I love my son but there are moments where I really resent the Hell out of our situation. Autism, you really know how to wear a mom out.
Monday morning. We had just returned the day before from a quick get a way in the woods. (You know, that place without Wifi) It had been a pretty successful couple of days. Even pushed our kiddo outside his routine comfort zone a few times and he really thrived. So I guess you could say I was feeling cocky.
I find the permission slip in his book bag. I remember seeing it briefly before we left but I was in vacation mood and was like "Screw it. Monday Mama can deal with this. Vacation Mama in da house!" It was for an after school pizza party. A fundraiser for a student in his class who has been out for some time dealing with a health crisis. My kiddo loves pizza. He likes his classmates. Despite having autism, he enjoys looking forward to a party. So I'm all "Hey dude, look at this thing going on for Thursday. Doesn't it sounds like a hoot and a half? Maybe like a hoot and three quarters?"
WRONG!! I could not of been more wrong. It was like I was new here or something. I might as well as suggested would you like to have all your nails trimmed. (You're probably thinking "Doesn't she mean nails pulled out?" If you are, you probably haven't tried to give an autistic kid a mani/pedi. Get back to me on that sport after you're done drinking.)
Anywho, back to the monster meltdown over daring to suggest he may enjoy eating pizza with his friends for a good cause. Anxiety is really a heartless bitch. There really is no other way to say it. His panic over it was epic. Parties can't happen at school. (Which is kind of bullshit because it's grammar school. They have parties for ALL THE THINGS!) He can't stay after school because he will miss the bus. Mind you I had just picked him up early from school the Friday before so we could get on the road. (Remember, Vacation Mama was all "Let's play hooky!") There was no explaining it. No social story that was going to talk him down. The kiddo hath spoken.
My husband was like "Babe, forget it. This is NOT a thing to push for." and I knew he was right. In the grand scheme, an after school pizza party. It wasn't worth it. We can't even mention it in the house without tears. So many tears. I am not medicated enough to deal with his anxiety over this.
You know what sucks though? Thursday morning, I can betcha my son will be quick to rattle off that he's going to it. Even though I have RSVPed no. Then I get to deal with a meltdown over the fact that I was trying to prevent a meltdown. It's a meltdown within a meltdown. It's like meltdown inception. I cannot win. Here it is Tuesday and I'm already mentally preparing myself for Thursday. Tuesday Mama is going to the wine shop later. She knows Thursday Night Mama is going to need a big bottle of Pinot Nior.
I just got back now from his little recorder concert. As some parents may know, the recorder is an instrument invented by Satan that all third grade music teachers like to spring onto parents. Up till now, my kiddo has always enjoyed performing any kind of music. He's really rocked it before. Today, well it looks like anxiety crashed the party again. He cried and scripted the entire time and because of it, so did I. (Well the crying. Scripting lines from various Real Housewives series really wouldn't of worked here.) I couldn't get to him without making a fuss. His teacher pulled him out for a bit but that made it even worse. Damned if we do, damned if we don't. I barely held it together walking out of the school. My husband said bravely "On to the next thing." He's right again. Really, all we can do is move forward.
I can't help it. Sometimes this really just sucks. I hate that I can't stop his anxiety. I hate that it seems to consume him. I hate that sometimes, despite all my best efforts, I still can't help him feel safe and secure. I resent the way I feel because I know there will be so many times where his autism will absolutely amaze me. Right now though, I'm just having a very hard week celebrating his neurodiversity.
I am 32 years old and spent 20 minutes locked in a Jr High girl's bathroom stall crying with my almost 4 year old son Saturday. He is a cancer survivor and we signed him up to be a fun little 1K fundraiser benefiting 3 girls each fighting childhood cancer. He has been doing great at his preschool with interacting and participating, so I figured if he walked with an older cousin he adores it would be fine. Not even close. Major meltdown for both of us. You are right, some days it just sucks. Hoping tomorrow isn't one of those days for either of us.
ReplyDeleteWe've not had a lot of success with this type of extra-curricular activity either. What I find helps my son's anxiety is giving him as much control over the situation as possible. Upcoming music performance choices: skip it, go and watch, go and participate but is free to leave at any point during the performance. As for the pizza party, I would have RSVP'd "maybe" and then worked on a social story or something similar to help with anxiety. Example: Instead of your usual routine (insert specifics), you can stay at school and go to the pizza party in (insert location) for (occasion). Your teacher, classmates and a few parents will be there. If you need to leave the party, you can call home/wait in another quiet area/etc. That way he knows what to expect and what to do if the situation is overwhelming.
ReplyDelete"A meltdown inception"......what a concept ;-). I'm with hubby, pick your battles Mumma. Our kids are as unpredictable as they are predictable. One thing I've learnt over the last 16 years is that they often just surprise us where we least expect it. Those times mean the most and build hope.
ReplyDeleteSometimes you just can't win. No Behavior analyst has the answers, you just can't win. I have seen so many "My Autistic Kid Pulled Off a Fabulous Performance at the School Concert" blog posts and while I understand their joy, it hurts my heart when all I can remember is the school performance that SUCKED BIG TIME! So thank you for sharing the times when you are not so thrilled. It made me feel less alone.
