I hadn’t realized it had been so long since I’d done a post. I guess it’s because I was/am still having difficulties and I get tired of hearing myself complain, so I just keep quiet.
King Ben is still having a hard time at school. The district Special Ed supervisor has had people observing him all week to write up a new “Behavior Plan”. This is plan is to give him the supports he needs to stop him from eloping or hitting, kicking, etc. They realize the ” behaviors” are a result of avoidance or frustration. I just feel bad for him. We were able to drop his Behavior Plan after he was moved to this school last year and it makes me sad that he’s having such a hard time again. He refused to get on the bus to come home a few days ago, so we had to go get him. This new bus driver is part of the problem too. She can’t seem to stick to a schedule. It’s a rare day that she’s on time. She’s generally between five and twenty minutes late. Kiddos like King Ben don’t do well with sitting and waiting. They like their schedules. It’s what keeps them feeling safe.
Another thing that may be upsetting him is the stress level here at home. September is always a difficult month for us financially. With his mama taking time off from work to help with him while school is out, her income gets cuts by almost seventy-five percent. Then, having him home all day is an added expense in the very few foods and drinks he’ll consume. Then there’s the little treats to try to entertain him since we’re still afraid to take him places. He weighs about ninety-five pounds and is four and a half feet tall. He’s a big boy. When he decides he’s gonna run he’s fast too. We’re terrified of him taking off and getting hurt or lost. It was getting better but we’ve had a set back. Anyway, mama went back to work when he started school but she doesn’t get her first paycheck until the twenty-fifth. So, we’re super broke and super stressed. I’m sure he feels that.
Just to add a little more stress, someone brought kooties aka a head cold to the house. We’re a sharing family, so it’s making the rounds. King Ben, being non-verbal, can’t tell us if he’s not feeling well. Plus, he’s got an incredible pain tolerance. In the past, we only found out he had ear infections when his eardrum actually burst and fluid leaked out. So he could be sick and feeling yucky and show no symptoms but irritability. We’ve all been feeling yucky and that reduces our patience. Not a very fun house lately.
At least the heat seems to finally be over. Those upper ninety and triple diget days were pure torture. The high pressure that goes along with the heat makes Ben agitated too. Hopefully, with the cooler weather, he’ll be feeling calmer.
He’s also been waking up at two, three in the morning and staying awake. Of course once Ben is awake, everyone is awake. He makes sure of that. Playing quietly is NOT something he’s interested in doing.
It’s been rough. I’ve been teetering on the edge of depression. I’ve been dx with clinical depression twice so I know what to watch for. I’m lucky that it’s not a constant chemical thing but a life thing that can disrupt my chemicals. I noticed the sudden bursts of tears and the other little warning signs that my chemicals weren’t happy and I needed to take better care of myself. So far, I’m okay. Hanging in there. In my mind I’m a twenty-something, fit, strong person. My body reminds me that the truth is that I’m an almost fifty, fibromyalgia disabled, worn out person that needs to slow down before I blow a fuse.
So, yes, I’ve been a bit absent. I’ve had a lot of unpleasantness and I hate complaining all the time. I’m doing okay. Treading water, keeping my head up… I’ve been through way worse and I’ll get through this. And I know if things get too rough for me I have a bunch of awesome people right here to support me with their love and good wishes.
Oh, the parrots are back again. Maybe things are on the up swing.
King Ben's Grandma 
I’m sorry to hear you’re having a rough go of it. Hopefully things get better soon. Alas, this is why we need better support systems for children with disabilities because public school systems fail in epic proportions in this regard. It’s sickening but what can you do?
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The schools really do need improvement. That’s not likely to happen with DeVos unfortunately. At least everyone is trying to support him. We’ve just had a lot of Murphy’s Law type things happen. We’ll keep our fingers crossed and keep putting one foot in front of the other👍
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Oh don’t get me started on that bitch. Just don’t.
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Yeah, I know how you feel! I try to avoid thinking about any of those…I don’t even want to call them people.
