Toddler with severe autism - I’m drowning

[ThisNewCat]

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.

This sounds incredibly hard - have you had no previous support from your HV? Have you applied to the LA for an EHCP - your DS very much sounds like he would benefit from a specialist nursery and school setting, and this process needs to start ASAP. Google SENDIASS/IASS in your area - some are better than others (our local one is excellent) and they will support you through the process.

I'm so sorry op. I think it's completely normal to grieve the parenting experience you expected to have. Parenting a disabled child is very hard. Are there any FB groups locally for people with disabled DC?

Also worth googling SEN parent groups locally - again we have an amazing one local to us that’s been a lifetime to lots of our families. I hope you can find local support too 🥰.

I can relate to your feelings as I also have a child with ASD and complex needs. I'm sorry that you have it so hard, it really is relentless. Do you have family support?

I can recommend going to see your GP and telling them how YOU are affected, they should put you in touch with social services who will offer respite care.

You are doing amazingly. Toddlers are hard enough and ASD makes it even more difficult.

3 is a really tough age - I have two DS with severe SEN and 3 was the worst age. I also often feel robbed of a typical parenting experience. It's tough! Hugs OP.

Ah thank you so much for the replies. Honestly I think I can’t admit it to myself until recently. I’m very much ‘keep on keeping on’ but of course they’re getting bigger and stronger and the meltdowns are getting worse. It’s so distressing for me (sorry to sound so selfish) too because I love my child to pieces and to see them 10-12 times a day throw themselves on the ground headbutting the floor, screaming until they are sick, covered in scratches from hurting themselves etc. I feel like sometimes it must be me :(
im so sleep deprived too I know that how depressed I feel is of course because of that.
the best way to describe it is I’m constantly on edge for the next disaster. It’s tiring.
in terms of the HV, at their 2 year check up the woman was completely useless, just told me what I already knew (luckily I’d spotted the signs at one year old or so) and just to wait for assessment.
i waited 18 months for assessment to be told what I already know, level 3 autism.
they do not go to school until next September but of course i have to apply somewhere in September. I am so new to all of this and I enquired to the LA about an ECHP and went to meet the person who apparently could help but they said it was too early to do this?
I don’t have Facebook so am a bit out of the loop with support. We have been to a few ‘SEN’ groups but to be honestly they cannot cope with the noise etc from the other children. I hate being at home because they get so obsessed with certain things (we can spend 4/5 hours opening and closing a door for example and then completely melt down when it’s time to change nappy or eat) or we go out and it’s also a disaster because I cannot control anything that may upset them.

there has to be more to life than this :(

At 3 they should be eligible for funded place at a Sen nursery. Which would give you a rest and enable people to assess him/her so that they can get the appropriate support at school. I would try to either ask your health visitor or GP for a referral to the early years support service in your local area. They should hopefully be able to help at least point you in the right direction. You can also ask your council for a carers assessment which is a statutory right and can help you access some other types of support.

Have you applied for DLA? That opens a few doors too

I second the good advice to search for sendiass in your area. Your child should be receiving early help and a nursery place at a special needs nursery. We were so lucky that our local special school has a nursery and my son (non-verbal ASD, learning disability) started there at 2 (nearly 3) and has now transferred to the school.
Also look up pecs - picture exchange system. You use photos and / or Picture symbols that your child can give you to help communicate their wants.

You may feel that nursery and using photos will be beyond your child but please trust me that they are probably achievable and will become invaluable.

If you post your general area / county people may be able to specifically signpost you to supervision.

There is no such thing as it being too early for an EHCP. You can apply for one yourself; I recommend including as much information as possible about his needs and the impact of them on his everyday life.

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?

Firstly breathe ... plenty of us have been there and can give you some advice and insight. You are not alone.

Secondly 3 is still not a given for no speech, my dd developed speech just shy of 4 but within weeks it was full complex sentences, as if she knew all along but couldn't be bothered, she is still selectively mute, only talking on her terms if that makes sense. She had a diagnosis of "classic autism" which was changed to high functioning at age 6 (yes terms have changed but it explains the progress).

At 3 assuming in the U.K. you should be able to get 15 hours of nursery, a state nursery would be preferable because they will start the ehcp plan.

Going forward they will help you decide whether to mainstream educate with ta as required or a specialist school, many do start in mainstream switching by 7 or 8.

As to playgroups etc. There are specialised ones, we though were in a specialist programme (not uk) which helped so much, I do wonder if it made the difference though can't prove that. We used ear defenders a lot.

