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.

How does he play with other children?

Could that be an option? Getting him to play with others his age @ThisNewCat

If 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).

Certainly not in our area! The privately commissioned reports are copy and pasted! But there's a real problem with recruiting and retaining LA staff and so the dependency on freelance staff continues...

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.

This is probably what many LAs will say, to try to justify not proceeding with an EHC needs assessment - but, it isn't true, or lawful. A graduated approach is not required to precede an EHCP application.

@BlueLozenge la reports are notorious for not being specified or quantified, for not detailing all needs and for not providing details of provision to meet need. They are paid by the LA and the provision costs. Independent reports are more likely to give the detail required as independent professionals work on their reputation. Reports for ehcpa should be provided on best evidence not opinion if reports aren’t provided with adequate assessment you can raise this at appeal. Also if you can prove reports are copied and pasted then you can report to hcpc etc. in addition if LA professionals aren’t available you can provide details of a professional who is and request they use them especially if time is a factor. Your LA may have a contract with certain independents or have one they prefer to use for the reason that they provide reports that favour them- they may as well be employed directly.

Some LA’s do use the reason of lack of commissioning or waiting lists for a reason for delaying or not providing input for ehcpa’s, a parent knowing that they can force the la to commission an independent when told this is really important to either get some decent info for the plan or to get the final issued so it can be appealed.

Lots of great advice here. Another thing that might help you OP is to look at getting a Safespace bed. They are expensive, but there are charities that will help fund them. You can make them into lovely sensory spaces and it also gives you somewhere that is safe to help you manage a really challenging meltdown.

OP, I hope the above discussion doesn’t worry you in any way. All of this and the discussions around it will become old hat to you in a few years. An ehcp is a legal document and if worded correctly can be enforced. Most LA’s try and succeed to save money by delaying need assessments, not getting adequate information to base the plan on and then not wording the plan in a way that can be legally enforced.

Many parents fight to get a good plan or a school they want for their child. Take it step by step, speak to sossen they will guide you through it.

Get him into nursery pronto
They can help get the ehcp

Go onto your council local offer special needs
Call council lea for under fives and say you need asd nursery place

In london there will be asd place nurseries and asd bases

Who diagnosed him was it local? Ask to be referred to specialist hv.
Call ss children with disabilities team for assessment and respite referrsls portage e etc

In regards to Dla. Your child may be entitled to high rate mobility from three years old under severe mental impairment (I really dislike this term) or virtually unable to walk criteria. My son had high rate care from two years old and then also had high rate mobility from three years old, he will transfer to pip in a couple of years. If he doesn’t meet the high rate mobility criteria at three he can claim low rate mobility from five years old. From what you’ve said he should meet it.

if you think he/ you may benefit from a Sen buggy ask for a referral to posture and mobility as you may get one funded.

sorry, I’m trying to think of the things I wish I’d known.

Odd suggestion, a 3 yr old with severe autism is unlikely to play with others. from experience.
But, can very much benefit from structure of. Nursery with staff trained in PECS etc

I would second this!

OP, you’ve had great advice from others, so I won’t bother repeating it. I’m just popping in to say that I have a young dc with severe ASD. I also live in London. If you want to pm me to chat, you’re welcome to do so.

That may well be - but I was saying that in my area it isn’t the case that private reports are better. The LA certainly do try to use the delaying tactics though!

Interestingly, I’ve heard that the requirement to be specific and quantified has led to schools across entire boroughs saying they can’t meet need - an unintended consequence of the requirement.

I don’t have much practical advice but just to say you’re not alone, I haVE DD with rare genetic condition and the future is quite scary. Would love to hear more from @iverpickle how it felt to be a sibling as I am terrified of figuring out how to parent two NT children and one ND

Better they admit they can't meet need and then out of Borough or independent schools that can meet need can be looked at without as much push back or personal budgets given for those needs to be met. None of our local schools could meet need so my son is out of Borough.

