I'm dying

Hi Ellaey,

We've moved your thread into our drop-in clinic - maternal mental health, so you can get the advice and support you need

Hi Elleay

I'm Catherine, one of the Parent Supporters here at Netmums. Thank you for reaching out.

Elleay, it sounds like you are finding things really tough atm - sending you a big hug this morning. Can you tell me a little more about your daughter and your family? How old is your daughter? Have you been able to chat to any family and friends about how you are feeling? Have things always felt this tough? Sorry for asking so many questions but I just want to make sure we are sign posting you in the right direction for support.

Do you have any support services working with your family? Could you speak to school or your GP to see if you could be referred on for support? Would you consider linking in with Children's Services for support? They may be able to offer to do a Carer's assessment for you as well as a needs assessment for your daughter. Respite can be something that Children's services may be able to provide and might give you a break and a chance to spend time with your other kids.

Elleay, could you also make an appointment to speak to the GP about your own wellbeing? It sounds like you are finding things really difficult and your well being is really important too.

I'm also going to link the National Autistic Society here as they have lots of really useful advice and support on their website and also Help and support (autism.org.uk)

Hopefully some of our lovely community will be along soon to offer support. Please come back to us if you want to chat some more

Thanks

Catherine

Hi Elleay,

I’m sorry to hear you are feeling so low. I can empathise with you, and I’m sure there are other mums and dads who have felt like this. I have two autistic children and I know how hard it can be.

Have you approached school to see if they can refer you to some local services? Can you speak to the senco at school?

Sure start centres are often mentioned but I’ve found they don’t really provide support for children with additional needs.

the autistic society is good for help and advice. Sorry I am assuming your child is at school here so if they aren’t I’m sorry! School can free you to an occupational therapist as well if your child has issues around food/clothing.

my youngest can get quite violent, I have found reducing demands has helped, if you want to look into this it’s Pathological Demand Avoidance I think.

Remember you are doing the best you can, and it’s hard. You are doing an amazing job, from someone who knows how it feels to be anxious at school pick up and first thing, it does get better xxx

Bless you Elleay. You sound like you're really struggling and for that i am sorry. One of my brothers wives has a son who had really bad autism/adhd to the point he would destroy anything in his way aswell as get violent and she ended up giving social services a call explaining that she couldn't cope. They at first tried to helped while he was living at home but in the end she took their suggestion to put him in assisted living facility specifically for hard to control teens(due to medical reasons) and youngish children. He went to live there at 14 and aged out at 18 (not sure if they still do those as this was about 20 years ago) but still got help from SS in helping him get his own place aswell as a job. It was the best decision she made for herself, her other children and her son as they now have a better relationship. Its always worth enquiring about as a last resort if all else fails. Good luck and please let us know how you get on.

Hello Sharon,

When i read Elleay's post i was afraid of what responses she may get as things can get a little heated on here.

When i read your post I sighed a huge sigh of relief that she recieved advice from someon with lived experience ... does it come much more valuable than that?!?

So ... in the same vein as your message to OP i wanted to say to you ...

You're doing amazing, i bet your kids are even more amazing and i bet the future is going to be totally amazing (albeit with some very trying times but hopefully it'll balance out).

I think you're great.

Xx

Hi Deborah,

Thank you!

Hi, your not alone I promise, sometimes it's hard especially with sleep I recently found some advice as my own autistic daughter doesn't sleep well and was told to contact my paediatrician to ask about melatonin apparently levels can be low in autistic people and they can prescribe something to help if you can reach out to your paediatrician to ask about it I would im waiting for a call from my daughters paediatrician as she is awake all hours of the night and I have 2 other children who suffer as she's non verbal but does a loud shouting at 3oclock in the morning I dread to think what my neighbours must think! I hope you feel better and know you will have better days ! Much love x

Hi Catherine thank you for your response so I have 3 children little to no support as my family are not around and most of my friends do not have children but help where they can I'm single my daughter is 11 and she's the oldest my other 2 are 7 and 6 they are very helpful and I'm great full for that but I often shy away from outside activities because all she does is cry wine or run away so I avoid it although I bought Merlin passes with the thought that if we go on more adventures they will have fun and maybe reduce the stress level but no travelling is insufferable most rides my younger 2 need an adult because cannot leave my oldest side as she is extremely attached. Within in the house it's worse I have locks on everything but find myself often panicking if I have or not then if her iPad dies she goes to extremes to find something to mess up if she's not doing that she's smearing poo all around I Cant have a partner As I'm embarrassed by this I'm lonely as I've basically isolated myself as I Cant enjoy being outside or around other people with her she's getting stronger and more harder to create boundaries with yes I have contacted children centre before but nothing came to fruition I'm sad and depressed and I am constantly suppressing it to try get on with it but I feel like I'm doomed I don't want my kids to grow up without me but I can't bare continuously living like this I call Good Samaritans a lot to just release and that used to work but now it doesn't the school is currently applying for short break hours but I'm not hopeful as it took a year to get her on the school bus so probably this will take the same

Hi Elleay,

It's Catherine here again this evening - thank you so much for coming back to us again. Sending you another big hug - I can hear how tough it is for you especially if you have little support around you. I can see though you have had some lovely support from our community here who have walked their own journey with their kids and who have been able to empathise and support. I wonder how it felt to read their lovely support to you? Did it help to know you are not alone?

