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?

The Amber's Handy Guide to Going Shopping might be useful.

"Into the supermarket, and into a wall of noise. Announcements, fridges whirring, people chattering, tills beeping. The smells hit me as well - bakery, fish, meat, veg, fruit, new clothing. And the sights, too: Everything is stacked high with colours, patterns, flashing lights. And there's a cleaning machine somewhere, beeping noisily. I'm rather scared of them, to be honest...Then there's the people. Loads of them. And I probably know loads of them, too, but I can't recognise who they are.

I can't go down the aisle for pasta as there's a flickering light over it, which doesn't bother other people but it's like a strobe light for me.

The checkout is a nightmare of flashing lights, beeping, noise from the conveyor, jostling...

I get to the exit, and the alarm goes off. Someone please just put me out of my misery right now... I've had enough. I want to go home I'm shaking now. I need to go home. It takes me a long time to recover from shopping if something unexpected happens.

Apparently some people like shopping. I'm amazed. Next time I see a toddler screaming in the aisles, I'm tempted to join in"

That's how stores are for someone with an ASD. We try so hard not to panic.

What helps: Something thick/heavy to wear if we can stand the heat. Timing it for a quiet bit. Checking those aisles for crowds or flickering lights. Keeping conversation quiet. Avoid eye contact with us if you can. Let us take a favourite something to focus on.

You're doing fine. I'm so sorry we're a nightmare in shops etc - but the shops are such a nightmare for us, and we can't often say

It will get better, really it will. Hang on in there.

Ooh ((( Big Hug ))), go easy on yourself please.

It's a kind of battle fatigue that hits just about every mum but it hits so much harder when your child is SN. Was actually laughing with an old playgroup friend the other day about how many of us burst into tears when our DC reached about 2.6. (So you're late!)

Like running a marathon but when you can actually see the finish line it seems so far away and you're not sure you can keep going another step.

I sure as hell was the same but it really did get, gradually, easier once the school nursery system started.

So...{pats a cushion on the chair next to me and passes the wine} we know how you feel and promise it'll get easier in time you just need to (sit here) and wait.

Forgot to say how much money I saved by my DS refusing to go into clothes shops because the music was so much louder.

PS had to battle with all my might to get son to go into a store - I do know how it feels first hand as a mum too

the pre-dx time is probably the toughest - as you feel you have one foot in both camps, and feet placed firmly in neither. Btw don't feel pressured to give up the buggy until you and DD are ready, if things tend to go better in the buggy with shops etc .

((((((big hug)))))

Just really wanted to echo what everyone else has said.

Hang in there, the dx will probably be a relief when it comes.

I sympathise greatly. When my ds was your dd's age, I too wanted to escape the daily stresses and problems. It was a struggle and I would not return to those days for a million pounds.

My ds started pre-school and nursery when he turned 3yrs old and I have to say, this helped so, so much. Professionals got involved and although nothing fundamentally changed with regards to my ds's development (he has SLD, is non-verbal, doubly incontinent, etc), the time he spent in nursery was my lifeline because at that time, SS were not a bit interested in providing any respite care (that took another 2yrs to achieve).

Is there any way that your dd's start date for pre-school can be brought forward? September seems a long way off if you're in need of some help and a break. An earlier start date may help your dd too - kids can start at 2yrs 9mths, so it may be worth checking?

All I can say is take each day as it comes, however tough, and take any offers of help that come your way. Also know that things will improve when nursery/school comes around.

"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."

Hmm, I know you meant to talk about this just as an example - but is there any reason why she shouldn't go in the buggy?
I do NOT see all the other children of that age walking nicely holding mummy or daddy's hand. The most pliant 50%, perhaps.

Am I going anywhere with this or have I misunderstood ?

Hey - hang on in there. I really remember that feeling myself. Feel free to send me a message offline. Where about do you live - you may have a support group nearby.