I do think that having a good idea of what school we as parents want and don't want and what facilities and support they can and can't provide before going after sections b and f is a good idea.

Section B of the ehcp must detail all of the child's sen and Section f must have provision which is able to meet those needs without questioning what that provision is. There is only very few cases where the provision doesn't need to be so specified and quantified.

If provision isn't specified and quantified or worded as to leave no doubt what must be provided you cannot enforce the plan, it isn't worth the paper it's written on, a complete waste of time.

If you google the name of your borough and 'local offer' that should give you a place to start working through. I'm surprised your HV hasn't supported- if you have Early Help or a children's centre (I know, ha ha) they should also be useful. Some boroughs also contract to other organisations- for example in mine MENCAP provide a lot of support plus a charity called CASPA (if you're in Bromley by any chance) provide a ton of services including parent whatsapp groups which are invaluable.

I had a 3 year old DS who was also non verbal and severe autism, so I have been there. It’s so so tough. He’s older now and it’s quite different, but I remember well the isolation and exhaustion.

My DS could not cope with ANY one else other than me until he was 4 or 5, no nurseries, no playgroups, no anything much to be honest. I had zero support and so paid privately for OT and SLT - and DS wouldn’t go anywhere near them until he was around 6 years old. Couldn’t be toilet trained, couldn’t use a cup etc etc etc.

OP - I don’t know what position you are in - but I just took the decision to simplify my whole life, stop trying to stuff DS into a round hole when he was a square peg - and just reduce the stressors. And by the stressors, I mean life I guess! The things we normally take for granted like going to the shops.

I got 95% shopping delivered. I stopped taking DS to anything except very short little walks / car journeys with high rewards. I gave up work. I tag teamed with DH a lot - I went out or he went out. We didn’t go out as a family. We didn’t go on holiday. We didn’t go to the cinema together. We didn’t eat as a full family around the table.

I just cut everything down and concentrated on my own health/wellbeing and DSs health and wellbeing and my other child’s wellbeing. Went out with friends for a night out/day out when it all got too much and DH took over (working from home). If DS got upset, I just stopped doing whatever upset him.

I then focused on very, very small goals - reducing his distressed behaviour. And improving communication/connection. Health (eg brushing teeth) and safety.

I concentrated on non-verbal connection - which was mainly being alongside DS a lot and getting in tune with him, and doing anything he liked, like tickling, peekaboo, if he lined up toys I got down with him and helped by handing him whatever he wanted or giving him smiles. Just little stuff.

It’s massively worked. If DS is happy, we are all happy. With a very low stress environment DS started to learn, very slowly, started to be happier, less distressed.

It was a good 3 years before DS would engage with any other professional and he’s now in specialist school and is thriving. He’s still severely autistic but he’s happy, he’s growing, he’s able to be himself.

You are saying 'they' do you have 2 kids?

I would keep your DS at home, and if he likes opening and closing doors for hours, just get a lot of things that open and close, and just let him open and close it. If you have to open and close the door, then stop doing it - it will be hard but one rule I learnt is never do anything for DS that I’m not prepared to do 100x! Also, get him an iPad with very visual apps and some YouTube kids - just try stuff.

If he’s opening and closing, he’s learning cause and effect and might need more sensory input and so anything like that could also be good. Get a a big outdoor trampoline and an indoor swing chair made of material - they have to be hung securely but are great. Look at what your DS likes to do, does he like to chew? Does he like to rip things up? Give him chewy stuff or paper.

I really, really recommend centering a lot on your DS. It’s very easy to disengage and feel so tired that we as parents don’t bond so well or enjoy a child with severe disabilities - because it can be so hard. Get a proper break - maybe a weekend away even just on your own in a hotel. Recharge, then when you come back try and reconnect with your DS. If he is still just opening and closing a door, put on a sound softener and let him do it, and just go with it if you can.