ReplyDeleteTrue it is comforting to read the whole truth.
DeleteMy five year old "only" has sensory processing disorder, but I can relate to your feelings of dealing with, well, everything sucking. Our son's school had their Olympic Day this past Friday. I knew it was Friday, but did not know it would begin right after I dropped him off. He asked me to stay for it; I did. I walked around, hoping, praying, begging (in my mind) for him to participate. When he did not initially, I was not surprised, but I still found myself on the verge of tears. Why? Seeing him around all the other kids really emphasized how much social anxiety he has. He gradually warmed up and tried a few of the ten events, thanks mostly to a classmate's dad and a few of the high school student volunteers. I was so proud, especially when he declared that he could/would do two of the last three events on his own, yet I was so sad when he started slowing down halfway through the race at the end and stopping before he got to the end. Why did he do that? People were cheering him on. He crossed the finish line in tears. He then had a meltdown soon after because I took a bite of his snow cone. People were staring, his classmates, who had never seen him like that, were staring (I swear, the kid saves all his meltdowns for me!). I was mad at the situation and we left quickly (the kids could leave school after the event). All I could think about was the blasted meltdown, not how much he over came his fears and tried new things in front of a lot of people. *sigh* Today, he came home with a medal for good sportsmanship. One kid from each class received a medal, and my kid, the one who struggles daily, got it. It made the sucky feelings, well, less sucky.
ReplyDeleteMy daughter has SPD and social anixety, too. I know this is a simplistic question, but what color was the snow cone? Within the last few months, we have very slowly come to realize that whenever my daughter has Red 40, Yellow 5 or Yellow 6, serious mood swings--depression, rage, extreme anxiety--kick in in about 40 minutes, and dont stop for about 72 hours. Man, it took us a long time to put two and two together, but once we figured it out, things have been so much easier for all of us. Just a thought...
DeleteThis is as perfect as the guilt trip blog.... love love love..
ReplyDeleteWell I'm right there with you all and so glad there are other parents with daily struggles to learn from . My daughter is 11 and when I picked her up the first thing she says is " I had a good day and stayed in my classroom all day and didn't have to go to the office. Mrs. Barker ( asst. Principle ) said she was so proud of me!
ReplyDeleteShe is smiling from ear to ear. These are things we celebrate because tomorrow may be a different story.Love reading your posts.
Thank you for saying this. I had a bunch of santicmommies jump on me on a facebook parenting thread because I dared to say special needs moms work harder than moms of typical kids. I think people expect us to always be walking around like saints in wide eyed wonder of our special needs kids and never get to be frustrated, stressed, overwhelmed or depressed about it. But they on the other hand can complain and whine for their problems that to me seem inconsequential. Funny how it works that way. It is okay to be real. It is okay to be honest. It is okay to think it sucks and be upset about that. I have twins and one is typical and even genius level smart. So I get to see both sides and yeah, if he was my only kid I would really have nothing to complain about (except his food allergy). So I really have little patience for them telling me I can't be frustrated or they have it as hard as me. Because sorry, you don't. You worry about will you be able to get a good clear picture of little Johnny playing his recorder and I worry about will my kid turn into a tantruming mess on stage. Not the same at all.
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ReplyDeleteOur oldest autistic son once had the opportunity to meet his hockey hero, with a group of other kids with autism. He was happy & excited and when the moment came he ran into the washrooms and locked himself in, crying. My mother had died 2 days before & I wasn't at my strongest but I had to coax him out. He appeared just before the player left & got to meet him then suddenly shouted "Sorry your mums dead" at me. Some days Autism just sucks. But on other days a single smile can make the world a perfect place. Have a couple of glasses for me :)
ReplyDeleteI'm sorry that really sucks, to be honest while reading it?
ReplyDeleteI think he has been over threshold most of the week. As you said earlier you did a camping thing. He had a lot of fun and seemed to thrive even got pushed passed his boundries. I am thinking this is likely related. He has likely used up all his spoons on that trip, I especially if you suddenly stung skipping school on Friday for it. So I think the pizza party suggestion may have caused enough anxiety to push fully over threshold. Growing up I have had this happen a lot. Still to this day it happens. I spent. Great weekend with friends recently was happy had fun exc but when I got hope I crashed hard the smallest things, even suggestions of things I like doing set me off for about a week. As a kid I would have a meltdown if I got inveted over to someone's house to many times (once every few weeks) for a period of Tim. This included people I considered friends. In fact a boy kept asking me to come over so once and every time I went home and cried because I felt like I had to go even if I didn't want to. So I started hiding from him. Anxiety sucks, really sucks so my best guess he needs some decompressing time of his own, which likely means routine and possibly not having unexpected stuff. Could you call and say he might attend the thing?
I am not saying your a bad momma, infact that camping trip sounded like a great thing!mim just giving insight to the after camping meltdowns even for things he typically enjoys or does well in.
Cheers to all that, Mama Fry!
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