We don't even realize how good we had it until we are in one of those brand new phases and I'm looking wistfully back at them. Thinking about them like they were the love that got away while humming Cinderella's "Don't Know What Ya Got Till It's Gone."
But I digress...
The thing is, these behaviors and challenges, they can grind a gal down. Seriously, this autism stuff can be really, really fecking hard. Since it doesn't really ever let up, how do we keep going? I'm not trying to be deep by asking a rhetorical question here. (Honestly, this is a blogger that frequently quotes hair bands and drag queens. How deep can I be?) I just don't know the answer and it worries me that when I think we have a steady grove going that we can manage, it goes right out the window. Probably following something that the Kiddo threw out before it.
What are we suppose to do when we crack...
The logical go to is to take a break but please someone explain to me how I can do this. We have no sitters. No respite still from the state and I don't see that changing anytime soon unless a whole lot of people either move out of the state or die. We have family that can help from time to time but they also have their own families and their own lives and we can't always expect them to help out. Plus when things with the Kiddo are rough, I really don't want to anyone else having to deal with it. I know. I know. That's my own issue but I just don't feel right leaving him with someone when I know it's one of those "because Autism" days.
I also feel so incredibly guilty being frequently burnt out by this all that I don't even want to admit it that I am. This is why I often don't even bother asking for breaks. I literally don't feel like I deserve them. I feel by asking permission to take one, I am failing him.
And look what I just wrote! "Asking permission". For a freaking break. That's insane. Why do I feel like I even have to ask. There are plenty of people that just know they need one and take it. Who am I asking for permission? I guess myself more than anything.
And another thing, (Yeah, I need to rant a bit on this one.) I will post this and many will say "Screw anyone that complains. They don't get it. They must not be parents." While I will agree with this to a point, I also know there is a good chance an autistic adult will read this and take it completely in the wrong way. They will think I am talking about them. They will think I don't love my Kiddo. They will take it that I am selfish. They will tell me to "listen to autistic people", which I am down to do but I've been blogging for six years now and not one of them has told me what to do when I feel like I'm going to crack. Not one of them has offered advice on how to regroup. I keep listening but when it comes to the topic of parental burnout, not much is said. By anyone of any neurology. We just get crapped on to do better but not how.
Oh wait, sometimes I've been told it must be something I am doing to set off my Kiddo. Now look, I totally jam with that whole "behavior is communication" thing. I am just really tired of being told online at every single turn it must be something I've done. Trust me, I am trying. Constantly. I accept a lot of changes in my life because of autism. Multiple times a day. If I am totally at fault for everything that happens here, feel free to take him off my hands for a couple of days. Cause I am running out of ideas.
Now pardon me while I go off to hide in the bathroom to play Candy Crush while listening to 80's hair band power ballads. Right now, that's my go to for when I feel like I'm going to crack. Maybe you could share what's worked for you.
Power ballad time! Get your lighters up. You see kids, in olden days we didn't have cell phones to hold up in concerts and were forced to use cigarette lighters. Which we held by our very highly teased hair sprayed to the gods heads and it's really a wonder we didn't all die in a great big ball of fire at a concert.
But I digress...
The thing is, these behaviors and challenges, they can grind a gal down. Seriously, this autism stuff can be really, really fecking hard. Since it doesn't really ever let up, how do we keep going? I'm not trying to be deep by asking a rhetorical question here. (Honestly, this is a blogger that frequently quotes hair bands and drag queens. How deep can I be?) I just don't know the answer and it worries me that when I think we have a steady grove going that we can manage, it goes right out the window. Probably following something that the Kiddo threw out before it.
What are we suppose to do when we crack...
The logical go to is to take a break but please someone explain to me how I can do this. We have no sitters. No respite still from the state and I don't see that changing anytime soon unless a whole lot of people either move out of the state or die. We have family that can help from time to time but they also have their own families and their own lives and we can't always expect them to help out. Plus when things with the Kiddo are rough, I really don't want to anyone else having to deal with it. I know. I know. That's my own issue but I just don't feel right leaving him with someone when I know it's one of those "because Autism" days.
I also feel so incredibly guilty being frequently burnt out by this all that I don't even want to admit it that I am. This is why I often don't even bother asking for breaks. I literally don't feel like I deserve them. I feel by asking permission to take one, I am failing him.
And look what I just wrote! "Asking permission". For a freaking break. That's insane. Why do I feel like I even have to ask. There are plenty of people that just know they need one and take it. Who am I asking for permission? I guess myself more than anything.