This is such a great tip for the OP - you can find more about this kind of approach by searching for ‘Intensive interaction’

Youre not alone! 3 yo ds non verbal and autistic. Hes in an elclan nursery 5 days a week (30 hours) and it's the best thing I've done. He gets to learn and socialise and I get to work and earn. He's starting a specialist school in Sept. I went through all this last year. The violence is frustration, trying to understand them better helps. We do lots of physical activities as that's what ds needs for his sensory processing. Soft play, trampolining, going to the park etc. Its been a huge learning curve but you will get there. Sending hugs

This sounds like my son and I pushed for genetic testing and it's just come back that he has a chromosomal disorder which tbh is a shock, but now understanding that I've got to handle him differently. We've started using makaton and it's really helped his understanding and communication, some kids just don't get that language is communication, but he totally understands signs and gestures now where before there was zero understanding of even basic things. It's reduced his violent meltdowns / head banging greatly!

My experience is a bit different as my daughter has what people usually describe as moderate autism (verbal but has 1:1 in mainstream).

3 was absolutely the worst age for me. She could communicate but not well enough to meet her needs and the frustration and meltdowns were absolutely horrendous. She would scream for literally hours at a time and we didn't know why.

For us things improved when she started nursery. She's always been in a mainstream setting but with good sen provision. They were the ones who really got things moving for us with referrals for educational psychology and OT etc.

You say you aren't on Facebook but I'd really recommend joining it. There will be local sen parents groups on there and it's the best way to chat to people in similar situations. See if there is a local carers charity, I joined ours and they helped me with DLA application and advised on other benefits etc.

Another practical thing.. melatonin. The mental health nurse can prescribe this.. it helps to get them to sleep earlier/better/longer allowing you to catch up on sleep. Lots of SEND kids are on it as the less tired they are the better they can process their emotions. X

@Contraversialcate
I'll do my best.
I have a good loving relationship with my family. Nowadays there is much more awareness of the needs of all family members, including siblings, whereas there was next to nothing when I was young. I know that you shouldn't compare today's world to another time so I don't feel aggrieved in any way with my parents that some things were missed. It took having a family and therapy to untangle some issues . I am a parent now to older teens and know that they too will probably have plenty to critique me with😆!
I'm not going to say too much because I feel a bit vulnerable writing in down.
•The "good child".

I never put a foot wrong. No tantrums, no crying, no demands, no being naughty. I was responsible and always did as I was told. I was a people pleaser in the extreme, from early childhood all the way till adulthood. No teenage rebellion, nothing that could put extra strain on a family where breaking point was the norm.
None of this was a conscious decision, I don't know even now, I might very well have been this way inclined anyway but looking back I feel that I have always hidden anything that could make things more difficult for my parents. I was old before my time.
I had various hidden breakdowns throughout my teenage years. Possibly due to circumstances, possibly undiagnosed ND.

This doesn't mean in any way that I didn't have a loving childhood. My parents did an amazing job, especially under the circumstances. I understand that picking up on smaller things, that might be noticed in a different family, isn't always going to be possible when you are fighting to keep the family afloat but there shouldn't be a comparison of what could have been had we not been a ND family. It's just that as people talk about things we can learn from them and hopefully make progress.

Just keep a close eye out for mental health in general. If you feel that your children are considerably better behaved and more mature than their NT peers then maybe chat to them about it. Likewise if they are considerably worse. Let them know that they too can have difficulties in life and they don't need to hide them away.

Have discussions about ND and NT every few years so that they can evolve based on development. The simplified version given when small isn't enough and can lead to a black and white view . This can lead to not fully appreciating their own struggles and those of others.

Keep reviewing the possibility of ND in other siblings, even through late teens. Sometimes it can be easy to presume that there is nothing because compared to a family member where the diagnosis was starring you in the face, subtle differences are harder to spot.

By asking this question it already speaks volumes of how thoughtful and good you are as a parent to all your children.

Thank you so much your response made me teary. I was the good child exactly as you describe and I’m terrified of my eldest following suit. Tho according to my dad she is much less of a people pleaser than me which I am actually happy about lol. Thanks again for taking the time respond