I am a mother to two young children, one with a severe, lifelong disability that affects every aspect of our lives. My life has been dictated by the needs this condition creates for years and I am drowning!
Financially our family is barely staying above water. My partner works which renders me ineligible for any govt financial assistance, yet we have lost an entire full time wage due to the condition our child is living with and I can’t return to work due to the needs associated.
Mentally, I have been put through the wringer. My mental health is in tatters and is only made worse because things have no prospect of improvement. This condition is lifelong and the needs that come along with it will only change, not decrease. I am facing the rest of my life living like I am. It’s only been 5 years and I already do not want to live like this anymore. How will I survive another 40-50 years?
I have seen psychologists in the past, however it is just not helpful. I do not find breathing or self affirmation helpful when I know in reality it changes nothing. No matter how many times I tell myself just to get through today or that it’s going to get better, I know that reality is once I get through today, tomorrow and every single day after that is going to be just as hard. No positive mindset is going to rid my family of this disability- it is permanent and lifelong.
This is an impossible situation that has no prospect of improvement and adequate levels of support are not available. I’m drowning and my mental health is the ultimate victim. When I mention to anyone the way things are, mostly people will come out with things like “only you can change your situation” and tell me that my partner “needs to help out more”. Like yeah, I can’t just decide I don’t want my son to be disabled anymore and change it can I. And you know what, my partner would be more involved except we have lost an entire full time wage and also been rendered ineligible for any govt assistance due to his wage (which is nothing special mind you) so he has to work more to make up the GAO left behind doesn’t he? So he is off at work trying to keep us afloat financially all while I’m at home being destroyed mentally with the burden of everything else.
And the support systems that people with typical children often have to lean on aren’t there because aunties, uncles, grandparents, friends can’t “cope” with your child and they just than their lucky stars that they don’t have to all the while leaving you to do it 100% of the time without any help or support as if it’s easier for you because it’s your child. Like it would kill them to make the effort even once, just try, just once.
And then people wonder why parents with children with disabilities commit suicide or worse. Trust me, it has crossed my mind more times than I can count!
11 Replies
There is SO much in this post and I don't think I could possibly answer everything but these are just some things that just out at me.
You are amazing. Hands down, without a doubt, an amazing person, mother and wife. Never forget this. Whilst I cannot personally understand your situation, dear friends of ours are dealing with a similar situation - their little boy has an acquired brain injury. here is no 'off' time. There is help that 'a few deep breaths' bring for them. HOWEVER - they found help from people with special needs children - both physical groups and online support. People who 'get it' without giving you the looks of horror when you pour your heart out. The mum says that those parents (some are in AUS and some are international), get 'it' - their lives, their fears, their breakdowns. May be facebook or blogs might be the way to connect you? I'm hoping someone where might be able to assist you a lot more than I can.
Is there a way for your to seek out a psychologist who specialises in parents with children with lifelong disabilities - its not just a simple 'buck up, take a few breaths and you'll be ok' kinda thing. This is a marathon. A life-long marathon, but there should be help available to you - both for your physical and mental well being. A good, experience psychologist in this area, should be able to have a bit of an idea. May be even places like TLC and Very Special Kids - they might have contacts that could help you with finding the right person.
I assumed that there is some respite care for parents available in each state - but this is probably over-stretched and under-resourced. I'm sorry that your 'village' of people are not there to help. It's unfair - you need help and support, and I do hope somehow you'll find it.
I wish I knew how to help you. I hope some amazing IMs here can give you help.
You are not alone. Your family is not alone xx
Thank you for your kindness. I really do appreciate it. I am in a few Facebook groups. A couple of groups with parents of children with the same condition and a couple of groups with families living with a wide range of different needs. I’m honestly past that. Those people get it. But having someone that understands is not helpful at this point in time. I am so burnt out that I regret having to wake up each morning and deal with it all again. We do not get respite because our son is young. It is deemed that it is parental responsibility to provide all the needs for a child that age. Thank you NDIS for your help and wisdom.
Have you spoken to your GP about your depression and anxiety? (I’m sorry if I’ve missed it in your post). Maybe it’s even PTSD that requires treatment.
