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Now Reading: A ROUGH Memorial Day With A FREE Meal Thanks To Autism :)
It’s 8:41pm on Monday night and I can hear the neighbors behind my house still partying & enjoying their Memorial Day BBQ. But, me, I’m sitting in the dark in Kyle’s bedroom thrilled that I got him to sleep already so the wife and I can watch tv and relax.
It’s been a long, extremely rough, crazy, and exhausting Memorial Day… with a little guilt thrown in.
I’ll get to the guilt first… I feel guilty complaining about Kyle’s bad behaviors because we he has a day or two filled with big seizures and long naps that often follow big seizures wifey and I often wish for & long for things to get back to “normal”.
“I’d much rather him be acting crazy stimmy or hyper or even hitting over all these naps” we often say…
But then we have a day like today and I was BEGGING for a nap…which makes me feel guilty… I was obviously not wishing a seizure of course… but a good old fashioned nap would’ve made the day a bit more manageable / broken the day up a bit.
So why was the day so torturous?
I also don’t think a nice gesture like this needs to “go viral” and be shared around the world.
until it wasn’t anymore… 🙁
Anyway, hope you all had a better day!
Goodnight all!
THE END
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Written by
Frank CampagnaI’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).
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46 People Replies to “A ROUGH Memorial Day With A FREE Meal Thanks To Autism :)”
Do you have a plan for summer? I dread summer.
yes we know them days the king sounds like our travis our son is now 15 and its nuts most days we had to put him in a program for some help he started to hurt the wife and me . he is going to be in the program for 6 to 9 mounths please pray that they can help us he is a good boy
totally get you x
Sometimes I feel the same. I just want to run away to a hippie camp and escape my house. HOwever, the difference between you and I is that my kids are 2 and 4 and 'normal'. I want to escape the terrible 2's and the unreasonable tantrums when I say no to a second lollipop. The difference is also my kids are simply going through a phase, when they reach 5 and 7, i know that they would have developed proper hobbies and likes and be able to occupy their own time without my constant involvement. For parents of kids like Kyle, there is no end in sight and that must weigh on you alot. My point is, you guys have it tough and hard and you often write 'i know people have it worse etc'…..and they do, i'm sure, it's all relative, but know I hope you that you have it HARD compared to the majority of parents like me. Stop selling yourselves short…….you have it tough and you're just not surviving, you're giving your kids a good life and are enjoying yours.
Just found this blog. Love it. I love the honesty. I think sometimes as parents we feel we can't be human and vent about our kids and I think it's great when people recognize the need to do so and do it. It helps other people relate and that's what we need most sometimes. Will definitely continue reading!
I LOVE YOUR PAGE! I SO SO Get it. In fact I just came across this post on a friend's page after finishing my blog on my tiny page titled Memorial Day Meltdowns (and I am not just talking about my kid LOL) Kyle sounds similar to my 19 year old son Zach and your life and stories are very familiar. If it makes you feel any better, we had a similar experience while at a restaurant while on vacation..you know how it goes–OK we are going to do this, he is gonna sit at this restaurant and we are going to have a nice family dinner even if it kills us type of evening. During dinner I see Zach roll up on one cheek and realize he just had a blow out….My husband takes him out to the car and I follow—mortified to see a trail of poo has escaped out his pant leg like a bread crumb tail all the way out to the parking lot—-Yep that shit happened (literally 🙂 Hang in there and know you are NOT alone!
Hello,
We are parents of an 8 year old boy nonverbal. We frequently try to get out and have fun pushing the limits. We also have a younger son exactly two years younger than our son dx with Autism. We just had our first restaurant meal paid for. It was awesome, you are right. Our son has seizures too. It is not an easy life at all. Some days I wonder how we are so up beat. I was afraid I was crazy for a while there, but really what doesn't kill you makes you stronger and this experience has been so humbling and spiritual. Keep doing what your doing. Don't give up.
I love your honesty. Some parents of children with Autism walk on egg shells, and act like everything is wonderful, and wouldn't change their child for anything. Maybe for some of them, that is true, but the reality for us parents of children with severe Autism, I can honestly say, I would take away my son's autism in a heartbeat if I could! We love our children, but there can be some really hard days, and sometimes we have to tell it like it is, positive or negative. I really connect with you and your wife. My son is severe….no seizures though. Thank you for being so honest and real.
I can totally relate, and I love the term, "non verbally verbally loud" I am totally going to use that.
