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I am on the edge

(39 Posts)
starsparkle08 Wed 29-Apr-20 19:52:53

I have a very challenging disabled son Primary age he presents with extreme behaviours and is hitting , kicking , biting me on a daily basis. Shouts at me , screams , won’t sleep . I average about 4.5 hours of sleep a night . The lockdown is adding a lot of pressure . Specialist School are having him a few days a week - I don’t work but this is due to his extreme needs . He is 2:1 but even with this many staff cannot cope and we are losing respite now as he targets other young people and staff . So it feels we are losing everything. When he was at school today , I walked down a footpath that crosses a railway line and I sat close by On the grass ( within safe distance )for quite some time thinking a lot about wanting to end it all. Obviously lockdown isn’t causing all our problems but it has escalated them and my mental health has deteriorated rapidly. I live alone and it’s just so hard

OP’s posts: |
Connie1972xxxx Wed 29-Apr-20 20:01:26

Hello there, I'm sorry you're in such a tough situation. I dont have a child with the needs your DS does, my son is autistic but is more withdrawn.
I've had the thoughts you have had and still struggle with them. Is there any other support you can access at all? Are you totally alone?
I've not much constructive advice but send you a hug, keep posting here. Do you have any friends nearby who you can talk to?

starsparkle08 Wed 29-Apr-20 20:11:04

The thoughts are just horrible aren’t they.
I do have family that I speak too but they cannot cope with my son . We do have various professionals involved and I’m trying to get support through them. Everything is harder to access with Coronavirus.
Also some of my sons behaviours like spitting are even harder to deal with due to the current situation

OP’s posts: |
Bellendejour Wed 29-Apr-20 20:16:56

Hello I’m so sorry you’re having such a tough time, you have a lot on your plate. Can you speak to your GP - I had been suffering from anxiety for a while then a quite serious work thing tipped me over the edge, I spoke to my GP and am now on a low dose of antidepressants and feeling so so much better. Other times I’ve been low I’ve spoken to Samaritans on the phone and over email, they were really helpful. Sending flowers and cake

FuckThisWind Wed 29-Apr-20 20:22:22

Oh my goodness. I'm sorry you are struggling, it's hard enough for most people right now. I sometimes despair at those who seem to have it easy. But then I feel really bad about it, as I've no idea of their personal challenges.

I have no real advice. But this is genuinely the first thread in my 10 yrs on MN whereby I didn't want to read and run. My sister had severe Downs syndrome. She used to attack us, attack herself, scratch herself until she bled. I had no support and neither did my Mum as this was in the 1970's. It was our normal. And we floundered. But if I was going through anything like this right now, I would wish for one thing and that would be that someone understood. Or someone at least was there. Even if it's just online.

We didn't have the internet in the 70s. And people were pretty fucking ignorant. But please keep talking. Because I am all ears. And am happy to listen. I may not be able to help, but I honestly truly know about 'the thoughts'

You aren't alone.

DianaT1969 Wed 29-Apr-20 20:22:58

Gosh, I'm so sorry. I assume that there aren't any drugs you can give to make him calmer and sleep at night? I guess you would already give them if there were? Lack of sleep makes everything 10 times worse and your days are already extremely hard. Please keep asking for help from any professionals in your life. Perhaps another school or facility can take him for the other 2-3 days if you push hard and let them know you are at absolute breaking point?
I'm hoping people with experience are along soon to give better advice.

TriangleBingoBongo Wed 29-Apr-20 20:25:56

I’m so sorry you’re in this situation. It sounds tough and it’s no surprise you’re finding it difficult. Can you escalate the help you’re getting/waiting for?

sweetkitty Wed 29-Apr-20 20:27:38

I’m a SEN teacher for children like your son, I’m frequently covered in bruises but never blame the child.

I am so worried about my children’s families right now as I know school is the only respite some get. It must be so so difficult, I hand them over at 3pm parents don’t have that.

I would speak to his HT they are there to support you, no one would think any bad of you, I certainly wouldn’t. Take care.

kidyoullmovemountains Wed 29-Apr-20 20:28:57

Sorry to hear this, it sounds so stressful. I would agree with getting some support generally from the GP for your mental health, perhaps consider calling Parent Line or Breathing Space for support over the telephone. You could ask your GP for a referral to a Paediatrician for a prescription of Melatonin to help your son with sleep.

tumbletastic Wed 29-Apr-20 20:34:45

I hear you op. I am so sorry you feel like this and I'm praying the lockdown eases very soon.
I have a dd who is 10 with ADHD, autism and uncontrollable epilepsy. My dh works outside of the house all day and most evenings and weekends.

I am exhausted. I am physically attacked everyday and have no support at all. No school, no physical help apart from dh at 6 pm if he's not working. My DD is in a special school setting and school know I'm struggling but there's no support there.

I spoke to Cahms and they said they would do a call with a Dr but that was 2 days ago. I too have feelings of wanting to self harm. We have no respite and it's really taking its toll now.

I'm sorry to wallow with you but I just can't say this to anyone in real life.

You are not alone, keep talking, keep getting any support you can grab. Keep posting x

pocketem Wed 29-Apr-20 20:43:12

How old is the kid?

N0tfinished Wed 29-Apr-20 20:47:07

I'm so sorry to hear you're in so much pain. I have a DS with ASD ID, non-verbal. My DS isn't aggressive but even so looking after him is relentless & wearying. I empathize so much.

