les63
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I'm Done
Aug 9, 2014 21:21:10 GMT -5
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Post by les63 on Aug 9, 2014 21:21:10 GMT -5
With autism. I'm at the last of my rope. I'm tired. No family life. All autism. It just beats you down every day. I'm going to be 51 this month and I don't know how much more I can take. I'm venting. It can be soooo damn hard!! My eyes are going to be so puffy tomorrow. Crying my heart out tonight.
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taz157
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Post by taz157 on Aug 9, 2014 21:26:47 GMT -5
I have no words but virtual hugs.
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Sharon
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Post by Sharon on Aug 9, 2014 21:27:43 GMT -5
I know you are just venting so no advice just and Hang in there Les you are a strong women.
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Nazgul Girl
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Post by Nazgul Girl on Aug 9, 2014 21:36:17 GMT -5
I hope that tomorrow goes better, Les.
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Shooby
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Post by Shooby on Aug 9, 2014 21:55:27 GMT -5
I'm sorry les. You must be exhausted. I hope you can get a bit of time to relax.
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busymom
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Post by busymom on Aug 9, 2014 22:26:41 GMT -5
So sorry, Hon!
DS has had his moments lately, too. I'm blaming it on the full moon! (Look outside!)
Tomorrow is a brand new day, so try to cherish those moments when they're wearing that halo, & behaving nicely.
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cronewitch
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Post by cronewitch on Aug 9, 2014 23:37:53 GMT -5
Sorry you are having so much trouble, at least you love your kids. Being a caregiver is exhausting and you want what is best for them so even harder. Try to find respite care maybe you can trade services with another family so you can have a day or at least a few hours off. Can your other son watch Noah so you can take a bubble bath?
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zibazinski
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Post by zibazinski on Aug 10, 2014 7:15:42 GMT -5
Then people wonder why that mom finally "lost it" and tried to kill her autistic daughter. No support no help but plenty of condemnation when she couldn't take it anymore. I only taught them for a small period every day. Some days were okay but some were awful and I did it without the aide because the aide needed a break, too. I couldn't teach them for the 5 hours a day the teacher had them so the rest of the time on the parents or usually parent because one parent usually was gone by then? No way. My hat is off to people that can do it.
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TheHaitian
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Post by TheHaitian on Aug 10, 2014 9:25:18 GMT -5
Les I would suggest you talk with another poster here... I forgot her name but will find it for you.
Her daughter doesn't have autism but another form of disability. Her daughter is in her 40's I believe and she has been in her care all this time.
I think at some point she was considering nursing home or something for her daughter so she could get to at least enjoy retirement with her husband without being someone caregiver.
It is hard, I am sure. But maybe finding someone you can talk to that is in somewhat the same situation will be less hard. Make it somewhat more tolerable.
*hugs*
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TheHaitian
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Post by TheHaitian on Aug 10, 2014 9:26:54 GMT -5
I got it, her name is patstab, screen name now is Patstab's American eagle
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Shooby
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Post by Shooby on Aug 10, 2014 9:26:54 GMT -5
I do wonder what is going to happen to all these kids down the road? But, yes, the caregivers are often criticized when they get tired. But, curiously the absent parent seems to get off scott free.
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zibazinski
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Post by zibazinski on Aug 10, 2014 9:53:43 GMT -5
Not only that but what happens when these parents die? It used to be kids disabled didnt live that long but now they do. Who is going to care for all these kids who outlive their parents but cannot function?
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Deleted
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Post by Deleted on Aug 10, 2014 10:19:46 GMT -5
Not only that but what happens when these parents die? It used to be kids disabled didnt live that long but now they do. Who is going to care for all these kids who outlive their parents but cannot function? 1 in 65 kids have now been diagnosed with autism. If the autism rates haven't increased, as some contend, but were merely being misdiagnosed all these years, what has been happening to all those now older adults with autism? There aren't that many, they didn't long, they are in prison or institutions?