Thankfully the obsession my dd has is music, hours on a keyboard, then recorder, violin .. plays 8 instruments to at least semi pro. All lovely but I'd take not being hit or bitten for 20 years. She's ok now, things settled around age 20.

And yes part of it (probably the same as most of you posting here) I also have huge anxiety leaving them with anybody that isn’t me. They can only be with me or my partner. How would I even go about having a nursery or respite? I am also quite scared because they are quite psychical and violent and then the non verbal element. How would I know they are safe and cared for? They would definitely need 1-1 and sometimes maybe 2-1? This is so so hard.

Thank you so much, I completely understand it must have been a really difficult journey for you and your daughter. May I ask what did her schooling journey look like?

Thank you for this. Is the LA able to turn down me applying for one? I’m so clueless I’ve tried to read up about it but I find it’s made purposely confusing.

Contact the London Autism Group OP. You just need to find one professional contact and they will help you with so much. Totally understand why you haven’t previously though. By reaching out you’re acknowledging your DC has autism and their life won’t be the one we all imagine our children’s lives to be. It’s going to be different but that doesn’t mean bad. I’ve seen this a lot with parental acceptance of disabilities. It’s tough. Reach out to them. I wish you luck x

To answer a few other points, we have tried all of the playgroups, children’s centres etc even the specialist times for children with SEN. It’s just too hard. I am a very calm person but when your child is slamming for example a sliding door over and over again and is so obsessed with it they cannot psychically leave and it takes 4 of you to get them in a pram it’s just so impossible.
i don’t think there’s any way a ‘mainstream’ nursery would cope and I wouldn’t put my child through that, either, let alone the staff

I’ve issued EHCPs to 2 yr olds so you’re absolutely not too early. Yes they can turn you down but this is where SENDIASS can help as they will be able to advise and guide you on how to get through the process.

You’re probably right about a mainstream nursery but there are specialist nurseries out there. I really hope there’s on near you. If you contact the National Autistic Society they may also be able to help.

Thank you, I will search this tonight after bedtime is done. I honestly appreciate everyone’s help so much. This past week it has really hit me and I feel like I’m in an almost mourning phase, I feel numb.

Sorry, provision, not supervision!

Sadly, lot of LAs do turn down the initial test, which is a way for them to try to stem the flow. Legally, all they must consider are two questions:

• whether the child or young person has or may have special educational needs (“SEN”); and
• whether they may need special educational provision to be made through an EHC plan.

If the answer to both of these questions is yes, (as it clearly is for your little one) they must carry out an EHC needs assessment.
This test is set out in the law (section 36(8) of the Children and Families Act 2014). By all means quote this in your application.

You may find it helpful to include the information about your DC's needs set out under the four areas of the Code of Practice:

Medical, physical and sensory
Communication and interaction
Social, emotional and mental health
Cognition and learning

Again, although the above two questions are the only ones set out in law, having as much information in the initial application as possible, if it is a 'yes to assess,' really helps the educational psychologist who will go on to meet with you, observe your little one, and write the advice.

If the LA turns you down for an assessment, you can go to mediation - they usually roll over then!

You can also approach your LA to speak to what used to be called the Disabled Children’s Team - the social worker from our local DCT was a lifeline when my friend’s DD was diagnosed 🥰.

And yes - have a look at SENDIASS in your area, also IPSEA charity and Special Needs Jungle are useful websites for all things EHCP related.

Or approach your local Early Help service - ours has a specialist benefits lady who can guide through all the benefits you’re eligible to.

I'm sorry that I can't give you the practical advice you need to get more support, hopefully others will be able to.
The experience I have having grown up with a family member similar to your child is that yes, things do get better, but obviously this is anecdotal and I won't presume to speak for others.
From what I have seen I think the changes are smaller and slower but they are definitely there. They might not be the ones NT children and parents experience but they are in no way inferior. They probably aren't something you can as easily envisage, because we are accustomed to the NT world. They make our family just as happy and pleased as any other achievement.

The intense stage that required looking after as you would an infant lasted years longer. My sibling started taking steps at around 4 I think and saying a couple of words at around 10. Other children might not do any of these things but they will have made other changes too. They may seem small, but they are significant. My very adult sibling is still learning to do things now, 40 years later.

As with everything in life no one can say how anyone is going to cope with anything until they experience it firsthand. Every family will find its own path.
I wish you all the best and hope you can connect with other parents who are experiencing bringing up ND children and support one another .