Ladybird579

I've been feeling really ill for weeks and finally got to see the doctor today. It turns out I am ill and unless I take steps to sort it I will die much younger than I anticipated. Of course I will take steps to improve my health but it got me thinking. What will happen to my autistic adult son once I am gone? Do I want to spend the rest of my life until I drop as his full time carer?

After crying and sobbing I realised burying my head over this was not going to change anything. I need to know he will be safe if I die in my sleep. So I've taken the first step on the road to getting him into assisted living. It's not what I wanted. His siblings were going to have him but that's not an option now. His dad is not an option. Never was tbh. No one is except his twin will care for him and I want him to have his own life. It will break my heart but it has to be done. Sometimes I feel like am trying to hold onto water in my fingers. I've felt like that a lot since I split with exah. There's not enough of me to go around.

I'd like to thank you all cos it's a hard decision and I would not have been strong enough to make it if it wasn't for the help and support I have had here

CentralOhioDad

That must be a painfully difficult and sad decision to make.

((((HUGS)))) to you

Ladybird579

Thanks COD. It is hard. He's 19 but he's still my baby.

CentralOhioDad

I was 40 when my Mom died - I was the youngest of the kids, and she still called me her baby!

Ladybird579

Awww. My eldest baby is 28. I've had a chat with my autistic son this evening about things I thought he found difficult to do. He told me he can do many of the things I mentioned but because I do them he never saw any need. ie he knows how to do an online food shop, change light bulbs, read the meters, do laundry and I already taught him to cook basic meals and he showers and dresses himself etc. It's got me thinking that maybe, just maybe he could be independent if I let go of the reins and give him space to do some of the stuff I've done. I could enlist the help of a disability organisation to help him with form filling for different things but he insists he can do them too. He does not know about the assisted living idea so it's not why he is saying he can do stuff.
I homeschooled him. My uni tutor says am a born educator so it's just an extension of that. Few autistic adults are independent but my oldest 4 kids have AS and they are. I m still going to look at options but I feel more hopeful now then I did earlier.

Mango blast

((((Hugs))))

I found the universe has pushed me into many things I didn't want to be ready for, and looking back they were healing for me in huge ways... and for the others involved, in their own ways.

I'm sorry you're dealing with these VERY tough healthy and life issues. One day at a time. May answers and solutions show up for you!!!

We care. YOU are important. Your family members are important.

You've been a great mom, educator and friend. With re-directing that focus, you can do this for yourself, also.

dawnrising

Just sending you a ton of love right now. I also have a son on the spectrum, you are doing the right thing to make sure no matter what happens in the future your son will have a place to go. Hugs

Hawkeye13

Sending you love and support LB
You are an amazing woman, for true

maia1234

LB,
Not to be difficult, but did you ever think that he might do well in a group home or with other peers? I had a friend that took care of a boy with special needs. The parents had him put in a group home with 3 other people. He struggled at the beginning but he is thriving now. He loves the interaction and is doing well. Dont feel that you are punishing him by reaching out. You never know what they can do until you push them to do it. Hugs!!

Blueskies18

I hope you can feel peace every day.
(Why is it that we feel the need to hold everyone up at the expense of our own calm?)

FeelingGreat

Ladybird, independence now could be a wonderful affirming experience for him. As you wrote, he's probably much more capable than you think, and imagine how good it will be for his morale if he can cope on his own with support.

I'm sorry to hear you're unwell, and hope your lifestyle changes make a positive difference. When you've had time to sort everything out why not let us all know what you've changed.

Ladybird579

No you're not being difficult at all and I am looking into options for him. There are good places but getting him in one will be very difficult. He falls between two stools cos I have taught him to do many things a person with his level of autism shouldn't be able to do. Most people in the places seem much less able than he is. People are shocked he can read and write and speak 6 languages when he is still in pull ups. Bless him. I feel more hopeful today. His dad is in rehab yet again and came up with some ideas on the phone last night too. Now if he would just stay sober life would be much easier. I cannot ever rely on him tho.

