My 4 year old autistic son is making me suicidal

[WhatAMum01]

Hi everyone, don't know where to start, having such a tough time and it's really taken its toll.my son is 4 years old and diagnosed with Autism at 2.He's non verbal, screams/moans all day and will not sit still for a second. Im a person who doesnt like attention and he screams or moans loudly non stop everywhere we go.nothing stops him,no one can recommend anything
Its driving me crazy.It's so very exhausting and sochallenging.Myson won't concentrate on anything,he's on a waiting list for adhd assessment but would not get any medication until 6 if diagnosed.I can't take him anywhere anymore it's too hard,he's a runnertoo.feelslike really there's nothing we can do except struggle on.Speech therapy and ot haven't worked and the hv said he's just not ready to learn any other communication methods such as pecs as he's unabe tofocus.He pinches and tugs at skin and hair.He is severely autistic, the autistic no one really can do anythingfor.itsbroken me.I have two normal children who are stuck in this nightmare with me.what can I do?how can I calm him down?how can I live like this?

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Hi guys,yes we claim DLA it's minimal but as he's turning 5 soon it's under review as I've been told he's entitled to more as he's severe.The ABA is so expensive here in Scotland that the DLA wouldn't touch it.it's times like this I wish I was rich.it's somewhat a relief to hear from you that manic episodes do lessen with age. I live in hope of this being a possibilitiy.I've looked and there aren't any weekend play schemes anywhere I can access.He does start Special school in August ,I'm hoping that'll make some difference and if not just tire him out and give me breathing and thinking space.he's asleep just now and I haven't even turned the tv on as the sound of nothing is so beautiful. I dont get that when your faced with a child such as mine there isn't anyone in the health profession who takes total charge and directs you to everything you should do or try or take your child to.why is it made so hard?they say children like mine should have early intervention yet there isn't a nursery in my area that takes children like mine and works with them.thank you for the support

I wonder if you are entitled to more DLA? We are on the mid-rate of DLA payments and it works out £300 a month - which covers us for private speech therapy and OT appointments every month and anything that's left goes on sensory stuff / learning resources.

It sounds like your son should qualify for more tbh...

Something i found very helpful was getting professionals to help me fill in the DLA form. I used an advisor at my local children's centre. I'm sure that is why we got it through without any hiccups. It's such a hideous form to do...

Could you look into getting a safe-space/ safe-bed for night times? You might still want to be with him when he wakes, but at least it would save you following him all over the house.

www.safespaces.co.uk/

They are expensive, but it I think it is possible to find charitable organisations who can help.

Do you mind me asking whereabouts in Scotland you are? I am from the West of Scotland and have a 8 year old DS with ASD, I may be able to offer some suggestions of places you can take him or local support groups if it helps.

@goonergirl14 hi I'm also from west of Scotland. That would be so helpful, thank you

@reedsail that's so helpful didn't know these existed.would be ideal for my son

Are you registered with your local Carer's Centre? I am registered with mine (I am in Glasgow). To be honest I don't find them a lot of help they send me the odd email with info on upcoming support group meetings but they do have information on local activities suitable for children on the ASD spectrum. I have tried lots of things such as karate and swimming but often these have resulted in my DS screaming as it is too noisy, this is how he reacts when he is stressed or he throws his toys. Starting school will hopefully make a difference and give you the chance to meet other parents/carers in a similar situation, other parents are the best source of support I find. I am lucky as my DS has just started a weekend additional needs club, he screams when I leave him but according to the staff he soon settles. If you are in the Glasgow area I can offer some suggestions of where you may be able to take your DS, I have done so much research on these places to find suitable things for my DS!

Sorry you are struggling op. I work in a special school with 4-6 year old children with ASC. Your son sounds very similar to some of my class. Please don’t worry that the school won’t be able to meet his needs- special schools have all manner of resources at their disposal and also a wealth of experience.
He absolutely is ready for communication. In our school we use pecs and makaton from day one.
He also sounds like he is sensory seeking. Hopefully the school will help you to develop a ‘sensory diet’. Some things we use successfully; trampoline, crash mats, weighted blankets, chewies, orbeeze, shaving foam, water, flour, deep-pressure massage, scooting, climbing, tickling and foot-spas.
The school should also be able to help you to access services which could provide some respite for you and your other children.

