To wish I didn’t have my 3yo son?

[Thehonestbadger]

I’m aware it’s horrible but if someone gave me a button to press and he simply wouldn’t exist anymore I am confident I would, without so much as a second thought.

I love him; I do but I simply cannot pretend my life isn’t incredibly hard and shit because of him. He has ASD, is non verbal, has very little understanding of what’s going on around him or concept of danger. He suffers with PICA too so is constantly eating EVERYTHING and yes I mean everything.

He’s massive for his age; the size of a 6 year old and fights me tooth and nail over things like bum changes. I can’t go anywhere or do anything unless it’s exactly what he wants and there’s very very little engagement between us despite endless trying on my part. No one wants to look after him, my mum will occasionally as she knows how much I’m struggling but it’s hard for her I know that. Ive stuck him in nursery where he had a specialist 1:1 worker 5 days a week but it’s just a few hours and honestly the sound of him screeching and the insane anxiety over his constant unpredictable behaviour just ruin my life.

Worst of all, he has a 2yo sister, whose life is being so detrimentally impacted. I often just think to myself how amazing it would be to just have her; the freedom of things we could do; places we could go. All the ties and limits and restrictions lifted. I often feel like I might as well not have had my daughter because I never get to enjoy her and she’s always shafted off to family whilst I Labour on with DS in this weird kind of isolated purgatory, because family are willing to look after her.

we have all the appropriate support functions in place; all the experts and social services…etc. We’ve been on this path a long time now as it was clear from around 10 months that DS was not developing properly.
(I was already well into DD pregnancy by then).

Other than my mum family/friends don’t even want to spend more than 30 minutes in our company and I really feel that ‘oh god wtf is your life now? This is hideous’ feeling whenever they do.

I want to be one of those social media disability mums who are like intensely positive but I just don’t feel that way. The physical and emotional care he needs is just so depressing.

Yeah ,it doesn't work.like that 🙄
And you can scream and shout all.you want but social.services can't magic up.what they don't have .

I don't know which area of the country you are in but there is this residential school in Yorkshire.

I don't know if other similar places exist in other parts of the country.

https://hollybanktrust.com/what-we-do/

Not what’s right for the disabled child?

It is very brave to contemplate and discuss that you're unable to care for a child. And to ask for support when you need it. When my brother was a teenager he moved into foster care at the request of my parents because of the impact upon the rest of the house. I was 9 at the time. It massively improved the lives of all involved. We still saw him regularly but in a way that was manageable for my parents and siblings. He is now a very well supported thriving adult who has been helped to find a work placement that he can do, and lives with carers who support him be as independent as he can be. I have just come back from a lovely party with all the extended family, and he came too and I was just so proud of him and where we all are now as a family compared to what it would have been like had my parents tried to manage him themselves. My Mum has been able to enjoy her retirement and has hobbies, and goes on holidays. She now sees my brother fortnightly; they do an activity that they both enjoy, he has a meal at her house and then his carers collect him later on. It is a level of contact that benefits them both.

Sometimes the thing that is hardest to contemplate at the time ends up being for the greater good, down the road.

There’s no mercy for parents of child with disability.

I don’t judge you, it’s so so hard and there’s less than fuck all support.

do you get support from your partner?

rant scream on here.

I could have replied to so many of the lovely comments, but I’m doing bedtime alone so I’ve chosen this one as it’s so simple and lovely.

I feel like such a mess, I’m always ALWAYS scrambling for help, begging for family or friends to help me essentially survive DH’s work shifts. DS can’t manage more than a morning session at nursery and DH works 13 hour days frequently. There’s a pile of evidence, from every kind of expert imaginable that all says the same thing ‘DS needs constant 1:1 care and supervision.’ They quite literally explain in their reports that our home situation makes this impossible and creates an unmanageable situation but ultimately nothing is done about it, it’s just ‘acknowledged’.

Social services awarded him a PA for 3 hours per week!! And told me that was ‘really good because they don’t usually get anything at that age, he only got it because of his younger sister being in the mix’ WHAT?!?!

