Carers UK Forum

I just need to vent.
I have cared for my autistic son on my own for the past seven years. His father doesn't keep in contact and hasn't coped with his condition at all well, probably because he is on the spectrum himself. I had to give up my career that I loved because it was impossible to do everything with no child care or support from anyone. A while back I had an accident and needed surgery. My daughter, who was seventeen at the time, had to take on my caring duties whilst I was in hospital. My surgeon even contacted social services because he was concerned about our predicament, but the ******* social worker that came for a home visit said we were coping fine (!!). Her definition of fine is that I keep the house clean and haven't let myself go, that I feed and clothe and care for my children. It's not enough to say "I'm struggling", only neglecting everything and everyone would prove it. My daughter ended up self harming from the stress. In short, both my parents are dead and there has been no support. The usual story of friends drifting away over the years, yes - even the ones with autistic children of their own, - in spite of me trying to avoid that happening by not 'moaning' too much or not being completely authentic about how awful caring for someone 24/7 is. So it's always been in the back of my mind that I have been in a very vulnerable position.
Don't even get me started on the tragedy that parents are expected to support each other. We're all exhausted and struggling. Add the element of group psychology and dynamics to the mix and even going to support groups became another burden to endure. Some people cope by fighting the system. Well, I don't want to fight! Is that OK?
The grief cycle is so difficult to navigate. It's not only the grief of what I've lost - my self-worth from having a fulfilling career, or the friendships that have drifted, or feeling that I'd lost the only person who could understand and was my only ally on this journey. I've lost myself. I can hardly remember how I used to be. And if I do remember then it hurts. It hurts that I can't earn my own money and have control over my own life. I don't want to be a carer. There, I said it. I don't want this. I want to be how I used to be. I didn't knowingly get in to this and just because I gave birth to someone doesn't mean I'm an expert on his condition. I'm angry that society doesn't care for vulnerable people. I'm tired of being angry. I don't want to be angry for the majority of my time. I'm exposed to the worse elements of society and ignorance and frustration and it's depressing. All the self-help advice has an attitude of "if you try hard enough you can overcome anything". No you can't. No amount of trying will change the fact that unpaid full-time caring is demanding, exhausting and demeaning.
By some miracle, I found the most adorable, supportive and capable person. I've had trust issues after all the disappointment and hurt but he has patiently worked through it with me. When my son has a meltdown I get on a cycle of feeling bitter and expecting to be let down. Then I end up arguing with my partner. He doesn't deserve it, getting all the pent up anger and resentment caused by the situation. I feel isolated even though I have his support and understanding. How could he ever understand the fear and vulnerability I've endured? I feel broken. I feel my son's limitations have become my limitations. I feel exhausted from being exposed to the injustice and difficulties of living with (what society sees as) a disability. I'm a naturally resourceful, capable, happy person reduced to a quivering mess when the slightest problem can trigger a chain reaction that impacts my life for days. I feel like I have PTSD waiting for the next problem to happen. I feel if I'll be lucky if I live another five years because I am constantly stressed. Making our relationship work is hard work. There's been no honeymoon period where we can establish ourselves and bond as we'd be able to under 'normal' circumstances. (By the way "Married with Special Needs Children (A Couple's Guide to Keeping Connected)" by Laura Marshak and Fran Pollock Prezant is very helpful).
Last night my son had a meltdown. He wouldn't eat his dinner because I'd made it in the slow cooker. When I'd plugged in the slow cooker it had tripped the electric circuit. The PC was on at the time and it caused some minor problems, which I fixed. I also fixed the electrical problems AND made dinner. Go me! If I told anyone that has never cared the anxiety I went through trying to fix the problems before it triggered a meltdown in my son, I think they'd think I was exaggerating. So my son blames the slow cooker for causing the problems with the PC and no amount of explaining it was the socket that was the problem, not the slow cooker, would convince him otherwise. He didn't want to eat dinner because it was made in the slow cooker and he now blames the slow cooker for taking away his computer time. Then he had a meltdown anyway. That's what my life has become. I feel I have no control over any aspect of any of it.
I know that I'm saying very black and white things and that my perception of things doesn't necessarily mean they're correct. I need to get all of this stuff out of my head because the internal dialogue is driving me crazy today. I need to be listened to. I need un-judgemental, unconditional listening and since I can't afford therapy anymore this is the only option I feel I have right now.
If you've made it to the end of this then I want to thank you. Today I want to scream and cry and get back under the duvet. This is the last day I have to myself for about a month and I have things I must get done. I don't want to go out or speak to anyone but I must. My nerves are in shreds and I'm so tense from acting 'normal' when I feel I'm going crazy. Thanks for listening.