I never thought ds would walk nicely beside me. Never. Now at just past 4 he does. Hardly ever runs off. Your dd will calm down with time. In the meantime is internet shopping an option? I found it took a big stress out of our lives.
But just wanted to empathise about not wanting life to be a struggle all the time. The good moments have increased as ds has aged and matured. But I can well remember just not having the fight anymore and just craving a bit of ease, not a constant struggle. Just simply not thinking I could cope with the stress of it all.
Are their activities where she is easier to manage? e.g ds like swimming, running in the park. Could you focus on those for a while to get you through this difficult patch. Even if you have to do them over and over again.
Don't feel I've been much help, but at the beginning of my journey a professional told me that ages 2-5 are worst behaviour wise for ASD children, so try and hang in there and it will get easier

hi, OP is making me cry!
my ds is same age and we dont have dx yet, and i feel the same way you do about taking him out without buggy. my ds1 was walking everywhere at same age (though now i realise why the difference!). but i also have a 10 month baby and so its a long double buggy i use, and with a giant (relatively speaking) baby and toddler in it, it weighs a bloody ton. especially on the home with shopping in it (and going uphill). i actually can only manage round the corner to the nursery now with it, and i feel bad cos they dont get out more.

the last time i tried him without it in the supermarket (which is not too big as i live in a small town) i had him on the reins, but he took a flaky and i haven't tried it again since (and i feel bad cos i feel i should be trying). writing this has made me determined to try again, and i will give him an empty basket to carry in the hope that that will help.

and then theres the whole thing when he's in the front of the buggy at the checkout and people are saying hello to him and he doesnt even look at them and they say "oh, he's shy today" or "he's not talking today" (he's never talked...) and i haven't figured out what to say yet.! the truth i suppose . i'm just getting round to telling people i know, strangers are next i suppose.

meggymoosmum, am sorry for rambling too. feel so bad for you. am sending a big hug and i hope if you get a sleep tonight then you will feel a bit better tomorrow.

as lena martell said, "one day at a time"

I was a terrible runner as a child. My mum had to keep me on reins until I was past 4 and she was known throughout the neighbourhood as "poor Mrs X" because I was so much hard work.
It will get easier.

nikos, am reassured by your post.

recently i had my ds at our local botanic gardens and we were in the walled garden and he kept running in a straight line right along the path and out the gate.
my dh got him back a couple of times and then i took a turn.
he didnt want to be lifted and he had his arms pinned to his sides and was going all floppy (and he's a big, strong boy). eventually i managed to lift him and suddenly had a flash in my head of trying to do the same thing when he is 12!! not good.

however, i hope things will improve with time.

Thank you everyone for your replies

Tclanger - We do go to the local sensory group which she enjoys, i must make the effort to find more, thank you

Amber - Thanks for your tips. I have starting reading as much as i can to try and understand how things work in her mind, i've just finished 'Daniel Isn't Talking' which i enjoyed. Its so hard though in the heat of the moment and i have to admit my initial reaction is still to get het up and cross

TallulahToo - I fell far short of 2.6 even, but usually make it to the loos before breaking down

TotalChaos - I completely agree. We feel in no mans land without a dx

MannyMoeAndJack - I will look into whether she could start early, i had no idea they could start at 2yrs 9m

lingle - No real reason why she shouldn't go in the buggy i guess. Getting her in there is a task in itself but i am becoming better at blackmail by the day. I guess the buggy example just highlights me trying to cling onto 'normality', and like apollo i feel guilty for not 'trying' to crack it

Nikos - Internet shopping is a definite option. I do like to try and get us out of the house though, and take a mooch every week with my mum. Mainly because i {used to } enjoy it

apollo - Don't cry, please I too use reins - they stop her from running into the path of danger, but in turn give her another thing to have a tantrum about as she (understandably) dislikes the feeling of being restrained. Big hugs back xx

Thanks you as well to SixSpot, 5inthebed, mumslife and Bricks I do talk to hubby about what has happened during our day, he of course is symapthetic and caring, and allows me to cry on his shoulder. I don't feel he truly understands though

I am feeling calmer but exhasted. I think sleep is in order (never got the wine, sob) and i hope i have the energy to start afresh in the morning.