@Goonergirl14 yes I'm in the Glasgow area too.be wonderful to get some advice on places I can take him and services I can access.tbh I don't leave the house much and friendships have dwindled as I haven't got the time to focus on anyone else.I try searching for everything on the net.the weekend additional needs club sounds amazing where is it?what's the requirements? I appreciate your support more than you could know.

Just adding to Jennifer's post - my comment earlier in the thread was only having 2 minutes but not wanting to read and run. DS2 is in discrete autism provision in a secondary special school and half the timetable, pretty much, is sensory and life skills. They have weekly hydrotherapy, which he loves, weekly Tacpac tacpac.co.uk/what-is-tacpac/ which he loves, rebound therapy www.reboundtherapy.org/ which he's increasing in confidence with and they also learn to use a treadmill, which helps to work out some wriggles and follow commands. He has loads of support, often 1:1 or 1:2 with a child he has a lot in common with in terms of personality and/or ability.

Of course, it's the summer holidays and he's really missing it (So am I!)

@jennifertirkington that's really good to know from a professional like yoirself. I'm really worried as he doesn't sit and is so extreme that they would say he's not suited to a class environment and then have visions of him being passed around different schools. He is very sensory like you say,does it mean that when they see this in him,that is all he would do most of the days at school?his sensory is part of his stimming and I'd worry he'd just be left to stimm allday, something I don't let him do too much as I want him to be part of the world,as hard as it is for him.

There is the Linn Park Adventure Playground which is for children with additional needs, it is used by schools during the week but can be used by anyone at the weekend. If you are on Facebook there are a couple of support groups for the Glasgow area, the Glasgow South one is great. My DS attends a club in Cathcart, registration is once a year in May at the AGM, we found out about it through his teacher, my DS always says he doesn't want to go but secretly I think he loves it he just doesn't want to be away from me and I get a bit of a respite and time with my NT child which it sounds like you need. I understand the thing about friendship but please believe you are not alone, I used to shut myself away and I still do to a certain extent but I attend monthly support group meetings and they are a lifeline to me. Hopefully over time things will get easier, I could never take my DS anywhere when he was younger, he would literally lie in the middle of supermarket aisles! Now he is easier, we go lots of places cinema, shopping centres etc, we always take his ear defenders and have a Plan B!

@goonergirl14 thank you. Your son does sound like he's had the potential to develop with from a young age??it's just not that way with my son, hes got no language and no understanding of anything, he just runs wild. it's so so stressful ;I'm just about surviving on a day to day basis.even these places like the club's will probably not take him as he's so full on.I fear there never will be respite for me.

I feel for you so much. I have a very challenging son, he’s 10 now & he used to make me feel suicidal. I could not cope as a single parent, I don’t know how I managed until he was 5 and I was alone. I honestly wanted to just die. So never kick yourself for it.

Recently I got social services involved & honestly, it’s the best thing I did. They have so much power to get you help & the things you need. I know it’s frightening because we hear so many horror stories about kids being taken away but honestly, give it a go. They will come to your home & assess what your needs are. For me, mines called Donna, she has done me wonders. She’s fought for my families needs and also got adult services involved to help me with my illnesses too. If you’re entitled to any help, your ss will make sure you get it. You are definitely entitled to respite, that’s without question. You should use it and feel absolutely no shame. Also here, there’s lots of play groups & play days for children exactly like your son, could you possibly try those? I know it’s daunting cos of his behaviour but these play days are for exactly children like that.

Big hugs, I honestly understand how you feel xxx

Also I’m sure you already claim this but if not, DLA, sounds like you could be entitled to a disabled car also... with that money you get for him, you could do a lot with him with & keep him occupied and buy him the things he needs, as that’s what it’s for. I get it for my son & it’s been a god send

@WhatAMum01 if it helps my now 14 year old didn't start speaking until he was almost 4, and was a terrible runner (he's thrown himself in ponds twice)

He still doesn't say much but he is maturing a bit and whilst he still needs constant supervision it is getting easier.