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Oh my Dearest Dude, I ache for you! I promise (not a word that I use lightly) that if I were geographically closer to y’all, I would come over as much as I could and hang out with you and your family. Omg there are so many things I want to do – hang out with you, hang out with Ben so that you could catch a break, give him an iPad so that you can have your phone back, and hug y’all a lot!! Does it partially count if my desires are only in virtual form right now? 💚💙. You are honestly one of the kindest people I’ve ever known!! Is there anything I can do to help?? 😘😘💖🌟💖☮🖐🏼💪🏼🌺💚🐱🐛🐾🍀🌹🌷🌸🐉☄✨🎮👾🌈🌴🌵💌💗☯❣💟
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I know if we lived closer we’d get tired of seeing each other all the time 😝 Your loving thoughts and desires count more than you can imagine!! 😍😍 Things will improve. I’ve already decided to skip my yearly trip up north for my NHL game. I’m going to get the King a tablet and internet with the money instead. My yearly settlement check comes October 1st so there *is* a light at the end of the tunnel.🚇😏no it’s NOT a train😯😆
For whatever reason, the powers that be (god, higher power, whatever) have decided that my life is going to be full of challenges. It definitely helps me relate to a lot of people.
You are my Dearest Dude and the sister I never had. Knowing you’ve got my back and sending love is a big help!!💖💞💌💌💪😍😘😘💝💟🌸🌻💐🌺🍀🌟🌠🌞🌈☯☮
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Awww! Totally, Cosmic Sister! I’m so excited for you that you’ll get some relief (at least financial!) soon!! Hang in there, my lovely! You got this! The feeling is very mutual, girl! Just knowing you’ve smiled and knowing you’re going to be ok in the near future is huge 😘😘🌺💚🌺🌴❣💟🌈💌😎🤗🐒🍄🌟🍻🎳🌆🏞⌛️🎉🎊💞
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I’m sorry to hear that things have been piling on top of you recently. Those sudden bursts of tears – yeah, I know about them too. At least it sounds like at the school they care about Ben and are trying to help. But that bus driver sounds irritating. Never mind if your passengers are kids like Ben or not, buses are supposed to be on time, period. Seriously annoying when you can’t rely on that sort of thing. 😾
Perhaps the parrots are a sign of better times? 🐦❤️🤗
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The parrots coming back made me very happy and I’m hoping that they are a sign of better times coming! Yeah, the bus driver is causing problems here and at school.😤 They change routes in Nov or Dec so I don’t think it would do much good to try and get a new driver until after the route change. Hopefully we get a better driver. If not, well then…. King Ben’s Grandma will just show them her “take no prisoners” side😈😧👍
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Oh no….So much stress! Geez, I wish I was there to help out. The school, the bus, the SLEEP, the sickness. That is all just too much to be happening at once. I am glad it is cooling down and the parrots have returned. Thinking of you and hoping that with each day something positive happens. That each day brings some change towards the good so that things become easier – for you and Ben. Sending tons of love and well wishes!
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Thank you as always for your support!! It would definitely be nice to have friends close by that *really* understand the challenges!
I’m enjoying the cooler weather for sure and I’ve been running into the backyard at sundown yelling “parrots, parrots” as they circle overhead.😏 I’m hopeful that the worst is behind us and we can settle into a routine of the *regular* problems…like not having Doritos 😧😜
Sending hugs and love to you! I hope things are still going good for you guys. 💌💌
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I am sorry that you are having these problems. It is so frustrating when some people don’t understand the importance of routine and schedules for someone like Ben. My heart goes out to you – you seem such a strong person – your grandson is lucky to have you on his side xxx💖
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Oh, Gran, wish I could do more than wishing you all the strength and patience you need 🤗🤓 Try eating well and rest as much as possible. 🌹🌹🌹
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The eating well (or at all) is something I *do* need to get better at! I forget to eat all the time, then I grab snack food or microwave junk. I just made a pan of enchiladas and a bunch of red beans & rice though so I have good food I can grab quick!
I wanted to tell you also that you put a smile on my face in one of your comments. You mentioned the movie “The Fifth Element”. It’s one of my favorite movies!!!😀
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Sweet Gran 💐
Luc Besson is one of my all time favourites 🤓 because as you noticed, many if not most of his characters display clear autistic traits 👾
As for food and nourishment, remember that for King Ben, you are his lifeline, not of much help if weak 💐🤓🌹💐
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Correct on both points! 🌟🌼🌺🌸🌹
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Dear Gran, if I have wings, I would fly over and meet you 🐧 🐦 🐤 So thankful for the parrots! I hope October will be a better month, the cooler weather will be something to look forward to. ⛄️ ❄️
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❤
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🌹
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You are a strong woman and your strength is something we admire in you. We are sorry that Ben is having challenges in school. Thank God he has you to be such a wonderful advocate. Depression can be very difficult as we can attest too. Please be gentle with yourself and try not to look to far ahead. Today has enough to deal with.
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