Hugs to all xXx

Thanks bullet123

Agree with everyone. Just wanted to add that DS2 is still in a buggy most of the time and he's 4.9. And really I don't care anymore what people think. Its just impossible for me to presume that he will walk nicely (sometimes does, sometimes doesn't) and I think he feels safe in buggy.

Just go with it and save your energy for other stuff. Its so hard isn't it. But I do find it a lot easier when I just accept that he will not do things easily like other kids, so I have to make allowances.

your post really takes me back. it's such a draining, difficult time. ds has just started nursery and things have really started to improve. i started using the buggy all the time when i was pregnant again and now we choose our times to go without the buggy very carefully (if there will be two of us etc etc)

i've had people making comments that he should be walking and it makes me sad as he used to walk (run!) everywhere, with me hot on his heels, but it's just not possible anymore with dd to look after too.

good luck.

Arguably the problem with the reins is that the pressure is very variable. Same reason we often pull away from being hugged - there isn't an even pressure on us.

It might be worth trying one of those weighted vests you can get for children with autism, and putting the reins over the top of that, or over the top of a very thick coat. If the pressure's evened out a bit, I wonder if it would help?

(DS made a habit of running out in front of traffic/running away from me at top speed at any opportunity he could so we had to be SO careful about keeping him under control. Car seats, buggies, shopping trolleys, reins..he hated it all. And being carried, too).

How are things today Meggy?

Thanks nikos I am feeling OK this morning. Opened my eyes and really didn't want to get out of bed and start all over again. But needs must and we don't have a choice do we! This morning has been calm and quiet, there has been no pressure to be anywhere so we have chilled out and done things at her pace. She's now bathed and dressed and soon we'll have a bite to eat before going to sensory group.

She hates (with a passion) being in the buggy, but i am starting to accept that its something i need to carry on using, for my sanity more than anything else. Chocolate at the ready!

Sorry about my moan yesterday everyone The little bit of energy i did have left just dissapeared and i just felt desperate and alone. Being a SN mum still feels so new to me and i haven't found my feet yet. I am inspired by each and every one of you.

xXx

Glad you are feeling better today.

Shopping is a night-mare, luckily dd1 went back to school today so i only had one (ASD) child to take shopping. I never take both of them on my own as i hate it when people stair and think my dd's are naughty, both my dd's have ASD, we havn't got a DX for dd2 yet, she's 2.10 and in my heart i know she has ASD.

Today i had to go to the GP and take dd2 with me, dd2 in non-verbal but has started to make noises and babble, we got some weird looks from people in the waiting room, dd2 looks more like a 4 year old so people probably thought 'why is that 4 year old screeching and babbling'. Once we got in to see the GP dd2 decided she would scream and cry loud enough for the GP not to hear me (a few months ago i would have broke down and cried with her), then i had to wait for my tablets in reception where dd continued to scream, i left her in a chair crying whilst i signed for the pills and then i left (with evryone stairing at me.

I think i am getting tough, i have been known to cry in public when the dd's play up but now i am learning to cope. I sometimes feel like shouting out ' FFS stop looking at us, my child/children have Autism, they are not naughty and i am not a bad parent' but i manage to keep my mouth shut.

We all find it hard so don't apologise for moaning on here.
Have you applied for Disability Living Allowance? This might seem unconnected, but I received a letter confirming we got middle rate after the most horrendous day with ds. Somehow it made me feel that someone was acknowledging that life is very tough with an ASD child. And the money comes in handy-might even fund a couple of hours childcare so you could go shopping with your mum in peace.
Hope today has been kind to you and if not, be kind to yourself