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busymom
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Post by busymom on Aug 10, 2014 10:52:52 GMT -5
Sadly, a lot of higher functioning autistic adults DO end up in prison. It's the curse of not understanding actions & consequences (which, unfortunately, sums up my DS). Unfortunately, the courts aren't always that sympathetic. Or, perhaps, because some parents refuse to admit their kids are autistic (and yes, I have met parents who refuse to give their kids a "label", because autism is the "invisible" disability. You can't see autism at first glance like a lot of disabilities. It's observing behavior that gives that disability away.), the parents don't confess their child is autistic until AFTER they've committed a crime.
I do believe more kids have autism now than back when I was a student. I'm in a small school district, & we've got a LOT of kids on the spectrum. In fact, they're adding staff every year to deal with the increase. It's a great time to be a para, if you're looking for work during the school year.
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NancysSummerSip
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Post by NancysSummerSip on Aug 10, 2014 11:03:33 GMT -5
Les, it's OK to be at the end of your rope. Even saints have their limit. Go online and find your county's mental health/crisis care hotline. Call that number. Get help. You're not sick or crazy. But you're not able to do this alone. Even parents of non-autistic kids cannot raise children in a vacuum. Get respite care, for you and your child. Even if respite care means your child goes to another setting for part or all of the day. You have to let go. Someday, you will have no choice in the matter; you will not be here to do anything about it. I assume things between you and your husband are no better than what they were on your last posting, which means he cannot/will not be able to assist. If I recall, you have little or no family in the area, either. In this case, you need a network, preferably made of of people in your community, facing the same issues. An online community is helpful, but in this case, you need other bodies, physically within reach,for a real-life hug, or sit-down cry, or to help each other out with the daily chores of life, and particularly life with an autistic child. You've worn the superwoman cape for a long time. It's OK to realize it's not all on you.
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Deleted
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Post by Deleted on Aug 10, 2014 11:17:28 GMT -5
Sadly, a lot of higher functioning autistic adults DO end up in prison. It's the curse of not understanding actions & consequences (which, unfortunately, sums up my DS). Unfortunately, the courts aren't always that sympathetic. Or, perhaps, because some parents refuse to admit their kids are autistic (and yes, I have met parents who refuse to give their kids a "label", because autism is the "invisible" disability. You can't see autism at first glance like a lot of disabilities. It's observing behavior that gives that disability away.), the parents don't confess their child is autistic until AFTER they've committed a crime.
I do believe more kids have autism now than back when I was a student. I'm in a small school district, & we've got a LOT of kids on the spectrum. In fact, they're adding staff every year to deal with the increase. It's a great time to be a para, if you're looking for work during the school year. Interesting (bold). I didn't know this. I love watching shows like Cops and Jail, simply because I like to try and get into the heads of the offenders. I will see them demonstrating actions that tell me that they have no understanding of cause and effect. My DD once dated such a man. He couldn't get it through his head that if he spent his money on video games, he'd have none left for rent. It was always someone else's fault that he was constantly getting evicted.
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Shooby
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Post by Shooby on Aug 10, 2014 11:35:58 GMT -5
How old is your son les? And, what is going on that is stressing you out the most?
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les63
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Post by les63 on Aug 10, 2014 17:19:14 GMT -5
Noah is ten. What is getting me so down is after his surgery and being in leg casts for four weeks he is not much better. Still needs two of us to help him walk. He is starting PT on Tuesday so I'm praying he cooperates with the therapist. He cannot walk on his tiptoes forever; he will end up in wheelchair. He has these braces for night time. Even duck taping the Velcro he can tear those off. Noah just don't understand this is to help him. Keeps his tendons stretched out. Next week he is getting braces to wear on his legs that start below his knees and end into his shoes. My worry is that if he can't toe walk he will refuse to walk. He has missed Summer school which helps him not regress. September is fast approaching. Will he be walking by start of school? DH has been working since mid April. He has stabilized with the meds he is on. My other son is seventeen and he does watch Noah when I need to go the store. It is hard as a family because we cannot do outings together. Haven't for years. It can be depressing but I always pull myself up by my big girl panties. Things could be worse. Thank you all for the hugs. I just need to vent sometimes and would rather explode on here.