I love this blog, it makes me know that my family is not the only ones traveling through life in what I call the Autism Circus. Keep up the great work.
you are not a jerk and you did the best you could with what you had and it sounds like you did an excellent job although draining I completely understand 🙂 here is to a great week ahead autism daddy
Yep, like everyone else, I get it. I also know there are no "magic" fixes. Just keep on keeping on …
I thought we were the only ones trying to find chores to do.. to "hide" from our autistic son.
OMG, I just burst out laughing for the first time in a really long time! Thank you! I so identify with what you just posted.
I also appreciate your honesty. I'm so impressed with how you and your wife work together and help each other out. My ex bailed a few years back and now only sees our daughter once every few months. I'm sure he had a great Memorial Day weekend, I've been stuck in the house with my sick daughter for six days! Completely understand the isolation that you and so many others describe.
I love your blog. I'm a mom of 4, 2 with asd & ADHD you say all the things I can't find my words for. Thank You!
On top of thoroughly enjoying your post and SO sharing your pain, I love the way you anticipated a negative reaction to the note writer's comment about "it made me appreciate my day." and tried to quell any stupid responses. You are not alone, AD.
You and wifey are awesome!
We actually had a breakthrough GOOD experience in public yesterday and now I feel awful because our day could have EASILY been like your instead, and likely will be again before the week is out. What can I say? It's bad and then good and then bad and then good…for-ev-er I suppose. I think holidays remind us how different our lives are than others and we kind of start out the day feeling a little more defeated than usual. Here's to a decent, normal Tuesday!
Oh, I so get it. I've had that day times 3. This year I ran away on Memorial Day weekend and left them with their father. If I'm stuck home with them, sometimes I just lock them in their room – except then I was told that was unacceptable behavior, so now I just lock myself in MY room!!!
Must be something in the air. I feel your pain. Hoping for a better day today. Half term in the Uk and we are on holiday !
Ours was today also. Our grandson, Kyle, lives with us and was dx jan 3rd 2014, with moderate to severe autism.
He was really on it today. Just had to touch and feel the window air conditioner 50 times, would go running thru the house screaming and yelling even after being told we use our quiet voice inside. Then he'd.run back to the air unit, then he'd want the kindle, then he would refuse to turn it down. Between all this he wants chips, he wants to go to bed, He wears us And himself out around 11pm. Then I thank God, he's asleep. It's quiet.
Then I feel guilty for the yelling and screaming we have done to him and ourselves, because
At 3yrs old he hasn't learned how to control his outbursts, his frustrations or his anger. That's also when the resentment of his mother starts again, because she isn't the ons dealing with this daily. We are. Sometimes just don't want t to do this anymore. But, I vet up the next day and start all over again.
I felt truly ashamed of the feelings I have, until I started reading your blog. Now I see we aren't the only ones struggling just to keep it together,and I don't feel so all alone.
Post-note: Kyle will begin behavior therapy June 10th 2x a week.
I'm the father of two autistic boys. Today is my youngest one's 10th birthday. Our plans was to go to the water park and ride the water slides. Before we could get out of the house, my oldest, the 14 year old, decided to have a episode, hitting himself in the head, throwing things and peeing on the floor. I decided that he was staying home with mom, as this was my idea and our birthday boy didn't have to do without because of his brother. When we finally got there, only a few miles a way, I realized we forgot the sunscreen so we ran back home. This was very upsetting for the birthday boy. I told him to calm down or we would stay home. He calmed down. We actually have a great time as he's not as severe as his older brother. The hardest part was getting him to wait in line to get wrist bands while we stood in an arcade. He didn't wait for me and ran back up to the waterslide so I just waited until he lapped me and we went together. After a few hours of waterslide we went and played miniature golf. I almost had a wet birthday boy when I accidently hit the ball into the water with the alligators. They gave us another ball. Trip went pretty good. When we got home I found out my oldest decided to drink a whole 2 liter of Sierra Mist while we were gone and then threw up! We've been in the same place you were today, but we have two boys and no one ever paid for our meal! Hope you have a great day at work!
Our rough day was yesterday. Our son kept trying to elope from Grandma's backyard while the rest of us were trying to have a cookout. We always have to take separate cars to these things because someone ALWAYS has to leave early to take our son home (usually my husband, 'cause he'd rather be home anyway). It sucks feeling like you can't go anywhere fun because you get exhausted from just trying to entertain/contain him. I love him to pieces but I really wish he enjoyed doing stuff with us.