Things can change massively from the toddler days.

I echo what others say about getting in contact with Social Services, they are probably the go to people for help with respite. My son didn't speak till he was three and he went through the running stage aswell, clubs will take your son, there are children who sound similar at my son's club though they don't take children till they are five. Your DS is still very young, you may find some behaviours stop and others appear which may be less challenging hopefully! I do understand how stressful it is, my DS can be very unpredictable so going places is challenging, I know it is east to say but the calmer you appear can help the situation. I hope school goes well for him x

Are There any residential schools that might be able to manage his needs? Have you been offered any respite.
Please ignore the advice about ABA. Most autistic adults won have been subject to this have found it traumatic unless its very very sensitively done.
I think at this stage and age its about making sure that you have support

@Katherine gosh you sound like you were as desperate as I am now.I am currently very unwell on the couch and he won't stop with throwing stuff on the floor,climbing on the windows,on the cupboards, on the edge of the sofas on the kitchen counters ,he's thrown three glasses and smashed them ,thrown food all over all the floors ,pulled out every single thing from all the drawers.He will not sit still will nor focus on anything. My poor 10 year old is running about like a headless chicken trying to stop him.it's no life for any of us.he is only 4 but he's got worse with time. He's not progressed in the least.I feel like such a failure,such a complete failure.I think of suicide at least 5 times a day every day.I'm scared of social workers ,I just know I couldn't go down that path.thanks for your sharing it helps to know I'm not the only one going through this.

@BishopBrennansArse thank you for sharing .it does give me hope.was your son as challenging as mine too at that age?any pointers on how I can calm him down to sit still?

Honestly that was what my ten year old was like. He used to pure torture me. I had to have bolts fitted to the doors cos he would abscond and lock all the windows. I couldn’t take him anywhere because I’d get constant dirty looks or “told to sort my kid out”. Honestly it was SOUL destroying. It does get better I promise. My lad has calmed down a lot but got worse in different ways, such as school. He’s on his third now but that’s the authorities fault for ignoring my concerns and not diagnosing him & putting him in a special school which we are now on the way to. But it does eventually get a little easier in regards to them being so hyped up and disruptive. My lad still breaks everything he touches though, sometimes purposely or through heavy handed ness and his meltdowns are bad but I wouldn’t go back to age 4 if you paid me. I didn’t enjoy his childhood. I hated it. Was like I was being tortured. You’re not alone and it eventually will pass. Keep pushing at the doctors because that isn’t normal behaviour, don’t let them fob you off!!!

Just spoke to hv and asked about respite she's said it's so difficult to get as there isn't really much available ,she's coming to see me next week as I broke down and said she must try help me.wish me luck and strength. Thanks everyone

That’s great news, please keep me posted if you can

@Katherine I feel for you that they took so long to put him in a special school, was he not diagnosed in time despite his challenging behaviour? Is he verbal and have under standing? I've hated motherhood with him,sounds wrong and harsh but unless your living it people wouldn't understand. I've had more dirty looks and unwelcome comments than I care for and to this day am appalled at how people can behave towards a child who is obviously autistic. I'm glad you have some sort of peace now, gives me hope.

@WhatAMum01 mine was engaging in dangerous behaviour all the time. We still have a pin code lock on the kitchen to keep everyone safe and even today he floods bathrooms.

Two key things and neither are one size fits all situations I'm afraid. The first was finding a way to enable him to communicate- ours was via PECS and then weirdly he started speaking (but only to his own agenda, you can't have a conversation) when we got a dog. So research different ways to get him communicating - you can get apps for tablets now that work along pecs lines. Makaton? Those are all I can think of off the top of my head but there is bound to be more.

The other thing for sat down keeping still I never did find it. He still fidgets and wanders a bit. School work with it as it aids his concentration (special school),

One thing that keeps him quiet is tech - games consoles and a tablet. Some might say it's lazy parenting but sometimes when it's the only respite you get you'll grab it.