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Autistic 3 year old

20 replies

SleepDeprived2018 · 13/12/2021 19:53

Loosing my mind.

How do i help her what can i do??? Everything seems to be getting so much worse.
Everyone keeps telling me it will get better with age but for us it seems to be getting worse. DD has just turned 3 and she is autistic.
She wont sleep. She wont eat. She keeps emptying the contents of her nappy everywhere.
She has an ehcp. Shes just got her diagnosis.
She is so angry and frustrated all the time i so desperately want to help her it breaks my heart to see her so frustrated.
She is currently non verbal. Speech and language has been no help really .

I just want to help her. I feel like a shit mum when she is so unhappy. Its my job to make her happy

I dont even know what im looking for from this post im just broken

OP posts:
Wordbee · 13/12/2021 19:57

I'm so sorry you're going through this. I don't have any advice as such, but didn't want to read and run. You are doing your best, and I'm sure you're a great mum even if it doesn't feel like it. I'm sure there are some lovely people on here with furore experience and wisdom with ASD than me. Sending you big hugs. Be kind to yourself.xxx

SleepDeprived2018 · 13/12/2021 20:13

@Wordbee thank you for your lovely words ❤️

OP posts:
JTTWC · 13/12/2021 20:28

Hi OP. I do feel for you. When one my children has a restless night I feel like an absolute zombie the next day and barely able to function, and they don’t have any additional needs. Have you tried posting this in the additional needs forum on Mumsnet? Does she attend a nursery at all? They may be able to point you in the direction to help you further. I’m not sure if it’s called respite or something similar.

Interested in this thread?

Then you might like threads about this subject:

SleepDeprived2018 · 14/12/2021 23:48

@JTTWC thank you i didnt even realised there was an additional needs forum but i did then post it there xx

If its not DD being the sleep theif then its my 3 month old! Maybe ill start drinking coffee 🥱

OP posts:
x2boys · 14/12/2021 23:59

Hi op my eleven year old has severe autism and learning disabilities he's also non verbal
Regarding sleep have you tried melatonin?
Granted it doesn't work for everyone, but worth a try ,I think the paediatrician will need to prescribe
Life got easier when my son started school ( special) and when I met people who had children with similar needs .

Thinking2041 · 15/12/2021 00:11

I have no experience of having a child with special needs so I have no practical advice.

I just really feel for you. Your three year old must take up so much energy and you have another. I take my hat off to you for coping.

I hope someone comes along who can offer more tailored advice.

SleepDeprived2018 · 15/12/2021 09:41

Hi @x2boys thank you for replying!
Ill ask about the melatonin - she does tend to sleep through maybe twice a week so i feel really grateful for that! Dont know if this would mean they wouldnt give it to her? Are there any side effects?
Is it ok to ask what his learning disabilities are? I just mean what am i looking out for with DD if that makes sense
You are so right - when we first started with all the appointments i met a mum who is further down this road and she has been my therapy i dont think i could of done this past year without her! Xx

OP posts:
SleepDeprived2018 · 15/12/2021 09:43

@Thinking2041 thank you for replying x she certainly does take every ounce of energy - we dont get any help from family (not that I expect that) but she does go to nursery 3 days a week term time x

OP posts:
x2boys · 15/12/2021 09:50

Yes no worries well he's at a school for children with severe learning disabilities ,he's non verbal can't read or write ,he will be taught life skills he is toilet trained but we only managed it when he was about nine ,autism is a huge spectrum though so it's difficult to say at three how a child will progress ,ask about signaling/makaton to aid her communication,my son uses PECS
There are no side affects with melatonin ,it's s naturally produced hormone ,and can help.children go to sleep ,it's definitely worth a try ,I would also suggest you see what groups are available in your area for children with disabilities for your support as well as your daughter's .

x2boys · 15/12/2021 09:51

Signalong*

x2boys · 15/12/2021 09:58

I will add I remember the early days very well my son was also diagnosed at three ,I really struggled at first ( still do at times ) life is not always easy and it's not how I imagined it would ,but my son is brilliant ,he' makes me laugh every day
I have a good group of supportive friends who all have children with disabilities ,it's made things infinitely better knowing others understand .

SleepDeprived2018 · 15/12/2021 10:29

Really appreciate you replying @x2boys x
Pecs has been rules out for now as she doesnt have enough understanding or rather patience for it - she does well with objects of reference at the minute and she hand guides us to things she wants. We have just got dla so thinking of using that for private speech therapy

Im glad your days are a little easier now and you have a supportive group xx
I am really struggling some days i cry and cry at the thought of the unknown and kind of grieving how I thought her life would be - forever worrying about what she will face. Then other days i feel so positive and think she is healthy we are lucky - shes progressed in some small ways so maybe she will progress more x

OP posts:
IncompleteSenten · 15/12/2021 10:39

What early years support do you have?

My eldest was dx at 2.5 and my youngest at 3. We had a home visiting specialist 3 sessions a week each and they did amazing work and taught me how to do the same. It was a mix of son-rise and ABA (I'm not a fan of ABA as a standalone but taking elements of it and mixing with other approaches can work well ime)

It's tiring certainly and I was really hard on myself which looking back ready didn't help.

Mine are now 21 and 22 and my advice is fight for as much support for them as you can from day 1 and I'm sorry but that is a fight you are going to have over and over and over. Get very familiar with the law!

Pick your battles. You need to let things go that maybe you wouldn't otherwise. Prioritise a few things that really matter and let some other stuff go.

SleepDeprived2018 · 15/12/2021 10:49

Thank you @IncompleteSenten

How do access early years support??
The only thing we have is nhs salt every 4 months pr so by video call - it hasnt helped at all.
We were under portage they were amazing but they only do two visits and then discharge.