This is a real crisis. If you're this distressed then neither of you are safe. I know it's difficult to admit sometimes. GP seems a good first step. Could you ask him/her to contact your social worker? A professional can often have more impact than a parent. You obviously need respite support.
Lots of love xx

sweetkitty Wed 29-Apr-20 21:06:35

We were informed that only if both parents were keyworkers could children attend school. We’ve been fighting this as we believe some of our families really need their child in school a few days a week.

Unfortunately I’ve found that it’s those parents who shout the loudest and kick up the biggest fuss that get the most support sadly.

starsparkle08 Wed 29-Apr-20 21:09:21

Thankyou for all replies so far - I will try to answer a few things
He is 8 years old . He is on medication to help him sleep ( melatonin )and medication for his adhd ( also has autism , learning difficulties and tics
)
I am on medication for my mental health and do see a psychiatrist also every few months or so -

It’s reassuring to hear that others in similar situations feel the same way and can understand ( although sad at the same time )

We fortunately have a very good social worker and she’s working really hard trying to find a new overnight respite provision but it doesn’t seem as though there is anywhere in county that will take him due to his behaviours as the risk it poses to other young children is too great.

I will get flamed probably for saying this but I told our social worker that I actually hope coronavirus will take us both as then we won’t be anybodies problem anymore. It feels as though life is extremely bleak for both of us.

OP’s posts: |
Bowbeller Wed 29-Apr-20 21:12:43

Really sorry.
It’s probably shit advice but for this emergency situation I would be asking the GP for as many drugs as they can give for both of you. Ritalin, antidepressants, melatonin, sedatives etc.
I’d also be combining households with a supportive friend or relative.
You can also contact social services for help or present at A&E if you feel this close to the edge.
This WILL all be over eventually. Please just do whatever you can to get through it x

Bowbeller Wed 29-Apr-20 21:14:34

Sorry-cross posted with you.
It is horrendously shit but please know that you are both valuable and worthwhile.
I have workEd with children with similar issues and even though they are challenging we truly do love and like them and we have the hugest respect for parents.

MoreCookiesPlease Wed 29-Apr-20 21:15:15

Oh OP... I'm so sorry for all that you're going through. Do you have anyone who could come and stay with you for a few nights just to give you some help and to look after you? Just make you a cup of tea? Have you got any family nearby?

Hollywhiskey Wed 29-Apr-20 21:15:33

I'm so sorry you're dealing with this. I don't know anything about looking after a disabled child but I do know about being suicidal. I have been and I have attempted suicide before. You're much braver than I was because you're asking for help and I hope to God you can get it.
Thinking of you and in awe of you 💐

Winter2020 Wed 29-Apr-20 21:26:28

Hi OP,
I'm so sorry that you are not getting the help that you need. Keep pushing your social worker to find you that placement. Could any one (family) stay over at yours so you can catch up on some sleep? Can you sleep when your son is at school?

I just wanted to say that if you are desperate and feel that you may be a risk to yourself or your son - and you can't get any professionals to help you or find respite then I would urge you as a last resort to tell your social worker and school that you will not accept him back from his school day (while he is at school). I know this goes against every instinct but it is better than harm coming to either or you. When there is no other option they will find you that placement or respite help but you might not be offered help while you are "coping".

Could you ask for a carer to come to your house to help? You must make your social worker understand that you are in crisis right now.

N0tfinished Wed 29-Apr-20 21:29:36

I know it's bleak. I often feel trapped in my own life. None of us asked for or deserve it. Could you ask for a referral to a pediatric psychiatrist? There will be other medication to help moderate his behaviors.

CompassNorth Wed 29-Apr-20 21:37:35

Hello OP, so glad you have posted on here and had so many supportive responses. This is simply impossible and it's too much - it is not your fault, and I'm so sorry you are going through this and in such a bad place.

I echo the pp who said if you need to, don't pick him up from school and notify the SW that you can't take him home. The whole point of these distancing measures is to save lives - not to risk lives by pushing parents who were already stretched to the max past the point of coping - so you absolutely must call time on this by leaving him at school if you need to.

This is an impossibility hard situation and you need to do whatever you need to in order to protect both of you from harm, until lockdown eases and you have more regular support. Wishing you the very best

Andorra155 Wed 29-Apr-20 22:10:40

I'm sorry I don't have any practical advice but didn't want to read and run. That sounds very tough. Please continue to reach out. I really hope your social worker can do something to help you both.

calmernow Wed 29-Apr-20 22:33:48

Please try changing his diet. This is the perfect time to try. Screaming and not sleeping sounds so distressing for him and you. Please try an elimination diet before medicating him. Cutting out a problem food or foods can make a drastic difference to a child's behaviour. Gluten, dairy, soya, corn, additives. There is a huge amount of research coming out on the link between the gut flora and all sorts of conditions and between psychological disorders and nutrition. eg
cspinet.org/new/adhdpr.html
medicalxpress.com/news/2017-11-nutrition-key-role-early-psychosis.html

Noooblerooble Wed 29-Apr-20 22:51:48

I didn't want to read and run - I'm so sorry you find yourself in this extremely difficult situation. I'm not surprised you feel desperate. I hope someone is able to offer some help in real life. I will be thinking of you. This pandemic is much (much) tougher for some than it is for others and you deserve all the support in the world.

Hellenbach Wed 29-Apr-20 23:27:07

I'm so sorry to hear you've been left unsupported and pushed to the limits. It sounds awful for both of you.
Sadly I think it's a familiar situation and it shouldn't be like this.
You probably won't get help until your mental health is at breaking point, which it sounds like you've reached.
Can you call your local Mencap office and tell them how badly you need respite?
Do you have a local Parent Carer Forum? Each local authority should have one.
They can offer support and advice too.

You're not alone, there are people out there who can help.

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