And another thing, (Yeah, I need to rant a bit on this one.) I will post this and many will say "Screw anyone that complains. They don't get it. They must not be parents." While I will agree with this to a point, I also know there is a good chance an autistic adult will read this and take it completely in the wrong way. They will think I am talking about them. They will think I don't love my Kiddo. They will take it that I am selfish. They will tell me to "listen to autistic people", which I am down to do but I've been blogging for six years now and not one of them has told me what to do when I feel like I'm going to crack. Not one of them has offered advice on how to regroup. I keep listening but when it comes to the topic of parental burnout, not much is said. By anyone of any neurology. We just get crapped on to do better but not how.
Oh wait, sometimes I've been told it must be something I am doing to set off my Kiddo. Now look, I totally jam with that whole "behavior is communication" thing. I am just really tired of being told online at every single turn it must be something I've done. Trust me, I am trying. Constantly. I accept a lot of changes in my life because of autism. Multiple times a day. If I am totally at fault for everything that happens here, feel free to take him off my hands for a couple of days. Cause I am running out of ideas.
Now pardon me while I go off to hide in the bathroom to play Candy Crush while listening to 80's hair band power ballads. Right now, that's my go to for when I feel like I'm going to crack. Maybe you could share what's worked for you.
Sometimes the dog pitches in and keeps him busy for me.
At the moment just me breathing is enough to set my son off. God help everyone if me and his sister are both breathing! I cannot offer any pearls of wisdom about how to recharge. But I hope a massive snotty, messy, eye puffy sobbing mess of a cry, an extra strong coffee and knowing that others are also walking this path and have your back (as much as I can from the UK) helps. XX Stay strong Mama Fry.
ReplyDeleteI am a single mom with a 12 year old autistic son who is bigger than I am. I take the blunt force of everything. Every scar on me is a reminder of a meltdown that I survived. I have locked myself in the bathroom, attempted to call for reinforcements (his dad) which doesn’t happen often. I take it day by day, sometimes hour by hour or just a minute at a time. We had a bad week this week and I dropped him off at his dads yesterday. I told him that it wouldn’t end well if I couldn’t get 24 hours of peace. It’s hard being a special needs mom. I don’t get time for myself like everyone else. I don’t have a million people I can call on to come to the rescue. Just breathe, try to do your best and I cry (a lot). Hang in there.
ReplyDeleteI am right there with you Mama, we have no respite either! I feel your pain
ReplyDeleteThere are days where I feel like I am going to lose my mind and I pray for bed time just so I can get some quiet time to come down from the day. I feel the pain.
ReplyDeleteGo ahead and "crack"... allow the "kiddo" to see it...allow him to understand your frustration...it might help him to understand that you don't always have the answers nor do you always have the ability to cope...allow him to see it's not only he that has meltdowns...it might teach him coping on his own. My son saw me lose it...he saw me crack, and he attempted to sooth me...we had a "moment", if you know what I mean...he looked at me...he "saw" me...and we were better...we weren't perfect, but we were better...
ReplyDeleteSometimes when I’m near cracking I take mine to the doctors. I say help soemething is up. For my allergic boy who doesn’t communicate well, it’s often sinus or ear infection. Other times they don’t have a clue. And we carry on because we have to. I too hide out in the bathroom when nearing the end of my rope. It’s now equity with chocolate, scented candles, and snacks. Lol. Yup, I keep comfort foods under my bathroom sink because sometimes I just need a few seconds of me time.
ReplyDeleteNo one has a right to judge your journey. Ever. We can love our kids and still have personal needs. WE ARE HUMAN. And we all need to regroup from time to time. My kids are 21 and 19 and when I didn't take a break, I was a very unhappy person and I began to resent everything about my life, even the good things in it. Anytime you can steal, beg or borrow, please do it before you crack somebody upside the head. ;-) Love -Karen
ReplyDeleteI wish I had a solution or some great advice. I can only say “I understand”. My situation is at a different stage. My son is 21. He’s verbal and considered high functioning. He is having the HARDEST time transitioning to adulthood. He’s struggling in remedial level college courses at the community college. He’s struggling to get a driver’s license. He’s struggling to find a job. My hubby and I love and support him unconditionally. We try so hard to stay positive and to put on a brave face for him. The truth? Some days autism just “breaks” me. Every single day I worry about what will happen to him after we are gone. Every. Single. Day. It’s perfectly ok to “crack”. How can we NOT? I hope you realize just how many people you are helping with this blog. It makes us feel less alone.
