and nearly adults. I can't say it gets easier as it doesn't for everyone. It just changes and the challenges are different. It also depends on your child and how their asd impacts them. However I would say grab any support on offer. Be loud in trying to grab as much nursery or portage or whatever. Apply for dla and use it to make your life easier. Avoid difficult places like shops. Try and find someone who will babysit so you can get there on your own. I used to go in the evening as it gave me a break.