I have a hyperactive son aged 38, mental age 3 years.
You can't go on like this. I recognise all the feelings. Your son needs to be in permanently staffed accommodation. Then you can have him home when you want, but the responsibility falls on someone else. I know how difficult this is to think about, but it has to be. You are burned out, given so much for so long that there's nothing to give any more.
The SW sounds like many I've met. So time to get formal. When was the last Needs Assessment done for him, Carers Assessment for you? Find a Legal Aid solicitor, your son should be eligible unless he has a private income!! and let the solicitor fight the battles for you.
Promise yourself that this time next year it WILL be different.

Thanks for replying bowlingbun. That isn't an option for us because we are leaving this country. So, yes things will change soon and our situation will improve. The end is in sight. I needed to rant today, that's all. I don't expect anyone to come up with a solution for me.
I'm glad you found a solution that works for you and hopefully your quality of life, and your son's, has improved. I know how much it must have taken out of you and the heart ache it must have caused to make your decision.
For me, I found I had to be brutally honest about my capabilities and go in to self- preservation mode. I know my limitations. I have no fight left in me at the moment. I can't be this angry for the rest of my life. It's soul destroying. It's terrible that a system that is meant to work for people ends up being another battle to endure.
My husband provides support and security. Even saying that makes me feel guilty because I know it's not an option for some. I guess we have to find a way that works for us, even if it isn't completely what we want and we end up compromising.
I'm feeling very raw today. I'm sorry if my post triggered anyone. I should have probably kept it to myself.

No, it's sometimes writing your honest feelings down that really helps. I often find writing things down easier than saying them. We travel a hard road, others may want to tell us how well we are coping for their own selfish reasons, it excuses them from doing what they themselves should be helping with. Everyone's situation is unique, there is no "one size fits all" solution to our sort of problem. Sometimes we just swop one problem for another. All I can say is be kind to yourself. when you are having a "Rubbish Day" when you feel you just can't cope, be kind to yourself. You know yourself, you know when you are just too tired to function properly any more.

Thanks. That's what I needed to hear.
The tears came, finally. I find it very difficult to take care of my own needs, or even give myself permission to feel 'bad'. It really does help to write. I do that a lot but I don't often share it.
So, I prioritised and gave myself permission to not cope today. The essentials will get done eventually. I can't always practise good coping strategies or good self care. Going for a walk or a run or even eating well or sleeping aren't always options. I challenge anyone to try doing any of those things when a person that is physically bigger than you is demanding that you take care of their needs, right now! I never thought I would say this but I long for the days when I could put my son in his stroller and pacify him with his dummy. At the time I wanted him to 'progress' and be like his peers. As exhausting as it felt back then it's nothing compared to the exhaustion I feel now.

Hi Tilly
" No amount of trying will change the fact that unpaid full time caring is demanding, exhausting and demeaning"

Yep, that just about sums it up, and its even more stressful when you are having to watch every second to avoid meltdown. It is IMPOSSIBLE for one sole carer to do such a job year in and year out and its amazing you have coped so well and so long.

Please do accept that as your son grows and develops that somehow the load WILL need to be spread, whether that is through schools, college, allowing husband to help more, clubs, residential care, Carers, getting him more independent or some mix of any or all. You cannot continue trying to do the impossible and hurting and exhausting yourself.

Please do continue to rant. Yours was so apt, so knowing and so true. Perhaps re-read it every so often. I just wish there was more we could do to help.
Me, I do find the odd 'under the duvet and refusing to come out' session helps me, and yes the essentials do wait.
Kr
MrsA

Hi Tilly,
Welcome to the forum. I'm glad typing your post has helped you to vent.

I care for S who has autism. As a boy, employing autism strategies was enough. In mid and late teens, with hormones and undiagnosed health issues on the mix, he became very challenging. The moment he started to make the loud sounds that could (but not always) lead to a meltdown, I would feel my body tense in anticipation and prepare for self preservation. I too wished for my little boy back. He still has his moments, but thankfully at 26 we have come out the other side and he is less challenging again. When life is going well, I think I can carry on for a while yet but when he is going through a tough patch, I do wonder how long I can carry on doing this caring malarkey. I too am having to pysche myself up to have him home 24/7 over Christmas and New year. Not easy when the weather is bad, indoor places are too crowded and the friends we have, are busy doing the family thing - so we very much only have each other for company.