Praying for you hun, it’s not easy and as a fellow SN I get it. Xo
I don’t have depression or anxiety.. I was diagnosed with adjustment disorder. Which is a failure to cope with big life changes. In my case it is a physical inability to do everything that needs to be done while also taking care of myself and having any identity other than special needs mother. There is definitely no PTSD. I accepted my sons diagnosis a long time ago. Unfortunately acceptance doesn’t change the pressure and added stress that comes along with such a diagnosis while trying to deal with a complete lack of support.
Respectfully reading your post I disagree. Repeated and ongoing stress can have detrimental effects on the body. And you may not feel suicidal.
Read your post like you didn’t write it. What advice would you give?
The post had a lot of repetitiveness in it. She's really only talking about a few issues, but feels unheard and unhelped in life, hence the repetitive nature of the post. She knows herself and her feelings, and although you mean well, I think that you shouldn't be diagnosing her on here even she has clearly said it's not anxiety. She has already got a diagnosis for herself from her dr. Also suicidal thoughts can happen to anyone. Not just those with full blown mental illnesses. Constant stress can absolutely cause it too.
I didn’t diagnose her - I asked if she had talked to her GP about it. I could be completely wrong but having a conversation with a health professional may be the first step in (like you say) being heard and acknowledged. SN parents are at a higher risk of many physical and mental health conditions. Those ongoing conversations are important for her and for getting additional NDIS funding to better support her family.
I’m the sole carer for a 25 year old with severe multiple disabilities. If I had to put an intellectual age on him I’d say he was 4 years old. He is non-verbal epileptic and awake for up to 6 weeks at a time.
I’ve done it all on my own until the last 6 years, when I started getting 12 hours a week of support from the government. Now thanks to the NDIS (we finally transitioned last year) I get more than 9hours a day off and recently went on my first holiday. Yes it can be relentless but things have changed and are continuing to change support wise and has your son ages you will find there is a lot more support and a lot more help.
Next year I’m planning to return to work.
My point in this is things may feel relentless now for you, but that won’t always be the case. If you feel you aren’t getting enough support for your son it might be worth contacting a disability advocate or if there is an association associated with your sons condition(s) it maybe worth contacting them in regards to your sons support plan to see if you need to lodge a change of circumstances/appeal or prepare for how to get more supports in the next plan.
I know it can feel overwhelming. I promise you it won’t always feel this way.
As I said I got to go on a holiday and there will be many more holidays, and I’ve gotten back to hobbies etc. many of my friends with younger children are reporting they are getting a lot more help now too.
I’m not going to pretend to have all the answers but I will say you can get through this. I find Facebook groups related to my sons disabilities really supportive and a lifeline to the world.
Whenever I read your story, I think, gosh, mines nothing compared to yours.
You’re amazing xxxx
I’m a single mum with a child with lifelong disabilities.
The appointments, the operations, the treatment, it’s tough and juggling it with work, because we have to eat.
But the worst is seeing him suffer, kiss goodbye when they wheel him in for another operation when things we take for granted every day he can’t do.
I also have mental health issues.
But I just think, if I don’t stay positive and strong, who will?
My child deserves as normal a life as possible.
Look at the positives, you have a husband out there working hard so you can be there for your child.
When I feel sorry for myself I always think, imagine if my child were born in a third world country, none of this treatment would be available for him. How would his life be?
Theres no magic door to your new life. Your life is now. And exactly "only you can change your situation". Doesnt mean thats not crap, doesnt mean you dont want to punch there face in and scream as if u would frickin know! You are doing a fantastic job of it all by the sounds of it. And your job and your partners job is no competition your both doing your bit. You need to grieve the life you once had. You are a carer now and my goodness what a job that is, your better than most people to even get to this point to feel this way. Good bloody on you. Hold your head high, dive into that sh*t and be proud you are a carer. Check out carergateway.gov.au. there are so many services out there, which is a minefield itself. Life changes,, eb and flows. Own it. Make a plan to own it.
And, people don't wonder why parents with children commit suicide or worse... their heart breaks that they couldn't or didn't lend a helping hand, or find the words or actions to do so. And if people did wonder why well, like I said they ain't as half of a human as you are for feeling like this, they are the true shi*t in life... Your situation isn't true evil shit it's your life and it's real and you got this better than most. Xx