Ladybird579

I think it would be great for him to have a place he can call his own home and be able to do his own thing. Living with mama at his age can't be wonderful. I left home at 17. I could not have stood being with my parents a minute longer. I got a job and I was outta there.

I have renal failure. I had a nasty motorbike accident in my early 20's which was not my fault but my bike crushed my left kidney and I was left with only my right. It seems my right one wasn't that great either and its been struggling ever since. I've been close to a dialysis more times than I can count but I always seem to come back from it.

So health wise, I need to be very light...lighter than normal weight and it's hard cos I am not very tall too so I've got to get my weight down, eat plant based protein, not red meat and the doctor is changing my meds to see if he can "squeeze a few more years out of my kidney." It was at its best function when I did intermittent fasting but that's hard to keep up. Am bracing myself for one meal a day again tho cos I did feel better. Emotionally I am low. The doctor thinks I need to get out more and stop fretting. Easier said than done. I do feel abandoned at the moment cos my good friend is away in Asia and when he's back lambing season will be starting and my kids are so busy with final uni year they rarely visit. I also got conned...well kind of cos I knew in a way I was being conned, by a so called friend and that was hurtful. At least I can see when its happening now so that's progress.

In hard times the people who come through for me are always the ones I can count on as true friends and yet again someone reached out to me last night and cheered me no end and I did her so we agreed to have a regular meet up once a week once we are both better ( she had the flu). I think having one great friend is better than loads of acquaintances.

maia1234

LB,
You do have a lot on your plate. You know how to take one day at a time. Yes, eating healthier and getting out and exercising is a huge boost to our system. Weather isn't the best, but just a short walk helps. Its all about self care. Its hard for us codies to do that as we feel we need to help kids, family, friends and then ourselves.

Put on that oxygen mask first and you will have more energy to help "others". Hugs my friend, you are a survivor. Stand tall and shout that from the roof tops!!!

Ladybird579

Yes I absolutely hate winter. It never gets light here and it's depressing. However we are on the home run to Spring now. Thanks for your support. It means a lot to me

hopeful4

OH LB, I am so very sorry to hear this. Please know we are here for you every step of the way!! It sounds like you are raising a wise young man, keep doing that great work.

Huge hugs!

Ladybird579

Thanks Hopeful. He is lovely, unlike his dad . His dad surfaced last night. He phoned me after dropping off the radar the past 3 months. I never contact him. He is rehab yet again as inpatient. He has a 2 year free care package and was bragging about how it was like a hotel and he got all his meals cooked and a lovely room over looking a massive garden. He said it was a "good laugh" As an aside all you recovering/recovered alcoholics reading this would you have described rehab as a good laugh? I doubt it.

I told him I was ill and had suggestions off my doctor to look into getting our son some supported living. He went totally off on one about it. Ranting he wasn't having it and I can't do it and he would stop me ( he still has joint poa believe it or not cos taking parental rights off a parent in the UK is very difficult.) I must carry on caring for him, he said, it is my duty. Erm...I love this kid and have been there for him since I was expecting him so don't talk to me about duty.

He then went on about his life. He is going to Barcelona with his mates from the rehab and has just been away with them to a canal boat. He whined he needed to sell his house but cba to sort it at the moment. I cut him off at that point. He's been in long term rehab 6 times now and he hasn't learnt a single thing. It is still ALL about him. It would be funny if it wasn't so tragic.

FeelingGreat

Ladybird, just read your latest about your ex - what a waste of space, and I don't say that very often. The self-righteous rant about your duty is so ludicrous you'd think even he would see that.
I'd have been torn between telling him a few truths about himself and laughing out loud.

Ladybird579

I got off the phone and I did laugh. My other son came in and asked why I was laughing and I told him and he laughed too but he thinks his dad has lost the plot. He can rant all he likes but in the end it is up to our autistic son what HE wants not what exah wants, for a change lol.

OpheliaKatz

Ladybird, sending you love and support. Also, your ex is... an ostrich.