The level of anxiety and misery I feel is SO HIGH. I’m constantly terrified of something happening to DS and my being blamed for it, because they’ve acknowledged he needs 1:1 and they know I can’t give that so what happens if he eats a rock or coin or something he finds on the floor (I keep the house clear of any small parts but things happen) and chokes on it whilst I’m trying to potty DD or feed DD? Is that my fault? Will I be done for negligent parenting?
All this goes around in my head.

I developed awful IBS, I think due to the extreme stress and anxiety and honestly the noises DS makes just set me off so bad. I can only eat like 7 ‘safe’ foods, everything else makes me awfully poorly and all this is being investigated but I’m confident it’s stress as I didn’t have it before the kids.

….and in amongst it all, whilst I am giving just about 500% on a daily basis and feel like I’m going to fall down on the spot and cry most of the time, I simultaneously seem to be failing at everything. I can’t give DS all the therapies, technicals and approaches the experts keep recommending because I HAVE A TWO YEAR OLD IN TOW ALSO (no matter how many times I repeat this is never seems to sink in) and I can’t parent DD efficiently because I have DS in tow. And I’m just a big giant, frazzled, exhausted, whinging, emotional, MESS!

The only person who thinks I’m going a good job or that I’m strong or amazing (despite me having the entire ASD, EHCP,DLA,Carer and now entry to special school processes completely on my own alongside parenting, is my mum. Who is basically a third parent to my kids and not by choice, just because she understands from her own childcare career that my situation is actually totally unmanageable.

In terms of adaption/fostering. I won’t say I don’t think about it on the bad days, I do. I also won’t say ‘I WOULD NEVER’ because honestly there might come a time in the future where I would. I think the crux of it for me is that right now whilst terribly stressful and hard work both physically and emotionally, DS isn’t violent, he isn’t aggressive and he doesn’t pose an active threat other than to himself. I mean he has occasionally bitten DD but usually in retaliation to her biting him. He certainly doesn’t give more than he gets if that’s makes sense. He is HARD work but right now I couldn’t live with myself at the prospect of putting him into care. I think I also still hold out a glimmer of hope that everything we are throwing at him might make a difference.

He is progressing, albeit very slowly and it can often feel like trying to light damp wood as he’ll suddenly do something and we’ll get excited but then it’s gone and he never does it again. Lots of miss fires and misery.
I just keep telling myself ‘we might be that 1/10 (the odds paediatrician gave me for kids like DS) who start Talking and understanding improve to a level you can live some sort of regular family life with them.’ Even though I know it’s not likely, I still hope.

He has started making better eye contact and can be very affectionate (although this is him doing it to you and not a two way street if that makes sense- it’s also often very intense and can hurt, like he’ll cuddle me whilst trying to eat my hair) and his tolerance with other kids is very good from being at nursery. I feel like if he could just develop some reliable communication skills, It doesn’t even have to be talking I’d happily learn to sign or use a tablet…etc but he doesn’t have the mental capacity for any of it. He would be so much less frustrated, scream less, meltdown less and hopefully be so much easier to handle!

They do but not for a three year old and its not just something you can request and be given
Its a long slow process and based on the needs of the child.

It's been said multiple times here but people without SEN children are naive about the entire structure of support that they think exists.

We live in a society without the basics remember - councils cutting millions and millions from their budgets - shuttered up youth clubs, falling down playgrounds, parks with no toilets.

In the UK that we live in now schools do not have money for enough teachers/ TAs/ SENCOs - there simply is not money in LAs for funding the lovely 'respite care' that so many posters keep mentioning

Also - there just are not enough families and individuals who are offering their time to do this - just as OP can't cope with it, other people can't either.

The idea that there is some lovely caring foster family with open arms to take a child with this level of need - and that the state will just say oh sure hand them over we will give them all the care they need - at 3 years old!! It's ridiculous.