OP posts:
creamcakescreamcakes · 15/12/2021 10:50

Hi @IncompleteSenten I don't want to derail but in a similar situation as OP and I wondered whether you could explain what you mean- why become familiar with the law? What law? What kind of support and how did you have to fight for it- do you mean keep ringing the council for therapy, or fighting for a diagnosis so you get support? And where you say prioritise a few things and let the rest go- what would you say is most important to prioritise?
How do your children live now as young adults?
Thanks so much x

IncompleteSenten · 15/12/2021 12:09

Early years support was provided by the local authority. You need a referral. Ask the team who gave the diagnosis to refer you.

This is just my experience. I can only tell you how it has been for us. Diagnosis was quite straightforward. My eldest was clearly autistic from birth and had his formal diagnosis of autism by the time he was 2 and a half. It was actually his early years teacher who flagged our youngest up. He presented very differently to our eldest. He got his dx at 3.

You need to know the law because you will be fighting the lea for appropriate provision and may well be fighting the school too. Then college. Then fighting for placements and adult support. And for direct payments. You need to know the Sen code of practice inside out and upside down. My experience is that you'll be told this doesn't exist, that doesn't exist and only when you can prove it does will it magically appear! You'll be told they can't meet your child's needs because you have to think of the other children too. They'll gaslight the fuck out of you. If they don't have the funding for a particular need, your child doesn't have that need. Hmm

Imagine going to the hospital with your bone sticking out of your leg and they say oh, your leg isn't broken. We don't have any casts or anyone who can set it. It is fine. You don't need it.

Re picking your battles - I think all parents should tbh but when your children have autism you have to have a different approach. What things actually matter? Health and safety is number 1 of course.

Food battles on the other hand are not worth having. Eye contact - forget about it. It can be added in later. Going places because you think the child should have this or that experience - is that because the child actually wants to or because you have a picture in your mind about how childhood should go? What you think should be fun for a young child can actually be torture for a child with autism. Sensory overload is hugely stressful.

My eldest - 22.
He was in nappies until he was 6. Until he was I'd say about 10 he had soiling issues. He didn't really talk until he was 7 and then he talked like a toddler. He was in senior school by the time he was talking without any issues. Before he could talk he was very aggressive. He bit and kicked and he even broke my nose. He wouldn't sleep, he would be locked in repetitive actions and transitioning him from one activity to another was hell. We were told that he would never talk and would need to be in a special school. We were really put under pressure to teach him makaton and use pecs.

We felt that wasn't the right path for him and were accused of being in denial.

He is now as I say, 22. He is in his second year of uni, he has a driving license and a car and is in the process of buying a house. (We're not wealthy, he has a trust fund). He won't be able to live independently without any support. He has support and adaptations/accomodations at uni and he will need a support worker to visit him as well as support from us when he moves into his own home.

My youngest is 21. He was DX at 3 and far later had a dx of ADHD. He was extremely passive as a toddler and we later realised that was the ADHD passive innatentive. He stopped wearing nappies at 5. He never gave any indication that he even realised when he was wet or dirty. He went to bed one night in his nappy, I changed him in the morning. He took off his clean nappy, threw it across the room and went straight to using the loo. He talked but only delayed echolalia for years. He has an amazing vocabulary now. He can talk but he isn't interested in having a conversation. He will give you the information he wants to give you and he isn't interested in your reply. He has PBS now (positive behaviour support) which is going really great.

He is aggressive and can be violent. We have locks on our bedroom doors for safety. He has assaulted many of his 1:1 and needs 2 people with him when he is stressed. At school he had 1:1 normally, 2:1 in stressful situations and they also carried walkie talkies to call for back up. He was left without a placement in college after he attacked his 1:1. There's loads more but this is going to be longer than war and bloody peace.

He is at heart a lovely, kind, sweet and funny young man (as is my eldest) but he cannot filter out any sensory input and the world is hell on earth for him.

Imagine you are in a crowded room full of people yelling and sirens going off. The people all have horrible BO. There are flashing bright lights everywhere and you are wearing clothes made of wire wool. And someone is shouting over the noise and demanding that you carry out a task.

Could you cope? Because I couldn't. Would you lash out? Because I'd be trying to punch my way out of that!

He will never be able to live independently. We will keep him here with us until we can no longer care for him. During that time we are preparing for a transition to a group home.

But again, this is just my two. Every child is different.

doadeer · 15/12/2021 12:22

Hello

I don't really have advice but we are very similar. Almost three year old was diagnosed twice actually this year. It's a real challenge when the communication is such a struggle. My son can't connect pictures yet either, we are just at the "pull me over to sink to get a drink stage"

Here if you ever want to chat x

IncompleteSenten · 15/12/2021 12:22

Oh

The single most important piece of advice I can give you is when in meetings don't let them talk budgets or funding

You say let's put that to one side for now. We need to first identify the needs. How those needs are met comes after that.

Keep on redirecting them to focusing on the needs. They'll try to focus of budgets. Be very clear that an inadequate budget does not cure autism, the needs are there regardless and it is the needs you want recorded.

gogohm · 15/12/2021 12:27

We were where you are at 3, yesterday I picked her up from university. I can't predict the future for you but please have hope at least. My dd had aba therapy, 15 hours a week (USA) plus an hour of salt then specialist preschool 12 hours a week - all paid for by the us government I should add, I had no money, we were living there.

I would suggest looking into the principles, we think that's what helped her, she gained language around 4 and then it was obvious she was very bright. Not plain sailing, lots of mh issues and eating disorder but shes almost independent at 21.

creamcakescreamcakes · 15/12/2021 21:10

Thank you @IncompleteSenten xxx

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