Lots of the behaviours you have described can be common for young people with autism. All behaviour has a function and it can be really helpful to have the support of a local service who could assess your daughter and provide some advice and strategies to try out. With the right support, things can get better for you all. You've also mentioned that your daughter can sometimes smear poo - this can also be for lots of reasons including for sensory. Has your daughter any support from Occupational Therapy? They can help by doing a sensory assessment and give you a few ideas to help.

I realise these suggestions might seem like a lot. It can seem daunting to reach out for support or to start ringing around different professionals, especially if you are feeling low, exhausted or burnt out, so I would encourage you to contact your local Children's Services/Social services team because they will be able to support you by advocating for you and your family and helping to co-ordinate some of these things as well as doing a Carer's assessment of what support you can have.

Please don't forget about yourself. I know you've mentioned the Samaritans there but please continue to contact them if you find it helps a bit. You do not have to carry all this on your own, especially when it affecting your own wellbeing. Could you speak to your own GP and let them know how tough it is? They may be able to refer you for some talking therapies which you might helpful. I'll link some information about that here: NHS talking therapies - NHS (www.nhs.uk)

Did you have a chance to look at the National Autistic Society website I suggested? They have Family Support available including some courses - I'll link it here:

Family support (autism.org.uk)

Autism Parent Support

It's great to hear that school are supporting you too and you have bought the Merlin Passes. I wonder if your daughter might be eligible for extra support when you use them, like when you are queuing? I'll link their guide here if you want to look into this to help make the days out more manageable and enjoyable for you all: Passholder Accessibility | Merlin Annual Pass

Elleay, please be gentle with yourself. What you have shared has already resonated with our parents so I hope there is more support to come from our community but please come back if you would like to chat some more.

Take care

Catherine

Hello Elleay

I am one of the Netmums Health Visitors. I am sorry to hear how tough things are feeling for you right now.

You have 3 children and being a Single Mum to all of them will certainly keep you busy, there is no doubt about that.

Catherine has asked me to take a look at your thread to see if I had anything else to add that may help. I do have a couple of suggestions.

I know your cup will feel full and overspilling right now, so I hope what I am about to say will help with that.

Catherine made the great suggestion of asking for more support with what you are finding hard. You have needs, and so do all three of your children and it is important that they are all met.

Elleay have you have heard of a Team around the Child? Some times called a TAC or a TAF (Team around the Family), you can read more about them here:

https://www.essex.gov.uk/how-to-hold-a-virtual-team-around-the-family-taf-meeting

This one is specific to Essex, but your local area will have the same support available. I'm unsure where you live, but a simple google search will help you find yours.

You can ask the School your daughter attends to arrange this for you. You don't have to this, make those calls or coordinate this. I would also ask them to get the School Nurse involved as this will trigger the right referrals to the right people to get things back on a track that feels better for you all. What do you think?

Also, there is another person here who seems invisible, but that person is the one holding everything and everyone together. I'm talking about You Elleay.

I would completely agree with Catherine suggestion to make an appointment to see your GP. They are key to getting you the help and support you may need. I know you may wonder what they could do for you - but thats why it is worth asking - right? Can you make sure someone looks after you too when you are looking after everyone else?

We are here to listen too, so please do keep chatting to us if its helping.

Best wishes

Tracey HV

Hi Elleay

I wanted to see how you was doing?

Your post showed on one of my emails, I wanted to reach out but didn't have the time right then so I had saved it to come back to as soon as I could.

First I wanted to say, you will not be alone feeling like this, many parents of ND & NT children will have had these feelings at some point, myself included.

I'd consider approaching your child's school & telling them how difficult it is for you right now & see if they would refer you to early help & get a support worker for you, to give you that support you need.

You may have a local mental health service that you can self refer too, often there will be a phone assessment & then you can get like 12 sessions (1x weekly) of CBT, or talking therapy. Just having that hour each week to off load onto someone can help.

Do you have any local support groups, autism groups? Facebook groups? Is there a short restbite service, like action for children?

I will share a little of my experience with you, so you can see, it can happen to others.

I have 3 children, 2 are grown up nearing their 30s, I have a much younger teenage daughter, they are all diagnosed with ASD. My eldest 2 their dad was killed I was parenting alone, but I muddled through. I then had my unplanned third, I knew by the time she was 1yr old that she had ASD, she was more severe than my older two. I was an older mum, ended up single & every breathing moment was about my youngest. The older she got, the more time she took away from me, I also was losing my mobility (that's a whole other story) eventually I had nothing left to give to others, I lost all my friends, I became recluse. Over the years I have felt, trapped, resentment, sadness, frustration, I felt terribly alone.

A few years ago I hit a really difficult time, I did not want to parent anymore, I was ready to run away & the most awful thing was that I said it. I'd never shouted at my daughter, yet I'd shouted 3 times in two weeks & I mean really shouted. There is a reason behind all this but i won't go into that, but in short, this child who had never really been naughty had found a way to get attention at school & get out of learning & what she had been doing was unacceptable, I was stunned, it had really hurt me & I felt immense sadness.

At this point I asked for help, early help became involved - not the first time but the other times were very much for my daughter, this time its focus was around me.

I needed help to see & feel the happier moments again, I guess. I was so fixated on the bad or more precisely my failings, I felt a failure, had no self worth & I no longer knew who I was, I was lost. Of course I never stopped loving my daughter, she was then & still is my entire world.

She's older now, still needs me pretty much around the clock, but there are little pockets of time where I get a breather. I still have little moments where I think to myself "I've been single for 16yrs & I probably never have a partner" and I feel a little sad, but it passes.

I hope today is a better day for you. If you ever want to message me, off load a little you are more than welcome. Take care x