How old is your son?

I'm intrigued to know where you are moving to, if you don't mind saying?

Melly1

Thanks Mrs A & Melly for your warm welcome.

I have tried so much over the years. I was heavily involved in our local NAS branch, mentored mothers of newly diagnosed children. Learnt Makaton, got my non-verbal son (at the time) communicating. Went to groups. Asked for help. Applied through CAMHS for therapy for him, ended up paying for private therapy because the psychologist was condescending and the waiting list too long. I'm not over protective. I encourage my son to be independent.

To answer some of your questions - my son is 14. We are emigrating to America. My husband is American. He has a good job and we are able to move to a small community that is ideal for my son - lots of lakes, trees, forests (my son loves being in nature), a good community vibe, a good high school. We can buy a property that will accommodate his needs as he grows - he can have his own living space on the property but we can be on hand if he needs us. I accept that he may need longer to mature but fully expect him to find his niche in life and feel valued and be happy.

My son is what is labelled 'high functioning', which goes some way to describing him but also is a bit of a misnomer because his condition is as crippling as anyone labelled as lower functioning. He is acutely aware. He finds it difficult to accept that he is seen as different, and who can blame him? This attitude is also unhelpful for him because he hates to accept help. If I do find support then I have to attempt to persuade him to accept it. Finding the support is only half the battle. Fortunately he admires and has bonded with my husband. We will not always be around though and as we age I get increasingly concerned about how to plan for his future. I absolutely do not want his sister to have to care for him. She has been an absolute angel and star but she deserves to live her own life. Her childhood has been marred by society's failure to cater for her brother's needs. I am immensely proud that she has gone on to achieve against all the odds. I am immensely proud that my son is the person he is. We spent this summer in America. My son hadn't been on a plane since he was very young. As we took off he held my hand and I could feel his pulse race. He looked me straight in the eye and trusted that I would make it bearable for him. I adore him. He is my hero. He overcomes obstacles every day that most people can't comprehend. He is utterly gorgeous and courageous and so, so loving.

When he was younger my concerns were trivialised. The health visitor I first approached told me to stop comparing him to his sister. This was when he was 18 months old & completely non-verbal. Mothers generally have intact instincts. I felt incredibly protective towards him and sensed how sensitive and unusual a baby he was. It was only when he started nursery school and the staff there raised concerns that it was taken seriously. First lesson- parents know nothing, professionals know everything.

Then we fought and fought fought to get him every available service. Second lesson - you get nothing your child deserves unless you beg, plea and barter until you're blue in the face. Do not underestimate the power of sobbing in front of complete strangers as they attempt to remain composed and professional. Forget that you have been raised to be stoic and struggle on and are shy. Let it all out however uncomfortable you feel. Your pride and ego are strangers to you from this point on.

I've been probed, examined, and ripped apart in the process of trying to do right by my family. I've had to become something against my nature and I despise and resent it. It has amounted to nothing. I am back at square one, relying on my resourcefulness and the kindness of others.

It's heart warming and encouraging to know that others have survived and are further on down the line. Thank you so much for taking the time and being courageous to open up your hearts. It means more than I can say.

Wow Tilly
What a lot you have achieved. You've shot through the learning curve and could write the manual!!! (Which with your use of words would be brilliant )
No wonder your body is telling you you are exhausting it. Our beloved BB calls it Clapped-out Carer-Syndrome

I've no answers for your son's future, except as high-functioning he is likely to find a future that suits him - may not be your ideal, but he will forge a path for him.

I'd only caution about making promises now that time may change, as that often brings in extra uneeded guilt. I have a relative with autism (now 30) whose mother used to say she didnt want to burden his sibling, but now some 20 years on when they are now a responsible functioning adult she is handling more of his care over, and believe me, she has fought for him so many times. I have nothing but admiration for parents like you and her, who, while still reeling from one fight, have to pick themselves up and fight again, albeit a different battle with a different 'authority'.

And like in any war (I know it shouldnt have to be a war or constant battles but ce'st la vie and the English care system ) you, as both the troops and the general, need to ensure you are rested and replenished, because, sure as anything, there will be another battle to fight, on top of the daily stresses of caring for someone on the spectrum.

I'm glad you can celebrate his courage, lovingness and uniqueness.
I do hope America works out for all of you
Kr
MrsA

Goodness me Tilly! What an awesome person you are. My situation is so different to yours, but your strength shines through.