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Parenting

For free parenting resources please check out the Early Years Alliance's Family Corner.

Toddler with severe autism - I’m drowning

76 replies

ThisNewCat · 22/02/2024 16:21

as above I have a 3 year old with quite severe autism / special needs. They are non verbal and can be very violent. When they are not in a meltdown they are gorgeous and just the absolute best company, but I have to admit 80% of our time is in meltdown, for example can’t have clothes on, can’t eat most textures, can’t stand any noise, obviously can’t talk or communicate, they can’t gesture (no pointing waving anything ever) and I am their prime caregiver 24 hours a day (lots of sleep issues), everything is a battle. I am so exhausted. They were assessed as having little to no understanding and obviously no outward communication through speech. We tried signing, this didn’t work. We just muddle through at the moment.

I am generally a positive person but I have to admit the last few months I am so depressed to the point I have felt like ending it all. I feel completely isolated, alone and so sad for the life my child will face ahead of them. I feel like this is somehow my fault?

i don’t even know what I want from posting here but honestly I feel like nobody is in the same boat. We go plenty of places and I look around seeing the children the same age just happily playing, chatting, connecting with their parents, siblings etc. we don’t have that.

this is my only child and we won’t be having any more. As awful as it sounds to admit I feel robbed of a ‘normal’ parenting experience as my life has turned upside down having to essentially be a 24 hour carer. I miss my life before this, I miss my job I miss my friends.

maybe I’m just hopeful someone can tell me it gets better?

we’ve been offered little to no help, and I have no idea what I’m supposed to do about schooling etc either. I feel like I knock on every single door but never get help. Maybe it’s my local area? I don’t know

i feel so alone.

OP posts:
NowStartAgain · 22/02/2024 17:08

Where I live the Child Development Centre staff help families with EHCP paperwork and support children with SEND in mainstream nursery settings. They are Local Authority. You probably do need to start the EHCP paperwork now to get access to the right educational setting and support for your child.

Getting your child a nursery place can help in getting access to other support and getting the EHCP in place. Maybe start by internet search for nurseries with SEND provision, they should all be inclusive but some will be more suitable for your child than others.

It’s a very stretched system unfortunately and if you can find other parents near you facing similar challenges that might help more than anything.

And I’m sorry life is so difficult for you at the moment.

DyslexicPoster · 22/02/2024 17:11

You just NEVER know.

My son aged 4. Would bolt. Not just run off, he was Usain Bolt. He hit me, bit me, threw things out the car while driving, tried to get out the car while driving. Threw his car seat at my head while driving. Non verbal. Very frustrated. At 7 he couldn't talk, couldn't sign, couldn't use pecs, very unhappy child. Would try to escape if anyone non family came into the home, woukd walk off if any adult tried to engage him. He was punching his toddler sister on top of her head and full on strangling her until I peeled his hands off her throat. She was scared of him and I feared for her life.

Then I moved him to school where they had OT and speech therapist on staff roll. He started to sign. Within 3 months he started to talk. I was told he was bright but I dared not belive that.

He is sitting in front of my now aged 11. He is the most gentle, caring, empathic child now. He can talk. He is learning to read and write and has a IQ of 120. He was the narrator of his Christmas play. That was such an amazing incredible day.

I thought he would never talk. I thought he would never read. I thought he would never have friends. He has the mental age of around five and receptive, expressive and phonological language disorders. He has an amazing sence of humour. So funny too.

He is no the person he was aged 4. I know how hard it is. Part of wished he'd make me crash the car when he was young so could both find peace. But it got so much better. No parent on this earth has been as proud as me hearing their child narrate as me. For each massive low, there's been a great high too. It's still not easy. I still worry for his future, feel sad he isn't at a local school etc. But it got better. A whole lot better

mathanxiety · 22/02/2024 17:12

Please, for the sake of your own sanity, get on Facebook and start connecting to others in the same boat.

There are knowledgeable people who could be great resources for you.

Interested in this thread?

Then you might like threads about these subjects:

SerenityNowInsanityLater · 22/02/2024 17:14

Where in London are you, OP?

CCLCECSC · 22/02/2024 17:17

Lots of great tips here.
Never too early to apply for EHCP.
Similar with DLA.
You have a 3 year old; therefore like any 3yr old you are entitled to a funded nursery place so make contact with your local Early Years education department.
Touch base with your Health Visitor again... they aren't doing their job properly if they haven't signposted or referred you to other teams.

Bobbybobbins · 22/02/2024 17:21

Agree with lots of others that getting an EHCP is vital. My younger son got his at 3.