There are not even enough foster carers for children without additional needs

OP you are suffering and I'm sorry - all I can say is get as much breaks /paid for care as you can and push for every single bit of support from the council

Find friends in similar situations through support groups - that is the best thing about SEN parent life - the other parents you meet.

In OP's case yes I probably would, although fostering seems the most likely scenario.

This is going to sound awful but if I had other children then yes I agree with this poster and I also probably would.

This is what they say on their website:

We offer full-time residential care, as well as short breaks and emergency placements, where possible. We’re overseen by Ofsted and are registered for children and young people, aged 0-18 years. All our children have complex physical disabilities and associated communication, sensory and learning difficulties and our dedicated staff team is specially trained to support a range of complex medical conditions

Of course I realize that it would probably be very difficult to get a place there.

@Thehonestbadger
Aw it is just so incredibly tough . My heart goes out to you and I hear you . X

The only person who thinks I’m going a good job or that I’m strong or amazing (despite me having the entire ASD, EHCP,DLA,Carer and now entry to special school processes completely on my own alongside parenting, is my mum.

Well now two people think you're amazing OP.

Honestly, I have nothing but the utmost respect for you. What a woman. You are doing your absolute best in an impossible situation, both of your children are very lucky to have you.

Don't ever feel like you are not doing enough. You sound wonderful.

You are absolutely not being unreasonable.

I was where you are 3 years ago, all the way down to the small age gap between my DS and DD who came along shortly after. I remember feeling exactly as you do, worn down and hopeless about the future.

I wish I could tell you I found a the solution that made things easier at the time but truthfully I just muddled on as best I could, not always managing, but going with the motions.

I remember pleading with his paediatrician around the same time for clarification on how "severe" his autism was so I could get my head around what the future looked like for us, and how floored I felt when she said that he was "severely affected" and will likely always need a high level of care.

The shreiking, rigidity and inability to cope with doing any type of family activity, damaging property, aggression towards himself and us (and sadly sometimes DD) - was all off the charts.

Life is very different now DS is 6. He's unrecognisable to the child he was at 3. At 3 he was completely non verbal and we were coming to terms with the fact he may never talk. He doesn't stop talking now and is such a bright little boy. He had taught himself to read before he even spoke.

Because of his perceived limitations we hadn't even tried to teach him to read, instead we were just focusing on trying to help him learn to talk - so he taught himself and you could have knocked us down with a feather when he began reading sentences from books/magazines/his tablet.

The lack of understanding - that was something I was continually stressing to people who insisted he's going to make progress. I felt as though they just didn't get it. How could he progress when he doesn't understand things? It turns out he did. He just couldn't cope with the demands that understanding placed on him at that point.

I watched a documentary film called "the reason I jump" which was really eye opening. It featured a group of severely autistic teenagers who were non verbal and completely unable to talk. They were taught to use electronic communication devices and the way they were then able to hold conversations was amazing. Their grip on language and comprehension was in total contrast to how they were thought to be.

Sorry, I'm rambling now.

In short - things often do get better. A good special needs school was the best resource we could have hoped for and having that time away from eachother 5 days a week did wonders for our relationship. It's a pleasure to spend time with DS now. He still has his struggles, but nowhere near on the level he did before.

Him and DD have a wonderful relationship too. They are as thick as thieves.

Sending strength. Hang in there.

No advice. I just want to send you love and care OP. You sound like a truly amazing mother and an incredibly strong and brave person. I hope things eventually get easier for you all.

No.

Theyre serious and its a good suggestion too.

Let some devout oddball raise the kid

Does anyone on this thread know of a charity we could donate to that provides any practical help to people in the OP's situation? It's a horrible situation and I hate to sit by and do nothing.

Thanks for coming and updating. Sounds like you're doing so well; acknowledge that. Of course you can't give undivided attention to two children at the same time. Try to put less pressure on yourself.