ReplyDeleteI actually just switched my antidepressant to one that also deals with anxiety. It’s jusy so much all the time. I’m also a full time middle school teacher and, oh yeah, a wife and me! Sometimes all we can do is binge coffee, chocolate and ugly cry to deal with what’s on our shoulders. We’re doing the best we can but the reality is, it’s never enough and we just keep cracking. ❤️☕️��
ReplyDeleteI totally understand what you are saying and coming from. I can’t remember the last time I had a break. No I can’t just leave my child with just anyone or even family. Right now we are working on his sleep schedule. Trying to get him on a sleep schedule that is I guess what you would say normal. He now wakes up at 3:00 pm and is up till 5:30 am. Now we are working on getting him to bed by midnight and waking him up by noon. It’s extremely hard because this is a routine change. And yes he talks about it a million times a day. So let me tell you Mamma Fry you are awesome and doing everything right. It’s not easy all the time. Our son is 20 now and yet we still have challenges all the time. Again you are amazing and doing a great job with kiddo. You deserve a break but I know how you feel about that. I also feel guilty if I want to take a break. We Autism moms are the best and need to stick together so we can get thru the tough days and share the great days. Please hang in there. I am. Big hugs �� for you.
ReplyDeleteI'm a single parent of a 20 year old. A family member told me I worry to much, but how can you not! He has seizures really bad so if he's away from me my phone is charged and a permanent attachment. I've buried my feelings because if Mommy is upset he is. My memory for anything is in the toilet! It scares me how I can't remember things. I believe it's from years of stress. I do worry if he's with someone else simply because he hears my voice if he's in a meltdown. A few times I have gone to a movie. This has kept my mind busy and my only form of escape. However, this happens so rarely. I have found comfort in your blog and the comments posted. While I have no answers for you, I hope you find comfort in my comment that you are not alone. You are a great Mom always remember that.
ReplyDeleteWow. I can relate we don't have any sitters. I've got two boys with fragile X syndrome and one has autism as well. They feed off of each others meltdowns sometimes. My husband just hollors feel like he doesn't except our boys. So everything that happens its your kids or he goes off on me. We have four children 2 girls and 2 boys. But my only break is I work a few hours on the weekends other than that it's me 24/7. A good cry does help. Be nice to have a friend close to go out with and talk to but I have none. Hugs
ReplyDeleteSuch a handsome young man!
ReplyDeleteCan you hire, beg, or borrow anyone else to come into your house for a couple of hours? Just to make sure that kiddo doesn't get into trouble so you can go take a hot bath. Keep him home with his preferred routines, and you are physically present, but unless their is blood - leave you with some time alone and pressure free. Ask around therapy and see if anyone will come stay for $$ ( if that's an option). If there are peer helpers at school, can any of those kids be trusted to run point if you are still available? Please Momma Fry, you gotta find a way. If you crack, so will he. Love from a mom with a quirky set of boys!
ReplyDeleteYou are not alone, at all. My adult son rants horribly and paces, over and over and over again. It is unbearable. I pray for it to stop. I think its sent me crazy. Virtual compassion sent to you from ranty crazy towers.
ReplyDeleteGlad i found your blog,doing a desperate google search. Thank you, i can get this off my chest.Son Repeating negative phrases on a loop in a horrible purposeful voice over and over and over and over etc and again. Any comment from me and it gets worse if that is possible. Its like torture. I am an autism torture survivor with the only thing left is a sense of humour.
ReplyDeleteI'm with you too. What other job comes with no days off ever? Nobody else other than me (and his fantastic school) can handle my son. It feels pretty lonely sometimes doesn't it? The only thing that keeps me going is trying to look after myself as much as possible while my son's at school: I take naps, walk, meditate and sit in cafes reading! I adore my son and it is gruelling looking after him. Thanks for bringing this subject up. Love to you all
ReplyDeleteI know your boy is in his teens - so is mine. It seems this phase has been the worst of all of the ages - even moreso than the toddler years. At least in the toddler years, you EXPECT difficulties - even with typical kiddos. I have another typical teenager at home, and people always talk about how the teenage years are the worst (and I mean with typical kids). Honestly, my younger son has been a piece of cake, but my older son (ASD) is definitely making up for it. The OCD, the noise, the hormones, - it's exhausting, draining, depleting. I pray for strength and patience every day. And most recently, I have amped up my time to read. Just for myself. It's a little escape - even if it's just 30 minutes a day. I sit outside where it's quiet and just escape. Sending you hugs!
ReplyDeleteI don't know what to say other than everyone needs a break from time to time. It's normal to need some self care time. I think it's healthy for the long run to listen to the body's signals and plan some self care activities...
ReplyDelete