CaptainEmergency · 22/02/2024 17:23

To add OP, I also work in the special school my son attends. We work with children like yours every day.

The nursery / school will find something that your child wants - food, a toy, opening and closing the cupboard and they will use it to motivate your child to communicate to get this item.

i never thought my son would be able to do anything at nursery - I simply couldn’t understand how it could possibly work - but a special nursery will provide a setting you can’t replicate at home. Your child will see the other children sit at the table to have a biscuit, will see them put coats on to go and play outside, will hear “now it’s soft play” when it’s time to go in the soft play area, will see them all having a turn with a fun sensory toy - and your child will want to do (some of) those things too.

Much of the behaviour is probably frustration at not being able to communicate and possibly anxiety about not being able to predict what is happening. So also internet search for ‘now and next’ and ‘visual timetable’.

The nursery / school will know everything to do with getting an EHCP and will help you.

Make that contact and things will happen. ❤️

User373433 · 22/02/2024 17:25

Go back to the community centres, try more. The one I go to has a lot of families with toddlers with severe autism, and yes, they spend half the time chasing the child and struggling to get them to stay in the room or away from doors etc but they also get hot drinks and a listening ear and a change of scenery and feel less alone. It sounds like you need this. The right children's centre will understand and not be phased if you need help getting your son back in his pram.

user1480947435 · 22/02/2024 17:25

Hi,

I've just joined Mumsnet to be able to post this. I have a 7 year old with complex needs including ASD and ARFID and I am a SENCO in south west London. Ive got experience of applying for DLA for parents I work with at school, EHCPs etc. and respite. If you would like some help to do these things and want someone to talk you through everything, please send me a message and I would be happy to help. I know how hard it can be x

Dippydinosaurus · 22/02/2024 17:40

You should have some evidence to support a parental request for an EHCNA - apply now it's a long process. Your DC is non verbal so should be known to SALT. Attach that report to your request. If not, speak to your health visitor asap. GP for referral to Community Paediatrician who will be able to start the process on the ASD pathway and potential medication to help with sleep.

Does your LA have an early years team? Check the local offer on your LA's website for contact details. They will be able to provide support and possibly help you with a nursery/funding for the nursery to provide support.

Worst case scenario is sending your child to nursery and they can begin getting the evidence for graduated response - this is key for an EHCNA.

Good luck it's very hard and you'll probably have to fight for some support but the sooner you start the better.

Almahart · 22/02/2024 17:46

mathanxiety · 22/02/2024 17:12

Please, for the sake of your own sanity, get on Facebook and start connecting to others in the same boat.

There are knowledgeable people who could be great resources for you.

I completely agree with this, support groups is where Facebook comes into its own, they are an absolute lifeline.

bryceQ · 22/02/2024 17:49

Can you say which borough you are?

There are services eg markfield.org.uk
Who will help you navigate things like dla and forms.

My son is very violent, severe needs. I had a bit of a breakdown the summer he was 3 I just reached a point. I am a strong positive person but I was destroyed. It is much better now he is 5. We waited for him to go to nursery until I had an ehcp as there were no specialist nurseries near me. Can you Google the name of your borough and portage, you might get help from this service.

My son is joining a specialist autism school very soon. I would say though he is still violent, life is a bit easier now.

my most important advice is you need to find other local parents in the same boat, get a Facebook account and join some of the national groups and try to find people nearby you. Go on your local authority website they will have an SEN page and that might direct you to support groups. You really need a network around you to ask about local things, even if you can't manage the playgroup itself.

CrocusSnowdrop · 22/02/2024 17:59

I don't have any practical suggestions, but have you watched There She Goes on the bbc? Feel free to tell me I'm chatting shit as I don't have personal experience myself, but from what I've heard from parents in your position, it's helped a lot of them feel less alone.

erniesmilkcart · 22/02/2024 18:15

Is there a portage service in your area Op? Your health visitor should know. Or you could make enquires through your local councils early years team. It'll be on their website or your local family information service website.
Portage are similar to health visitors but work solely with children with send and can help advise about nurseries, ehcps, strategies at home etc.

Also I know it's easy for me to say, but don't discount a mainstream nursery if there are no specialist places in your area. It may be trickier to find the right fit and not all settings feel able, but it can work. At my setting we have around 10 children at the moment who have/will likely have an EHCP before they start school. We have children with the same diagnosis and same/similar behaviours and play preferences to your dc. They and their families are entitled to the same access to childcare as any other child.

It's definitely not too early to apply for an EHCP, it's the perfect time if you are looking for a specialist school place when they start school. Your local sendiass should be able to advise you on how this works in your area.