Is he any good at choices? If you offer him two objects or foodstuffs will he choose one and take it from you? Or even just direct his gaze at one? If he can do that it opens lots of opportunities for communication as you can offer him choices in each hand (eventually even just verbally) and he can choose what he wants. But don't put pressure on yourself to do that now. He will be starting school soon (it may not feel soon but it is) and you can slip in picture cards or whatever they choose to try. It sounds like you're just the sort of parent the teachers will love. Proactive and trying everything as xonsistantly as possible.

Listen to your mum when she says you're strong and doing a good job. She's closest to the situation and so logic suggests she's likely to be correct.

That sounds so hard @Thehonestbadger . You’re doing a great job and your son is lucky. Your feelings are only natural and nothing to be ashamed of.

It you want tomhelp.I would look.for.local.small.charities ,in my area there are a number that.offer discounted days out and subsidised activities for disabled children They are also.a good way of getting parents in a similar position and ime,are always in need of funding ,I personally would not bother with national charities

I don’t know for sure, but one of the special schools we recently visited had a residential part and when we got there they put it into perspective just how hard it actually is to get these spaces. Firstly the child has to need significant care overnight, I’m talking several hours of care. So I imagine for ASD/ learning difficulties you’d have to present with significant insomnia also. Even for the kids who met this criteria they were massively oversubscribed and therefore you’d be lucky to get one or two nights a month at most.

What viewing special schools put into perspective for me is that there is a HUGE range of child disability. Imagine it on a scale so like 1-10.
1-5 is going to be tough but manageable. With minor family adaptions and inconvenience and struggles in mainstream but doable.
5-8 is going to be TOUGH these kids have significant needs that make running a family life around them incredibly hard. Parents are burnt out, at least one will have become a full time ‘carer’ and these kids aren’t suitable for mainstream but aren’t severe enough to get the coveted places in special schools so you’re stuck In purgatory ‘too severe to cope but not severe enough to be guaranteed help’
8-10 are REALLY disabled I’m talking the kind of disabled that makes you cry in the car on the way home from having seen them at the special school you just viewed. They need so much care, they either have no prospects of improving or a limited life expectancy and literally need prettyuch 24/7 care just to keep them alive. These kids (rightly so) get the first spots available.

I would put my son currently around a 6 on a great day he would be a 4 on a bad day he would be a 8. It all evens out, but there is not enough care to go around so those in the 5-8 category probably aren’t going to get it.

Considering adoption means putting your child first, as hard as it may be. Count yourself lucky that you never been in the oP's situation
X

Have you not read my posts?
Im.the parent of a severely autistic non verbal.13 year old with incredibly complex needs so.I think.I probably no far more about the Op.,s position then you .

My sister an adult now at 35 in a care home has a very happy settled life. But I remember the sheer exhaustion of my parents particularly my mother- no support until she was older and insane levels of craziness growing up for me (I was the older child) but it did get easier as time went by - connecting with other parents and school helped a lot my mother keep her sanity- it's hard OP

OP I'm sorry if someone has said this as I couldn't read all the comments.
I think you need to spell out in no uncertain terms to your DH that you simply CANNOT manage on your own any more. He needs to find another job that means he's home more. Then you can divide and conquer, each get time with your daughter alone to do nice things or even just sit and relax. It may mean your finances are stretched but if they can be, I think your mental health needs to take priority for the time being. I'm sure you'd rather a few less luxuries (that you can't enjoy anyway) and some peace in your week and quality time with dd.
I'm sorry that things are so tough for you right now, I think you're amazing for all that you do. I found mine hard at that age without any additional needs.
My nephew is autistic and was non-verbal and hard work at 3. Things did get easier and school was certainly a huge weight off his parents shoulders.
I think that could be your light at the end of the tunnel for now. Things will never be easy but, they will probably get easier in time. Sending big hugs xxx

But they have emergency foster carers? Should OP be in a car accident and end up in hospital for weeks they would have to find someone to care for the child, so surely that should be the case if the family is in crisis?

Also, any need for the eye roll really? 🙄🙄🙄🙄🙄🙄🙄🙄🙄