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Today I hate autism!

(19 Posts)
Msqueen33 Tue 16-Aug-16 19:43:14

I hate that my three year old cannot talk. That she goes to ground when something doesn't go her way, that she won't wear shoes, that she jumps on and off everything, that she makes squeaking and shrieking noises all the time and that she bites my fingers constantly. I've had enough. I am so fucking tired. She's so so different and not in a good way to how she use to be. She's child number two with asd. How the hell did my life become such a nightmare?

zzzzz Tue 16-Aug-16 22:04:11

You need some sleep and some no children time. Be tough and organise it for yourself.

I would imagine you could rub something on your fingers that tasted quite quite horrid.

Ineedmorepatience Tue 16-Aug-16 22:41:23

I think its easy to slip into a negative spiral when you are exhausted and fed up!

I agree with zzzzz you need some time out!

HaveYouSeenMyHat Wed 17-Aug-16 19:18:32

flowers Sending strength and support.

Sammythemummy Thu 18-Aug-16 16:55:19

It's incredibly tough

Have you thought of doing therapy with her? I hired tutors who used to work with mine, she was learning many skills through play and it gave me a good break as well.

Msqueen33 Thu 18-Aug-16 17:28:47

I haven't been sure who to hire. On the whole we can take her most places but she's so sad, miserable and withdrawn and cries ALOT. It's so hard to work out why. I put her in the car with her siblings and put her buggy away and she was screaming. She's also got an autoimmune disease which we have To manage but she seems constantly ill. Most of it I can deal with aside from the shoes as she won't wear them and nearly stepped on some glass and the misery. Can't imagine it's much fun for her.

MrsBobDylan Thu 18-Aug-16 18:40:04

I agree you need time apart - do you get any respite care? If not, now would now be a good time for a carers assesment.

Does DD have any obsessions - if so, can you get her engaged in one while you have some feet up, cup of tea/me time? Ds loves a new pack of blue tack and one of them buys me some peace and quiet!

Ineedmorepatience Fri 19-Aug-16 09:36:43

Have you tried crocs for her feet? Many children with Asd seem to take to them. Just a thought.

sickofsocalledexperts Fri 19-Aug-16 20:53:52

ABA was the thing that improved my son's and my family's life, by teaching him skills like talking and discouraging non social ways of behaving (eg aggression / self-injury). This website gives lots of info. 3 was the hardest age for sure

notgivingin789 Fri 19-Aug-16 23:00:52

It sounds like she could have sensory issues from what your describing. Do you get DLA for her? It would be work doing some private OT classes.. To work out her sensory issues and how to help her out with those and sensory diets. It seems that NHS occupational therapists ( well the ones in my borough) are not sensory trained ( forgot the right terminology) and don't really accept referrals for children who just have sensory issues but are fine in their other physical aspects... Well in my borough at least.

Msqueen33 Sat 20-Aug-16 00:04:59

We've tried crocs and it's a no go. I did put her in boots for a while as she couldn't get them off so I probably need to live through the screaming and do it again.

A lot of it seems sensory (she use to have a dummy and taking that on advice of salt has meant sleep issues, shoe issues and biting my fingers and no chewy sensory toys help).

I'm looking into a private sensory therapist which seems to be an eye watering £70 an hour! But our NHS ot doesn't do sensory either.

I'll also have a look at aba.

Fairylea Sat 20-Aug-16 08:35:36

Can I just say don't listen to the salt about the dummy. My son is 4 and has asd and still has a dummy for nighttime and if he is particularly stressed. It's the only thing that calms him down and without it he wouldn't sleep at all. I don't believe it's made any difference to his speech. We just don't tell any of the health professionals etc we still use them. Not worth the judgy comments. To my mind if something works for a special needs child go for it!

Also have you tried ear defenders? If a lot of her issues are sensory she may find them comforting. My son doesn't like anything on his head but I go to a special needs preschool group and a lot of the children love them. You can get them for about £10 on Amazon.

Also consider a bigger special needs buggy, they have larger hoods (look at special tomato ones) that are very good for children with asd as they act like a little den. Newlife charity gave us one for ds - you just need a professional to support your application.

Msqueen33 Sat 20-Aug-16 09:05:33

Thanks Fairy. She coped really well with us taking it but she loved it and actually she's more difficult now she doesn't have it. Bloody salt don't seem to have a clue and only see her once a month if that. Her current buggy has a large hood that she sometimes pulls up. Her sister has ear defenders so I'll give those a go. It's just such hard work. You'd think after already having one with asd it would be easy as id know what I was doing. Turns out I don't and I'm just more stressed.

Ineedmorepatience Sun 21-Aug-16 09:20:46

Hmm, shame about the crocs, Dd3 is not a fan of shoes either I used to buy really lightweight boots by Ricosta or Ecco when she was little and tie them tight so she couldn't kick them off! You are right about the screaming though. When does she need shoes on? If its for the park you could take them with you and say shoes for park or something and as soon as she has finished playing allow her to get back in the buggy and take them off again, she might begin to learn that there is a motivator for wearing the shoes! I dont know I could be talking crap!