Peaceupatown · 22/02/2024 18:26

ThisNewCat · 22/02/2024 16:46

Thank you so much. We are in London and I feel that’s part of the issue, the services are so stretched and all I keep being told is that there’s wait lists for everything and just to be patient. But we haven’t had any occupational therapy etc or any help at all? It was just kind of that’s the diagnosis off you go, I really don’t understand when I read on here of people having almost a full team of support?
how do I get that?
I need to apply for DLA but have been putting it off as the form is bloody huge. I will definitely do this asap as of course as you all know the costs really Mount up.
sorry to sound so clueless but can anyone sort of explain as if I am a small child (lol) how I get an EHCP and what does this mean? I don’t think there are any specialist nurseries near us?

Not sure where you are in London but do have a look at Snap in Brentwood who friends say are simply amazing https://www.snapcharity.org/
hopefully it’s not too far for you to reach or they may even have some advice for you on services local to you x

SNAP Charity - Registered Charity No.1077787

If you have a child between 0-25 years who has any additional need or disability and you live under Essex County Council, Thurrock or Southend then we are here for you and your family.

https://www.snapcharity.org/

stars345 · 22/02/2024 18:27

The practical advice here is amazing OP, I can't contribute because I'm in the thick of it myself and I don't understand a lot of it. But what I will say is age 3 was the absolute worst time for me. DS was non verbal, violent and extremely difficult. To top it off he screamed and attacked me and would only go to his Dad. I dare say I had some awful thoughts of not being here anymore because I felt useless, stressed and hopeless.

He was verbal by 4 but not like other 4 year olds.

He was in a mainstream nursery and they were useless. I chose a school with a good SEN department and within a few weeks he had been referred to two different specialists including SALT.

He is now a 6 year old that has won swimming badges and can read books to me. I honestly thought he wouldn't be able to read until he was much older at least.

This may be the worst time for you, toddlers are bad enough without additional needs.

It will take time but it will improve Flowers

LilBus · 22/02/2024 18:30

I’m actually the opposite my daughter is 12 and severely autistic and I’m annoyed so many people told me it would get better, she’s definitely worse now; wish I hadn’t had so many people tell me she would get better as I feel a bit tricked really! But sadly no it doesn’t always get better / easier

BelindaOkra · 22/02/2024 18:36

Ah typed a response then lost it.

My non-verbal autistic son is in his mid twenties now. I wouldn’t say things have got easier to manage with him, but the absolute hardest time of my life was pre-school years.

What helped was finding others (especially one person) in the same situation. We could ring and offload - a godsend. And meet up. And then things like special school and respite - all helped build the community of people who ‘got it’ and that made life an awful lot easier.

Thymeforbed · 22/02/2024 18:38

My child was very difficult in the toddler years. PDA / ASD / SPD / ADHD / APD - acronym soup. Plus, while not completely non verbal, his speech wasn't great, and he had little to zero introspection.

My advice would be that once a need is met it often escalated slightly, then dies away. I hate that this is true for us because it pulls in so many trigger points that people can press to make you feel shit about your parenting. But for us, it was true. Very hard to accommodate but it did almost eliminate meltdowns which were several times a day every day at toddler age. The kind that leave you feeling almost light headed with adrenalin and totally self conscious when they happen in public. And then progress did happen. Small steps. Not consistent. But one day you realise that you haven't have to have that battle and it's something else now. Like clothes. Very simple. To go out you need clothes, any clothes. That's it, that was the height of the bar we had.

lorisparkle · 22/02/2024 18:42

Have you investigated your local special schools. I have taught children from 2 years 9 months in some of the special schools I have worked in. Have you looked at your areas 'local offer'. It may give some places you can go for support.

Baileyscream · 22/02/2024 19:01

Hi OP, please forgive me I haven't read the full thread but did read some. I've been where you are. My ds has severe autism and was diagnosed at two. It should have been earlier but (all the usual nhs/ la excuses).

You're right go mourn, it's awful and the realisation and fear of the future is relentless. You have all these ideas of what the future holds and then clearly its never going to happen.

Apply for the ehcp now, yourself. When I scrolled through I saw mention of sendiass, please take their advice with a pinch of salt. Although they should be impartial, usually they aren't as they are a commissioned service of the LA. Phone sossen or ipsea as these will give you good advice based on law not what the LA have put into place (all LA's are over budget on sen spending, your child will cost long term so be prepared for delays and excuses even when unlawful). The threshold for an ehcp assessment is low, if thd LA refuse then put in for appeal to tribunal.

