I swear to God, sometimes I just want to give up and just stop. Life is so full of frustration for me at times that I just can’t cope with it anymore.
There is always and I mean always something that comes up or something that we have have to work around.
I wanted to take the kids to the park and let them have some fun, but Lizze can barely walk because of her knees and so I would have to do this on my own. In the frame of mind I’m in, I don’t think it’s a good idea for me to try this on my own. I’m tired and don’t feel well and these guys are so full of energy and anxiety, that they would be all over the place.
Life is frustrating because we are financially dead in the water.
The last paid writing job I had let everyone go due to downsizing. It was fun while it lasted but it didn’t last long.
No matter what we do, we can’t seem to get ahead of the game, especially when it comes all these health issues. I spent a great deal of time just driving back and forth to appointments last week.
It just feels like no matter what I do, it’s never enough. I can’t seem to find relief anywhere for anything.
Sometimes I just want to give up………
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I hear you on that feeling.. Prayers that more sources of income open up for your family.. What about selling items on ebay that can be dropshipped? I have a friend who works from home doing that and some accounting work alongside their disability checks to pay the bills. Her whole family has health issues, so she takes care of everyone too.
rmagliozzi
There are so many mornings where I wake up thinking “I just can’t do this/take this any more.” It’s been nearly seven and a half years of caring for my son (Down Syndrome, Autism, non verbal and now just recently diagnosed with developmental coordination disorder) on my own. And every night I go to bed marvelling at how I ever made it through another day. Lots of love and nothing but good, positive thoughts to you and your family.
T21ASDMommy1 I hear you. Thanks for the positive thoughts. I’m sending some your way as well.
Oh lostandtired (Rob) I so feel for you guys! We’ve been in much the same boat — we keep missing fun things that we could do with the kids because one thing or another going wrong. I wish it was easier, but when you have multiple kids with issues and adults as well, it is hard to make everything go just right. Going out to eat as a family? Going to church as a family? Going to a baseball game for the boys … everything becomes so much harder – and I know I hate it sometimes as well. It doesn’t seem right that we can feel like we’re getting ahead only to fumble back to the starting line again. {{hugs}} You guys can do it – we can too … we’ll figure it out!
KatMoody lostandtired thanks Kat. That was very well said… 🙂
Off topic: Rob, I just discovered an autism/disabilities blog at http://illusionofcompetence.blogspot.com/ written by an autistic person. You may already know about it, but if you don’t, it’s definitely right up your alley. That person doesn’t like Autism Speaks either.
MeaghanGood thanks. I check it out.
Every time I used to tell myself, “I can’t take this anymore” it turned out I can. I don’t know whether that’s an inspirational statement or just depressing.
Thanks
Do you take the time to take care of yourself? I know time is scarce … I have four kids, three with autism and two are severe, and a husband who is unable to walk much of the time he is home … But if you fall apart, it is going to do more harm than taking a few hours, going to the doctor by yourself, and maybe doing something you like. It took something horrible here to make me make some changes, and while dragging myself out of bed at 5 to go to the gym after an ugly night of autism-driven medical misery is not fun, that hour at the gym keeps me sane, and apparently healthy.
KathyBrower I do take some time to myself. I’ve been sneaking out to walk and that really helps me.
As the parent of a 25 year old, I would encourage you to occasionally step back and ask yourself, “Is this appointment necessary? What is my objective in keeping this appointment?” If you can’t give yourself a convincing answer, then give yourself permission to cancel it. I am fortunate that my son on the spectrum has always been verbal. On a few occasions, when a doctor suggested this follow-on visit or that test, my son asked, “If I go to that, is it going to make me any better?” And that question stopped every one of those doctors in their tracks…for no, nothing they were suggesting was going to change one thing about my son and his conditions. It might be interesting, it might rule out this or that, it might have a third set of professional eyes take a look…but better? No, they couldn’t tell him it would make him better. And so my son said NO…he had been examined and prodded and poked as much as he desired to be. If they couldn’t make him better, then why should he keep going through all this stuff?
I learned a lot from my son. I learned that the doctors didn’t have all the answers. I learned that their advice were suggestions, not commands. And I learned that sometimes a quiet Saturday at home was sometimes better medicine than one more round of therapy or one more evaluation. I am all in favor of therapeutic interventions, but give yourself permission to take the day off, the weekend off. And do it proudly, without regrets that you didn’t make it to the park or anywhere else this weekend.
VickiHillRiedel very, very well said. Thank you for sharing that. 🙂
VickiHillRiedel This was a biggie with us as well! We rarely go to the doctor, or the regular pediatrician – we are in contact with the boys’ specialist’s offices regularly but even then we tend to go only as necessary – I decided a long time ago that while the appointments can be necessary – they aren’t always. But we have a lot of awesomeness in this house – the guys have a rare disorder and epilepsy on top of autism, so sometimes we just can’t avoid going.
In any case – I think your son sounds pretty darn smart and kudos to you for listening to him!
We are in a very similar boat and we have felt this way also. We just make that day a very low key day, have a good nights sleep, wake up, pull up our big kid panties, and fight another day. Giving up is never an option. Big Hugs!!!