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Miss Tequila
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Post by Miss Tequila on Aug 10, 2014 18:51:49 GMT -5
Les, have you looked into respite care? I know you can't afford to hire sitters but I know some folks can get respite care through one of the government agencies. I honestly don't know which one but if you are interested I will give a about out to my group of friends with kids with special needs. I'm positive one if them will know
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sapphire12
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Post by sapphire12 on Aug 10, 2014 20:25:01 GMT -5
My heart aches for you les. I hope things improve for you and your family soon.
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mamasita99
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Post by mamasita99 on Aug 11, 2014 5:19:23 GMT -5
Les, I don't "know" you but as a teacher of children with severe behaviors due to autism and intellectual disabilities, I too send you hugs. And I would so offer to give you a few hours off so that you can recharge while your Noah is in good hands! (You don't happen to live in VA, do you? ) I know that the parents work beyond what we know we are capable of, and need some time off as well.
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toomuchreality
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Post by toomuchreality on Aug 11, 2014 6:24:26 GMT -5
Vent away, les. That's one of the things that this place (we) are good for, most of the time. If you keep it bottled up inside, you'll lose your grip, at which point Noah (and everyone else) are really going to be up a creek. My guess is that in PT they have ways of supporting and encouraging people, in order to get the desired results. They'll do things differently, to some degree, which may be helpful in other aspects of your/Noah's life too. That would be great, huh? (In the area I live in, it is the mental heath part of the gov'mnt programs, that offer child care/support. I checked in to it once, years ago. They seemed wonderful.) Big hugs (((les))) -tmr
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NancysSummerSip
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Post by NancysSummerSip on Aug 11, 2014 8:39:48 GMT -5
I'm glad to hear the husband is stable and the older son is helping, too. But it's not enough. You cannot be robbed of time as a family, even if Noah needs a lot of care. Your older boy is a teenager, and needs time and space to be a teenager. Your husband is working on his own health and recovery. And Les, you're only human, for heaven's sake. Noah's autism may well prevent him from understanding that everything you and the doctors and therapists do is for his own good. It's not a fault on anyone's part that this is hideously frustrating, time-consuming and downright maddening. But the hard work of all this needs to be shared and spread out a bit more.
Get respite care, either in your home or a daycare-type setting, through your county's mental health unit. This is not the time to be proud and refuse assistance, for even noble reasons. Pain, be it physical or emotional, is not your friend when it takes this sort of toll. He's only ten years old; you have a lot more of this ahead of you. If you're worn out now, what happens a year, five years or ten years from now?
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Wisconsin Beth
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Post by Wisconsin Beth on Aug 11, 2014 8:46:44 GMT -5
Hugs Les. So many hugs for you.
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greeniis10
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Post by greeniis10 on Aug 11, 2014 11:07:43 GMT -5
Really good to hear that your DH has stabilized and made some progress. I really hope that PT helps Noah! It's too bad they couldn't have started some sort of therapy while the casts were still on just to try to teach him how he would need to learn to walk, but I do really hope he gets through this.
Please listen to everyone else here who have suggested additional help! It's ok - you need to take care of yourself, too.
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HoneyBBQ
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Post by HoneyBBQ on Aug 11, 2014 13:03:47 GMT -5
I'm so sorry les. I know you are doing this mostly alone. I can't fathom how tired, sad, frustrated, etc that you feel. I have very little to add but to hang in there, and we care about you.
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Deleted
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Post by Deleted on Aug 11, 2014 13:19:22 GMT -5
Care giving is the shittiest job around. And, unless you have experienced it 24/7/365 for years on end, you have no idea.
I was told care giving often leads to a form of PTSD. I am finally starting to feel rid of the PTSD symptoms, but it has taken 3.5 years of the situation no longer being present to get there.
Hang in there and find some sort of help!
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Tired Tess
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I'm so ready to wrap it up.
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Post by Tired Tess on Aug 11, 2014 21:42:07 GMT -5
and prayers for you and yours.
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NastyWoman
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Post by NastyWoman on Aug 12, 2014 10:01:00 GMT -5
Les and I hope today is a better day for you.
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Wisconsin Beth
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Post by Wisconsin Beth on Aug 12, 2014 10:02:19 GMT -5
Les and I hope today is a better day for you. YEs, that.
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