My son's been building up again. I'm stuck at home with him and both our dogs (not to mention the house is a total wreck). Since last Wednesday, he's 'been saying he's bored. Even the dogs are acting like jerks. I started online classes this past January. Needless to say, this summer has already gotten on my nerves. Tonight, I told my husband that I've reached my stress level point. He said, "I understand." I let him know, tonight, that he does NOT understand. He works a job that has him away from the home 2 or 3 days at a time (even though he's home 2-3 days at a time). He gets away from it all. I'm stuck with everything…all the damned time! Where the hell is my break? Na….I don't think you're blog was rough or anything bad at all. All of us parents need to vent.
Have you tried SCD or GFCF? Our son has greatly improved his verbal speech, seizures and accidents to nearly non-existent. Read Unraveling The Mystery of Autism by Karen Sarousi it was life changing for us… also there are resources. I am new to reading your blog but I am hopeful that you can try cannabis oil if you have not already… it is very effective with calming and helping kids with sensitivities. Also, I have found that my son responds to my nerves and feelings on a very rhythmic and in depth level. Sometimes I think it sets us up for failure because he will sense that I am nervous. I have learned not to be nervous and to relax with meditation and trust that he will know what to do… Have you given your son clay to work with … that helps our son calm down instantly! I hope you don't mind the tips. I know that I listen to people who have found success and our son is a completely different child because of the changes that we have made and he is completely drug free!
He has a post that explains all that they've tried, including GFCF diets.
Hi, what does SCD stand for, please?
You know- one of my greatest guilts in life is that feeling I sometimes get that all I'm ever doing is trying to RUN from my kids for some peace and quiet. This made me think – you know what? I'm not the only one… and It's OK. Thank you.
I love the way you and wifey are such a team. I love reading your posts. They are very real and I can totally relate. –shannon
I love that no matter how awful it went, you write in a way that shows love and compassion with a sense of you better laugh at this… and I do … I loved this post, so human, so true, so free of bs!! And with such grace… thanks… I have thought of my aon as jerky too… love to know more people that can laugh at that… of course once things has passed!
I am so glad I've found your blog! It's awesome how honest you are and it's such a nice change from what I usually see out there. So often you say things I've thought and I can totally relate to many of your family's experiences. Cheers to you!
Hailey
AD, as much as it sucks for you and wifey it makes me and my hubby not feel so alone in this autism world.
I love everything you write. Keep doing it, and keep on keeping on. It's all we can do. Matthew had a meltdown during our Memorial Day dinner out too. I'm whipped. I hope you all have a better day tomorrow!
You and your wife are good people.
I think we have all had those days. Ours was yesterday. Tomorrow is a new day.
Jen
Hang in there! Lots of us know how you feel. I love how you describe things about your son. Even when you're down, your live shines through. 🙂
I know what you are going through man. Don't trip its not jerky. I wish my daughter would take a nap or go back to school or do something beside hit me…lol
This post made me laugh! Sounds like my day as well! Enjoy the rest of your night!
I think this is my new favorite post by you-I'm sorry Kyle tried your patience-but-you guys handled the day the best way you knew how.With autism parents super human streangth.!!Hang in there you guys.Enjoy the rest of your night.
Nope! I feel you. It was a rough day. Here's the thing that I am discovering, as my boys are not teenagers. Just because they have autism doesn't mean sometimes they can act like jerks. True certain behaviors can be their way of communicating. But what they are communicating is typical of any kid, I don't want to do what you want me to do! I want to do what I want to do! Only we can't punish them for just being shitty because they feel like being shitty! Have a cold beer tonight. Cheers!
I feel your pain. You forgot to add how much it sucks that all your neighbors were having a grand old time at their BBQ while you were isolated from the world. At least that's how I feel. And my child eloped, thankfully only to the yard. Our jerkiness was his father saying we should buy invisible fencing 🙂 lol
Is there something someone can do to accommodate your family so they can hang out with you guys? Like, is it easier to be at your house? A park? I'm curious because I don't want to shut out a family simply because I don't understand what's helpful.
The isolation is what gets me the most! No one really wants us around, and the few times we are invited to something, we can't really socialize because we have to be on top of our girls to make sure they don't wander, or put things in their mouths, etc…
I truly feel what you and your wife through. I truly dread weekends and long weekends are the worst, yet today was ok. enjoy your night!!
If I write I get it will you get it?
Today is my daughters 6th birthday. For about 6-7 hours today nothing could make her happy. To say she was jerky would be an understatement. I don't cry anymore at these things I just go along because I try my best and that's all we can do.
So I get it. I just wish I didn't.
im not an autistic parent but i can guarandamntee you are doing the best you can do stay strong sweetie and remember to breathe every now and then 🙂
Mother of an obnoxious 4 yr old