I also agree about the dummy, I would give it her back for now. You need time to breath and stay sane, for the sake of a dummy dont send yourself bonkers!

When you are in a better place and her understanding improves you can gradually wean her off it.

Do whatever you need to do to survive, break the rules, parent your own way and try to get a break, if that means sitting them in front of the tv with their lunch while you drink a hot drink in peace, then do it!

Good luck flowers

Cakescakescakes Mon 22-Aug-16 17:58:43

Would she wear wellies? My son wore wellies a size too big for months as they weren't tight round his feet.

Needfinsnow Sun 28-Aug-16 17:16:26

Queen, please do look into ABA therapy! It's a serious life changer! Pm me if you want any information!!

eskimomama Mon 29-Aug-16 10:19:44

Msqueen33 just seeing your threads now, I fully understand your feelings, even though I only have one DC, who has non verbal ASD. I also hate autism, and I'm also constantly tired, especially today after a bad night and DD crying all morning and me not understanding what's wrong.
Some days are better than others and little moments of happiness and joy (like getting a hug or a beautiful smile out of the blue from her) is what makes me keep my head above water.

May I ask what is your DD's autoimmune disease and how is she when you say she's constantly ill?
I've been reading about autoimmune diseases overlapping with ASD (causing it/making it worse/or ASD behaviour hiding the autoimmune condition etc.).

My DD has had very severe food allergies and eczema since she was a baby, before autism. And ever since the dx she does seem to be feeling unwell a lot of the time, tummy aches, headaches, malabsorption etc.
All the kids with ASD around us don't seem to have any of these issues.

Msqueen33 Mon 29-Aug-16 21:30:01

It's so so tiring isn't it. At three no words is devastating as all the kids around her and younger can talk and do so much she can't. She too spends a lot of her time crying and miserable.

She was diagnosed with coeliac disease earlier in the year. We think she also has some allergies and she's due to be tested for dairy aswell. My middle dd has no allergies to food or anything for her it's just the autism. Which although it sounds stupid is much easier to manage. Autism and an autoimmune disease is very hard to manage. My youngest can't understand why she can't have an icecream cone and we have to be so careful with cross contamination. Do push to get her tested. We had five separate visits to a Gp until I asked my husband to take her to demand the blood tests I wanted. Coeliac was the last thing they thought it would be but her anti body levels were through the roof.

My dd had constant tummy aches, rashes, she has pretty much given up food apart from bananas, sometimes a small amount of pasta and dry biscuits. She use to be a very good eater. She was very tired all the time, she looked awful very pasty and grumpy and was always poking at her tummy.

How old is your dd?

eskimomama Tue 30-Aug-16 10:00:37

Thanks queen for your reply.
I'm so glad you got the tests done for coeliac disease and now at least you know to take gluten away. The GPs are so bad at even thinking about it, it's unbelievable. Did you ever try taking dairy away (including all the hidden lactose in biscuits/processed foods) and see how she goes? Does she have diarrhea?

My DD is 6.5. She was diagnosed with severe IgE allergies to cow's milk protein (anaphylactic shock) at 6 months, the same tests found her allergic to eggs, and very slightly to gluten and some nuts. They were all going through the breastmilk and causing bad eczema. 2 weeks after stopping she was thriving and had beautiful skin. That was before autism started... According to the same blood/prick tests, the allergies have now reduced and we're supposed to give her foods with dairy and gluten, even though the docs said she might have become lactose intolerant because she was never exposed to dairy as a baby, and never developed the lactase enzyme. I'm lactose intolerant myself and it's not nice, so I never wanted to "expose" her to that.
Her gluten sensitivity isn't as clear as coeliac but she's much better without it, so we keep the gluten out.

Fully understand it's hard work trying to explain to your younger DD why she can't have the same treats as her older sister!
Also fully agree that it's easier to raise a child with autism who doesn't have these gut issues, it's like having 2 disabilities and the usual ASD advice just doesn't work due to the poor child feeling ill all of the time...
When you feel that way how can you possibly be compliant and cooperative with school and OT exercises?

For what it's worth, my DD became extremely picky when she was 4-5, it seems like everything was causing tummy pains. We did various food eliminations, probably too much, which helped her digest better but made her even pickier as she never wanted to re-try previous foods (especially veg!).
We worked with a naturopath specialised with ASD, used lots of probiotics and supplements to heal her gut issues and it massively improved.
Then I used a method for extremely picky eaters to teach her to trust food again (we were at the point that she skipped ALL meals for several days in a row, literally survived on little bites of crackers and bananas, it was awful). It worked really well even though she's still reluctant with many things, but I can't complain. Here's the book link if it can help.

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