Your child needs an OT assessment by an OT trained in sensory integration. They need a speech therapy assessment by a speech therapist trained in aac (both high and low tech) and autism and an educational Psychologist report. These should be done as a minimum as part of the ehcp assessment. Of the la doesn't have means to do them within the assessment timeframes then they should pay for private reports to be commissioned (this is a good thing if they do as it's likely the reports will be of better quality). It would be reasonable for you to ask for any other assessments you feel your child needs to fully detail their needs and the provision to meet them eg dietitian, sleep practitioner, social care, la OT to look at adjustments to the home.

You need to start with very basic communication with your child in a way that they'll be able to engage. Think pictures, signs, vocal words all at the same time so they get lots of re-enforcement and the best chance to communicate. Use a very basic now and next/ visual timetables strip so they start to learn what is/ going to happen/ing to them. You could also use objects of reference eg at night time tje same Teddy bear, hold it to them and say "bed time" then put them to bed or use one sippy cup for "drink".

Pecs (picture exchange system) didn't work for my son but he loved the ipad and could use apps. So we started a hi tech comms app (there are lots to choose from, we went with words for life, they get discounted around autism awareness day but you should be able to get if funded via the ehcp if the slt says they need it- push for a hi tech aac trial- your child isn't too young and revisit if it doesn't work). These apps basically become your child's voice but they don't replace their voice the evidence is that it supports and in many cases leads to verbal comms (it did with my child eventually). They press a button and it vocalises, start by finding something motivating maybe spinning on a chair if they like thst and using "stop" and "Go" or "more" for their favourite sweet. Model it yourself then when they follow or even try to do it react to them.

Toileting maybe an issue. You should be able to get free nappies/ pull ups from the nhs. Don't give up on toilet training, my child came out of nappies at ten and is still learning aspects but they are making progress. Ot will be vital for this.

Any and all progress is worth celebrating.

The home adaptations come through a grant that the la apply for. It could be for a wet room if toileting is an issue long term or a changing bed to help your back, it could be fencing to make your garden safe for burning off energy, it could be safety doors so you can lock the kitchen, it could be alarms so you know when they get out of bed (to wake you), it could be looking at your windows to make sure they're safe.

Look up Facebook groups for patents of children eith severe autism. You may find some of the general autism groups font have a clue.

Look at schools now and get an idea of where you want them to go. When you know discuss with sossen why and what to do.

Your local parent carer group may have other parents of children with similar needs. It's always good to make these friendships if you can, they'll know how things are locally and may have already been there and done that. It's also good to have people to talk to who get it.

Apply for dla and a blue badge. Apply to family fund if you meet the criteria and cauldwell trust for a sensory kit if you meet their criteria.

Pick your battles, cry if you need to, it's a long road. Do not take nhs or LA'S word as gospel.

TheSquareMile · 22/02/2024 19:16

I feel for you, you are clearly going through an awful lot.

Could the nearest Citizens' Advice Bureau help you to fill in the form you have for DLA?

Which London Borough would deal with an ECHP for you? Other posters could link to the pages you need or suggest a source of help for you.

https://www.gov.uk/disability-living-allowance-children

StrongandNorthern · 22/02/2024 19:52

I just want to come round and hug you.
So, so many points to address ... and people are.
Hopefully there will be many, many more.
I'm thinking ... and any helpful ideas I have I will send.
Meanwhile ... IF you can get some respite care - please don't be afraid that others won't be able to 'manage' him, and care well for him. They can. They will.
If you possibly can - access this.
Get help with DLA forms (CAB, starting point - they can find someone who can help you).
Keep hanging on ... Much love, to you both xxxxxx

ShareTheDuvet · 22/02/2024 20:06

Dippydinosaurus · 22/02/2024 17:40

You should have some evidence to support a parental request for an EHCNA - apply now it's a long process. Your DC is non verbal so should be known to SALT. Attach that report to your request. If not, speak to your health visitor asap. GP for referral to Community Paediatrician who will be able to start the process on the ASD pathway and potential medication to help with sleep.

Does your LA have an early years team? Check the local offer on your LA's website for contact details. They will be able to provide support and possibly help you with a nursery/funding for the nursery to provide support.

Worst case scenario is sending your child to nursery and they can begin getting the evidence for graduated response - this is key for an EHCNA.

Good luck it's very hard and you'll probably have to fight for some support but the sooner you start the better.

Just to clarify LAs can’t insist on the graduated approach before an ECHNA is approved - they’re not legally allowed to impose blanket policies so not all children need this to get an assessment.

DyslexicPoster · 22/02/2024 20:08

My son had a ehcp before he started school. Dla at 3. Highest rate mobility and care dla at five